

Mending Matthew

By

Della Grant

Published by Della Grant at Smashwords

Copyright 2012.

This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you're reading this book and did not purchase it, or it was not purchased for your use only, then please return to Smashwords.com and purchase your own copy. Thank you for respecting the hard work of this author.
Prologue

One of the most depressing things about living in a gritty area of the city, is watching the children. Rather than play, they simply roam across concrete and bitumen. In my inner-city neighbourhood of Sydney, in the late-Eighties, I regularly found hypodermics discarded in the one tiny local playground. In the house on the corner, a man was shot dead by police, as one scene in the ongoing tragedy of racial violence. I once saw a boy, no more than eight years old, being wrestled into a police car. The generalised anger and alienation was palpable in the air around us.

My husband and I decided never to have children and subject them to this terrible world, and he took the appropriate permanent measures to prevent this from happening.

We moved from the city to a rural acreage in Queensland, and suddenly, the air seemed cleaner and brighter. We were surrounded by green space and wildlife. We decided to foster children, knowing that there was a huge need, especially for people who would take "special needs" kids. Once we started, we discovered we loved nearly every minute of it; and that we were quite good at it too.

So, buoyed with confidence and optimism, we reversed our decision and our vasectomy so that we could have both biological and foster children in our family. The biological part did not pan out well, although I managed to stay pregnant with quadruplets for about two months. While disappointed, it did not devastate us as it tends to do with other couples that fail at the In-Vitro Fertilisation programme, because we were lucky enough to have children in our lives anyway. Besides, I am a fatalist - it seems to me if we were raising quads, we would not have the two wonderful sons that we have. Plus I would probably be in a rubber room by now.

We have had fourteen children over a period of seventeen years: some for a few days only, some for several years. Some have had disabilities, some were able-bodied; and they ranged in age from six months to seventeen years. What an experience, what a ride! I doubt whether many biological parents have experienced the challenge and diversity that we experienced within our family.

Each of "my" kids deserves their own story to be told, but I will start with one who is still with us and whose early life encompassed such pain and abandonment that he should not be alive. In my thirty-odd years of working in the disability sector, I have never encountered a child who has beaten such incredible odds.

Nature has heaped cranio-facial deformities, brain damage, medical problems, learning disabilities and behavioural issues onto this one child, as if testing the absolute limits of a human baby. His life, from the first impossible breath, has been one of such struggle that most people cannot even begin to imagine.

The journey that he and I have made so far has been wonderful, frightening, exhausting, exhilarating, painful and even hilarious. I think that he has survived it better than I have. For me, it has been a battle for a child's right to live the best life he can, despite nature, politics and the medical profession. The journey is not yet over.

This kid drives me nuts. He is the most stubborn creature on two legs, he is annoying, egotistical, demanding, defiant .... and through all that, always amazing.

Always Matthew.

Chapter 1: Initiation

"Do you still want a baby? Is two too old?" the caseworker sounded like she was smiling on the other end of the phone. Was she kidding? It was a done deal before I told my husband, Trevor, and even before we laid eyes on the baby.

After ten years of being foster-carers to a multitude of little damaged lives, we were finally going to have the opportunity, the privilege, of parenting a child who had miraculously escaped abuse at adult hands. Or so we thought. We did not realise then that terrible damage can be done in other ways too.

My husband and I had been together for thirteen years at that time and had decided not to have children of our own. After a change of heart, and six abortive and devastating months on the IVF programme, we gave it up with relief and went home to enjoy our foster-children: fourteen of them over time. We live on a small acreage nearly thirty kilometres from a tiny country town in central Queensland - an ideal place to raise kids and animals.

Trevor had come to Australia from England decades before, with Romany ancestry and upbringing. I am third-generation Australian, a city girl transplanted to the country, and I still suffer from symptoms of transplant-rejection from time to time. I have bipolar disorder, and I still believe my husband is a masochist for wanting to live with me. Our relationship is good, and we are friends and workmates: partners in most things, which is so much more than I ever expected in my life. Such long term relationships are almost unheard of amongst people with my level of disability.

We met in nineteen eighty-nine, while I was running a programme in Sydney for young adults with physical disabilities: I hired him as our bus-driver. He was the best driver we ever had and the clients adored him. One evening I invited him over to dinner to say "thank you" for some work he had done on my car. Having experienced my cooking, he decided I was on my way to starvation, so he never went home!

"Um. ... I need to tell you something," I started, nervously. "I have a problem..."

"Yes, I know – you can't cook!" replied Trevor, wrinkling his nose in the direction of my kitchen.

"No, not that problem ... I've had manic-depression since I was a kid," I rushed it out. "It's called Bipolar Disorder now ... you know, mood swings, that sort of thing."

"Everyone has mood swings," Trevor seemed confused.

"Well, it's a matter of degree really ... when I was really depressed, I used to hurt myself ... try to kill myself ..." I trailed off, embarrassed. Trevor looked appalled. "It's okay, I haven't done anything like that in years, but you need to know ..." I thrust a brochure into his hand. He scanned it minutely, and I held my breath.

"I don't see that this makes any difference," he announced finally. "You are still you, and that's all that counts."

"Sometimes I might not seem like me though," I warned. "As long as you know it's only temporary." He nodded and smiled. Relief flooded me. I dreaded this conversation, with my long history of sabotaging relationships when I was unwell.

"I get high sometimes, too, and do really dumb things ... say stuff I don't mean," I added, to be sure he fully understood. I explained about the medication I took, especially the lithium.

"I guess life won't be dull then," he observed, dryly.

"We bipolars are never boring!" I retorted. And time proved me accurate.

Trevor's younger brother, Richard, was born with Spina Bifida and Hydrocephalus. In the nineteen-fifties, treatments were not sophisticated enough to keep this little boy alive beyond the age of seven. Sadly, Trevor's childhood memories are tainted with that terrible loss.

My involvement with disability began when I was fourteen, and I found an after-school job helping a wheelchair-bound woman around her house. This experience, combined with my own personal journey through adolescent-onset mental illness, created within me a passion for social justice.

With both of us having long-term interest and experience in the field of disability, our stated preference when we began to foster was for children with special needs. Then we realised that all foster kids have special needs. The scars were external, internal, or often both, but we never met the myth of the "normal" foster child. All had been damaged both by the situation which brought them into care, and by the child protection system itself.

At the time of that momentous phone call from the Department, we had been caring for our older boy, Tim, for eight years, and had managed, against the odds, to successfully adopt him after nearly five years of trying. Tim was, and is, severely autistic, intellectually disabled and epileptic. He is also totally non-verbal, and was so terribly abused in his early childhood that I have never seen a more vulnerable human being in my life.

Tim is Indigenous, with his biological mother coming from the Kalkadoon people in Western Queensland. This was the reason we had so much trouble with the adoption: we are so politically correct in this State, that it is apparently preferable for a child to sit in an institution for its whole life than to be fostered, adopted or even just cared for by parents of different racial origins. It took the direct intervention of a prominent politician to achieve adoption.

That portentous voice on the phone - a worker who had known us for the whole ten years, and who had given us tremendous support over time, informed me that the baby had "some problems". Nothing was insurmountable, I thought. Vaguely, I heard "small jaw, tracheostomy, developmental delay" but that did not sound so bad. She also explained that the biological mother was Indigenous – a Koori woman. What the hell, we had done that before, hadn't we? We hurried into the large regional town, ninety kilometres away, to the hospital. I remember my heart pounding so hard that I had trouble breathing as we ascended to the Pediatric ward in the lift, and I thought that if I collapsed, at least I was in the right place!

I will never forget our first sight of him .... a tiny gnome-like creature, with stick arms and legs, and the face of a little old man, but one with the hugest blue eyes that I had ever seen. Looking at him, I realised what "short jaw" meant exactly - it meant no lower jaw or chin visible whatsoever. Jutting out beneath where the chin should have been was a plastic tube: the tracheostomy.

Just as we were getting used to seeing that alien object protruding from his neck, a nurse brought in what I later came to know as a "bolus" feed: a tube plugged into the Percutaneous Endoscopic Gastrostomy (PEG)in his stomach, with a large syringe full of what looked like milk on the other end. In fact, it was a special formula - a whole dietary food called Pediasure. The child was unconcerned about this inconvenience, and continued to play and interact with us. Although he could not speak, due, we thought, to the tracheostomy, he was sociable, engaging, and seemingly very bright. Of course, we fell in love instantly.

Subsequently, we were gradually filled in on the details. Matthew had been born with major medical problems and cranio-facial abnormalities, not just a short jaw. He had a bilateral cleft lip, a cleft palate, laryngeal clefts, micrognathia (small jaw), aglossia (no tongue), a malformed epiglottis and airway, heart defects and renal problems. Basically, the lower half of his face was missing.

He had spent the first two years of his life in hospitals, had had several major surgeries, and, prior to the tracheostomy, had regularly stopped breathing. To this day, we still meet other parents at various outpatient clinics who describe being ushered out of the Pediatric Intensive Care Unit while staff resuscitated the baby Matthew, and I go cold at the thought of him not being.

During those two years, Matthew had undergone surgery to repair his cleft lip, the two holes in his heart, to create the gastronomy, and the tracheostomy. He had several other smaller procedures as well.

By the time we met Matthew, he had developed a chronic Pseudamonas infection in his lungs and airway, quite common in people with tracheostomies; and was severely malnourished and underweight at eight kilograms at nearly two and a half years of age. He had spent approximately three months at home with his biological family, which contained nine children altogether. Despite their love for Matthew, they had a severe shortage of resources of every kind. The parents felt unable to cope, and also unable to ask for assistance, so the situation became critical for Matthew.

We know for certain that his biological parents felt guilty and hurt by their decision to relinquish Matthew into care, however they saved his life by doing so. I cannot even imagine what it would be like to have nine children, more than one with special needs, and then to cope with Matthew's care on top. Although we offered contact to the family periodically for the first three years, most of them rejected it due to their own pain and guilt around the situation.

Although we were in a hurry to get Matthew home and out of the institutional environment, it was made very clear to us that we needed to undergo an apprenticeship period first. And just as well. We did not realise it, but caring for this baby was going to be intensive care nursing, not ordinary parenthood.

The nursing staff on the Pediatric ward was rather mixed in their attitudes towards us as we eagerly fronted up each morning for our tuition. We recognized the old negative chestnut attitude about foster-carers generally, we had the ones who obviously doubted our ability to do the job properly, and we had those who adored Matthew so much that they were overly protective of him, which was understandable given his terribly malnourished condition. So we set out to win them all over. We were consistent, persistent, and keen - we did not have to feign these things, we were impatient for Matthew to come home. We also felt that we were building a strong bond with this small person, who was not going to find it easy necessarily to get used to a family instead of an institution.

"Oh. So you're the new foster-carers," said one nurse, clearly unimpressed. "Well, I hope you last ..."

"Of course we will!" I stated, despite an inner quaking. "Could you show me how much of the suction tube to insert into Matty's airway again, please?" I felt like a remedial student, and she sniffed.

"Any more than this and you'll choke 'im," she responded, demonstrating a length of about six centimetres. I imitated her movements, and she gave a reluctant nod of approval. The suction pump hissed with satisfaction.

"I suppose anyone has to be better than that mother of his ..." the nurse walked out, her misgivings obvious.

When Matthew was finally discharged, this particular nurse handed me a bag of baby-clothes outgrown by her own son, and an envelope of photographs of Matthew at various stages of his difficult babyhood. These nurses all cared so much about Matthew, particular during those tough times for him when he had no one else there. We knew their reservations about us came mostly from their protective instincts.

Our expertise with tubes and pumps increased. We were drilled on preparing his feeds, administering his feeds, flushing the PEG, cleaning the equipment. We learnt about something called "dumping" the hard way, poor kid. Dumping is the effect of putting the feed through into his tummy too fast. This causes a sort of shock to the bowel, as his stomach does not store food, and, in extreme cases, can affect the heart and cause death. I said to someone, "Hey, he looks a bit woozy!" Then I was told. A wave of nausea washed over me as I realised I could have inadvertently killed him. The enormity of what we were taking on began to sink in.

Probably the most daunting aspect of our training was the care of the tracheostomy. We learnt to suction the tube when it sounded clogged. I did not need anyone to tell me the crucial nature of this task. I was also taught to change the tracheostomy tube weekly - a hair-raising activity with a two year old, who I was beginning to suspect, was only perversely alive because at birth, he heard the doctor say that he would not live! This also involved messing around with tapes, which had to be tied around his neck in a certain way - not too tight or it would chafe him, not too loose or it would fall out, which did not bear thinking about. It was my biggest fear in the early days.

Although we had learned cardio-pulmonary rescusitation, and had even performed it on Tim twice, we were acutely aware that nothing would help this baby if his tenuous, artificial airway failed. I had to learn to conquer the trembling of my hands every time I touched the tracheostomy or tube. I had nightmares about it, and replacing it weekly became the single most stressful event in my life.

Nappies were the least of our worries, you would think, but it took me longer to learn to put a nappy on him than it did to become adept at all the nursing care, never having done it before. I spent ages once, while he was still in hospital, attaching the item in question to his wriggling little bottom, just the way I had been shown. Ah, perfect, I thought. Then he pulled himself up by the cot rail, and gravity claimed it instantly, as the child was so thin, his waist was non-existent. The entire ward laughed, children as well, and he did look cutely funny standing there with a nappy around his ankles, as he did that natural thing that little boys do, and I regretted standing so close to the cot. After that, I resigned myself to being the comic relief on the Pediatric ward.

We were passed as competent after about three weeks of training. Towards the end of our apprenticeship, we were allowed to take Matthew off the ward in a stroller, with the suction pump weighing down the bottom tray of our new, state-of-the-art jogging chariot. My fantasies about actually going jogging with the baby like other fit and competent mothers died fairly quickly. Gradually, we increased our outings to outside the hospital. We realised then how little of the world this child had seen or heard. Everything caused panic or hysterical excitement: cars, shops, unfamiliar people. When panicked or frightened he would cover his ears with his hands, something he still does on occasion.

We had a twenty-seater, wheelchair-modified bus at the time, which was fortunate, because an ordinary car would not have comfortably carried all the boys' medical equipment in those days. The first time we took Matthew on a short, experimental drive in it, he shrieked with terror the whole way, hands firmly clasped to his ears.

Before we left hospital, there came the parade of Allied Health Professionals: speech therapist, physiotherapist, occupational therapist, the medical aids nurse, dietician, and still they came. This child was one of the most "therapied" children in history. They waved flags of doom, for the most part: developmental delay, abysmal gross motor and fine motor skills, possible hearing problems, possible eye problems, severe intellectual disability, would never walk, would not speak, and more. I do not believe that it occurred to even one of them that there might be a limit to what new parents could take in. As it was, I was totally overwhelmed. I think that only sheer stubbornness led me to continue.

Apart from the obvious speech issues, I could not see any reason why the other things could not be overcome with time. Fortunately, as it turned out, Matthew felt the same way. Apart from the speech therapist, no one else was interested in seeing Matthew on a regular basis, giving me the first inkling that this child had really been "given up on" within the health sector.

One day, we packed up pumps, tubing, syringes, tins of Pediasure and other supplies ..... oh, and the child, and headed home. We also lugged home a stack of paper - instructions, names and phone numbers. This child needed his own secretary. Initially freaked out by our Toyota Coaster wheelchair-modified bus, his shrieks of panic soon gave way to squawks of delight. I should explain that because the trache, pronounced track-ee, was located below his larynx, he actually made no sound - however, he was always very good at over-acting, probably due to the lack of speech, so we could certainly determine his mood.

We had lavishly - well, as lavishly as our benefits-based budget would allow - furnished his bedroom and wardrobe, as well as buying him toys, a balanced mix of fun and educational, I hoped. We could not wait until he saw them, as we knew he had had minimal access to toys up until then. Also waiting at home were our three dogs, who had not met Matthew, and were likely to deal with his advent in different ways. I was particularly concerned about Mac, my Rottweiler, who was firmly in the role of baby, and unlikely to want to relinquish that position.

Chapter 2: Home

Matthew settled in immediately, although "settled" is probably not the right word: more like - took over the house, appropriated our lives, wallowed in civilian life. After the failure of IVF, I had never expected to feel like a new mother, but this child had the helplessness and demands of a newborn, and more. It was both a blessing and a curse. I used to think that criticisms of older mothers were unfair and ageist, but I came to realise that nature has a reason for prescribing the peak reproductive years to the twenties and thirties, and it has nothing to do with the quality of mothering: I was simply exhausted.

Matthew charged through the front door, and irrevocably changed all of our lives, including those of the dogs, forever. Initially he did this by throwing things, mostly his vents. Vents are the protective, disposable ends which fit onto the tracheostomy tube.

The tube itself was open and therefore vulnerable to airborne irritants, so these vents, cylindrical in shape, fit snugly onto the open end of the trache, acting as filters. They are also known, rudely, as Swedish noses, and they have to be discarded once they hit the floor because of the risk of infection.

An early victim was poor old Mac, who was petrified by Matthew's entrance, and when the child rushed at him, scooting on his bottom, because he was not walking at nearly two and a half, and threw his vent with great accuracy, my big, brave Rotty ran. Motor skills problems, I thought. Hah!

Vents were our first major issue with Matthew. Given their location and Matthew's chronic respiratory infection, one can imagine their contents. Although he was still a baby, and we were not sure whether there was any significant brain damage, we decided to try to teach him not to remove his vent, unless he needed to cough, in which case he was to use a tissue, and certainly not to throw it. We told him that he would go back into his cot if he removed or threw his vent - he immediately did both, of course, and was placed in his cot. After the cot rattling had ended, we tried again and this time, he did not touch the vent until bedtime. So much for retardation, we thought.

To our constant astonishment, we had to teach Matthew the most basic things, initially, things we took for granted babies knew automatically. He did not know how to play: given the time he had spent in hospital cots, his concept of play was solely to throw things to gain attention. Even normal reflexes were missing – for example, a small child, when tipped sideways or upside down in play, will instinctively stretch its arms out, protectively. We had to teach Matthew to do this.

Although Mac, and the other dogs viewed Matthew initially, as an inconvenient trespasser, I noticed within a week that Mac was also protective of the baby. At a neighbour's place, Mac placed himself between the stroller and the neighbour's dog, and growled ferociously, refusing to move while the other dog was there. At that point, I relaxed knowing that Mac would never hurt Matt: the baby might be an annoying intruder, but he was Mac's annoying intruder!

The days were suddenly packed full, with suctioning, feeds - six per day, washing nappies, suctioning, bathing child, playing with child, suctioning, putting child down for a nap, washing more nappies, suctioning ... I did not look forward to the nights either. He slept well, but we did not. Apart from the late feed at midnight, which one of us had to stay up for, we had a baby monitor in his room. I would lie awake and listen to every breath, every cough - and there were many of them. The first time the trache tube blocked suddenly and he was choking for air, we suctioned him, adrenaline pumping, comforted him, then I remember falling apart, a trembling wreck. I learned to hit the ground, running, and ready for life and death action.

Despite being a heavy sleeper with the medication I had to take, suddenly I became a light sleeper, or maybe I simply dozed fitfully for the first few years. I was certainly more tired than I had ever been in my life. We had long before installed a respiratory monitor on our older son's bed, as he stopped breathing a couple of times during epileptic seizures, we had the baby monitor, and then the pump alarm. We had sirens, monitors, and alarms in every room in the house. We still do. We decided to try using a nebuliser, as the mucus he produced was very thick due to his pseudomonas infection, and this improved the effectiveness of the suctioning somewhat, allowing us to relax a tiny bit. Trevor and I became like nurses on opposite shifts, mumbling "hellos" and "goodbyes" to each other as we passed in the hallway.

Then we found out about feeding pumps - why had no one told us before? We had been doing every drop of each feed by hand (bolus). Perhaps it was because they thought that we would not last as caretakers of this child; or perhaps it was because they thought that Matthew would have to be bound hand and foot to have a continuous, unsupervised feed in safety.

We bought a highchair and strapped him in, giving him books to read, and introduced him to our newest resident medical equipment: the Kangaroo pump. Such a marvellous invention: it delivered a specific volume of feed in a specific period of time at a specific rate - it was pure luxury. Although then we had to go out and get an IV drip stand from which to hang the bottle. This had to be placed slightly beyond a two year old's reach, because the pump had lovely coloured buttons and a loud alarm. He quickly discovered that kinking the tube between his stubby, little fingers also set off the alarm.

Those fingers were incorrigible, and required constant watching. We erected barricades in strategic places, put baby locks on drawers and cupboards, and everything breakable levitated up to waist height very quickly. We even had to make a cardboard shield for the irresistible buttons on the television and video recorder. Buttons were magnets, in more ways than one.

Other little things were instantly magnified into major dramatic events, things ordinary babies and their parents take for granted, such as baths. With a tracheostomy, anything like water, talcum powder, aerosol sprays, or smoke has to be avoided as a matter of life and death. Can you imagine trying to bathe a soap-slippery, wriggling toddler while trying to keep his trache above water? There was a new quirk added to our lives each day.

Washing his hair was a nightmare, for obvious reasons. Matthew was hypersensitive to water in his face, particularly in his eyes, so he did not co-operate with the process at all. There was also the fear of water entering the trache and going directly into the lungs: at the very least, aspirating even a drop of water could cause the baby pneumonia. We tried various strategies, but the only solution was for two adults to perform the task together, using careful physical restraint on the child, and Baby Shampoo with a gentle-to-the-eyes formula.

Life had been turning inside out, but I just did not have time to dwell on it. I quit my Doctorate in sociology mid-research, and concentrated on getting this child healthy again. I did not have the time or energy to wash, or even brush my long, thick hair some days. I began to look like Alice Cooper, so I had it cut.... shaved actually. Trevor was horrified.

When we brought Matthew home, he wore a size One, despite being two and a half, but he put weight on steadily - well, that was going to happen with such a controlled diet - and he seemed to be growing normally as well. Within two weeks of his arrival, he started to walk, shakily, with bowed legs, but walking!

After a week of his increasingly-steady tottering around the house, we let him out into our yard to explore, shadowing him vigilantly. He stood still and gazed around him at the rolling hills on all sides, sprinkled with gum trees and dry scrub. I realised it was a new world for him, a child who had never known any sort of freedom at all beyond the indoors.

Our property, founded on what was once a quarry, was a mixture of rough grass, gravel and the remains of various objects, dismembered by large dogs. To the uninitiated, it probably looked rather like a garbage tip, and the terrain presented a challenge for competent walkers, but Matthew was undeterred.

I found an old half-inflated basketball, which had more or less survived my Rotty pup, and pushed it gently towards the baby. Without hesitation, he kicked it with surprising force and a soundless squeal, and it promptly flattened my struggling Gardenia. There was more enthusiasm than balance, and Matthew's legs followed the ball closely, his nappy-padded bottom bounced off the ground. Again and again he kicked the ball, his glee escalating each time. We wondered if he was a fledgling Beckham!

We had begun to teach him handsigns, Auslan – Australian Sign Language, before he left hospital - the first one was for "TV" as I recall, being his only constant source of entertainment in hospital. He delighted in these signs as though he had just been waiting for them all along, to communicate with the world. He learned rapidly, and had a repertoire of approximately fifty signs within four or five months.

But some worrying things were starting to happen: he pulled his trache out deliberately a couple of times during tantrums, which aged us years; and he seemed to want to deliberately hurt himself at other times too.

Once, when Matthew was barely walking, we were at our neighbour's place and my husband pointed out a large meat ants' nest to him, telling him not to go near it because the ants bite and hurt. Matthew immediately went over and stood in the middle of the ants' nest, getting his feet and ankles severely bitten. He was hysterical with pain as we picked them out of his clothes and skin. Yet straight away, he did the same thing again. We could not figure it out at all - was this normal behaviour for a two-year-old? Certainly, we had never encountered it in other children in that age group. We purchased a closed circuit TV camera for Matthew's bedroom so that we could monitor his behaviour with the trache tube.

During those fleeting moments when I could actually think straight, I used to look at Matthew and wonder how such a fragile, damaged child could be so utterly bloody-minded. He never gave up. I truly came to understand his early survival: sheer perversity. He revelled in it, and did not seem at all deterred by the consequences. I found myself admiring his bottle whilst simultaneously stifling the urge to throttle him. Unfortunately for Matthew, he had found, as a mother, someone as stubborn as he was.

My older son, my poor big boy, had had us mostly to himself for three years, with other foster children staying only for short periods. Just prior to Matthew being placed with us, Tim had come with us for a wonderful holiday in Sydney and the Gold Coast. He was seventeen, and we treated him truly as a grownup for the first time. We stayed in Sydney with a beloved friend of mine, Jules, whose beautiful home was full of treasures and reflective surfaces. Tim adores mirrors. My friend fell in love with him fortunately, and allowed him free rein to commune with all the mirrors in the house. At the time of our departure, Tim did not want to leave at all, he wanted to stay with Jules and her wonderful house of thoroughly-smudged mirrors.

Autistic people do not welcome sudden change, or in fact any sort of change. Matthew was an almighty change for all of us, and more like a cyclone in the house than a child. Tim was traumatised, jealous, and disrupted. For a while he became even more withdrawn than usual. But at least he had school where he was sublimely happy at the time. We were never, ever concerned that Tim would hurt the baby, despite what our critics said - Tim is incapable of hurting anyone except himself. We were more worried that Matthew would inadvertently hurt Tim in some way. Fortunately, we have always watched Tim constantly because of his epilepsy anyway. Tim always had sufficient attention from us though, because his needs in all areas are so high. He is dependent on us at all levels and for all activities. Sometimes, meeting the needs of both boys simultaneously was, and still is, our biggest challenge.

In part due to the fifteen-year age difference between our boys, and also because of the self-obsessed characteristics of their respective disabilities, Tim and Matthew have never really interacted like ordinary siblings. They have always seemed to exist in separate, but parallel worlds, with the only real evidence of their brotherhood being the ongoing competition between them for our attention and energies.

Occasionally however, there are hilarious exceptions to this status quo. Early in the piece, Tim's silent, autistic jealousy became apparent one day, after watching Matthew enjoy a session of ball-kicking accompanied by our claps and cheers. When we took the younger boy inside for his nap, Tim thoroughly combed the yard for balls, collected every single one of them – about a dozen altogether – and stashed them high up on the trampoline, where Matthew had no hope of reaching them. Then Tim sat there and waited, surrounded by balls of varying sizes and colours.

As soon as Matthew's nap was over, he headed outside to resume his kicking activities, to be met with the smug and smirking face of his older brother, as he gleefully hoarded all of the balls. Although the inevitable tantrum ensued, Trevor and I thoroughly enjoyed this incident, as it showed us Tim's sense of humour and assertiveness, as well as being almost normal sibling rivalry.

From the early days, the support we received from individuals and organisations was variable. My family was not happy, and it was made clear that the four of us, together, were not welcome to visit anytime soon.

We had tremendous support from some friends and the opposite from others. Some unfortunately believed that they had the right to verbalise to us their personal prejudices, in the guise of advice, others expressed an attitude, which we later found out to be widespread, even in the so-called support organisations: that we had made a voluntary choice, and therefore we were not entitled to any sympathy or support from anyone. It was a tough, and often hurtful process, but excellent for filtering out those excess people in our lives.

My psychiatrist, a calm and non-judgmental person, allowed her jaw to drop. She recovered quickly, as I remember, merely telling me, in effect, that parenting this particular child was probably contraindicated with my disorder. After that, she was supportive: there was never any nagging or "I told you so" - and I deeply appreciated that. I believe she understood me well after many years, and knew that I would rot and die if I had to sit at home being a good mental patient. Not only that, but as I lived through the unbelievably difficult first few years of our lives with Matthew, she was always there, supporting, and directing extra medications tactfully ("How about a bit of anti-psychotic now?"), because, like Matthew, I would not have complied with head-on authority.

Living with Matthew in those days was living life on the edge. We used the nebuliser several times a day, we suctioned him constantly, and I took to doing physiotherapy on him as I had with a child with Cystic Fibrosis I had once worked with. This involved pounding on his back, with his feet elevated, to allow gravity a role in breaking up the loosened congestion. While not exactly painful, it was an unpleasant process for all concerned, and he fought it bitterly.

Despite our best efforts, his breathing was a constant concern. Then he came down with his first cold. I had not realised that things could actually get worse. The extra congestion made it terrifyingly hard for him to breathe through the narrow tube, which in turn caused panic for him, and for us, and he hyperventilated, further exacerbating the breathing problems. We put him on oxygen until the ambulance arrived. After a hairy, ninety-kilometre trip, and an excruciating night in hospital watching him struggling to breathe, when one of the ambulance officers suggested that we clear a helicopter landing site on our property, I did not even laugh. I knew he was serious.

For the first time, I really began to see the very real possibility that Matthew might not live. I started asking more specific questions of the medical people about life expectancy, why, when, how what could be done. The general response was that Matthew was not expected to live until school age, because the trache compromised his immune system and that breathing through a tube was precarious for all sorts of reasons. One of these was, over time, the friction of the tube in the windpipe could cause granulomas: growths which would eventually block the tube off. Obviously, once this happened, there would be nothing they could do for him.

He was known to have other medical problems too, plus the "severe retardation" diagnosis, which I was having trouble defeating. Essentially then, he was a little "vegetable" with only a couple of years to live - maybe. An itchy niggle began in my head. Perhaps this child had been put in a "too hard" basket, and his placement with us was merely a holding pattern until his expected demise? So I became angry, which was the best thing I could have done. Firmly, I asked the pediatrician to organise for Matthew to be reassessed in Brisbane.

My goal was to get rid of the trache. Breathing through the trache was causing Matthew untold discomfort and anxiety, not to mention risk, and it was causing us maximum stress. The tube was making Matthew vulnerable to infection, and it was perpetuating the pseudomonas infection, that had already turned to pneumonia once. Because of the trache, he could not begin to speak or make any noise at all. He also had a wonderful weapon to use against his parents: no two year old ever had such amazing resources to kill himself during a tantrum.

The trache had to go.

Chapter 3: The Inaugural Trip to Brisbane

Full of naive optimism, I packed for our first trip to one of the Children's Hospitals in Brisbane. I had been granted what I asked for: the promise of a full reassessment of all Matthew's issues. I felt competent and confident.

The packing fazed me a little. For just two weeks in Brisbane, it seemed like we were moving house. There was all the machinery - suction pump, emergency suction pump, kangaroo pump, nebuliser, all associated tubing and other bits; bottles and tins of formula. Then there was all the detritus associated with babies generally - stroller, nappies, wet cloths, spare clothes and toys. That was just the hand luggage.

As we staggered into the airport, I wondered how I was going to manage all of the luggage as well as the baby. Trevor and Tim had disappeared swiftly, as though to dissociate themselves from the rabble. It was to be the first of many separations for this family, due to the differing needs of our sons. Tim's life was centred around school and he needed to be kept in a routine as consistently as possible, as stress was always a factor in his epilepsy. So the pattern was set early: I did most of the travelling with Matthew to access the medical treatment he required, and Trevor stayed at home with Tim. As well as being very difficult, emotionally, at times, this arrangement was also a very expensive one, and time demonstrated that the government was often reluctant to assist us financially.

So, I stood alone in the airport, surrounded by luggage, with nothing but my optimism to rely upon. Ah, I thought, someone will help me, I've seen people with disabilities, and mothers with babies receiving assistance from airline staff - I have both, so surely they'll help!

The first problem arose with the hand luggage.

"That item is twice the weight limit ... and you have four pieces of hand luggage – only one allowed!" I stared at the man in disbelief. Could he not see the child and the tube in his throat?

"This is a tracheostomy," I informed him. "Without that pump ..." I indicated the rock-heavy pack, "... the baby could choke at any time on a blockage. Which may spoil the flight for other passengers ..."

The uniformed airline employee thought for a moment. "Alright, but it must ride with the hostess ... it's too heavy for the overhead locker."

"Fine. As long as she is quick on her feet!" I picked up the bags and walked away before he could stop me for the extra three items.

Having handed the stroller in as cargo, Matthew was unfettered, and made the most of it. I gave up trying to hold him on my lap and just followed him around. He worked the departure lounge like a pro, getting attention from each person before moving on to the next. The consensus seemed to be that he was cute and pathetic.... and lollies were proffered over and over, causing me to hurdle rows of seats with uncharacteristic athleticism, to snatch them from his hand. As people glared at Attila the Mum, I explained repeatedly that Matthew could not eat lollies, or in fact anything else. "Poor little thing" was the general response, glaring at me as if it was my fault.

When the boarding call came, I hauled the "poor little thing" onto my hip as he resisted, indulging in a silent but graphic tantrum, whilst carrying three bags of varying size and weight, then staggered out to the plane. No one offered any help. Once seated, I settled Matthew into the seat next to me and was adjusting the seat belt when the hostess bustled up and announced that children under the age of three rode on their parent's lap, handing me a seat belt extension. I handed it back, again explaining about the tracheostomy and suction pump, pointing out the obvious: I could not suction him on my lap, so I would have to lay him in the aisle, which was likely to impede her passage quite a bit. Reason prevailed, and he was allowed to sit in the seat next to me.

He did not sit still however. When the snack boxes came around, I took one for myself and politely declined one for Matthew. The hostess looked appalled, and offered him a juice drink. Again, I thanked her and said no. She stormed off, probably to complain to the Department of Child Safety as soon as we landed. I was getting dirty looks from the other passengers too. Matthew played on with his toy plane, unaware.

We landed, and I looked around for assistance. It was about half a kilometre to the arrival lounge and I had serious doubts about making it with a now-tired child struggling in my arms. No one met my inquiring looks. I guessed I was being punished for both being difficult and for starving the poor little thing. I sighed and began the trek, stopping every five steps to shift loads and rest my shoulders. We made it to the baggage claim area, and I realised my biggest problem lay ahead.

There was an enormous, heavy suitcase and a stroller to come out. The stroller would be wonderful in terms of confining Matthew safely, however I could not wheel the suitcase and the stroller simultaneously, not to mention manage all the hand luggage as well. If I did two trips out to the cab rank, it would mean leaving Matthew and the stroller for a few minutes. Although I did not think anyone would want to kidnap him, I was concerned that he might need quick suctioning as soon as I turned my back. I wished we knew someone in Brisbane who could have come to meet us. All of a sudden, I felt tired, with my confidence battered.

Just as I was about to dissolve into girly tears, which probably would have gotten me more help if I had done it earlier, two wonderful men approached me. They were from Queensland Rail, according to their shirts, and I did not ask why they were travelling by plane instead of train, which is what I would normally have done. Their smiles and absolute insistence were balm to my wounded soul, after the censure I had felt thus far. One wheeled the big suitcase with the nappy bag on one shoulder, the other insisted on wheeling the stroller, with the abominably heavy "portable" suction pump on his shoulder. They deposited us at the cab rank, then returned to retrieve their own bags. I noticed they watched us protectively through the glass until we climbed into the taxi. My faith in human nature restored, I settled back for the journey to the hospital.

I unloaded at Ronald McDonald House, then repacked a small bag for Matthew to keep in hospital with him \- familiar toys, little pyjamas, T-shirts and so on. I had, tucked into my own shoulder bag, lists of questions for each specialist. It was a short walk to the hospital, and quite blissful without all the baggage. As we entered the foyer full of people, I heard, quite clearly, a voice call "It's Matt, look, it's Matty!" This was a sign of things to come. Matthew had spent, as a newborn initially, approximately eighteen months of his short little life in this hospital. He was well-known, a legend even amongst the parents of other sick children.

We reached the ward with an accumulated entourage, and received the same welcome times ten. Rather, Matthew received it. No one had noticed or acknowledged my presence thus far. Finally, a nurse looked up at me and smiled. I introduced myself, and we began the admissions process, while the tiny emperor reviewed his loyal subjects. It was more like a curtain call and standing ovation than a hospital admission. I was a little concerned about the other patients, as it seemed like the whole afternoon shift was devoting itself to Matthew.

Matthew was admitted, and safely ensconced in his cot - an outrage he found wholly unacceptable after all the adulation. For a child without the use of his larynx, he could drum up an amazing racket with metal cot bars particularly. I returned to the relative peace of Ron's place. Suddenly I thought, with a degree of guilt, that having Matthew in hospital was actually going to give me the first break, the first decent night's sleep in four months. I was asleep by eight o'clock that night.

Matthew's assessments began the following morning with an early visit from the pediatric consultant. Together we mapped out who needed to see him, what tests might be required, and so on, and he undertook to contact all of Matthew's specialists. At that time, Matthew had two pediatricians, a cardiologist, a urologist, a gastroenterologist, a plastic surgeon, a geneticist and two Ear, Nose and Throat specialists. He subsequently dumped a couple and picked up a couple, so we remained fairly steady. Within a couple of days, Matthew had been assessed by all of his specialists, except one. This particular assessment was critical, because we needed this doctor's referral to the specialist plastic surgeon. We were hoping he would perform the reconstructive surgery, to begin the long process towards decannulation (removal of the tracheostomy).

Most of these specialists were marvellously human, and a few were less than warm. But I took it all in my stride, acknowledging they, as a group, had managed to keep Matthew alive this long. When we saw the plastic surgeon, who had repaired the baby's cleft lip, I was able to ask questions about correcting the jaw problem. For the first time, I heard in detail just what a "lower mandibular distraction" involved.

"The jaw is broken on either side, and we bolt plates on each side," the doctor outlined. "Two long rods will be secured to the plates with screws. These rods protrude from the mouth, diagonally."

I was silent, mentally digesting this image.

"The rods will have to be turned at regular intervals through the day, for about a month," he continued.

"You mean ... re-breaking the jaw each time? Several times a day?" I asked, with dawning horror.

"Yes, creating tiny pieces of new bone, incrementally."

"It sounds like medieval torture! Will it hurt him each time?"

"Not much ... they get used to it." His voice was offhand. I was horrified - it sounded cruel and grotesque. But if the outcome was a usable airway, then it was clearly necessary.

As the days wore on into the second week, I became quite peeved with the continued absence of one remaining specialist, and expressed this forthrightly to the staff on the ward. Eventually one morning, the specialist's Resident turned up.

"Doctor Smith said to tell you that there is no need to reassess Matthew's airway ... he saw it two years ago, and it's hopeless. He'll never breathe without the trache." The young man's face was shining with the importance of his mission.

"Every other doctor has said Matt's airway might have improved with growth," I argued. "Why can't he just have a look? Why hasn't he come himself?" I noticed a couple of nurses hanging around, listening.

"Doctor Smith is a very busy man! He has already assessed this child. He said to tell you that these trache kids don't live long in any case...."

I cut him off. I was so angry I was seeing spots in front of my eyes. "Tell your boss that if he does not reassess Matthew in the next week, I will make formal complaints to every person and organisation I can think of ... and I know a few! He is not going to give up on a baby without even looking at him!"

"Um ... well ..." The young Resident was clearly unaccustomed to parents who answered back. "I don't know ... he was very definite ..."

I stared him down, and he scurried off. I could see the nearby nurses smirking.

Whether I frightened him, or whether someone else leant on him, I do not know, but within a few days, Matthew was booked for a bronchoscopy. During a bronchoscopy, a camera is passed through the airway and respiratory system, to check for problems.

Surprise, surprise! Matthew's airway had actually improved with growth since his previous bronchoscopy after all, so he was referred to the specialist plastics clinic, run by a renowned plastic surgeon, Doctor Robert, who is a hero amongst parents of children with cranio-facial problems. We had two months to wait for an appointment.

During the weekends, while doctors were not needing Matthew for tests or anything, I tried to get him out of the hospital as much as possible, because I was very aware of how institutionalised the child was. We attributed a lot of the difficult behaviours and constant attention-seeking to his long sojourns in various hospitals.

One Saturday, I took him over to the South Bank markets, and we strolled along just like ordinary people. Until I noticed the looks and comments we were getting. Naively, I had assumed that the majority of people would feel sorry for a baby in his condition rather than to set out to be cruel. A young couple walked straight into the stroller, gaping at Matthew's face in horror. Another woman tripped on the kerb, hypnotised by my son's face.

"What's that, Mum? Errrrr, gross!" Said a boy to his mother.

"Eww!" She replied, staring rudely at my son.

For once, I was bereft of speech ... I should have chased them down and challenged their ignorance. But Matthew seemed oblivious, and I did not want that to change before it had to. I was, however, determined not to let it spoil our day or chase us away. So I found a face-painter - she was both talented and sympathetic. She rose to the challenge of a foreshortened and wriggling canvas, and produced a masterpiece. Thus gorgeously-painted, people were still staring and pointing, but with smiles on their faces now, at the supremely-cute tiger cub face above a trache, which was barely noticeable at all.

While down in Brisbane, we had some wonderfully positive experiences as well. I came to know some of the staff who had worked to keep Matthew alive for so long. Things thawed out considerably after my little war with the last doctor. There was Margo, the "trache lady", who had, and still has, such a special spot for Matthew, and Alice, a nurse who had also worked extensively with him and fallen under his spell, another nurse, who described finding Matthew "blue" as a baby and personally resuscitating him, and countless others who cared so much about him when he had nobody else. It was my first introduction to a children's hospital, and I immediately discovered these people are special, even within their own professions.

Unfortunately, Matthew's biological parents were unable to stay in Brisbane when he was a baby, because of all their other children and the distance involved. So he had had only one visit from his family during the year and a half he was there. During that time, he had many major surgeries and illnesses, and a Red Cross volunteer was asked to go and sit with him on one occasion when he had just undergone heart surgery. I had heard about this wonderful woman before we even arrived in Brisbane. She became his adopted Grandma, as she continued to spend time with him, supporting him through much pain and trauma, and being the most constant person in his life, without his mother.

I met Louise within a couple of days of our arrival, and thanked her profusely for her care of Matthew. I asked her if she would remain, officially, as his adopted grandmother, and I remember we both got a bit teary.

As we came to know each other a little better, Louise told me she became a Red Cross volunteer in part because she had lost her younger son in a terrible accident. His name was Matthew, and he was only nineteen years' old. I could not begin to imagine her grief.

"One day, I was cuddling the baby after he'd had some surgery ... the heart surgery, I think it was," Louise told me. "I just happened to notice his birth date on the little bracelet around his ankle – his plastic identity bracelet, you know? We're not supposed to read them, but it just caught my eye this day ..." She paused, swallowing hard.

"The second of May, two thousand," she recited. "That was exactly the day my son, Matthew, died." I exhaled slowly, and nodded. I understood Louise's sense of connection to this little baby who seemed to have no one else. Although she was not generally a cosmic person, she believed that she and Matthew were meant to meet. He adores her, and remembers amazing things, such as Louise singing to him "Jeepers, Creepers" when he could have only been about a year old. Grandma Louise and Grandpa Bob, her husband, are still very important in Matthew's life, and they have adopted our older son as well.

At our long-awaited appointment at the special plastics clinic, we met Doctor Robert, and he agreed to operate to build and extend the lower jaw (mandibular), thus opening Matthew's airway, and hopefully allowing for removal of the tracheostomy. We had four months to wait.

Chapter 4: The Queensland Lifestyle

When we first moved to Queensland in nineteen-ninety, I eagerly applied for work in the disability sector, having spent a rewarding few years running a community disability programme in Sydney. I was thoroughly up-to-date with political and social expectations, and attitudes around disability there, and wholly comfortable with my role as an equal, as a facilitator for my clients with disabilities, rather than a superior or patron.

It was a shock to my system to discover attitudes and models of service provision in Queensland I had not encountered for over a decade in New South Wales. I floundered in job interviews, where terminology such as "The Handicapped" was still in common usage. My discomfort must have been obvious, because I was repeatedly unsuccessful, with one interviewer even accusing me of faking my application.

I felt like an alien visiting another planet. We were childless at the time, concentrating on building our own home on our bush block, and inevitably struggling for money. I tried to become involved in local activities, with the typical city-girl ignorance that imagined country towns to be friendly to outsiders.

Soon after our arrival, we discovered that local attitudes were quite hostile to newcomers, meaning anyone whose family had not lived in the district for at least two generations. The story behind our cheap land involved a local council convincing local farmers to sell their rubbish land off to developers, in order to use the extra rates to pull itself out of the red.

A town with a population of around three thousand, with an injection of two thousand new small blocks, without any additional infrastructure, was a total disaster, socially and economically. The locals called us "blockies" and "ferals," laughed at our efforts to farm or find employment, and tormented our kids in the local schools. The first five to ten years saw wave after wave of blockies giving up, and retreating back to the places they had come from.

We could not do that, financially, so we stuck it out, with a handful of neighbours in similar straits. Besides, we refused to give up our little piece of precious bush and the new lifestyle we had dreamed of.

I remember erring badly during the first few months, because I simply did not understand the local etiquette, and that, as an outsider, I should be very quiet and humble. At a social event, I approached a local farmer and politely requested he "keep his cattle in" for a couple of days, as we were laying the concrete slab for the house, and the beasts did not seem to realise it was no longer their land to traipse through. A hush fell over the witnesses to this exchange. The farmer ignored me, walking silently away. What had I done?

The following day, I received a message from him, via another neighbour. It was not polite. I was dumbfounded, not understanding I had caused the man to lose face somehow. Eventually, this particular farmer came to accept me, even though he always thought me quite strange, and we laughed about it all years later. At the time though, I was confused and outraged.

I set about changing things, of course. In the process, I put my foot in it many times, was threatened more than once, stuck my chin out and worked voluntarily at the local schools, and finally ran for the local council, unsuccessfully. I helped to launch community groups and projects, did research, and fostered local kids. These things simply gave me a higher profile, and made me a bigger target for the locals to hate or laugh at. Time and time again, I was shot down in flames, until I finally gave up any local involvement, after many years of failure.

It was upon this uninviting backdrop that we, perhaps unwisely, brought in our succession of foster-children. The older kids invariably copped bullying and worse at the local schools, and particularly on the school buses. I was forever sorting out conflicts. They were called "welfare brats," "retards" and worse. I still cannot understand, for example, the teacher at a local school who took me aside one day, and told me, in all seriousness, to give up on the twelve-year-old girl we were caring for, as she was certain to become "a drunken slut like her mother." How could anyone characterise a little girl in that way? Obviously, it was unrealistic to expect local kids to have fair or positive attitudes when this was coming from teachers and parents.

Our children with disabilities were rather more protected, as we would not, could not, allow them to travel on the school bus. Instead, they were segregated as much as possible within both the school system and the general community. Over the years we have received much criticism and discrimination from the local community over these kids. A staff-member at a local hospital almost spat at me when I requested a form for the travel subsidy when taking Matthew to Brisbane for surgery. She accused me of taking resources from local people for "that kid." Matthew was actually born in the district, so his placement with us had no bearing on local funding in any case.

After that contretemps, and a couple of other negative incidents, we avoided the local hospitals like the plague, instead borrowing and begging money as we needed it from elsewhere, and travelling hundreds of kilometres to access less judgmental services in Brisbane.

I made a vow to myself that I would never become involved in local activities or events again, a vow I have broken a few times however. I spent a wonderful two years in the local State Emergency Service unit, and worked with some generous and skilled people in that time. This served to restore some of my belief in the innate goodness of most people.

Apathy and negativity have an insidious infectious quality. Combined with the tiredness and demands associated with the care of these two boys, I have found myself quietly surrendering, from time to time. One of the most vivid Guilty Mother moments I recall was when we had called an ambulance for Tim during a bad seizure, during the year he was so ill. One of the paramedics who attended had known me for many years.

"How can you, you of all people, stand by and allow this boy to get into this state?" He lectured me, as he struggled to stabilise my emaciated son. "You know better than this... make those doctors listen and refer him to Brisbane for tests!"

I cringed. He was so right, and it was the motivation I needed to get back in there and fight for Tim's rights as a human being. I had allowed both Matthew's issues and the local attitudes to swamp me, killing the optimistic spark that enabled me to advocate for both boys.

Politicians duck and weave when they see me coming, services fail us repeatedly, and we live mostly as pariahs in this small town. But we have found gems amongst the rubble over the years: people who have helped us, even when they did not have to, people who genuinely care about our kids. These people are the reasons why we have survived here for so many years.

On bad days, I imagine moving somewhere else, anywhere else, where my children might get a fair deal, with decent services and caring community attitudes. I would like to pick up our beautiful piece of Australian bush and transplant it. But the realist in me whispers that perhaps no such place exists in Australia. Maybe it is a sign of my advancing age, but our society seems so cold now, relying on screens and keyboards to communicate, the financial imperative as a yardstick with which to measure life, and shorthand jargon to encapsulate human beings. It seems frighteningly easy to disregard people who do not fit neatly into a box: I have lost count of the number of times I have been told that one or other of my sons "do not meet criteria". I call it the "shrug factor" – a phenomenon of convenience, economy and dispassion.

Chapter 5: Waiting for Surgery

I am, by nature, an impatient person. One of the things that I was learning fast was patience. With Matthew, there was waiting in waiting rooms, airport lounges, train stations; waiting for doctors' appointments, surgery dates, test results. I would like to say that I learned patience gracefully; however, I think I learned it reluctantly, and sometimes resentfully.

While we waited for the magic day to come, the first step towards Matthew's goal of breathing on his own, life continued here ... I will not say it continued as normal, because there is no such thing in this house!

I enrolled Matthew at the local Kindergarten to give him the opportunity to socialise. This went quite well, although I had to be in the car outside for the hours he was there, holding the suction pump in case of blockages. Small children are remarkably accepting of difference, before they can be contaminated by adult social stigmas and prejudices.

During Matthew's first week there, the teacher asked me to speak to the children about all of his extra "bits" - which was a bit daunting, but necessary. With Matthew, the performer, sitting there demonstrating and modelling happily, I explained to the children that the trache tube was like an extra nose for Matthew, because his did not work properly yet, and that the Mic-Key button (PEG) in his tummy was his extra mouth. They were fascinated. I think I was able to teach them not to touch these things - I had visions of some little monster pulling the trache out! - because there was never any problem. The parents were another matter, and mostly treated both Matthew and me with distaste.

One of the things that I had to learn to deal with was other people's judgment of me, my son. and my parenting ability. It is widely assumed that foster parents have no real knowledge of parenting, because they have not actually given birth to the child - as if the act of childbirth automatically bestows upon new parents the wisdom of the gods. When one of his therapists decided to give me patronising lectures on how to deal with Matthew's behaviour, I overreacted. I asked her how many children she had in her home – none - then told her that I had parented fourteen children, at least half of them with special needs, five of them under the age of six. She apologised and shut up, but in retrospect I would have handled it more tactfully probably, if I had been less bloody tired. I just became so fed up with people offering unwanted advice, yet no practical assistance whatsoever.

It was fascinating, and still is, the way that people characterised me, and to a lesser extent, my husband, as either saints or sinners. From one extreme to another, we were told that we were self-sacrificing and wonderful, through to selfish for exposing abnormality to, and taking resources from, local normal children, "stealing" Indigenous children from their culture, and cruel by keeping him alive, and so on. None of these extremes were accurate. We were, and are, just ordinary parents, trying to do the best we can, like any other parents - on some days we succeed, on others we fail. I am no altruist: without these children, we would have no family, no focus, and no passion for justice. These boys have given us all these things, and more.

I should say, at this point, that it would have been impossible to take on either of these boys, let alone both, unless both parents had undertaken equal shares of childcare and domestic tasks. I am extremely fortunate in having a husband who does all the cooking and at least half of the practical caring for these boys. The children hate it when I cook! I do the advocacy, and work part time outside the home, but everything else is shared. We only rarely have disagreements about the boys, and it is only for the sake of consistency – for example, hair-washes, doctor's appointments, medication, and so on - that we have appointed Trevor as Tim's primary carer, and me as Matthew's primary carer. In real terms, both of us just pitch in and do what needs to be done.

I forced my husband to go away for a few days down to Brisbane - he looked exhausted. So of course, the day after he left, we had a bushfire come through. I was just going about the usual domestic chores, feeding, washing, cleaning, when I happened to look out of the window, by good fortune. We live up on a hill, looking down upon one set of neighbours, about half a kilometre away.

These commonsense-challenged people had decided to burn some rubbish without a permit on the windiest day of the dry season. A line of fire raced across our bottom paddock and started up the hill. I had less than two minutes. I threw both kids and all the dogs into our Coaster bus and drove through the smoke to our friend's place across the road. I dumped them there with our friend, John, and took off on foot back up the burning driveway. I had no idea that, at my age, I could still run at full speed for half a kilometre without stopping. I tried to get the horses out of the house-yard where they were trapped, but they were so panicked, rearing up at me, that I just had to leave them in the end.

We had just bought a new car - our very first brand new car ever. Even though it was comprehensively insured, I was determined to save it. I jumped into the driver's seat, as tiny flames were flicking at the tyres, and drove like mad back down the driveway, which was well-alight. Instead of returning to our friend's house, where I had left the kids and dogs, I drove over to the delinquent neighbours' house, and screamed at them in language I do not ordinarily use. They responded in kind, of course, and I left with the threat that if the smoke killed my son, they would be up for manslaughter. It was a pointless exercise, but I felt so much better afterward, as I rushed Matthew to the local hospital for oxygen.

My poor husband arrived in Brisbane, and had to turn around and catch the next train home. We had no power, no phone and no water to the house, as the network of underground plastic poly-pipe had either melted or burned, along with the cables. The fire ended up burning out a thousand square hectares of the region, so our utilities were not fixed in a hurry, and, without water at least, we could not live in the house with the children. Apart from melted pipes and cables, there was just a blackened landscape as far as I could see. For weeks, every footstep through the house was sooty. But the house was untouched - the fire jumped over it, fortunately. Matthew suffered no lasting ill-effects, luckily for the neighbours, and even the horses were fine, although their feet were a little tender for a while.

I realised that, after being in a hospital cot for two and a half years, Matthew's development was inevitably delayed. But I had faith that, with a decent chance, he would catch up - most of it anyway. We did our best with speech therapy, and our own creative physiotherapy and occupational therapy here at home, as the professionals did not seem to be interested in working with him, for the most part. We built a fort and swing set for him, and for Tim, and the look on Matthew's face the first time he was pushed in the swing was priceless. His expression was one of gleeful terror.

We also met his geneticist around this time - a very nice doctor who professed to having no clue as to why this baby had been born with such awful deformities. I constantly asked our local pediatrician what sort of diagnosis the child had, but he seemed reluctant to give a definite answer - I thought this was because Matthew's condition was so rare. He was given a provisional diagnosis of Pierre Robin Sequence: which explained the small jaw and the clefts, but not the other problems. I like to have reasons for things, so I found all of this very unsatisfactory.

Once he was mobile, Matthew's middle name was Mischief. Exuberant and incorrigible, as his health improved, he was into everything and impossible to contain, except in the cot. He climbed onto his brother's lap - his autistic cannot-stand-touch brother's lap - while Tim just froze in shock. His exploits with the dogs, all carried out with great love and curiosity, made them extremely nervous.

One day, I caught him as he came up behind my blissfully-unaware Rottweiler, saw an interesting hole, and began to commit an indecent act with his finger. Poor Mac rocketed a foot in the air. We nicknamed Matthew "The Pixie" due to his looks and his cheeky behaviour. He adored dressing up in hats, scarves and cloaks, mimicking people and animals. Without a tongue, we realised, he was a tremendous loss to the Royal Shakespeare Company.

Matthew's charm and sociability was evident, even without speech, or maybe even because of this. He would engage with anyone: at Kindy, in shops, airports, in the street. I had to watch him, because not all people, men especially, are comfortable having their legs suddenly embraced by a small child. Everywhere we went, people fell under Matthew's spell, and I realised that this was going to be one of his greatest strengths if we could teach him some discrimination and self protection.

During this time of waiting, we also managed to get in touch with Matthew's mother, Jess. This had been impossible previously, because the father would not allow any contact at all. Jess had left - run away, as I later found out - and had taken one of Matthew's brothers with her to New South Wales to live near her extended family. Once free of the situation she had been trapped in, the first thing she did was to contact the child protection office, who had taken Matthew into care. She begged them for news of him, and they relayed this to me. I was overjoyed to hear from her, and by the prospect of some family contact for Matthew, so I phoned her immediately.

She and I hit it off quickly, which is extremely unusual in my experience with biological parents. Generally, there is a lot of hurt and resentment for biological parents ... too much for friendship to develop, unfortunately.

Jess was a Koori woman, with a great sense of humour and a huge, helpless love for all of her children. When Matthew was a baby and in hospital, doctors and nursing staff treated her with such contempt that she became frightened to go near a doctor. As a result, when she found a lump in her breast, she told no one, and just watched it grow for two years. Finally, a friend physically drove her to hospital, and she had a radical mastectomy the following day. When they scanned her body, they found seven unhealed fractures, thus explaining her flight from Queensland.

She and I became close during that terrible time: she would phone me when the pain was bad, so that she could cry. She was so worried about her elderly parents that she hid the severity of her condition from them. At least I could do that much for her from a distance, and give her positive news of Matthew.

"If the pain is that bad, call an ambulance, Jess ... make them give you something for it!" I would say, as she stifled sobs, trying not to wake her six-year-old, Jay.

"There's no one to watch Jay," she said, hopelessly.

"Can't you call your Mum?"

"I don't want her to worry ... her diabetes is so bad now ..."

"Let me tell you what your naughty son did this week ..." I said, trying to distract her.

"Not my son ... our son ... yours and mine ..." she interrupted, and I could hear the smile in her voice.

I told her as many amusing anecdotes as I could remember, embroidering them to make her laugh.

"At least I know that one of my kids is safe," Jess said at the end of our phone conversation. Her hopelessness and generosity, both, made me catch my breath.

"He'll always be safe with us," I promised, knowing I would forever feel both honoured and honour-bound by her trust.

Jess was an alcoholic - she told me herself. It had been her anaesthetic for the pain and abuse she had suffered for most of her life. When she left her husband, she achieved sobriety, and told me proudly that she attended Alcoholics Anonymous regularly. Sober, she was a warm, intelligent woman, and I wish that Matthew could remember her that way - he will know of her, but only through me.

I took Matthew down to see her twice, and, the second time, I knew it would be the last time. She was so intimidated by her oncologist that she could not ask for proper pain relief, even though, as it turned out, the cancer was in her spine. They were giving her simply paracetamol, and her six-year-old son, Jay, was ringing for an ambulance every other night as she lay there, screaming helplessly. I rehearsed role-plays with her over and over, so that she could confidently ask the doctor for something more effective.

When they discovered it in her spine, she was given morphine, just two weeks before she died. She was just thirty-nine. Jess' death is an indictment of how Indigenous people are treated in our health system in Australia. Nearly six years down the track, and my fury at the futility and needlessness of her death is still with me. With Jess' death, Matthew lost his best chance of knowing his birth family and his cultural identity. I lost a friend.

Race has definitely played a significant part in our lives with our two sons. In addition to the drama and delay surrounding Tim's adoption, we were under constant pressure from all sides, from the moment Matthew was placed with us. The fact is that there was, and is, a severe shortage of Indigenous carers in the system, and the few who are registered foster-carers, are desperately overloaded and rarely able to take on a high needs child in addition to eight or ten other little people. In a cultural sense, we could learn a great deal from the way Indigenous groups care for children on a community level – it is a shared caring, less formal, and in many ways more effective than our system of foster care.

While Matthew was still a sick little baby, it seemed that the service-providers around him were far more concerned he have contact with his culture than anything else. Trevor and I were regularly quizzed and lectured about what we were doing to provide the child with cultural contact. I used to feel rather helpless and guilty, like a kid who had not done its homework properly. In fact, I have tried hard with both boys, to find their extended families and maintain relationships. My too-brief friendship with Matthew's mother, and a distant friendly relationship with one of Tim's sisters have been my only real successes. Although I understand the hurt and wariness Indigenous people must feel towards a white person like me, I have to accept that there is almost as much prejudice within the Indigenous community as there is within the white community, sadly. This is further complicated by my own disability, which makes any new social experience traumatic and somewhat awkward – I am uncomfortable, socially, regardless of the racial origins of a group, a result of my miserable adolescence probably.

The under-resourced local Indigenous people have been reluctant to include Matthew over time – he is not Murri, and I was informed he would need a "Certificate of Aboriginality" to access anything locally. I had no clue as to how I would acquire such a thing on his behalf, particularly once his mother had passed away. We were referred to a parade of Indigenous support organisations in those early days, most of which were friendly and supportive, but really had no idea what to do with a child like Matthew, or his embarrassingly-white family.

There was the occasional service-provider who treated us with anger and resentment, seeing us as contributing to a new Stolen Generation instead of just simply trying to keep a child alive, but most were reasonable and understanding of our position. Most of the politically correct pressure on us came from the white service-providers, in fact.

My husband and I do not see race as an issue of difficulty overall. Trevor has always been racially different himself, as a Romany-Gypsy in England, so he has a good frame of reference for the experience. Our boys are simply who they are, absolutely unique in all ways, and their day-to-day needs are what we focus on. We have tried to give Matthew some general background to his cultural identity over time, with Dreamtime stories, Aboriginal television programmes, books, music and so on. But "culture" is itself an abstract concept, so well beyond Matthew's reach at this stage. We have always concentrated on talking about Jess as a person, as a special friend, as I see her as the key to Matthew's cultural identity more than anything else. I hope one day he comes to me with questions on that score, so that I can help him to find his own answers.

To the service-providers who could not see the wood for the trees, and who continually nagged and lectured us as we were struggling to keep Matthew alive, I would say this: a child who cannot breathe is not black, brown or white, he is blue.

Matthew's first Christmas with us was wonderful. Of course, he had never experienced anything like it before, and our joy came from watching him grab the magic of the day with both little fists. That year, his favourite toy was "Brum" from a British children's television show about a superhero car. Cars were already at the top of his recreational interests. By the end of the day, exhausted by the festivities and his Christmas booty, he fell asleep on the floor, surrounded by an orgy of new toys, books, and clothes.

Chapter 6: Surgical Success

Two weeks after Matthew's third birthday, he and I travelled again to Brisbane. We knew that it was to be an extended stay this time, so I found a pleasant serviced apartment to rent for the duration. On the plane again, I took only the things we needed for a week, because Trevor and Tim were going to drive down to visit that weekend. The plane trip was better this time: I had developed a thicker skin about it all, and a friendly relationship with the airport staff, whereby they even hailed both of us by name. This expedited things considerably at the other end too, as the guys called ahead to request assistance for us.

After settling in at our accommodation, I took Matthew to the hospital for another bronchoscopy prior to the major surgery. Getting Matthew anaesthetised was proving to be a big problem. After all the surgeries he had had since birth, he was understandably terrified of operating theatres, and the staff in their scrubs, gowns, and masks. He was having full-blown panic attacks each time. For the first bronchoscopy, three months before, I had been compelled to pin his little thrashing body to the operating table with my own, which reduced me to a weeping wreck. This time, they allowed me into the theatre and sat him on my lap, putting the mask over his trache there. It was slightly better, but not much.

I was sitting up on the ward, waiting for him to come back from Recovery, when a nurse rushed in. "They want you down in the Recovery Room," she said, and my whole body turned cold. I raced down there as fast as I could, to find a completely hysterical, hyperventilating child struggling with two nurses. They were unable to control his oxygen levels because of his panic. So I sat for an hour restraining him on my lap, trying desperately to calm him.

During this time, a doctor paid us a visit to tell me what bad shape Matthew's airway was in. She felt quite comfortable discussing the nature and timing of Matthew's death to me, in front of a clearly upset child. I was so incredulous that anyone, let alone a doctor, could be so utterly callous that I did not say a word. I suppose she thought that, as a mere foster-parent, I did not care much about the child anyway. Fortunately, this specialist was an exception to the general rule amongst these wonderful people who work with such damaged little people.

The managers of the apartment complex where we were staying were delightful people, who fell under Matthew's spell immediately, especially Michelle. They became vital supports to me, and made us feel very welcome as we regularly stayed with them over the years. This initial stay was to be for at least two months, as Matthew would have to be monitored after the surgery. There was a swimming pool at the apartments, and Matthew was predictably fascinated and insistent with his pleas to get into it. Sadly, I had to keep saying "no" - how do you explain to a three-year-old about drowning through a tracheostomy?

The major surgery, the mandibular distraction, was scheduled for a few days later. I introduced Matthew to my Walkman and headphones, which he adored. I deliberately made it into a treat, while searching around for suitable relaxing music at the same time. As we went into the Operating Theatre this time, I had him all wired up to the Walkman on my belt. At first, the staff eyed me askance because of this, but they could see that it was working. I think that I was gaining quite a reputation for being unorthodox, and probably "difficult" as well. I have come to wear that "difficult" label with some pride, as it comes with a high price attached to it.

The surgery took four hours, or maybe it was a bit less and just seemed like more. I had Louise waiting with me for most of that time, which was lifesaving. When it was over, and before he had even changed out of his scrubs, Dr Robert took me into a little room and explained what had happened. He described Matthew's jawbone as "tissue paper thin", what there was of it. He had managed to attach the bolts, plates and rods, but he made me aware that their position was precarious. Otherwise, he said, Matthew had coped well with the long surgery.

Louise and I went up to the Pediatric Intensive Care Unit to see him, and, again, I was thankful for her presence and support. Although they had told me that he would be swollen, nothing prepared me for what I saw. He was not recognisable as my little son: his face swollen like a football, two long rods protruding from his little swollen mouth, and blood spattering his face, neck, and pillow. He was still unconscious, fortunately, as I cried over his cot. What had I done to him, putting him through this? It was a thought that echoed in my head over and over in the weeks to come.

Children are amazingly resilient, both physically and mentally. Physically, Matthew excels in his ability to heal. The following morning, I was able to bathe him - very carefully - and remove the spatters of dried blood. This improved his looks considerably. Plus he was awake and alert, signing madly as usual. Two days after his surgery, the doctor came on his rounds and handed me The Key, demonstrating its use. Three hundred and sixty degree turns on each rod, twice a day. I could do that, I thought, although with some trepidation.

PICU closely resembled my idea of hell. However, the nurses on staff there were incredible, with their compassion extending to parents as well as the children. The first night that Matthew spent there, a nurse brought in a comfortable reclining chair for me, and parked it next to Matthew's cot. Not that I slept at all. So there I sat, that long night, in a row of agonised parents, all of us watching, not sleeping.

During the time that Matthew was there, I heard and saw such heartbreaking things that I became actually thankful for Matthew's problems. I listened to a priest giving the last rites to a four-month-old baby, I listened to mothers keening quietly, and watched tiny bodies suffer, riddled with wires and tubes, too weak to cry. I was there when the alarms went off, when the calls came for the helicopter crew to evacuate critically-ill children. The suffering caught in my throat for the whole twenty hours a day I spent there.

The predicted length of hospitalisation was three weeks. However, as Matthew improved, his behaviour became disruptive. This was partly my fault for bringing in "Elmo doing the Hokey Pokey," which he did, over and over. Matthew could not be moved to a general ward, as the hospital had a strict policy that all children with tracheostomies had to stay in PICU for the duration of their admission.

Unfortunately, I had taken over much of Matthew's care in the ward, seeing that the staff were so busy. So when the Unit Manager came and told me that Matthew was being discharged after only ten days, I had no comeback.

"We need the bed desperately," the Manager explained. "You are just as competent as a nurse, to care for him at home."

"But we're not at home," I protested, vainly. I was unprepared, scared and upset. "I don't know anyone in Brisbane ..."

"I'm sorry. You can bring him back in if he has any problems ..."

My phone call to Matthew's caseworker went badly too.

"I need urgent respite down here, Adam ... I told you weeks ago that I would need help when he got out of hospital."

Five hundred kilometres away, I could hear the distraction in the young man's voice.

"I did put in a call to the Brisbane office last week, but no one returned it," he said.

"Great. So what do I do now?"

"Um ... I'll talk to someone and ring you back ..." I did not hear from him again, of course. It was all too hard, he was too busy and inexperienced.

Difficult as I knew the days ahead would be, it felt wonderful to get us both out of PICU, and back to some semblance of normality, whatever that was. Once back at our flat, Matthew could not go out anywhere that was likely to have lots of people - for example, a shopping centre. This was because of the high risk of infection with all the metal in his mouth. So we had to fill in our days within the confines of a very small flat.

We played games, we built castles, read books and watched endless videotaped episodes of "Thomas the Tank Engine," the current favourite. I believe that I was sounding like the Fat Controller after a few weeks of this! Pediasure tins are marvellous and versatile once empty: we built towers and knocked them down, we made rattles and drums. We worked on his signing, and I had bought him toys that would encourage his fine motor skills development. These activities kept him happy for about a week.

Matthew came home with three different antibiotics as prevention, and three different painkillers, including morphine. His little face was grey in colour, and, for him, he was lethargic and whiny. One of the nursing tasks I had to carry out was to syringe his mouth out four times a day with saline, to deter infection. We both hated this chore with passion. At least I could understand why it had to be done, at three, he could not, and so resisted with all his might.

On my own, without another person to hold him still, I was forced to straddle his small, struggling body with my own, and pin his arms above his head, grasping a handful of hair at the same time, then, with the other hand, I squirted a small amount of fluid around the inside of his mouth. Dr Robert's warning echoed: a bad infection could make the surgery useless, but I felt like a child abuser. He hated me for doing it. The most positive thing I can say about the process is that I became quicker at doing it, and he never did have an infection.

Every night, I used to stand him on the bathroom vanity, so that he could see himself in the mirror. He adored his new chin, which of course, was becoming more visible by the day, as I turned the rods with the Magic Key. The swelling went down and, apart from the two protruding rods, he looked like he had a whole face at last. We were both euphoric. His fey smile around the rods made everything worthwhile.

Chapter 7: No Gain Without Pain

Apart from the thrill of knowing that Matthew's reconstructive surgeries were at last underway, and so far successful, this first two months in Brisbane with him rated as one of the worst periods of my life. My bipolar disorder struggled to get a grip on me again. Matthew and his situation were both the trigger for my hideous depression, and the reason for my battle to resist it.

Although my psychiatrist was in Brisbane, I could not go and see her because there was no one to watch Matthew. As we had already discovered, there were far too few people who are trained in tracheostomy care, PEG feeding, and were willing to cope with Matthew's behaviour as well. So there were no such things as babysitters for him. I had to settle for limited phone consultations with her, and the occasional call to a hotline. There were dark times when I did not think that I would make it ... my main concern being Matthew, if I were not there.

Unable to take Matthew out, I could not go shopping. This was my most obvious problem. I had no family or friends in Brisbane, so I simply ran out of food. Matthew had plenty of Pediasure, but I did not eat at all for three days at one point, until the wonderful manager of the complex realised what was going on. She brought me pizzas, milk, and the basics, while kind neighbours dropped things in as well. I felt humbled by people's kindness at the same time as feeling embarrassed for the need.

As I did not drive in the city, Matthew and I caught a lot of taxis between the flat and the hospital. When we started getting the same taxi-drivers, I knew we had been there too long! The mostly-male drivers were usually very helpful and sympathetic towards us, obviously feeling sorry for a child undergoing such trauma. One such driver, a man in his late-thirties, was particularly kind. He had young children of his own, and was clearly moved by Matthew's plight. Easter fell a few weeks after the main surgery, soon after Matthew's discharge, and I received a call from Michelle at Reception to say that someone was there to see us. Curious, we went over. The taxi-driver had brought his whole family to visit us, and his children gave Matthew a huge toy bunny, one of their own Easter gifts. The kindness of strangers sustained me.

The Department of Child Safety had legal guardianship of him at that time, and was supposed to organise some respite care, but still did not get around to it. Again, it was just all too hard - a child with multiple problems and a situation beyond the ordinary, a young and inexperienced social worker. In the end, a nurse at the hospital contacted a local charitable service, which gave me a couple of hours each week to shop while a trained nurse cared for Matthew.

The nights were hard too. Although Matthew was ordinarily a very good sleeper, something, the surgical trauma or the drugs, gave him horrendous nightmares. So I slept in his room to be close for comfort. The ground-floor flat had small windows, shadowed by leafy trees. During the day, the flat seemed so winter-dark, I felt like we were blind, nocturnal creatures, merely existing in a grey half-world, and that we would never see daylight again. In retrospect, I can see, quite rationally, there was nothing to be cheerful about when the highlight of one's day was breaking your three-year-old's jaw.

His behaviour at this time was abominable. At times, I simply strapped him into his high chair, where he was safe, and let him go, while I left the room to catch my breath. He was an active three-year-old, who was being confined after a horrible experience, and he was angry. Specifically, he was angry with me. Toilet-training went out the window, throwing activities recommenced, tantrums abounded. Of course, I understood exactly what he was going through, but it was so hard to live with, without a break.

One day, I snapped and smacked him, hard, on the bottom during one of his tantrums. It was the only time I have ever hit a child, and I felt so dreadful I could hardly live with myself afterwards. He certainly recovered from it much faster than I did.

I was hungry, exhausted, and alone. My husband was five hundred kilometres away, dealing with our older son's issues. Trevor and Tim made the trek down a couple of times, breaking the darkness for us. They even brought my beloved Mac on one occasion, although he was not very happy to be cooped up in the flat. But it was doubly hard to say "goodbye" to them after just a day. I know now it was a situation well beyond the capabilities of any ordinary mortal, let alone one with a pre-existing vulnerability. But, at the time, I felt inadequate, and constantly questioned my ability to care for this child.

In the middle of this terrible time, my mother phoned. This phone call left me bereft of words, which does not often happen. She was volunteering to travel up from New South Wales for a few days to help me with Matthew! I could not believe it, I was suspicious, then I was pessimistic. She'll hate him, I thought, or be terribly awkward around him. But nothing was further from the truth. Initially, she was taken aback by his appearance, but as always, Matthew won her over within five minutes. She could not resist his energetic welcome, being introduced to each toy in turn before she could even sit down.

Having been a school teacher for many years, then subsequently a librarian, Mum read to him endlessly, which he loved. I did not usually have the energy to read to him, poor kid. One day, she looked up at me and said "He's quite bright, you know", and there was both surprise and pride in her voice. I knew at that moment that Matthew was accepted into the extended family. She was the only person to help me at that time, and I was touched.

Mum went home, Matthew was devastated, and I had to face the lonely battle again. Matthew was having regular x-rays to ensure that the plates were still in place. Keeping him still was a problem, so of course I had to physically restrain him each time. I have absorbed so much radiation over the years, that I am sure I exude a slight green glow in the dark nowadays. Inevitably, both plates came asunder at different times, and poor Matthew had to go back to theatre. I was getting better at this though...the wait, the swelling, the vigil, the quick discharge, medication ... it was familiar now.

I hated being away from home, my husband, and my other son. With my particular type of bipolar, anxiety was, and is, a great problem in my life. I had no one to talk to except a three-year-old who hated me most days, and my depression was just awful. It even occurred to me to surrender Matthew to the local Department office and let them deal with all the problems. But I knew we would never see him again if I did that, and I knew too, that they would not bother with the reconstructive surgery either. If it had not been for Michelle and her husband, Greg, Louise and Bob, I do not think we would have made it, Matthew and I.

After a month of turning the rods, a beautiful chin sat comfortably below his mouth. It was pronounced "an unexpected success." The doctor trimmed the rods, a traumatic and painful process for Matthew, with tools that looked like they came straight out of a metal shop. The ends of the rods tucked neatly, although not comfortably, inside his lower lip, and we were given the all clear to go home and resume our lives. Trevor and Tim came down to pick us up, but we stayed an extra day to celebrate with a trip to Dreamworld, where both boys had a ball.

We came home to lovely, familiar surroundings and ecstatic dogs ... still with a trache, but with a whole face. Matthew returned to Kindy, and the other children admired his new chin. Everyone did actually, because he continually pointed to it. Every passing stranger was bailed up and required to admire it. For a long time, I was terrified that he would knock it and that it would shatter. But that has not happened yet, and I have largely stopped worrying about it, because I always wanted him to do what the other kids were doing as much as possible, without restrictions.

The speech therapist decided that this was a good time to try him with a speech valve. This item was a small, purple cylindrical object that fitted onto the end of the tracheostomy tube. It was a one-way valve, so that Matthew could inhale through it, but not exhale: the air was forced up through his dysfunctional airway via the larynx, thus producing sounds. This sounded great in theory, however she was assuming Matthew's co-operation with it all, which was way too optimistic, in my opinion.

The first time she tried it on him, he discovered an especially forceful puff would blow the thing off - this became a wonderful game, of course. The poor woman did not know what to do, so she gave it to me and told me to "try it at home" - a classic case of passing the buck if ever I have seen one. Needless to say, we had very little success with it at home, although he did enjoy squealing through it now and then.

With a top lip comprised entirely of grafted tissue, and a bottom lip which had no feeling left – "oh, we think the midline nerve might have been severed at some time in the surgery" – Matthew dribbled endlessly. I'm not exactly phobic about saliva, but very close to it, and I had a horror of this child wearing a bib forever. At one point, watching Wimbledon, inspiration struck me – wristbands. We made him a set of towelling wristbands, and taught him to keep his mouth dry. It worked beautifully. I should have patented the idea, because the speechies at the hospital began suggesting it to parents of other kids with oral issues.

The tapes which held his tracheostomy tube in place were white cotton, and became filthy and discoloured within a day of changing them. They also chafed him when they became damp, so I searched around for an alternative. On the Internet, I discovered a company in the United States that manufactured chains of surgical steel for the purpose. These were more secure, washable and reusable, and looked a whole lot better than dirty tapes around his neck. Unfortunately, they were not available in Australia, so I imported them in bulk, and distributed them to other parents of "trache kids", via Margo, the nurse who worked with them.

Matthew was to have the metal left in his mouth, presumably to allow the bone to strengthen, for three months, and was then booked to go back to theatre for its removal. This took us up to September of that terrible year, and we went through the whole process yet again.

By now, though, we were all getting excited. The next step was for him to be assessed for the removal of the tracheostomy. He had another bronchoscopy done. The bad news was that he had many small growths, called stenoses and granulomas, in the airway, which would have to be removed before consideration was given to decannulation. The good news was surgery to remove these growths was performed swiftly and successfully. The Big Day was approaching fast...

Matthew and I returned to the little flat in December, but this time it was with a feeling of anticipation, not dread. There would be no surgery, no pain, and only a week or so away from home. The only unfortunate aspect was that the dates clashed with my older son's graduation from high school. Two landmark events: Matthew to breathe on his own, and Tim to leave school having achieved tremendous things. Much as I wanted to see my beautiful son in a dinner suit, making his entrance with a lovely young lady, and taking his place within his peer group of normal kids, I had to stay with Matthew. It was not the first or the last time I would have to choose between the different needs of my sons.

Matthew was admitted into hospital, back to the ward where he had spent so much of his babyhood, and where he had the most fans. By then, at age four, he was regularly spreading himself across several Queensland hospitals.

The young nurse looking after him on the first evening assured me confidently that I could leave overnight because he was such a little angel and she could manage. I tried to tell her about his behaviour - I truly did, but she did not believe me. Oh well, I was dying to get back to the flat, have a swim and an early night. All of which I did, very happily, knowing "the little angel" was being well taken care of.

I walked in to my cherub's room the next morning, and sat with him, waiting for the doctors' rounds, when I hoped to get information about the decannulation process. All of a sudden, the young nurse stomped in, and threw a clipboard on the foot of the bed.

"Your son ..." she spat out, "... is a little devil!"

"Not an angel?" I asked, sweetly. "What did he do?" Nothing would have surprised me at that point, and I was thrilled that he was behaving badly for someone else, not just me.

"He wet the bed twice ... took off, then I found him in the next ward ..." she paused.

"I did suggest putting him in a cot rather than a bed," I pointed out.

"When I set his feed up, he kept playing with the pump, and I had to run between him and the nurses' station every time the alarm went off ..."

"Did you put socks on his hands? That usually stops him."

"I didn't think of it ... and then he opened the medication port on the tube and flooded the bed!" I just laughed, with some sympathy. But she was not finished.

"While I was making his bed, he ran off again ... then when I finally put him back into bed, he wet it again straight away!" The poor girl still looked exhausted.

Matthew had had a naughty party!

I think his fan club on the ward became a little more realistic about Matthew this time around. It was such a treat for me to hear from someone else about the behaviour that I was dealing with daily. They all still loved him, but were just a little firmer with him, a little warier.

The doctor arrived with the "trache nurse," Margo - I never did discover her correct title, but she looked after all the "trache kids" and their Mums extremely well. Decannulation took place over three days. Margo capped the tracheostomy tube, and then his oxygen levels were monitored constantly. As she capped it, I could hardly breathe myself. I waited for him to cough, to struggle, turn blue. But he did not skip a beat. The challenge after that was to keep him in the bed for most of the time, as he was hooked up to a monitor. Louise came in for some of the time, and together we played, read, listened to music, played music -I took an electronic keyboard in for him - and sometimes just watched television. It was a difficult three days, but absolutely essential to ensure the safety of his airway.

Finally, the Great Day came. I had not slept because I was so nervous and excited at the same time. We waited impatiently for the doctor to arrive. When he did, he reviewed Matthew's oxygen levels and went to undo the tapes on the trache tube to remove it. I grabbed his arm. "This is mine," I said, "I will do this." Matthew was watching television at the time. When the glorious moment came, and his mother swept the tube away with a flourish, he did not even look up. This would have been quite anti-climactic had it not been for the applause around the watching ward: doctors, nurses, children, parents ... everyone was clapping. Then his Royal Highness looked up - he is automatically attracted to applause. What's all the fuss about? He seemed bemused.

Matthew was monitored for the rest of the day, then allowed to go. We had to stay around Brisbane for a week, just in case any problems developed. The sort of specialised medical care Matthew required was frequently not available at our local hospitals. There were no problems at all.

They had taped up the hole (stoma) with heavy duty, waterproof tape, so the first thing I did when we got back to the flat was to take him for his very first swim. He was nearly four. At first, he was quite freaked out in the water. I had him in an inflatable ring-type toy, and he panicked and grabbed onto me - his grip was incredible! Eventually my left nipple did recover from its crushing though. Gradually, he relaxed and let me pull him around the pool gently. What a heady day! I could not believe the relief I felt. Life was going to be so different from now on.

Chapter 8: Normal Life?

Our euphoria over losing the trache forever was short-lived. The next step involved Swallow Studies. This sounds so gracefully avian, however it was nothing so attractive.

Minute amounts of semi-liquid and pureed food, containing dye, were somehow inserted into Matthew's mouth, despite ferocious resistance, then its downward progress was x-rayed. The child was definitely not compliant: the whole process involved about ten people. This should have shrieked a warning to me.

The speech therapists in Brisbane told us to take him home and start feeding him solid food, giving us specific consistencies: yoghurt, custard, baby food, and so on. Naively again, we thought that he would be avid to eat real food. We were quite wrong.

We started slowly, but he hated even one spoonful of yoghurt. Strapped into his highchair, he still fought, kicked, and scratched. The stoma, or tracheostomy opening, had not closed on its own, so the child had three orifices from which to project unwanted substances. Without the trache tube, he could now scream extremely well too. We took to laying down drop cloths and wearing protective gear. It was a two-person job: one of us had to restrain him physically, the other had to pry his mouth open and wedge the spoon in. It was unbelievably horrible.

We phoned one of the speech therapists and were told to persevere. We kept this mind-numbing exercise up for a couple of months, but eventually our determination was worn down. I had enough of it. It really felt like child abuse, and things were not improving. He was being fully nourished with the enteral feeds anyway. From his perspective, it was a total invasion, after nearly four years of nothing in his mouth whatsoever.

So I notified the speech therapist of our refusal to continue with it, stating that Matthew would eat solid food when and if he chose to do so himself. I was essentially labelled a "bad mother" (again), but I did not care about it at that point. All I wanted was an end to the misery in the house, which had affected all of us.

In the early days, we went through a number of dietitians, trying to discover why the child had constant diarrhea. Apart from our obvious concerns for his overall health, it made nappy-changing and toilet-training unpleasant and problematic. It turned out he was lactose-intolerant, like many Indigenous children. As lactose-free milk provided him with the enzyme he needed to balance his system, we have often found ourselves driving two hundred kilometres to buy milk, as it is not available locally.

Matthew had a new freedom now. He did not need someone hanging over his shoulder with a suction pump all the time. I could leave him at Kindy and not have to sit outside poised with the pump. It was pure bliss for both of us.

With a minimum of fuss, Matthew had the tracheostomy surgically closed early in the year, and as usual, he healed beautifully, with only a thin white line across his throat to remind us of that hated, but vital, silicone tube. He had undergone seven general anaesthetics in the space of a year.

At one point, I achieved a major coup, and created an historical precedent by convincing three separate specialists to share an anaesthetic! It took months of organisation and my best public relations skills for three extremely busy men to wrestle their surgery schedules in order to take turns with each other at Matthew's operating table.

After decannulation, the biggest change for Matthew was the ability to make noise ... and did he make up for lost time! It was hilarious listening to him experiment with different sounds. He was perpetually surprised and proud of himself. His favourite noise was a high-pitched squeal that was guaranteed to paralyse everyone in the immediate vicinity, and was particularly effective on a plane.

One of my clearest memories of D(ecannulation)-Day was of laughter. A couple of hours after I removed the tube for the last time, I was standing outside Matthew's room, at the Nurses' Station, and heard gales of laughter behind me. I turned to see Matthew rolling around on the floor, clutching his ribs with mirth. Peals of effervescent giggles poured out him – he was tickling himself with the sound of his own laughter, which no one had ever heard before, including him. The rest of the ward paused and laughed with him, the little manic Tinkerbell. No other parent could ever get more pleasure from that sound, having waited so long to hear it.

A local speech therapist continued to work diligently with him, although Matthew spent most sessions fooling around and being naughty. When he did finally speak, after they told us it would probably never happen, his first word was "helicopter." This was so typical of this child: poor prognoses, no effort, then just as everyone's hopes were fading, he comes out with a four-syllable word. According to the speech therapist, he did not even have the physical equipment to produce some of those consonants. She had no idea how he was doing it, but even she could not deny the evidence. I was starting to doubt her effectiveness in any case. Her sessions with Matthew sounded more and more like an unruly zoo.

Matthew's ability to produce any recognisable speech amazed everyone. As well as having just a small stump for a tongue, he had no sensation in either top or bottom lip and his teeth were hopelessly misplaced. Yet he managed to compensate in different ways, through sheer determination, I believe. Consonants were particularly challenging for him to produce, and the speech therapist developed a theory that he was actually producing the more guttural-sounding consonants from his throat rather than his mouth, for example hard "g" and "d". He used substitution for others, like an exaggerated lisp: "w" for "r', for example, and often omitted impossible sounds, such as "th" completely, relying on making the vowel sounds extra clear for understanding.

The problems with Matthew's swallowing were not clearly identified at that time. It was felt that there was a combination of factors, not least of which was his total lack of compliance. His throat/oesophagus was obviously not properly formed, his respiration had always been difficult, hence the tracheostomy, and the lack of a functional tongue also had a bearing on his ability to swallow. Like so many other aspects of Matthew's life, no one seemed able to give us definite reasons or accurate predictions.

With a little more time in the day, with Matthew at Kindy and no trache to care for, I started to do some serious research into his condition. We still had contact with the geneticist, and she had found nothing genetic to account for his problems at birth. Likewise, the pediatricians had nothing solid to offer us in terms of a diagnosis, and they were, I felt, being quite evasive. I was determined to find a cause for it all. This was for several reasons: the child needed to know later on if it would affect his children; a proper diagnosis obviously leads to the most appropriate treatment; and last but not least, I have an absolute determination to know why these things happen.

So I began the search. Matthew's behaviour was worsening. We had episodes of defiance, he did not respond to incentives like other children - neither positive nor negative. He was also showing signs of harming himself and other children, animals, and so on. We went back to the pediatrician: Attention Deficit Disorder was his opinion, Ritalin the solution. I hated putting a young child on medication, but we did not know what else to do.

The Ritalin worked a little for a while. Matthew has proved to have a very high tolerance for medication, so they kept raising the dosage. In the end, even that did not work well anymore. We were sent to a psychologist, at my request, because I would prefer to use behaviour management strategies than medication. This was not his first or last experience with psychologists.

The gold-plated psychologist diagnosed Oppositional-Defiance Disorder and an anxiety disorder with obsessive-compulsive traits. Great. He tried some ideas out and none of them worked. He admitted that these strategies were aimed at teenagers. Wonderful. We were paying a hundred dollars an hour for this.

"Are you giving him 'time out' when he tantrums?" asked Darren, after half a dozen sessions.

"Yes, and it's no better ... he keeps it going for hours some days!"

"Well, here's an idea I've been trying out with some of my other patients ... a combination of deep breathing to relax him, and self-talk to promote self-control." I listened to him with growing sense of deja vu and disbelief.

"One, breathe in, STOP ... out slowly ... two, breathe, THINK ... out ... three, breathe, ACT ... out ..." he demonstrated, confidently.

I could not believe it. This was one of the strategies I had developed for Matthew's outbursts. I had described it to Darren during our first appointment. The man was recycling my ideas and apparently passing them on to other people as his own.

We sacked the psychologist forthwith, after a very frank chat with him, during which I indicated a strong reluctance to pay for that session. He did not press the point.

Now that Matthew could form sounds, even if they were unclear at times, he never stopped talking. So we had one son with a normal tongue who would not speak at all, and another son without a tongue who would not shut up. We knew that he had a developmental delay, but we never accepted that he was "severely retarded" as we had been told. Our belief was vindicated when, at age four, he picked up a book and started reading aloud. Neither of us had taught him to read - he had taught himself.

Matthew's behaviour was essentially no better, despite the Ritalin, in fact it seemed to be getting worse with time and growth in many ways. He seemed to have no concept of consequences at all. "Matthew, if you throw that rock at the dog, you will hurt the dog! You will go to the corner if you throw that again!" The rock was thrown and fortunately missed the dog, the child went, shrieking, to the corner, and spent the rest of the day getting back at us for our perceived crimes against him. He did this by general bedroom destruction and then blamed us for broken toys. There were endless tantrums, and wetting of pants. He hurt the dogs even though he really loved them. It was bewildering to us.

We went back to the doctor. This time, the diagnosis became Asperger's Syndrome. He wanted to put Matthew, at this young age, on Risperdal - an adult medication for psychotic disorders. I knew more about this drug than most people - I've even been on it myself briefly - so I refused the Risperdal on the child's behalf, and we plodded on.

Matthew started at Big School just before he turned five. This year of Pre-School was, essentially, a success for him. Certainly, if we had known what was ahead, we would have savoured his time there a lot more. The main reason for this was a gem of a teacher, Jean Saunders, who had Matthew's measure almost immediately. She combined the right proportions of firmness, encouragement, and expectations. She also liked him, despite his behaviour, which was often disruptive of the class. Matthew blossomed in that year. He also had a wonderful new speech therapist, Wendy. His progress that year was very positive.

His entry into Year One was a disaster. Everything was unfamiliar: teacher, classroom, kids, routine ... and so he shrieked and threw himself on the floor, refusing to get up. He threw things indiscriminately, and was generally considered a menace in the classroom of twenty-five children. The solution was to send him back to Jean in the Pre-School. This worked temporarily, of course, but was simply delaying the inevitable.

With all the commuting we were still doing between doctors, therapists and hospitals for Matthew, our poor old Coaster bus was wearing out. It did a wonderful job, transporting all of us, plus animals on occasion, with all necessary equipment. One day, I took Matthew over to the large regional town to the doctor, as he had a bout of bronchitis. It was a hot day, in early summer, and the engine overheated on the way home. I did notice the plumes of dark smoke thickening behind us, but decided to attribute these to its preference for diesel fuel. I crossed my fingers and held on. It finally gasped its last about six kilometres from home, on an empty country road. Abandoning the corpse, I hoisted a feverish Matthew onto my back, and we began the long, hot walk home. After a couple of kilometres, a car stopped, thankfully, and took us all the way to the front gate.

I had effectively blown up the whole engine, according to my spouse, after a post mortem. We had it repaired, at great cost, then decided, with some sadness, to sell it. With the volume of Matthew's medical equipment reduced, we no longer needed the space, and its unwieldy bulk was rather impractical during the wet season, in terms of crossing our running creek and negotiating our slippery driveway. We sold it, but not before counting that we had travelled in excess of thirty-five thousand kilometres in the space of eighteen months.

With the slight easing of the workload now that the trache was gone, I accepted a job on a council advising the Commonwealth Minister for Disability. This involved regular trips to Canberra and Melbourne, leaving my husband with full care of both boys. He never complained. I found this advocacy work extremely rewarding, and continue to do it in various contexts. We have a long way to go, to level the playing field in this society. My goal is to leave a better quality of life for my sons, and others like them, than I have had.

Chapter 9: Misfit

At this point, most people would be asking some obvious questions. Why would anyone care for a child, not their own, with so many problems and challenges? The glib answer to this is that someone has to, that every child is born with exactly the same right to be loved and nurtured, no matter what. But why does it have to be me? Am I a masochist? Do I have a martyr complex?

The answers lie in my own history. I was born with a genetic vulnerability, which remained mercifully dormant for the first decade of my life, unlike Matthew's issues. I was simultaneously gifted with academic, musical and athletic talents, and started high school at eleven, at an elite private girls' school in Sydney.

Together with the onset of puberty, this school, where I spent the most miserable six years of my life, was the trigger for my psychiatric problems. A perfectionist child, already showing signs of anxiety, with the wisdom of hindsight, did not need to be in an environment of great pressure, surrounded by little girls of privilege, sharpening their claws for the competition their lives were to become. In fairness to them, I was an easy target, and must have seemed extremely weird most of the time.

I first tried to kill myself when I was twelve – a pathetic and ignorant attempt, to be sure, but at the time, having dug around in my wrists with a razorblade, I sat and watched myself bleed, fully expecting all the pain to magically stop at any second.

By fourteen, I had attempted suicide several times, was anorexic and regularly self-harming. With practice, my methods improved, and I was doing some serious damage. My mood swings and self-loathing overtook everything else in my life, as I vacillated between precocious achievements, academically and musically, and being utterly unable to function on a day-to-day basis.

In the nineteen-seventies, there was little in the way of specialist adolescent intervention, so I found myself in adult psychiatric hospitals and wards for most of the eight years between the ages of fourteen and twenty-three. Although I now recognise the imperative to keep me safe from myself in those days, this was far from a satisfactory environment to contain a developing adolescent.

As well as missing out on ordinary social development, I was vulnerable to the behaviours and models of institutionalised adults with chronic mental illnesses. By fifteen, I was a heavy smoker, and bingeing on alcohol, and had become used to the often-bizarre effects of psychotic and irrational behaviour surrounding me. As a child, living in a distorted adult reality, I was also physically and sexually at risk from time to time.

Although I attended school from hospital intermittently, my main world existed in the "safe" corridors of an institution, and in the release given to me by major tranquillisers. At seventeen, my continued anorexia made me susceptible to a near-fatal episode of bacterial meningitis, thus ending my hopes of matriculating from high school.

It was not a good way to enter adulthood. Apart from all the pre-existing psychiatric problems, I had acquired a permanent vision problem from the meningitis. Most people believed I would be either dead or institutionalised before reaching twenty-one. I watched several hospital peers self-destruct and die in those years – so why not me?

Luck had a lot to do with it, looking back. I understand that when a child appears to be so hopeless, so beyond reach, most people give up on them in despair or disgust. I was fortunate to have a few people who believed in me, no matter how negative and destructive my behaviour became.

One of these people was my grandmother – a warm, loving person, with a granite strength of her own, born of her Scottish ancestry, and surviving her own adversity in life. I was her only granddaughter, and she thought I was fundamentally perfect, no matter what I did to myself. Such unconditional love was an anchor for me during the years I spent otherwise adrift.

Another significant person was Jules, the Matron of the first psychiatric hospital I was admitted to for long stretches. As a young, high-achieving, and intelligent person herself, she recognised something in me worth saving, and made me her special project. She taught me much about myself – her words, always delivered with caring, but blunt honesty, certainly had much more impact on me than any of the psychiatrists' lectures. She told me constantly that I was brilliant, talented, and wonderful, despite my self-destructive behaviour – and it made me unable to completely give up on myself, as long as even one person saw those things in me.

Thirty-five years later, and Jules is still an important person in my life, although I lost my grandmother last year. These two people showed me the value of faith and unconditional love. Every child needs someone, even just one person, to believe in them, no matter what their behaviour is, and I have come to believe that this is something which costs relatively little, and should be paid forward.

Bipolar disorder, formerly manic-depression, is a crippling illness. I was unfortunate to have the more severe form: Bipolar I, which included episodic psychosis as a symptom. In my own way, as stubborn as Matthew, I resisted both diagnosis and treatment for many years, intermittently. It is a classic pattern: when I felt well, I did not see the need for medication. Besides, the brief periods between depression and mania, characterised as "hypomania", were always been wonderful, fertile opportunities for me to be creative, as an artist, writer, and musician. Like most people with bipolar, I hated giving up these rare moments of euphoria by taking lithium.

I see the mood swings of bipolar as merely an extension of those everyone experiences. It is just a matter of degree. After nearly twenty years of compliance with treatment, I have had no psychotic symptoms for several years now, and am hopeful they have passed for good. Perhaps middle-age has its advantages, after all.

My adolescence was a horrifying battle between trying to live and trying to die, unable to see any meaning in the process. At the time, I felt like the only person on earth, impossibly alone. The experience left me with two powerful beliefs: to use pain to find meaning; and to have faith that whatever you put into the world will return to you eventually in some form. Life must contain some form of justice to be worth living.

My theory is that my own combination of gifts and disabilities has given me a particular empathy with kids who do not fit in for some reason – because they are in care or disabled or disempowered in some other way. I am not at all religious, but I do believe that I have been given an opportunity to make a difference by advocating for disenfranchised people, children in particular. How else can I make sense of my own pain? If I do not use it for something positive, then it was all for nothing.

My early experiences have been useful in raising children with problems, especially Tim and Matthew, in the sense that I understand them well, and am a passionate advocate for their rights and needs. But the outside world has often made it more difficult for my sons because of my bipolar disorder as well. If women, mothers, are still not taken seriously as experts on their children, then having an additional mental illness has reduced my credibility tenfold. Individuals and organisations have even used it as an excuse to further disadvantage Matthew and his family, as it adds an extra layer of complexity and stigma.

I think this child found me for a reason, maybe more than one. He gives me the chance to extend myself, to endure, to put my own disability in perspective, and function on a daily basis. To him, I am able to give my best attempts at advocacy – not always successfully, but at least I will not give up on him.

Chapter 10: Shooting Star

Two thousand and five, Matthew's sixth year, began badly. This was the time when Jess, his biological mother, died in Sydney. We spent a week with her just before she passed away, and that made her very happy, although there was no understanding of the situation on Matthew's part.

Added to that, my older son, Tim, was very ill. He had for months been eating less and less. Already tall and thin, he became emaciated, although we were pouring Ensure into him. All it did was keep him alive, just barely. We were horrified to encounter health professionals, who apparently held the view that the Tims of this world should be allowed to die rather than take up valuable hospital resources. The medical profession allowed him to waste away for a full year before he was reluctantly referred to a doctor in Brisbane. I had to organise this myself, and call on our politician friend for help. She knew us, of course from the adoption debacle.

We believed that Tim was dying. He was too weak to get off his bed most days, and his eyes were glazing over. He was giving up. We were reduced to feeding him liquids with a teaspoon, to minimise the vomiting. His grand mal seizures continued, unabated. Watching his frail body wracked with convulsions devastated both of us, as we were trying desperately to get an oxygen mask on his thrashing head. We would have done anything at that point, to reduce his suffering.

The doctor in charge of the adult medical ward to which Tim was referred, initially refused to admit him: "I'm not having him on my ward" were his exact words. Our friend, the prominent politician, prevailed again, and Tim was admitted. However, on instructions from this doctor, the nurses were not allowed to actually nurse Tim. He was put in an Isolation room, with my husband and I nursing him in shifts around the clock.

After tests, Tim's problems were easily diagnosed and treated: he had a hiatus hernia and dental problems - hence the anorexia. The thought that these things could have been fixed a year before made me want to scream with frustration. In fact, this experience is quite typical for people with disabilities and health problems in Queensland, unfortunately. It is yet another appalling indictment of the whole health system, I believe. The best measure of the quality of any society is the way it treats its most vulnerable members.

While all of this was going on for Tim, Matthew had to take a back seat, which did not suit him at all. I have a vivid memory of an evening when Tim had a terrible seizure. The ambulance arrived, but the paramedics could not make themselves heard over Matthew's screaming. "Take me! I sick! Take me!" He simply could not bear anyone else being the centre of attention.

In the course of my online research, I had come across a couple of groups for parents of children with cranio-facial abnormalities. I joined these groups and found them to be a useful way of learning about various disorders and finding solutions for problems. I discovered the full range of horrific deformities that babies can be born with. I learned that Matthew was, in fact, luckier than many.

One of these organisations had a celebrity sponsor: a famous diva. She had developed a special interest in these kids through filming of a movie about a boy with cranio-facial abnormalities. At the time of the Australian leg of her final world tour in two thousand and five, a friend in this particular organisation, based in America, arranged for Matthew and his family to have a "Meet and Greet" with her at the Brisbane concert. Matthew had always loved her music, and had been bopping along to it since he was three. So we were all very excited.

We travelled to Brisbane, and dressed up for the concert. I put Matthew in an all-leather outfit, which looked fantastic on him. Her warm up act was a particularly colourful pop group from the Eighties, then there was an interval, and the star's assistant came to get us. Backstage, we met the pop group, still dressed in their amazing costumes, which Matthew adored, of course, and those lovely guys insisted on having their photographs taken with him. Then we went in to meet the diva. Bodyguards and assistants abounded. Matthew called out "'Her!", excitedly. He treated her like an old friend, and she was lovely to him. She posed for photos with us, although she did not seem to like Trevor and I as much after she found out that we were just foster-parents. I believe that she was fostered at one point herself, which may explain the prejudice. We left with her calling out that Matthew was her "new man".

A few days later, I received a call from her assistant to say the star wanted us to travel down to Sydney for her final concert in Australia. Wow. It was surreal. So Matthew and I were flown down, picked up in a limousine, and chauffeured to the same posh hotel where the entertainer was staying herself. That night we were similarly chauffeured to the concert and taken straight backstage.

When we arrived at the door, it was obvious that the star of the show was receiving some sort of presentation from someone important, so I had to restrain Matthew firmly by the shoulders until the bodyguard said "Okay, you can go in now". I let go of Matthew, and he ran the length of the room, yelling "'Her! 'Her!" and threw himself into her arms. Well, there were people teary everywhere, including "Her." What a loss to the dramatic arts this child is!

"Who dresses him? He is so cool!" She asked me. With his arms still wrapped around her neck, Matthew looked like a little monkey. I mean, really, did we look like the sort of people who could afford designer clothing and a valet for a five-year-old? It was all from eBay.

"Well, that would be me," I replied, uncomfortably. I think her estimate of me went up very slightly at that point.

She asked us to "hang" in her dressing room, but "hanging" is not Matthew's forte. So after ten minutes of disruption, the entertainer's assistant took us to have a look at her wigs, costumes and stage props. Matthew loved the elephant, while I enjoyed the multicoloured wigs.

Matthew's new friend insisted we be seated in the dead centre of the front row. It was amazing. As she came down, lowered spectacularly on a platform, onto the stage, to start the concert, she walked right to the front and signed "I love you" to Matthew, perched on my aching hip. She then proceeded to sing a large part of the concert directly to him. He was the only child in the audience I could see, and everyone knew that he was special, because of the attention she paid him.

At the end of the concert, he was inconsolable. There were tears and wails of tired anti-climax. We walked backstage to "our" limo, and a bodyguard stopped us. As soon as he opened the door, I realised why. The vehicles were in a compound surrounded by a ten-foot wire fence, and there were literally hundreds of people screaming and banging on the wire. When they saw Matthew they went nuts, recognising him as the object of the diva's special interest, and the bodyguard had to shield us to get to the car. It took ages to get out of the compound, as crowds lined the road. Matthew, needless to say, thought that all this was fabulous!

We did not see the star again. She slipped out of the hotel early the next day. We did see her band and back up singers though, just as they were boarding their coach to the airport. They recognised us, and Matthew got passed around the bus like a cute parcel. The guitarist gave the boy his favourite pick, when I told him about the child starting guitar lessons, and I chatted to the drummer, who started out as a cellist. As a violinist and cellist myself, we found a lot to talk about.

We travelled home, and Matthew, disrupted and anti-climactic, held up our connecting flight by lying on the ground in the airport and refusing to move. Our names were being repeatedly intoned over the public address system, much to my horror. This was not one of my finer maternal moments: I screamed at him, then, already laden with hand luggage, I picked him up under one arm and struggled onto the plane under the heavy glares of the other passengers.

Several weeks after that wonderful experience, I received another call from the entertainer's assistant. This time, she wanted Matthew to go to America, at two weeks' notice. Appreciative as I was, I had several reservations about this. Firstly, this was the time when Tim's health was really poor, and we thought we might lose him. Secondly, I had serious doubts about my ability to cope with Matthew for fourteen hours on a plane, when one hour was so difficult. As he was a child in care still, we had no legal right to even apply for a passport for him, and, with a different system in America, I was unable to make the woman understand this. Finally, I really did not think that Matthew would benefit from an overseas trip where he would be spoiled rotten and the centre of attention the whole time.

Regretfully, I thanked the woman and said "no" - giving my reasons. I was then informed "no one says 'no' to [the star]." I was starting to get a little ticked off with the pressure being applied, so I replied: "There's always a first time." My mouth often engages too quickly, and gets me into trouble. We have not heard from her since, true to the threat.

Overall, I really think that this is not such a bad thing. Maybe she would have given Matthew some great opportunities, maybe not, especially once he became older and not so cute. I cannot fault her generosity to Matthew, but I am sure he will find other role models amongst ordinary mortals.

So his celebrity status was fleeting, but thrilling.

Chapter 11: Disability Politics

By this time, Matthew had no fewer than four government departments controlling his, and by proxy our, lives. I was spending nearly as much time wrangling with them over funding and services as I was being a mother. I discovered early on that any child who does not fit neatly into a diagnostic category is too hard for the system to cope with, so they get shelved indefinitely. Unless they have a difficult mother, that is.

The first cross we had to bear was the Department of Child Safety, Matthew's legal guardian for the first few years he was with us. Matthew was always in a "too hard" basket, and even simple things like getting a consent form signed for surgery was slow and convoluted. I vividly remember an entire surgical team of about eight people kept waiting for nearly two hours while faxes flew around Queensland. The system is not set up to be responsive, and Matthew's needs were almost always immediate. The first three years, when the child was in care and DoCS was his legal guardian, was a very difficult period, and, had Matthew not been the fighter he was, I think we might have given up in the face of mounting odds.

During this time of regular warfare with the Department, we went to court and successfully applied for guardianship of Matthew, with the support Jess put in writing prior to her death. At the time, we thought that this would give us more autonomy and rights regarding decisions for Matthew. What it really meant was that the Department stayed in our lives in a monitoring capacity, but withdrew much of the financial support.

This was fine initially, because we had been told that, with guardianship, we would be able to get funding from the Department of Disability Services. However, this was not the case: DSQ regarded him as being "in care" still, and told us that they did not consider funding for children in care. So each department was basically denying responsibility for the welfare of this child. I wondered how many other children with complex needs were being passed around government departments like hot potatoes.

Long-term guardianship remains a mysterious grey area in Queensland, to this day, and it often seems like they are making it up as they go along, with Matthew as the test case. The Department of Child Safety has sometimes provided financial and other support over the years, intermittently, and usually when they are worried we might give him back.

Matthew, and children like him, fall through the cracks this way, and I believe it is why so many of them end up in institutional care without ever having the chance to fulfill their potential. While I support our Australian efforts to assist in developing and impoverished countries, and even sponsor an African child myself, I believe that we are failing so many children in our own backyard and perhaps our national priorities need re-examination.

As the care of these two boys was twenty-four hours a day, neither my husband nor I could work full-time, therefore we lived on a small pension. Travelling tens of thousands of kilometres per year, just with Matthew, to hospitals, doctors, therapy appointments, and so on proved to be an exercise well beyond our means. He also needed special equipment from time to time, and we could not count on assistance from anyone.

We lived with only the basics, and borrowed money from my family, who had reluctantly accepted the choices we had made in creating our family. To this day, they have received little of it back. There was no way we were going to surrender this child back into a system that would simply let him rot in an institution.

The Health Department was very good to children but not so considerate of adults. Matthew was prioritised for surgery and assessment most of the time: we rarely had to wait more than a few weeks, during the first few years anyway – it has become much worse as he has grown older. Tim's experience, as a disabled adult, was very different. The travel subsidy scheme is ludicrous too: they paid a small fraction of the actual travel cost, a rate which has not been adjusted for many years, and I believe it is an insulting form of discrimination against those of us who do not inhabit cities in Queensland.

Finally, there was the Education Department. I fought hard for the first two years of Matthew's schooling for him to be treated like everyone else. They had a process called "ascertainment," an arbitrary and judgmental exercise, which assessed children with disabilities for extra funding, and they would wear the labels throughout their schooling.

Great pressure was placed on me, by the school, to allow Matthew to be ascertained a year before he even entered the main primary school, well before the age when other children were ascertained. But my argument was that he was too young for big decisions about his future academic needs to be made. I felt that it was purely economic - the school wanted the extra funding. I knew that Matthew was bright, and had the potential to be independent in the right environment: I wanted him to have the same opportunities to prove himself as other children.

At one point, the school went over my head to the Department of Child Safety to get permission, which of course they received. It was the path of least resistance for everyone. So we packed the kids up and drove for six hours, down to Brisbane. I marched straight into the Education Department there and requested to speak to the Minister. Although she was not there on that particular day, I spoke to two of her senior directors, and as a result, Matthew was not ascertained at that time.

When the problems at school became serious two years later, I reluctantly agreed to ascertainment, thinking that it would fund more one-on-one support for Matthew. He was then assessed, but only for his speech problems! I was told that only the "primary disability" was considered. What a joke. I would argue that speech was not his primary disability by then in any case. So he received merely two hours of extra teacher-aide time per week, which to me, was on a par with the insult of the Patient Travel Subsidy Scheme within Health. Furthermore, the school was evasive about the amount of the funding and how it was spent – there was certainly never any evidence of the assistance, academically, socially, or behaviourally.

Between them, these government departments have made our lives a misery. Their lack of basic efficiency, compassion for the individual, flexibility or even commonsense, has ensured that half my life is (still) spent writing letters, filing complaints, begging Ministers for help, and waiting endlessly for clear responses. Words cannot adequately describe my ongoing frustration and despair with these organisations. They each have the word "service" within their title, however, they no longer serve vulnerable people, if in fact they ever did: they have become self-serving and merely a means to their own ineffective existence. This situation has existed for decades, generations even, and successive governments have inherited the problems and failed to effectively address them, merely adding layers of complexity to existing dysfunction.

These systems are founded on the assumption of unquestioning compliance from parents and carers, so when people like me come along, familiar with legislation and rights, experienced in advocacy, we are automatically perceived as threats. This has usually come from a management level, rather than from frontline workers. For extended periods, it seemed as though the personal likes and dislikes of some senior service-providers towards me took precedence over the child's welfare. Over eight years, I have been treated by various people as a threat, an idiot, and an adversary. Vendettas have been waged against me, paranoia aside, and our lives have been made miserable in apparent attempts to "punish" us. From time to time, there have been paperwork and funding "errors", mysterious rumours and threats, both real and implied, flat refusal to communicate, and withholding of funding. At some points, Trevor and I had to live on Vegemite sandwiches so the kids could eat and get to school, when allowances were suddenly cut off.

On one particular occasion, I was required to "prove" my sanity, with the stated position being that I posed a risk to the child. I cannot describe how humiliating this was, after twelve years of caring for some very difficult kids. Fortunately, I had an extremely supportive psychiatrist at the time, who went into battle for me, and there was a back down, without any apology, of course.

The thought that my knowledge of advocacy and my disability combined have actually disadvantaged my family in certain situations is hard to live with. But I cannot accept injustice and incompetence just because it is meted out by a public service department, otherwise I would hardly be doing the right thing by my children.

We have been repeatedly blamed for our lack of access to even basic services because of where we live. Apparently, anything beyond a fifty kilometre radius of whichever public office we approach is too far, too expensive, too much trouble. It is our own fault for living here. Most service-providers will simultaneously acknowledge that the space and lifestyle we provide for the boys out here is therapeutically ideal, however. So we often feel like we cannot win.

One of the main issues has been, and continues to be, the issue of respite care for the family. My husband and I have not gone out to dinner together for at least five years, let alone had a holiday of any description together. We have been made to feel embarrassed and ashamed to ask for luxuries such as respite care for purely recreational reasons.

When he was very young, we tried to place Matthew in short-term respite with other foster-carers. This was a dismal failure. Either his medical and behavioural problems were too much for people, or else he was at risk of harm. One respite carer sent him home after a weekend of heat wave conditions, without having given him one drop of fluid the whole time, because she had not been able to figure out how to plug his tube in, despite us coaching her thoroughly beforehand. It did not occur to her to phone us. He was extremely sick and dehydrated, although the stomach PEG enabled us to re-hydrate him relatively quickly.

After that incident, we were scared to leave him with people without medical training, so we started to canvas respite facilities in the area. Tim had been going to a respite centre for years, once a year, however when we asked them to take Matthew as well, they refused point blank, and subsequently refused to take Tim either. "Too much work for the staff" was a constant refrain, incomprehensible to us, as it was simply our daily routine.

There was one respite facility we did not rate highly, nevertheless we became desperate enough to try them. Over the phone, the manager again reiterated that Tim and Matthew together would be too much work for the staff - I pointed out that we did it every day, but it made no difference. I asked her about emergency respite just for Matthew, given that we needed to get Tim to hospital in Brisbane.

"We only prioritise real parents for emergency respite ... you will never get it," the woman stated, firmly.

"I beg your pardon?"

"Real parents ... biological parents, the ones who have found themselves in difficult situations without having any choice," she said, piously. "You and your husband made a clear choice to take those kids on ... you didn't have to. So obviously you are not as entitled to use our services as other families."

It was not obvious to me at all, as a taxpayer trying to access a publicly funded service. In my outrage, I could not find the right words at the time of this conversation, however plenty of words have occurred to me since.

Her words cut me deeply still, and we have encountered similar attitudes many times since. I have even been told by a couple of people, both male and female, that I am not a "real woman" because I did not give birth to my children. My answer to these terrible accusations is simply to point out that if real parents, and real women were all doing what was required of them, having undergone those magical processes of conception and birth, there would be no need for my involvement at all. The daily demands on us, as "pretend parents", certainly feel very real!

Finally, we were accepted for respite by a service two and half hours' drive away. So the last few years or so have been better. We had five years with essentially no respite, then two years of three days' respite at a time. Not much, but miraculous to us. We could get things done around the house: cleaning, painting, repairs, and so on.

There is no security in this respite however – politics and expediency dictate what and when we receive as assistance, and we are often made to feel guilty for using the resources. For example, at different times, when new managers take over – and it seems like a revolving door there sometimes, we are bluntly told that the facility will no longer take both boys together, as it is not cost effective for them or contravenes their policies. I argue that it is not "respite" for us unless both boys are away together, but it is a favourite and recurring issue. Yet another letter, to yet another Minister.

In recent years, service-providers have treated us with varying degrees of disinterest, which suits us. As long as we do not cost any extra money or cause any waves, our lives are relatively peaceful. This is a terrible comment on our social support systems, when disinterest is the preferable alternative. Respect engenders respect, a forgotten fact, in many places.

Chapter 12: School

Through all the frustrations of dealing with Matthew's behaviour, and the government departments who were supposed to be helping us, there were many bright spots.

Firstly, Tim's health improved steadily after treatment for his hiatus hernia and broken teeth. He was, and still is, a lovely young man, however his life since leaving school has been very limited. As we live in a remote rural area, the services are simply not there, nor does the funding exist for people like Tim, who are so very disabled that they require one-to-one attention at all times. His epilepsy had improved with new medication, and the severe seizures were further apart.

Matthew too, was achieving some marvellous things. In Pre-School and Year One, he showed he had superior reading skills and computer literacy. Other areas needed work, such as his pencil grip and other fine motor tasks. Mathematics emerged as a significant problem area, and his concentration sometimes prevented him from performing as well as he could in a classroom environment.

He started learning the electric guitar, and we bought him a child-sized drum kit. I am a musician myself, and I know how important music is to everyone, but particularly to someone like Matthew, who cannot fully express himself verbally. His progress and love for the guitar has astounded us and made us very proud of him, this child with such "poor fine motor skills."

Matthew did most of Year One in Jean Saunders' classroom, along with the Pre-Schoolers. This worked very well, except I think it was difficult for Jean at times. For the last term of the year, he transitioned back up to the main school to a Year One class. The new teacher was also very good with Matthew: firm but reasonable. There were a few incidents of the child breaking rules, being silly and so on, but nothing too major. We looked forward to Year Two, believing that the worst was past.

Year Two was a disaster from the beginning. The Year One teacher, who had bonded with Matthew, did not have him in her Year Two class after all. In retrospect this was probably the most significant factor in his bad start to Year Two. None of us were expecting it, and no adequate reason was ever given. He did not respond positively to change, and we had expected that Missus Scott would have him in Year Two as well.

The new teacher he had was very sweet and gentle. Unfortunately, this was not what Matthew needed. The year began with ripping things, often belonging to other children, throwing things, disobedience, yelling, lying on the floor, and so on. This was all disruptive, and we started having regular, tense meetings with the School Principal. At each meeting we would reach some sort of consensus on a strategy, then within a few weeks, things would deteriorate again.

Matthew's Maths book came home with senseless scribble in it - he was doing nothing at all it seemed. He could count to a hundred at the age of five, but all of sudden at seven, he could only manage to count to twelve. We were told his other subjects were behind too. But what on earth could we do? The teacher was nice enough, but she had a class of twenty-six kids, and just could not give Matthew the extra attention he needed.

It was at this time that we agreed to ascertainment. But of course, it made no difference at all. Two hours per week for someone with Matthew's inability to focus, control himself, and understand even basic Maths, was barely a drop in the bucket.

Fairly early in the year, some major incidents started to occur regularly. He had a fascination with bathrooms, so he would disappear into the boys' bathroom and refuse to come out. On one occasion, he flooded the bathroom and littered it with soggy paper towels. On another occasion, he followed his teacher into the teachers' bathroom, and crawled under the stall door. Understandably, she was not thrilled by this.

One such episode, which has gone down in the school's history, happened in the middle of the year. A little girl in Matthew's class brought her pet rats to school for "show and tell". There was mummy rat, daddy rat, and thirteen baby rats. After playing with the rodents, the children all went down to the bathrooms to wash their hands. Well, not all of them. Matthew managed to slip away and return to the empty classroom. He broke into the cage, releasing all fifteen of the rats into the room and environs. They did not get them all back. Unfortunately, the incident was treated mostly as a joke, and not a sign of our son's potential for great havoc.

Another incident involved Matthew slipping away from the class and being found in the staff car park, which was strictly out of bounds for students, attempting to remove fuel caps from vehicles. For us, this raised the issue of supervision, and the implications for his safety, with no sense of danger, were frightening. The potential for disaster was apparent to us, however not to others, who thought we were overreacting.

The Principal assured us that supervision was adequate for Matthew's needs. We explained repeatedly the now-evident lack of self-control and sense of danger he had.

"No problem, the staff keep a special eye on Matthew," said the Principal, dismissively and defensively.

"How then did he manage to get into the staff car park? What exactly does a "special eye" involve?" I asked. The Principal was very evasive.

I was starting to get a permanent sick feeling in my stomach when Matthew was at school - I was always waiting for the phone call. And there were many of them. A pattern developed: we would hear nothing, get told nothing, until Matthew did something truly terrible, usually because of inadequate supervision. We were getting fed up with the Principal's promises and assurances. We raised the issue of bullying - which we actually expected with a child who is so different. We were told that there was "no bullying in this school." Yeah, right.

One day, we received a phone call: Matthew was in big trouble for hitting a smaller child. We were horrified: this was the first sign of true aggression he had shown. When he got home, in the course of parental correction, I asked him why he would do such a thing? He told me it was because a bigger boy had hit him first, so he turned around and hit a smaller child in imitation.

The Principal was fed up with me by this stage, so instructed the class teacher not to write anything negative in Matthew's communication book. We became suspicious when, all of a sudden, we were getting "Matthew has had a good day" every day of the week. We certainly did not believe in miracles at that point!

Eventually, the lid came off: some of Matthew's classmates suggested to him that he pull his pants down and expose himself. So, of course, this child who was so non-compliant for us, did exactly that. Subsequently, it turned out Matthew's classroom behaviour had actually worsened in the time the teacher had been fictionalising the communication book, on the Principal's instructions. He was doing things such as throwing objects into the fan, showering the class with various kinds of debris. His throwing arm has always been excellent.

More worrying was the absconding he was doing. He was walking out of the classroom and roaming wherever he wanted. He was found on the road, near the road, in the bathroom, at the Pre-School. One day, I arrived at the classroom early to pick Matthew up for speech therapy, and I found the class sitting in a huddle with the teacher, involved in some activity, while he was just wandering forlornly up and down the back of the classroom, alone, and totally ignored. No wonder he was absconding.

My respect for the School Principal had hit an all-time low. We begged her to use one of my creative solutions to the lunchtime supervision problems, for example, sending him to help in the library - he loved books, but nothing was ever tried. We felt, strongly, that we were just being ignored, then blamed for Matthew's behaviour.

Matthew had two friends in the whole school. They were family friends, and several years older than Matthew. These older boys would take the little boy off for a game of soccer sometimes, or just come and chat with him in the junior playground. Matthew loved this because he had no friends amongst his peers, and the older kids were considered "cool."

One day I was chatting with the older kids, and they described to me how Matthew was being bullied by the kids in his class. As well as thumping him and teasing him, his classmates were taking his things and throwing them in the bin or up trees so that Matthew could not reach them. I had been rousing on him for months about all the things he lost at school, and I felt so mean when they told me this. They had been trying to protect him and stop the bullies, but of course, they were not policemen.

After confronting the Principal with this information and having it denied all over again, these friends were subsequently banned from playing with Matthew. When I heard this, from one of them, I went berserk. How could she be cruel enough to deprive this child of the only friends he had? The kids were deeply hurt and confused too – "We would never hurt Matthew," one of them said to me, thinking it was slur on them.

To this day, I carry some guilt around about this chapter of Matthew's life. I am a direct and impatient woman, and nothing triggers my temper like being patronised and lied to by someone on a power trip. In my frustration with a totally unresponsive Principal and system, I allowed things to become confrontational, which added a whole layer of difficulty to the situation. Logically, I knew that this particular Principal was never going to do the right thing by Matthew - it was just too inconvenient and too expensive. I should have simply avoided the conflict and removed Matthew at the beginning of Year One. Hindsight is a wonderful thing.

Later, we discovered there were many unhappy parents who had moved their children from the school during the reign of this Principal. Unfortunately, Matthew was more damaged by his experiences there than most of the other kids. For a long time after, he would have full panic attacks if we drove past the school. The damage done to him, and to his reputation locally - in a small town - is probably irreparable.

We made the difficult decision to remove Matthew from school altogether.

Chapter 13: Pet Therapy

Our animals have always had an important place in our family, and especially with these two boys. Matthew's early life, in his biological home, was one of isolation, as he spent days and nights segregated in a playpen, with only the family dog for company. So his fascination and adoration of animals, dogs and horses in particular, have been a constant theme. Without exception, our animals have always been gentle and protective of Matthew and Tim, in particular, recognising their vulnerability.

Although the animals inevitably add an extra level of complexity to life from time to time, they give us all so much in terms of love, distraction, humour and humanity. At the time Matthew was first placed with us, we had actually been fostering cruelty cases for the RSPCA, mainly dogs which were the subject of horrible court cases, and therefore could not be adopted out for the duration. Here, at least, they were safe, had paddocks to roam, and company rather than cages.

When we moved from Sydney to our bush acreage, my dream was to have lots of animals. It was one of the main reasons I agreed to the move in the first place. In my usual dedicated way, I worked steadily to achieve this goal in the first twelve months, resulting in three dogs, two kittens, four horses, two pigs, four goats, and assorted chooks and ducks. I could easily write a book on all our animals over the years, especially The Major Goat Gaffe.

We purchased our first pair of does, at what seemed to be a ridiculous sum of money. They were baby Toggenburg-British Alpine crossed, and they were identical twins, which immediately had me suckered. They danced, pranced and played \- more like puppies than anything else. Truly, it was as if they were on springs. We brought them home and continued to enjoy their antics. I named them Cassie and Polly, from the Gemini constellation, thinking I was very clever.

Riding a giddy wave of goat enthusiasm, we next purchased a pair of Angora does; quickly followed by two Saanens and a lovely, gentle Toggenburg buck, called Boris. For a brief period, maybe a month, we thoroughly enjoyed the circus, as they played and cavorted in their paddock.

As they grew, however, small issues began to emerge. Spats, human bottom-butting, fence and goat-shed abuse. I began to notice things, such as the sharp, triangular shape of their faces as their horns grew, the unnatural rectangular pupils of their eyes, and their consistent insolence. In fact, their resemblance to Satan and his close relatives became more marked with each passing day.

The biggest issue, initially, was the fence, and this came to dominate our lives. We thought that there should be one. The goats disagreed. The four-strand wire fence was a preliminary joke, ineffective within seconds. We purchased a special goat mesh next, which succeeded for a few days until Cassie – there is one in every bunch - worked out the weak spot at the gate. Finally we purchased a solar-powered electric fence, and the grand total for fencing material reached double what we paid for the goats themselves. The goats were winning the war, hoofs down.

The reproductive capability of goats is breathtaking. In the first year, most of our does produced either twins or triplets, bringing our total population within a couple of years, to twenty-odd. Of course, the babies were gorgeous, and we fell in love with the idea of goats all over again. After the first year, something sinister began to occur: close relatives began to consort. Intimately. Even when I learned incest taboos were routinely ignored by goats, I remained somewhat disturbed by it all.

After kids, comes the milking. Milking goats is not easy, but by then I should not have been surprised. I had imagined tranquil moments, gently bonding with the animal, as fragrant milk flowed into a nice, clean bucket. Hah! Firstly, I learned that goats are not cows. They dislike being milked. They believe passionately that it is their milk and we are stealing it. Unlike cows, they never, ever, become resigned to, or accepting of the whole unjust, undignified milking thing, so they resist it strenuously.

With Tim and Matthew dominating our lives, there has been no room for goats since then. For years, we had horses who thought they were dogs, dogs who thought they were human, and cats who did not know what they were. We had a proud saying that there was nothing "normal" on this property.

Three of our horses were cruelty or abandonment cases. Pip was my first horse. In retrospect, I should have taken someone knowledgeable with me when I found her. Although I had ridden as a city kid when I was young, I knew next to nothing about buying a horse. I chose this one because she picked pockets, basically - I thought it was cute. For the record, this is not a good criterion for horse purchasing.

She had been roughly treated, and her mouth was like leather. Re-education helped a little, although Pip's main aim in life has always been to get rid of that wretched irritant on her back. Me. I have bitten the dust numerous times. But we have had some good rides with friends and neighbours – she liked other horses, it was just humans she hated. She had a torrid interlude with the Arab stallion down the road for a while. Although no offspring came of it, their romance kept the local farmers awake for a week.

Pip had some social problems too. A friend of ours once visited and left his truck at the top of our driveway. While having a beer, we heard "clunk, clunk" and looked out the window to see a straw broom, some clothing and a pair of boots go hurtling down the steep driveway as Pip unpacked the back of Reg's ute. She also liked to eat cars, or parts thereof. Occasionally, visitors would find windscreen wipers, mud flaps and side mirrors removed.

Pip did not like dogs, as with many horses. However, this horse actively tried to kill them. She hunted them down if they were on her property. There was a feral dog pack around here somewhere, but we never saw it. After the advent of Tim, then Matthew, Pip became a happy lawnmower in her old age. She always had a particular fondness for Matthew, who fed her bread through the fence from the time he could toddle down to it.

Some not-so-responsible neighbours of ours did an overnight flit back to South Australia, deeply in debt. On their way past, they dumped a mare and her six-week-old foal at our place. These horses had been starved for weeks. In drought here in Queensland, there was no feed in the paddocks at all, and these people had not managed to buy any hay. It was a miracle that the foal was born alive, particularly as the mare had been deprived of water for some time as well.

So we had Jez, a quarter-horse-Arab, and her foal, which I named Ziggy Stardust, from my David Bowie years. He was beautiful, and quickly became my baby, much to Mac's disgust. He was so very naughty and inquisitive, he got himself into a lot of trouble, and the mares, especially Pip, laid into him regularly.

I decided to have a go at training him myself, although I had only ever trained dogs before. Therefore, Ziggy came to think of himself as one of the dogs. This led to some problems: for example, he could not understand why the other dogs were in the house and he was not. He used to stand at the house-yard fence and put his front hoof through the bottom strand of wire, then squeal and pretend to be caught. When one of us pounded down to rescue him, he would pull his foot out and gallop away.

Once, when my husband went up to repair a fence he had broken, Ziggy hovered behind him, awaiting an opportunity. Finally, he quickly snatched off my husband's hat, and took off across the ridge with it. It took the better part of an hour for Trevor to get it back, slightly munched.

Unlike his mother, who had been a mistreated stock horse for most of her life and hated or feared all humans, Ziggy adored human company, and loved to play games with us and with the kids. He had the trick of galloping towards someone like an ungainly freight train, then throwing on his clumsy brakes at the last moment. To the uninitiated, this could be quite frightening, especially once he grew to be sixteen hands high. My husband and our first foster-daughter were quite terrified by this trick, and used to run. I ignored him, so he did not bother doing it to me.

One day, when our foster-daughter was about twelve, and had a friend over for the day, I heard cries for help from our bottom creek. Fearing snakes and other nasties, I leapt into our four-wheel-drive, and drove down as fast as I could. There they were: two little girls up a tree, with Ziggy nuzzling their toes and looking smug.

After I lost my first Rottweiler, Mac, to a brain tumour, I acquired another Rotty pup, George, having fallen in love with the intelligence and loyalty of the breed. Mac and George have been an integral part of my life and my wellness, as my companion animals. The simple, non-judgmental devotion of dogs could teach human beings many things.

Animals are invaluable here, as company and entertainment. We have many "circus" moments here. At one point, I hit on the marvellous idea of getting Matthew his very own pet, as both a project, and to teach him a sense of responsibility. This became known as The Great Rat Mistake.

Given his fascination with rodents during his disastrous Year Two at school, I bought him a young white rat, which we called "Bip," as we were going through a retro, Marcel Marceau phase at the time.

The very first time I tried to teach Bip to sit nicely on Matthew's shoulder, his tail tickled the child's neck, so he reached up, grabbed the little rat and threw it across the room. The rat survived, but my hopes for teaching Matthew to be responsible for a pet did not. We bought a companion for Bip, and a spacious cage, where they lived out their days on a high shelf. We had learned yet another lesson from Matthew.

Chapter 14: Learning Not to Teach

With only one fully-equipped school in the rural area where we live, our options were few. We could move house, which was impractical financially, and would have devastated Tim, or I could give up what I was doing and home-school Matthew. We decided to try home-schooling.

As previously mentioned, I am not a patient person by nature, and I had minimal experience of teaching anything other than violin, but I figured that I had a brain and some creativity, so the rest should just flow. In other words, I was optimistic without foundation.

When I undertake a task, I tend to go slightly overboard in my commitment to it. We spent a fortune on books and educational resources. I trawled the Internet for further material. I spent hours drawing up programmes - for the year, for the term and for each day. As always, we were unsuccessful in obtaining any practical or financial assistance from services or individuals, as people still did not believe the extent of our safety concerns for Matthew in a mainstream school.

I even enrolled in a Diploma of Education by correspondence - Montessori. I believed, and still believe, that this method of education has a great deal to offer to children with disabilities and learning problems. It concentrates on the individual child, teaching without eroding self-esteem. I was ready, or so I thought.

The first few months of teaching Matthew were fairly successful, if slow, because the child was so relieved not to be at school. I had divided each day into academic mornings and living skills for the afternoons - striking a realistic balance. The mornings were mostly devoted to catching up on all the skills and knowledge that he had actually lost during a year of school. We concentrated on basic Maths skills, which we both hated. However, he did make some progress.

His reading and fine motor skills improved quite dramatically over the next twelve months - these were the areas that interested him consistently. For one term, we devoted ourselves entirely to whales and other marine life, with a trip to the Great Barrier Reef approaching. He learned to research the Internet and the encyclopedia for information, then compiled everything into a Powerpoint presentation. I was so proud of him: we had managed to combine Science, Maths, English, Geography, History, Music and Art into one project.

He learned to read maps and globes, which fascinated him. We studied various different cultures, although I do not think he ever had a clear concept of "other countries," despite the maps – they were just flat shapes and colours to him. He did origami, we made flags and painted pictures of animals from different countries. I started to teach him about his own Indigenous culture too, with Dreamtime stories and discussions about traditional customs.

In the second six months of the home-schooling, things deteriorated rapidly. Matthew became less and less co-operative with all activities, not just Maths. Despite my desperate efforts to motivate him, nothing worked in the end. My patience dwindled, along with his behaviour, and many days were spent with both of us yelling at each other. I felt so inadequate and alone in dealing with these problems.

During this period, Matthew had several doctors' appointments in Brisbane, so we were doing some travelling. I tried to maintain some routine and lessons while we were away, with mixed success.

Matthew had been continuing to self-harm, and although we were consciously trying not to make a big deal out of it, we were very worried. He pulled his stomach PEG out - which must have really hurt; he hit and scratched himself, and stuck tacks in his arms.

The final straw came with three major incidents in a short space of time. The first occurred in a shopping centre car park. I had my hands full of shopping, so I told him to hold my arm while we walked through to my car. A car came along - slowly, thank god - and Matthew deliberately let go of my arm and ran in front of it. I do not know who was more horrified: me, or the poor driver.

The second incident was similar. We were waiting at the cab rank at the city station, with two suitcases and assorted hand luggage. I showed Matthew the line along the footpath and said to stay well back from it because of the traffic. A taxi came whizzing around the corner, and Matthew jumped in front of it, closely followed by his middle-aged mother, while the suitcases tumbled onto the footpath. I dived for him and yanked him out of the way. I thought that driver was going to need treatment for shock.

During that same trip to Brisbane, we arrived at the clinic to be met with the inevitable queue. Matthew is not good in queues, something I understand. So we stood there, and he was getting louder and rowdier by the minute. He kept taking off, knowing that I could not follow him without losing my place in the queue. Finally, he saw a balloon. Matthew has always been obsessed with balloons, to the extent that we have had to ban them in the house. This balloon was attached to a baby, of maybe eighteen months. Matthew clawed the baby and grabbed the balloon. When I intervened, both Matthew and the baby were screaming, and I was getting filthy looks from everyone waiting.

I had the child by the wrists, in my iron grip, so he was yelling and kicking me, scratching and laughing hysterically. I just wanted to be anywhere else, with anyone else. I made up my mind that I was never doing this alone again.

The train, which made a six-hour trip to Brisbane from here, had already indicated a certain reluctance to have Matthew on board, after a trip when he misbehaved and disrupted the whole carriage for the entire trip - Matthew was nothing if not thorough. It was, of course, The Mother's Fault. However, if I had sat on him, bound him and gagged him, the same people would have vilified me for that too. Mothers cannot win, especially when their child has a behaviour disorder. I thought about having a T-shirt made: "Bad Mother" just to get in first.

I had been gently pushing the pediatrician towards a believable diagnosis for some time. My theory was, after researching it, that Matthew had Foetal Alcohol Syndrome, now renamed Foetal Alcohol Spectrum Disorder. Given that Jess had volunteered the information about her alcoholism to me before she died, it seemed to be the most logical place to start. She had told me that she drank during all of her pregnancies - given that she had nine surviving children, the implications were sad and frightening.

Foetal Alcohol Syndrome is diagnosed in the first instance by the pregnancy history. Because the biological mother had passed away, and foster-carers are not considered credible, I was initially told this diagnosis would never be made. But the more I researched it, the better it seemed the pieces fitted together. I joined an Australian organisation, called NOFASARD - The National Organisation for Fetal Alcohol Syndrome and Related Disorders, for parents of children with this horrible disorder, and received enough support to go back to the doctor and put my case again.

It must have seemed incomprehensible to other people that I was fighting for this diagnosis. After five years of living with such severe problems in all areas: physical, mental, behavioural, cognitive, development and so on, we were desperate for an answer. People were focusing upon Matthew's individual problems: no one but us was trying to put it all together.

Finally, we were given a diagnosis of Foetal Alcohol Syndrome. Common features of FAS/FASD include developmental delay, cranio-facial abnormalities, cardiac defects, learning problems - especially in numeracy, problems with physical and cognitive development, concentration, impulse-control, memory, abstract concepts, social skills, and the list goes on. Matthew shows nearly all of these features to some extent.

The recent attempts by Matthew to seriously hurt himself and other people convinced us to try the Risperdal, after eighteen months of resistance. Our reasoning was that other strategies might work over time, but if he killed himself in the interim, they were useless. We needed something to help keep him safe right then and there.

We started him on the smallest possible dose, then, as with the Ritalin, it was increased to the maximum dose for a child his age. Fortunately, he suffered none of the horrible side effects from this drug. It improved his concentration to some extent, and calmed some of the anxiety that caused a lot of his over-the-top behaviour. We found that we could actually reason with him sometimes.

Lessons continued to be difficult, however. When I realised at the end of the term, that we had accomplished virtually nothing except the whale – marine Powerpoint project, I knew that it was no longer working on any level, and could only get worse. I am no good at switching off my feelings, so if Matthew had been needling me all day during his lessons, I could not turn off the anger and impatience at three o'clock, and become Mum again. Our relationship was in the toilet.

I was spending all morning convincing a child that one plus one equals two, knowing that it would all be gone by the following morning and I would have to start over. As a teacher, I had hit the wall. It was not a pretty sight.

Life was not all doom and gloom, despite the torture of Matthew's lessons. He continued to surprise and delight us in many areas. His guitar lessons were progressing well, seeing as I was not his teacher for those, and he practiced religiously every morning. We realised that he thrived on routine, once established.

We signed him up for tap-dancing classes, with some misgivings. Physiotherapists had been shaking their heads over Matthew's poor gross motor skills and co-ordination for years. Well, we thought, this might help to improve those areas. Inspired by the popular movie "Happy Feet," Matthew took to tap like a penguin to water. He adored it.

The first time I saw him dance, in a class full of little girls, to "Eagle Rock," I was so stunned that it took me a few moments to start crying. He was listening, concentrating, obeying, working with the rest of the class and he was relatively well co-ordinated. Wow.... who would have suspected that we had a budding Astaire in this house?

The Living Skills programme that I had devised for Matthew's home-schooling had proved to be the more successful part of it. For this, he did a lot of work with his father mostly: cooking, cleaning, washing, woodwork, car maintenance - both "boy" and "girl" stuff, as our goal was, and is, for him to be independent one day.

Matthew had owned a trampoline since he was five, and by seven, he was doing amazing things on it. His muscle tone, so poor to begin with, had improved immeasurably. His climbing fort and swing were also invaluable in giving him fun physiotherapy.

He had obsessions with things. These obsessions went well beyond ordinary, childish enthusiasms, as he would risk life and limb to gratify them. The first one was with balloons, dating back to the two years in hospital when the nurses had no time to play with him, so would just tie balloons to the bars of his cot.

We then moved through "Thomas the Tank Engine" and "Brum" while he was small. The next really big obsession was with the movie "Finding Nemo." He demanded to watch it over and over again, becoming hysterical each time it finished. I believe it was genuine anxiety about never seeing Nemo again, being unable to think beyond the moment. We tried various things to stop the histrionics at the end of the movie, but the only thing that worked was handing him the remote control so that he could decide when the movie should end.

If we were shopping and he saw a Nemo sticker, toy, book, or similar, he would shriek at the top of his voice, electrifying nearby shoppers. There is something unforgettable about his piercing voice paralysing a crowded shop, and drawing every outraged eye. Eventually, Nemo took over our lives and we had to ban him for a while, like the balloons.

The next big obsession was trucks. Any sort of truck was fascinating, and the bigger they were, the better. Some friends arranged for a relative who happened to be a truck-driver, to bring his B-Double down for Matthew to have a close look at. He was beside himself with excitement. Being Matthew, the first thing he found was the horn. He knew every make and type of truck on the road, and could pick them from a distance. I have no idea where he obtained this knowledge - it certainly was not from me.

Both of our boys loved McDonalds, despite all our efforts towards healthy living. As our older son, Tim, was still very underweight, we welcomed anything at all that encouraged him to eat. Matthew did not eat the food, of course, but always had a drink, the toy, and a play in the playground.

On one occasion, Trevor took the boys to McDonalds, bought himself and Tim a meal, and gave Matthew the toy, as usual. As they munched and played at the table, he noticed a large man across the room, staring at them in disbelief and outrage. Trevor could almost see the steam coming out of his ears. He averted his eyes, hoping the man would mind his own business. But it was not to be. The scene of two people eating in front of a small child with no food at all became too much, and he strode over, with an aggressive look on his face.

"What about that poor kid?" he demanded of my husband.

"He can't eat solid food –" With his mouth full, Trevor tried to explain, but the man interrupted.

"Are you going to give him a chip at least?"

Trevor lost patience. "Sure, I'll give him a chip ... you can call the ambulance!" And he yanked up Matthew's T-shirt to display the gastronomy button.

This was an exceptional case, and most people stopped short of actual intervention, but I would always get the most dreadful glares, as I ate my food and bought nothing for the child. Eventually, I pretty much stopped eating in public, which has been good for my waistline.

The movie, "Cars," was our next craze, closely followed by "Happy Feet." Although it was traumatic for him, we were starting to be able to balance these obsessions with other things. We restricted the amount of time he could spend with his craze, then he had to put it away. This has worked fairly well most days.

During our home-schooling period, his greatest advancement was in fine motor activities, such as arts and crafts. He came to love making things: models, puppets, origami, and so on. It was one of the more positive areas we shared during lessons. He also developed an interest in painting and drawing. At school, he had become discouraged because of all his failures there. However, he showed me that he had a good sense of colour and form, even if the patience and concentration were not always there.

Matthew was reading everything at that stage - signs, billboards, price tags, magazines, newspapers, and books. I would bite my tongue rather than express my irritation with his constant parroting – I was so thrilled this particular obsessive habit. He was especially keen on anything with trucks in it, although planes were fairly popular for a while too.

We have had one family holiday in all the time Matthew has been with us. We met up with my best friend from Melbourne in Brisbane. She and her three kids came with us around the beaches, shops, and theme parks. We all had a wonderful time, and Matthew got on well with the older children.

Chapter 15: Intoxicating Effects: Foetal Alcohol Spectrum Disorder

Alcohol is a poison. To a developing foetus, the effects can be catastrophic. I visualise Matthew's soft brain tissue as an intricate three-dimensional net, with savage, random holes punched into it. To some extent, the brain adapts and compensates, finding alternate links to enable him to be such an excellent reader, although without much comprehension, and to produce gems of musicianship, although without consistency.

Alcohol is a teratogen and a neurotoxin i.e. an agent that is known to adversely affect fetal development and cause birth defects and brain damage. Alcohol crosses the placenta freely and produces equivalent concentrations in fetal circulation to that in the mother.

Researchers do not know how much alcohol, if any, is safe to drink during pregnancy and there is also no safe time for consuming alcohol. What they do know is the risk of damage increases the more you drink and that binge drinking is especially harmful.

So less alcohol is better but even small amounts may cause changes to the developing brain so no alcohol is the safest choice for a healthy pregnancy.

Children who have been exposed to alcohol during pregnancy, may have problems with learning, remembering things, attention span (add/adhd), communicating, doing maths and/or controlling their behaviour. A minority of children with FASD may also be small, their faces may look different, and they may have vision and/or hearing problems.

FASD is sometimes confused with developmental delays and behaviour disorders. Only a specially trained doctor can tell for sure and give a complete diagnosis.

Unfortunately in Australia, very few doctors have been trained to diagnose the disabilities that fall under the fetal alcohol spectrum.

Alcohol exposure during pregnancy can cause damage to the structure and function of the developing brain. Children who have been exposed to alcohol may develop more slowly and have a difficult time learning and controlling their behaviour. For example, they may appear to learn how do to a new task one day, and not remember the next.

Other common problems include having trouble:

*adding, subtracting and handling money

*thinking things through / reasoning

*learning from experience

*understanding consequences of their actions

*remembering things, and

*getting along with others.

Because of their disabilities, people who are affected by FASD may have special needs that require life long help - even when they are adults - regarding:

*handling money, such as paying rent and buying food

*learning from their experiences and making changes in their behaviour

*understanding consequences of their behaviour, or "cause and effect"

*interacting with other people socially, and

*keeping a job.

Without diagnosis and appropriate interventions affected people may also develop mental health problems, have trouble with the law, drop out of school (or be disruptive in a classroom), experience unemployment and homelessness and/or may develop alcohol and drug problems.

[taken directly from the NOFASARD website: http://www.nofasard.org]

As you read through this, you may make the mental connections that I have made, particularly with youth problems in our society. Be afraid, very afraid.

I have no training in science, but from my own research and observations, I ask these questions: What if children like my son are just the tip of the iceberg? It is a spectrum disorder, after all. What if a host of childhood problems with mysterious origins are, one day, attributed to alcohol consumption during pregnancy? My personal theory is that the whiter or more middle class a baby is, the more likely it will receive a diagnosis other than FASD, but does that change what it is?

We are appalled at the rate of Attention Deficit Hyperactivity Disorder and Autism Spectrum Disorder diagnoses at the moment – does anyone else see a possible link? What if science proves eventually that even one drink can lower your child's IQ?

Through the experience of parenting Matthew, we have, of course, come to question our own drinking habits. Although we are not that dreaded Australian horror, the teetotal "wowsers," our social drinking habits have changed quietly. For myself, I am finding a new freedom with encroaching old age – I do not care if other people think of me as an eccentric, meddling old nutcase. If I see a pregnant woman in a bar or restaurant, clearly imbibing, I will read her a lecture. I carry wallet photographs of Matthew as ammunition, so be warned!

I began writing this book as a way of giving an older Matthew some insight into his beginnings and why his life has been such a struggle. Along the way it has become a therapy for me as well, and I certainly did not intend for it to become evangelistic. But I must preach a message briefly, if I am to live with my conscience, so please indulge me.

To all women who are pregnant or considering pregnancy:

Think, before raising that glass or bottle to your lips – would you point a loaded, or even unloaded gun at your belly? Would you deliberately ingest any other sort of poison? Do you feel strong enough to raise a child like mine?

If you cannot enjoy a social occasion without alcohol, then you have a health problem that needs addressing before you have a baby.

There is no safe limit. There is no cure. Once done, it cannot be undone.

To governments, legislators, doctors and other professionals:

Are you too nice to save a baby? Tell women the truth – that there is no known safe limit of alcohol consumption for a foetus. For every child you fail to protect in utero, you are responsible. Until your laissez-faire attitudes change, people will continue to make these mistakes in ignorance and complacency.

Warn women, protect foetuses. Put warning labels on all products containing alcohol, push information out there into the void of complacency which venerates beer as a national icon. To hell with cultural traditions and stigmas – children's lives are at stake.

Support the victims and their families without judgment. Early intervention is better than ignoring it or calling it by a different name. Can you live with the consequences of denial and avoidance? Can you sleep at night knowing you have not done everything within your professional power to halt this preventable devastation?

Forget the blame, do not shame, just give it a name.

To the community:

These are as much your children as they are mine. They did not ask for their lives to be like this – the choices were made for them. Their tragedy is ours also, and they have as much right to be here as anyone else. Just as a person using a wheelchair has the right to have access to public places, these children and adults with FASD are entitled to have their needs met to achieve a quality of life we take for granted.

We are all responsible for the way alcohol is used in this society. Foetal Alcohol Spectrum Disorder is absolutely colour-blind and class-insensitive: it is not just an Indigenous problem, or confined to lower socio-economic groups. No matter what label we put on it to make it more palatable, it is still what it is, and it is everywhere.

Find some compassion, because one day this nightmare may visit you in some way.

I would like to make one thing very clear: those biological mothers who have the courage to disclose their drinking habits during pregnancy, and those doctors willing to make the FASD diagnosis early, deserve admiration from all of us. Those mothers are much braver than I am, to face this. They are good mothers and true heroes, because they are risking blame and terrible stigma for the sake of their children. My belief is that, if there were a simple mandatory blood test in existence to screen for FASD in the population, Queensland, particularly, would reel with horror at the proportion of the population affected.

Adolescents and young adults with FASD have the same level of fertility as others their age, with far less personal judgment and control, and a far greater susceptibility to substance abuse, resulting from their pre-natal exposure. The consequences of this potent mix of factors should be clear to all: we are, as a society, facing another generation of children affected by FASD and its endless permutations.

Of the parents of young people with FASD I have spoken to, several are dealing with this reality already, without the support of welfare, legal or health services, who do not want to see this until the harm is already done.

Australia, with our shameful history of alcohol abuse, has both a hidden epidemic of FASD, and an abysmal record of dealing with it. We lag well behind the research, education and treatment existing in other countries, Canada in particular, because of our reluctance to admit that one of our national icons is also a life-destroying drug.

We are fortunate to have at least one active organisation: NOFASARD - The National Organisation for Fetal Alcohol Syndrome and Related Disorders. Run by a tiny handful of dedicated people who are living the nightmare, Sue Miers in particular, this group is tirelessly battering against the walls of ignorance and stigma in this country. They need support to continue this battle.

This is an issue the Australian community cannot continue to ignore or mislabel. It will not go away by itself, and will affect every one of us eventually. Just as we are all responsible for perpetuating the culture and tradition of alcohol use and abuse, so are we responsible for the consequences. In this case, ignorance is not bliss at all.

Chapter 16: Decisions

Matthew's teeth were shockingly misplaced and deformed, as one would expect with such cranio-facial problems. Looking into his mouth was like looking into the Grand Canyon: there was no upper palate to be seen - his mouth just extended, darkly, into his nasal cavity; and he had teeth everywhere, pointing in various directions.

Although he did not use his teeth to eat solid food, they were of poor quality and decayed easily. So we had a series of visits to the specialist dental/orthodontic clinic in Brisbane. He was fitted with a plate to straighten his teeth, and we hoped it would help his clarity of speech as well. The plate was a disaster as well as a huge success, if both are possible.

His speech was marvellous with it - our speechie (speech therapist) was thrilled. But insertion and removal were insurmountable problems. When he tried to do it himself, without a tongue to guide it in and out, he lost his grip on it and it became wedged in his mouth near his airway, causing him to panic. After several attempts at this, I told the orthodontist that it simply was not worth the stress it was causing him, and he finally agreed.

We also noticed that Matthew's mouth was bleeding regularly - not copiously, but enough to concern us. We worked out the problem for ourselves: his upper lip was entirely grafted, and the graft was not growing with the rest of his face, so it was stretching tighter and tighter. Simultaneously, his front teeth were coming through. So, every time he smiled, the teeth pierced his inner top lip.

Subsequently, the specialist team decided Matthew required more surgery to move the teeth and relieve the pressure on the top lip. Thanks to our wonderful public hospital system here, he was on the surgery waiting list for eighteen months. I suppose, compared with all his other problems, not being able to smile properly was considered minor. But I chafed with impatience and frustration as his lip bled daily, and his usual cheeky face assumed a strained expression.

The other thing that I achieved for him that year, was a referral to a child psychiatrist. Again travelling to Brisbane, but this time with another adult, we met this doctor, who impressed me with his attitude to both Matthew and to me.

In discussing the various labels pinned on Matthew over the years, I outlined my theory to him that the child's years in hospital, undergoing multiple major surgeries, was equivalent to child imprisonment and abuse. He agreed wholeheartedly, and diagnosed Post-Traumatic Stress Disorder. This doctor has been very supportive, and is the only one of my acquaintance who willingly gives free phone consultations because of where we live.

I realised, after nearly twelve months, I could not continue to home-school Matthew. Our relationship had fallen apart, the child was flatly refusing to co-operate on any level at all, and my stress levels had escalated into the danger zone.

We looked at the options: none of them were ideal. How I wished for a crystal ball! The only available local school was the one he had left with such negative feelings, so it was pointless sending him back there. There were a couple of small bush schools with fewer than fifty students, but they did not have the resources to cope with Matthew's learning and behaviour problems. One of them offered to have him for one day per week, but that was hardly an education.

All of our other options lay in the large regional town, nearly a hundred kilometres away. There were a couple of private schools, one of which agreed to take him, however we could not afford the fees, and we were by no means sure they would be set up to cope with his special needs.

There was also a Special School, the only one in the area. This school was basically for children with high-level disabilities, and we were reluctant to consider it for many reasons, but primarily because we felt that Matthew's academic potential would not be fulfilled in that environment. But the level of supervision and support there surpassed anything else available.

We batted it back and forth for a couple of months, and in the meantime, the conflict in the house grew worse and worse. It reached the point where I seriously considered giving up on him altogether. I wondered if he would be better off elsewhere? I realised that, if he was living in Brisbane, he would have a whole range of options. But would he find the right home? Would he adjust to leaving the only parents he had ever known?

I was so agonisngly torn by this that I contacted the Department of Child Safety and asked for the adoption process to be suspended. I also told them exactly what was happening - we had not wanted their involvement prior to this desperate time. I decided that it was about time they became positively involved in making difficult decisions for this child, instead of letting us make them then criticising the outcome.

Collectively, we decided to send Matthew to the Special School for three days a week. I spoke to the Principal there, and was impressed with her attitude to me and to the children. The school had undergone major changes since our older son had suffered there. It had a good behaviour management strategy and flexibility between classes, meaning that ability as well as chronological age was taken into account, and students had individual programmes.

Although this was the only logical option in the end, I felt a huge amount of failure and guilt. Home-schooling parents have my admiration - it is so very difficult to teach your own children, and separate the process from your family life. I simply could not do this effectively over time.

My husband and I have worked for decades in the disability sector, and we have always been strongly committed to the principle of inclusion of people with disabilities: meaning that all areas of society, including education, should welcome and meet the needs of individuals with disabilities. Likewise, we have always believed that people achieve great things when given the opportunities that the rest of us take for granted.

We had been encouraging Matthew to rise to expectations, to try things, even if he did not succeed immediately, and to believe in his own, individual abilities, rather than disabilities. By sending him to the Special School, we felt we were betraying Matthew and our long-held principles.

In between my last gasp as his teacher, and his enrollment at the Special School, I took Matthew on a holiday with my friend, Barb, and her three children. We went to a tiny island on the Great Barrier Reef, flying out on a horrible little plane, and staying in an Eco-Resort.

Unfortunately, we had to leave my husband and Tim at home. Although the island had its own little airstrip, it was at least two hours away from medical evacuation by helicopter if Tim had a major seizure. We just could not take the risk. Twice before, we had needed to resuscitate him, and we knew just how close he came to not regaining consciousness.

I was keen to take Matthew on this holiday to try to rebuild our relationship, as well as for educational reasons. We had been attempting to study whales and other marine life for the previous term. I was, however, a little apprehensive about being stranded on a small island with a child whose behaviour was totally unpredictable, and who had the capacity to destroy not just my holiday, but everyone else's experience as well.

Chapter 17: Holiday

The plane looked like a large kite, and just about as stable. The kids were jumping with excitement. Eight seats. Oh god.

I wondered whether it was worth it, but I knew that we had gone beyond the point of no return. We were committed to reaching Lady Elliot Island as much by kids as by deposits. We climbed into a space the size of my bathroom, seating the children strategically by the windows. Instead of the safety spiel you get on most flights, the pilot called over his shoulder "Have you found your seatbelts? Lifejackets under the seats! Good, we'll go then." At least he didn't belabour the need for lifejackets, I thought.

There are many islands dotting Australia's Great Barrier Reef, most of them of the resort-type, with every conceivable luxury and novelty. Lady Elliot, as it is known, is quite unique. It is tinier than the others, taking an hour to circumnavigate on foot, and it is an Eco-Resort. As well as being a tourist destination, it is a wildlife reserve, and nothing natural may be taken off the island: not one shell or piece of coral. There is no fishing, instead a general "look but don't touch" philosophy. The island is a haven for many different species of bird life as well as all marine life. Of particular pride on the Island are their turtle breeding grounds.

I will not dwell on the flight. Matthew squealed with excitement for the entire trip, which did nothing for my nerves. I resisted the urge to kiss the ground when we arrived, as it may have seemed a trifle melodramatic. As we walked over to our accommodation, we were crunching the whole way: I had not realised that the island is entirely coral. We were walking on tiny, eroded pieces of whitened coral. For those who are interested, it is extremely difficult to walk on coral with one foot in a removable cast. I was determined that my lingering injury, a ruptured plantar plate and turf toe, would not prevent me from enjoying the holiday.

The accommodation was basic: bunk beds and a bathroom. But it did not matter much because we were hardly ever in there, and the other facilities were fabulous. There was a bar, a restaurant, a games room, an education center, a children's centre, and a magnificent wide verandah encircling the lot, overlooking the ocean only twenty feet away. It was somewhat ironic that all the lovely seafood we ate was actually flown in. Palm trees and deck chairs dotted the edge of the sand, and surrounded the saltwater swimming pool as well.

Barb and I ordered cocktails, and the waiter brought the children something they called "Mocktails". The kids thought that they were so cool ... colourful, with little umbrellas and slices of orange. Mercifully, Barb's children took Matthew off to explore the games room, with pool, air hockey and playstation, and other youthful temptations. Barb and I just relaxed, planning the following day.

Barb's kids were aged fourteen, twelve, and seven at the time. They were great with Matthew, who must have driven them nuts at times. They included him in everything, and I noticed that his behaviour improved dramatically when he was around them, as if he was trying to imitate somehow. This was wonderful to see.

Early the first morning, we went down to the Dive Shop and hired our wetsuits, snorkelling gear, and lifejackets for non-competent swimmers, meaning Matthew really. For the record, wetsuits are not as slimming as I hoped they might be. We all went out on the glass-bottom boat, and oohed and aahed over the amazing sights below. It was incredible what we could see ... every kind of fish, every colour of coral, octopus, manta rays, giant clams – it was a visual feast.

After a swim in the pool, we gorged ourselves on huge plates of hamburgers and sandwiches. We left the two little ones at the children's centre with the rangers, a great facility, for the afternoon, and they did all sorts of activities, learning about the environment at the same time.

The next day, we headed back out to the reef via the dive boat for some serious snorkelling. Walking across the reef at low tide to reach the boat, I trod on what I though was a rock, but discovered it was squishy instead. Fortunately I had reef shoes on. It was a Sea Hare, and emitted a sudden cloud of purple dye into the shallow water. Wow - how I wished I could do that when I'm ticked off! The air in all the meeting rooms, where I am a burnt-out consumer advocate, would be permanently purple-tinted.

Snorkelling rates as one of the most amazing experiences of my life. At first, I hung around the boat, feeling a little nervous, but once I relaxed, I was a bold adventurer. Unfortunately, I had to leave Matthew on the dive boat: he could not swim properly, nor could he manage the snorkel with the deformities of his mouth and airway. I could not go too far away from the boat because I was not able to guarantee his co-operation with the nice guide who said she would "watch him." Watching Matthew was seldom sufficient, and I was quite resigned to the prospect of fishing him out of the water at least once on the trip.

It was another, incredible world down there .... an exotic garden, an alien landscape. The coral waved gently in the current: clumps of every colour and shape imaginable. Giant clams, with their lacy, tinted lips, peeked out from every crevice. Clown fish - Nemos, as Matthew calls them - zipped in between Zebra fish and multi-coloured Angel fish. I startled a Parrot fish of the most beautiful iridescent turquoise I had ever seen - shy, it whipped into a coral cave, out of sight. It was like a rainbow down there, the colours quite dizzying.

Manta Rays glided overhead like low-flying alien craft, and a small shark wove its way past me. I recoiled quickly, but it took no notice of me. Suddenly, I came upon a silver-tiled wall of Trevally, who peeled off like one single ribbon when they saw me coming. I saw the sand move beneath me and swam in for a closer look. It was a huge Manta, lying camouflaged on the bottom, waiting for lunch to swim past.

Down there, there was no sound at all, heightening all other senses. I felt like I was the only person in the world, this world: as though no one had ever been here before me. Except for the inconvenience of breathing, I would have stayed there forever. I wished I could share it with Matthew, and formed a resolve to get him swimming properly, as a priority.

As I broke the surface, clearing the snorkel of water, I was nearly run over by a humungous turtle. He must have been a metre across. He ignored me entirely ... he probably just thought I was a humpback whale. Lady Elliot is proud of its turtle population, and their lack of fear of humans. These Green Sea Turtles are endangered, so this is one of their rare sanctuaries. They are never hurt or killed there, so they are not nervous of us.

Barb dived again, and this time found a group of turtles: thirteen in all, of assorted size. Later we called it the "turtle hotel." They zoomed around her, almost as if they were putting on a show. Matthew, in the boat was able to see a number of the turtles as they came up to inspect the boat periodically.

That night, we sat happily-exhausted on the verandah, watching some Humpback Whales breaching just beyond the reef. What an amazing day. The following days were just as wonderful, as we further explored the island, particularly the bird life and rock pools. There were even fish who congregated there each dusk, to be handfed!

For the most part, Matthew had behaved extremely well, for him. There were a few instances of tantrums and silliness, but they were not ongoing. He coped well with the change in environment, mainly because he was so distracted by the other kids, and the exciting things to see and do.

On our final evening, we set out for the other side of the island to watch the sun set. We lay on deckchairs while the children played in the rock pools, and sipped champagne as the sun sank, leaving a silver trail I wished I could walk.

I eyed the same plane with dislike. This time I kept my eyes tightly closed as the bloody thing cloud-hopped back to Bundaberg. We lived. Obviously.

It was not long enough, and I know that I did not see everything. I'm going back. If Matthew can swim by then, I might take him too.

Chapter 18: A Fresh Start

Christmas was our usual lazy time, without work or government departments or doctors to worry about. I loved shopping for the boys, although Matthew was much easier to buy for than Tim. Tim received mostly clothes for Christmas, although I bought him a hammock that year as an experiment. Both boys came to love this.

Matthew had moved from the "Cars" obsession to "Ben Ten." At least this character was age appropriate. We had totally protected him from all violence on the screen, even cartoon violence, given his predilection for imitation. In fact, he rarely watched TV at all, just occasional movies. But he was getting older, we recognised we could not protect him forever, and the violence in the Ben Ten episodes was far from real, at least.

Ben Ten was actually a good role model in many ways, we decided. His desire to help other people, his relationship with his family, honesty and so on, had impressed us, out of all the popular characters on television and video games.

So, as well as the Nintendo GameBoy we had finally succumbed to, Matthew received a Ben Ten wristband, drink bottle, lanyard, pen, DVD and game cartridge. He was extremely happy with this haul. We had to ration him to half an hour at a time on the Nintendo, because we found that his behaviour worsened considerably after unrestricted time on it.

Christmas Day itself was lovely. Our neighbour lives alone, so he came up to our place for the day, getting a kick out of watching the kids open their presents. My husband, the cook, swears every year that he will serve a cold meal on what is invariably a stinking hot day. But every year, he changes his mind as the Pom in him rises to the surface. So, we had turkey with the trimmings and plum pudding, of course. It was all quite perfect.

At dusk, when it was still very warm, we sat out on the verandah, drinking cold beer, and watched the sun set.

After New Year, the holidays went quickly. I rushed around buying uniforms and school supplies, ready for Matthew's first day of term at the Special School. He was so excited that I was almost insulted. But I understood that he missed having other children around him, and some time free of parents each week.

Initially, we started him with just one day per week. The teacher found a handle on Matthew very quickly, and his behaviour was well-managed from the start. Soon we were able to increase his attendance to three days per week, which enabled him to fall into the routine much better.

For the first time in ages, the child seemed genuinely happy. He was in a safe and caring environment, with children who did not bully him for being different, and he was actually one of the more academically able students. So his self-confidence with schoolwork increased dramatically.

As he settled in happily at school, we noticed a huge difference in his behaviour at home. That is not to say that it was perfect! But it was certainly a relief from the full-blown oppositional stuff we had been experiencing. Whole days passed without Matthew spending any time in the corner at all.

Matthew's attendance at the Special School required a great deal of travelling - three hours per day. Either my husband or I would leave early in the morning to drive him in, then spend the entire day killing time in a town neither of us liked. Then we would pick him up, drive home, eat, then put him to bed. It was a hell of a routine, and we all became exhausted from it.

For a short time, I volunteered as a teacher's assistant at the school, working with an older class. I really enjoyed doing this, and it certainly beat sitting in a hot car for six hours. Unfortunately, this came to end when my health deteriorated. The fatigue, nausea and stomach problems I started to experience were to continue and worsen for the next year.

One of the major attractions at the school for Matthew was bike-riding. The kids did this for physical education, and there were a selection of bikes to fit individual sizes and physical abilities. We had previously tried to teach Matthew how to pedal a tricycle, but he was unable to co-ordinate pedaling and steering. So we eventually accepted that this was one of those activities he would never be able to do.

Well, after a couple of tries, he was off and pedalling with training wheels, motivated by the other students. It became the new obsession. Thrilled as we are every time he develops a positive interest in something, we went out and bought him his own bike. We chose it carefully because we have no smooth surfaces here to ride on: it was a black BMX bike. He had to have a full-face helmet, to protect his lower jaw, plus we bought all the safety gear - pads for knees, elbows, and hands. He looked like a little alien!

Although we had some success with it here at home, Matthew's poor muscle tone made it very hard for him to pedal properly across gravel, grass and dirt surfaces. Plus, he had many spills, despite the training wheels. While his safety gear prevented any major damage, the crashes were discouraging for him.

When he was starting to show a reluctance to ride it, I had a good idea. We took the bike to the school and left it there. So then Matthew rode it and also shared it with other children. His confidence on it started to improve, and he received an award for good bike-riding and good sharing!

At the end of the previous school year, with the prospect of six weeks of a bored child, I organised some private swimming lessons for him, with a local swimming teacher. Swimming is something that is part of Australian culture. We are surrounded by water, and a large proportion of households have either pools or dams on their properties. Many children drown each year in this country, deaths that could often be prevented.

Matthew was motivated by the idea of being able to snorkel with me next time we went to Lady Elliot Island. Although I had tried to teach him to swim myself, the exercise was disastrous, as with most of my attempts to teach him anything at all. We reached the floating/treading water/dog paddle stage, and co-operation came to a full stop.

We had previously made an abortive attempt to introduce him to proper swimming lessons at a large indoor aquatic centre when he was five. He adored the water, and the teacher gently towing him around, but was not prepared to co-operate with actual lessons at that stage. The teacher treated him like a two-year-old, which he also loved. When the time came for the "lesson" to end, there was always a struggle getting him out of the heated water. Unfortunately, the tin roof of the enclosure provided a marvellous echo, so Matthew's tantrums rebounded for half an hour after his lesson had ended, disrupting the entire place.

We finally gave up, after half a dozen attempts, when Trevor took him to swimming one day, and Matthew decided to really pull out all the stops at the end of the lesson. As well as the usual screaming tantrum, he yelled "Help! Help!" repeatedly when he saw his father, and Trevor was forced to pick him up bodily, and remove him to the dressing room. This scene, of a man struggling with a small, screaming child, raised maternal hackles all around the centre, and a phone call was made. Poor Trevor had to explain the child's disabilities to a couple of policemen, who only accepted his account when they witnessed Matthew, giggling and overexcited, running happily around the showers, and showing no fear of his father whatsoever.

We abandoned the swimming lessons at that point, after Trevor flatly refused to take him ever again. But once he was three years older, there was much more motivation the second time around, with Lady Elliott Island behind us.

The swimming lessons were a tremendous success. Matthew made far more progress in two weeks of daily lessons than even the teacher expected. By the end of the fortnight, he was doing everything - kicking, breathing, stroking, swimming underwater, floating, rolling. He had some problems with co-ordinating the three main activities. His stroking was great, his breathing was okay, and his kicking not so good, because his legs don't straighten. But he was actually swimming independently.

I watched each swimming lesson, and I have never seen this child try so hard at anything. Even his concentration was better than usual. It is amazing what motivation can do. Unfortunately, without immediate rewards, Matthew's ability to motivate himself does not exist. The teacher offered him a place in one of her classes, with three other local children. With some reservations, remembering the local school dramas, I agreed.

Matthew's main problem all along was his lack of social skills. He was unable to make the necessary moves to befriend someone or join in a group. He would annoy, even hit children he liked. It was not entirely his fault, however, the children who went to Kindy with him and accepted him then, became older beasts who bullied him and called him names. It is sad that, at some point, children learn to reject "difference": I really do not know whether it is just society generally, or whether it is specifically handed down by the parents of individual children, but the result is cruel. The bullies are likewise losing an opportunity to learn from disability, and to be better people because of their understanding of it.

We humans like to think we are safely "normal," and it is people like Matthew and Tim who reassure us of that comforting fact. However, the concepts of "normality" and "difference" exist on a sliding scale, a spectrum, which I demonstrated with a high school group once. I asked everyone to stand up, initially. They stood, self-consciously.

"Sit down if you wear glasses, contact lenses or hearing aids ..." Four students sat.

"Sit down if you have had an injury or illness recently ..." Two more sat.

"Sit down if your family history contains anything other than white, English-speaking ancestors ..." Six kids sat down.

"Sit down if anyone in your immediate family has been divorced or ever charged with anything illegal ..." Four more down. Only five remained standing.

"Sit down if you are female or have red hair ..." Four sat.

"Congratulations, you are normal!" I said to the remaining boy still on his feet. The class laughed, but some of them looked shocked by the ease with which they could be considered "deviant" or "abnormal" in different contexts, which of course, was my intention all along.

Without disability, our diversity as a social group would be reduced – we would become like a flock of cloned sheep. Disability polarises, as I have experienced over and over again – a child like Matthew brings out both the best and the worst in the people around him. Disability gives us a chance to be a superior social animal, and to develop a higher level of empathy and compassion, therefore it is something we truly need in the community. My hope is that this can be more widely recognised and acknowledged, to reduce my children's isolation.

One day, after watching a Ben Ten episode, Matthew turned to me and said "Mum, Ben is my friend." My heart broke for him. He was nearly nine years' old, and he had never had a real friend. And it was something that we could not do for him, unfortunately. We tried to give him clues to help him socially, but he was mostly bewildered by social mysteries.

Chapter 19: Matthew's View

One of the saving graces of having too much empathy, as a result of being over-psycho-analysed over the years, is that I can occasionally catch a glimpse of what must go in Matthew's head. Or at least I think I do – it helps me to manage in the moment, anyway. If I can accept his thought processes are so totally different from mine, if I can let go of all judgmental frameworks, such as right and wrong, sensible and silly, nice and nasty, then I think I can translate to some extent. This is only a guess, but a good guess, from eight years of close proximity, constant puzzling, and a great deal of research.

With this commentary, I hope I convey Matthew's impulsive, live-in-the-moment existence, his inability to understand abstracts, his difficulties with focus and control, and his vulnerability to over-stimulation.

One minus one is nothing. Nothing, something. Want something. Dog barking. Dust on window, draw in dust....curtain waving ...pull it down. Yell, yell. Hate Maths, hate everything.

One plus two ... light through the door, dog still barking. Truck coming down the road. Want truck. Phone ringing, Mum's voice. No one taking notice of me! Throw book, crash. Mum says "corner." Yell, yell. Hangs up phone. I win. Spider on my door ... spider, spider, SPIDER!

One minus one. Five. Mum frowning, getting cross. She looks so funny. Laugh. Corner again. Yell.

Teacher not looking at me ... looking at Naomi's painting. Rip painting ... now teacher looks at me. Cross face, I laugh. Naomi cries. Laugh at her funny face too.

Going to Brisbane on a plane... plane...plane. Flying, flying. People. Lots of people. People watching me, noticing me. Do a dance for them, yell louder than the plane engine. Nice lady smiles ... looks ... I want to sit on her lap. Pretend to be a kitty...she thinks I'm cute. Mum spoils it.

Doctor's room is so boring ... broken toys. Girl has ball. I want ball ... grab ball. She won't let go. Cries. Hit her. Must have ball. Ball, ball. Mum pulls me away, takes ball, and gives it back to horrible girl. Hate Mum. Yell.

Doctor ... they all look the same, say the same. Boring. Uh-oh ... what's he holding? Needle? Needle ... needle ...NEEDLE! Kick doctor, scratch Mum's hard hands holding me... stop hands. Yell.

Ow! Hurts ... want Mum. Mum! Mum! Mum's always here. Her fault it hurts.

Watching the planes, fly, fly, fly. People everywhere. People not looking. Must make people look. Pull down pants. People looking now - it worked! Funny faces. Mum is cross, yelling, pulling up my pants fast. Yell instead.

Wash hands? Yes, yes, YES ... think it, so DID it. Questions, too many questions ... right answer, wrong answer. What does she want to hear? Yes ... no ... say both in case. Lie or truve? LIE, lie down. She's always cross with me.

I don't know! I don't know. Laugh at cross face. Yell. Got to the corner, yell more. No ... no ... no! Not fair! Want TV. No TV? But I want it. Now. What's later? No TV now.

Wash hair, she says. Shower warm ... play soap game, then water game, then soap game again. Time to get out? Game not over yet ... feels better than washing. Water on floor, shower's fault. Not mine. Water goes cold. Yell.

Play. No one plays with me. Play with dogs. Dog yells, why? I yell too. Dad cross. Corner again. Want to play with dogs ...

Saturday? Want to go to school. Put uniform on. Dad says no school Yell. Hate Dad.

Tidy up bedroom. Not tired, not finished playing. Put toy away, get toy out. Nag, nag. Bed boring. Want to watch TV. They watch TV, why not me? Not fair. Play with tube ... comes apart ... everything wet. WET! WET! Not my fault. Yell.

Chapter 20: Snapshot at Eight

As I sit here writing this, I am watching Matthew bouncing on the trampoline. The dogs are running around him, madly. We have had to enclose the trampoline fully because Matthew taught the dogs to jump up on it.

He is still very happy at school after a term, and, next week, will start catching the bus there for the first time. We are nervous about this and have spoken to the bus driver about Matthew's unpredictable behaviour. He will be sitting in the seat next to the driver to ensure everyone's safety. Matthew is extremely excited about catching the bus, and mercifully, it means far less driving for us.

Matthew's behaviour at home continues to improve, we hope, with maturity. Very soon, I will be asking his doctor to reduce the medication he is on. All that having been said, he put an entire toilet roll down the toilet last night, causing the inevitable. No reason - it was there, so he did it. The only difference this time is that he said "sorry", unprompted, to his father, as the poor man was up to his elbows unblocking it.

He is learning to prepare his own overnight enteral feeds, operate the pump, and to care for his own PEG (Mic-Key). As it is likely that he will always need to be nourished through the gastronomy tube, either fully or partially, it is an essential skill for him to learn towards independence.

He continues to enjoy his extra-curricular activities of guitar, tap dancing and swimming. He may never be like other children his age, but he will be a well-rounded person, whatever his future might be. At times we worry that he is doing too much for such a young child, and we have given him repeated options to drop one or more of these things, but he is determined to continue.

Last week, Matthew came home from his swimming lesson, and announced that he had friends in his class there. My biggest wish for him now is friendship, so I really hope these other children will truly be friends with him.

Sometimes I look at photos of Matthew as a baby to remind myself of just how far he has come. Out of all the children I have worked with and cared for over the years, this child is the most determined, the most difficult, and the toughest fighter. He just stampedes through all the problems and the pain until he reaches the other side. In the process, he charms just about everyone with his cheerful, exuberant personality.

He will be having more surgery on his mouth and teeth in the next month, and will need more surgery in the future, as his face grows. But, in terms of medical and surgical traumas, I doubt that anything will ever be as bad for him, or for me, as the first few years of his life.

Meanwhile, Matthew has started to eat soft, but solid, food of his own volition. He likes custard, yoghurt, mousse and ice cream. He likes pureed vegetables a little less, but isn't that like all kids?

We work on just a couple of things with him at a time, because it is easier for him to focus that way. At the moment we are concentrating on reminding him to say "yes" instead of the generic "ba," and also, importantly, on self-control. If I can get him to stop and think before he throws a tantrum, gets stressed, does something silly, then he will avoid trouble for himself. We use breathing and relaxation exercises to help with his anxiety levels.

My relationship with Matthew has improved since giving up the home-schooling, but we still have a long way to go. I have had to be in so many unpopular roles over the years and sometimes it seems like he either hates or fears me. This is wrenching, but I try to keep in view the facts: that he should not have lived; that he should not have talked, walked, gone to school; and that without the behavioural expectations I impose on him so strictly, he has little hope of being an independent adult.

My health is not good at the moment, and I feel so much older than I should. My worst fear is that I will not be around long enough to see him through to adulthood or else I will not have the energy to do it properly. Although it is hard for me, I am trying to take it all one day at a time, and not think too much about the future.

Today, Matthew is healthy and happy. He is running up to the house, closely followed by the dogs, to get himself a drink and to try to con us into giving him back his computer. This he lost last night by causing the plumbing crisis.

In my experience, the amount of effort and love that you put into anything determines how large the rewards are. The pride and pleasure that we get from Matthew's achievements, even the little ones, are indescribable. He has come, we have come, so far.

But the journey is not over yet.

I wrote this chapter nearly two years ago, in a spirit of optimism. I feel so much wiser now, and realise that no matter how much Matthew learns or seems settled, that can change in an instant, as the FASD throws up a new wrinkle each time we are tempted to complacency.

Chapter 21: Pushing Buttons

Matthew was born to push people's buttons. Without speech to gain attention and make his needs known, he lived in a hospital cot for the first two years of life, at the mercy of a changing parade of overworked staff, and competing with other sick children. He honed his skills in manipulation early that way.

By the time he came to us, the patterns were set. For a small, helpless creature, he had an uncanny knack for finding weak spots in adult relationships, sensitive areas in individuals and situations, and an innate ability to exploit these to create disharmony and negative attention for himself. Unfortunately, he lacked the judgment to know when to stop, and any understanding of the consequences. One of my biggest fears for him is that he will one day push someone, probably a peer, too far and get thoroughly beaten for his sins.

A perfect example of this occurred when my beloved Rottweiler died, when Matthew was six. He loved that dog, as we all did, and was devastated when I could no longer bear the animal's suffering from a brain tumour, and had him euthanased. Mac was a wonderful, easygoing dog, and coped remarkably well with Matt's rough love, but I was afraid that the tumour would alter the dog's behaviour and personality quickly. As a large dog, I could not take the risk of that happening with the children around. Plus the poor dog's quality of life diminished so rapidly, with traumatic seizures and incontinence, I could not keep watching him deteriorate day after day.

Despite his own sadness over the dog, Matthew still seized the opportunity to torment me with the loss. He needled me about it for months. On bad days, he would simply ask me "Where's Mac?" with a sly smirk, just to see me become upset. I would force a poker face as best I could. Years later, he would still try this tactic. "Is Mac dead, Mum?" and he would wait, anticipating my reaction with barely-concealed glee.

When my beloved grandmother died in two thousand and nine, I hid my grief and did not even tell Matthew, knowing there was no way I could bear to be tormented about her passing. He had only ever met her the once, and I had a sneaking suspicion that he did not understand the permanence of death in any case, given his inability to grasp abstract concepts. For weeks I walked around with a lump in my throat rather than give him ammunition, and it was, in part, why I did not travel south for her funeral. She would have understood.

Most of the time, I can see this for what it is: not malice, but rather a compulsion within him to obtain a reaction, even a negative one. As a child with FASD, he has no real empathy or capacity to understand other people's feelings, and no social boundaries. In his mind, the world exists purely for his needs, to be manipulated for that one reason only.

Children with this disorder live in the moment, and their worlds are ruled by ego entirely. Combined with the other deficits associated with FASD, such as lack of judgment, self-control, understanding of danger, the implications are quite frightening for both the individual and for society as a whole. I often wonder how many young juvenile offenders are FASD sufferers, mislabelled as "delinquent," "bad," or "incorrigible".

It is a fact that a child who wakes up each day with the single intention of gaining a reaction, any sort of reaction, from you is extremely wearing to be around. It is hard to remember the child's organic disabilities when you are under sustained attack. My husband and I understand Matthew's disability probably better than anyone else in the world, and that it is not his fault in the first instance. But the reality is that he has to learn to live in this world if he is to have choices and quality in his life. By this, I mean that institutional care is the only option for anyone who fails to successfully learn the important social and personal skills of this world. For Matthew to be able to live safely in this community, he must learn when to stop baiting a person.

To other people, I'm sure we appear too strict, too rigid, and Matthew plays well to the sympathy of strangers. But time has proved us right. Whenever he goes somewhere else for the first time, and boundaries are relaxed, he is in heaven, and initially delightful to have around. But something always happens, he does not get exactly what he wants as soon as he wants it, and the same people who call us "mean" suddenly experience the not-so-delightful side of our son.

A typical "bad day" for us would go something like this: The morning would inevitably begin with a bed deliberately flooded with the remains of his overnight feed, and/or an incomprehensible refusal to wash and/or dress himself. These are old favourites, time-honoured stalwarts of his for gaining attention. More often than not, there would be no apparent reason for any of this. But once his small foot is set on this path, the die would be cast, and the day would go irrevocably downhill from there.

Me: "If you don't get dressed, you will miss the school bus and you will have to do lessons at home today." He ignores me. Five minutes later, he is still cavorting, naked, in his room. It is now six forty-five, and too late to make the bus in time. My heart sinks. I will not manually dress a nine-year-old. If I do so, he will flatly refuse to do it for himself again, and we will have to start over with that particular task.

Me: "Get dressed, NOW ... or stand in the corner!"

Matthew: "No, no, no!" His voice rises with each syllable. He flails his bare limbs around in a parody of a two-year-old's tantrum. It is a cold winter morning, still barely light outside, and I cannot comprehend what would motivate him to remain naked for any length of time.

Me: "Matthew. Go. To. The. Corner. Now." He flings himself, screaming, into the designated spot, cracking his head against the wall in his temper. Balance and co-ordination are still a little behind. I hold my breath as the yells increase in intensity. Did he really hurt himself this time? There is no blood and he does not show any sign of passing out, or even shutting up, so I leave, quietly closing the door behind me. Bad mother, bad mother.

The closing of the door, the added barrier to obtaining the attention he wants, produces a further increase in volume. I counter by putting a "Pink" CD on the stereo system at full blast, to drown him out, thanking fortune and our past decisions for the distance of our neighbours.

Matthew gives Pink a close contest for half an hour, then falls silent. In any other child, this might be a sign of weariness and an impending willingness to comply. With Matthew, I know better. He is simply regrouping.

I open the door to find him fully dressed in his school uniform, eyes mutinous, and with a clear challenge spread across his crooked, stubborn face.

Me: "You know you've missed the bus. There is no school for you today. We will do work at home ...." His countenance darkens, and I add "I don't like that idea any more than you do, but you made the choice for both of us."

Matthew: (mutters something indistinct which could well be "I hate you".)

Me: "Who chose to be naughty this morning?" No answer. "You missed the bus because you wouldn't get dressed, so whose fault is it?" I fall into the trap of trying to reason with him. He translates this as attention.

Matthew: "YOU!" He stabs a finger in my direction. Ignoring both the accusation and the poor grammar, I take a deep breath and force myself not to argue with him.

Me: "Get your book out and we'll start." He stays frozen to the spot, glaring hatefully at me. "Matt, get your reading book out or go back to the corner." I leave again, with the desperate hope that the less audience he has, the more likely it is that he will make a sensible choice.

Ten minutes later, steady, rhythmic thumps on the wall alert me to the fact that the child is definitely not seated quietly at his desk, reading. I go in and confiscate the ball. The book gets thrown instead, and he is directed back to the corner. He goes, but not quietly.

I put on a load of washing and make a phone call, taking the cordless phone outside, away from the sounds of protest. The day is shot to pieces, of course. I explain to the school what has happened to prevent Matthew's attendance that day – it is not a new scenario, they are not surprised.

Upon my re-entry to his bedroom, Matthew throws himself down into the corner, squealing "help, help" and cowering theatrically, with his arms shielding the grin on his face. I should emphasise that this child has only ever been smacked the once, when he was three. I am torn between frustration and amusement at the melodramatic pose. I decide to ignore it.

Me: "Are you ready to do some work now? Have you made a good choice yet?" He nods slowly, and drags himself to his desk, shoulders slumped and head hung, as if en route to the gallows. I leave him to it.

Fifteen minutes later, I stick my head in.

Me: "Did you finish reading that chapter?"

Matthew: (in his baby voice) "Yes, Mummy." I eye him, suspiciously.

Me: "Okay. So tell me what happens in the story -". As I prompt him to tell me something, one thing, anything about the book, it becomes obvious that he has not read a word of it. I sigh, more concerned about his readiness to lie than his laziness or defiance.

Me: "Can you tell me the truth?"

Matthew: "I read all the book."

Me: "That's not true, Matt. You can't even tell me who is in the first chapter.... What is a 'lie'?" When he stares at me, mutely, I answer myself: "A lie is something which is not true, something which did not happen."

Matthew: "I read it. I read it. I read it." As if repetition would make it fact.

We travel in circles for a while, until I give up, and give him another chance, warning that he will lose playtime if he does no work at all.

For the rest of the morning, it is like pulling teeth. His resentment of me is palpable – it is my fault in his mind. I offer him chance after chance, incentives, encouragement, praise of his reading ability, but nothing will convince him to make any effort whatsoever to move beyond the impasse he has created for himself. The temptation to just close the door on him and ignore him is overwhelming.

By lunchtime, Trevor has taken Tim out, mainly to escape the noise, I suspect, and even the dogs have fled the house. My limited patience is exhausted, and I resort to threats.

Me: "I'm going to tell Miss Meg about your behaviour today!" His face changes, as I mention one of the few people in his world who engenders ongoing respect in him. How I wish she had time to do some respite care, but being Deputy Principal and having a family of her own seems to keep her fully occupied. Anyway, the threat works briefly, and he limps through a page of a book which had greatly interested him up until that particular day.

In the space of half an hour, as we painfully discuss Mowgli and how he came to live with the wolf family, Matthew breaks his pencils, drools on the pages, flicks paper all over the room, and breaks wind repeatedly every time I enter the room, giggling hysterically each time. I make a concerted effort to ignore this.

By three o'clock, I have had enough. In six hours, he has read one and a half pages, answered two questions correctly, and his room smells like a public toilet. I tell him to put it away and just play in his room.

At this point, I am overwhelmed by a sense of failure, similar to that which I experienced when trying to home-school him. I am simultaneously gripped with panic because he is losing chunks of learning time like this. He is already disadvantaged by disability, he cannot afford to get even further behind.

I am angry with him, with myself for not being more effective, with the rest of the world for not helping, for leaving me alone with all the problems. I want to spend the evening pretending that he is not in the house, to lower my stress levels, however he is not going to let that happen.

Matthew: "Ma-ma ... ma-ma ... ma-ma.... I sorry -". It is seven o'clock in the evening of a long day. The bleating from his bedroom doorway continues, like a tap dripping, unrelentingly. I tell myself to be a good mother and accept the apology, belated as it is.

Me: "Okay, Matt. Will you get up tomorrow and have a good day?"

Matthew: "Yes, Mum ..." without pause, he rushes on: "Play 'puter now?" and the reason for the apology becomes crystal clear. Computer games are a restricted treat in this house, due to the over-stimulating effects they always have on him. His inability to take responsibility or understand the consequences of his behaviour is quite breathtaking.

Me: (forcing calm into my voice) "Do you really think you've earned the computer today?"

Matthew: (without hesitation) "Yes."

Perhaps a softer, kinder mother would opt for maintaining the peace here, but I have learned that if I give in on one issue like this, treats become rights and demands, and all boundaries have to be re-established from scratch.

Me: "Well, you haven't." I turn on heel and close the door yet again on the rising wail of protest.

I stress that this is only an average bad day, not a really bad day. His stubbornness can be sustained for hours and days on end. I think our record tantrum-defiance episode lasted for five days straight. On this particular day, he has not actually hurt himself, physically attacked me or even broken anything important. By the time he goes to bed, he is smiling and co-operative again.

I live in hope of a better day tomorrow ... and a little maturity.

Chapter 22: Growing Up

At the conclusion of his first full year back at school, Matthew won the Principal's Award for academic achievement. This award meant far more to us than it did to him, of course, given his inability to understand positive or negative consequences. But he certainly enjoyed the attention he received.

That year he turned nine was yet another filled with highs and lows. As always, there was nothing smooth or predictable about his growth and development. As ever, there was no such thing as a moment of pure, uncomplicated pleasure in his achievements, as each one was always accompanied by dramas and problems, some created by Matthew, many created by the world around Matthew.

It started with the long-awaited surgery on his mouth: sulcoplasty, to release the top lip from his gum. Again, we trekked to Brisbane and stayed at our usual home-away-from-home there, although our friends, the managers of the complex, had moved on. Again, Matthew sailed through the surgery, had an early discharge, and recovered well, although not happily. He resisted my efforts to occupy him with schoolwork, given that he was missing two weeks of term, and was even discontented with more recreational pursuits within the confines of our flat, which this time contained extra guests, in the form of bed bugs! It was the last time we would stay there.

My forty-ninth birthday down there inspired Matthew to surpass himself in terms of horrible behaviour. He was miserable, with his sore mouth, and the injustice of me having a special day tipped him over the edge. He screamed and banged the walls for hours, disturbing the neighbours and making it a birthday I would never forget by directing true physical aggression towards me for the first time. Unfortunately, my mother was an appalled witness to this behaviour, having travelled from interstate to spend the day with me. The three of us spent a miserable day in the flat, as we were unable to take Matthew out in public while his behaviour was so out of control.

The year had been marked early by an important transition into maturity: he began to catch the school bus to the next town. This was a huge leap, and a great risk for us to take, but we balanced it with his need to be at the Special School at that time. There have been problems associated with this routine, not least that the travelling adds up to around three hours per day, which is a lot for any child his age. But on the whole, it has worked, giving him greater independence and access to an appropriate school placement. Certainly it has been preferable to home-schooling, from both of our perspectives!

During that year, we were able to relax while he was at school, knowing the staff there would keep him safe, and had a better handle on his complexities than most. There were some issues, including the occasional teacher who initially saw him as cute and in need of babying, and us as too strict with him. But communication was usually excellent, and with the support of both Principal and Deputy Principal, these issues were sorted out quickly. There evolved an atmosphere of trust and tolerance between us all, unlike that surrounding our relationship with Matthew's previous school.

This supportive relationship became particularly clear in the latter half of the year, when my health deteriorated. Matthew, being the compulsive opportunist that he was, seized the chance to exploit my weakened state. He reverted to behaviours we thought he had grown out of, such as refusing to dress himself, continual baiting, screaming tantrums which resounded through the house day after day, until I thought only hospitalisation or death would release me from it.

Although my problems were primarily physical, Matthew ensured that my mental state was on a knife-edge too. After being told, erroneously, that I had cancer, and waiting on innumerable public hospital waiting lists for tests and procedures, housebound and miserable for months, I began to make plans for my demise, which seemed so imminent.

The school was sensitive to the deterioration in Matthew's behaviour at home, and actually offered some practical help with it. They put into place a behaviour management programme for him, which included home behaviour and routine, and streamlined expectations and consequences. This made it clearer for him, and relieved some of my burden – I will be forever grateful to them for this rare act of support at a difficult time. Trevor and I can count, on the fingers of one hand, the total number of times a publicly funded body has offered support before being begged for it.

People with mental illnesses do get physically sick also – a fact which the health professions do not cope well with. My symptoms were mostly attributed to psychological factors until they became extreme. I lost twenty kilograms in the space of a few months, I had to give up work, and barely functioned at all most days, as I could not eat anything.

Finally, multiple problems were found – all resulting from my years of compliance with psychotropic medication for my bipolar. Nearly every part of my digestive system particularly, had been damaged, and I was left with multiple food intolerances. Infinitely better than dealing with cancer, I was still put in an impossible situation by members of the medical profession: clearly, I had to stop taking lithium and the other medications I had used long-term, or I would not be alive to finish raising Matthew. In other people, this would be considered a logical and reasonable decision, but not for a "mental patient" apparently.

I was pressured by various doctors to continue taking lithium et al, despite the consequences. I was even threatened, and refused treatment by some. With my resignation from all the health committees I had been on, I was seen as a "political problem", and have been unable to access treatment or support for myself anywhere in Queensland since that time.

Thoroughly disillusioned with psychiatry, I turned to natural medicine and lifestyle changes to manage my bipolar, without medication. I was aware it was a risky path, and due to local attitudes, I did not even have a safety net anymore. However, short of pulling up stakes and moving to another State, I had been left without choices, so the only thing I could do was to manage each day as positively as I could, minimise the stressors, and try not dwell on what might happen.

In terms of stressors, Matthew, and the issues surrounding him, topped the list. With the school's efforts to support us, and my health improving towards the end of the year, several positives did emerge, however. With my weight loss, my energy levels improved, and I eventually felt better than I had in years. Not having to travel constantly for work meant a more consistent routine for all of us, including Matthew, and I had time to return to my music, which had benefits for everyone.

By the end of the year, Matthew had achieved much more than just academic accolades. His progress in swimming, soccer, dance and music was a pleasure to see. We enjoyed his first dance recital, and our predictions of his natural stage presence proved quite accurate – he loved it. I found myself with tears in my eyes again as I watched this child, this "hopeless case" who would never walk or talk, lead a class of normal children through two dance routines, confidently, even making mistakes with tremendous flair. He was a hit.

Socially, there were signs that he was making an effort at least, in his desire to be liked by his peers. He seemed more alert to other people's reactions to his behaviour, as if he really cared what they thought of him for the first time. The school was monitoring his social behaviour, and teaching the skills of friendship, which come so naturally to other children. We began to hope that he would be able to form positive relationships within his own age group as he grew up.

Trevor had health issues of his own that year, as he awaited surgery on a hernia that had restricted him for almost two years. We were both feeling our age terribly, and made a conscious decision to force Matthew into taking more responsibility for himself. At nearly fifty, and nearing sixty respectively, we were frightened that we could become unable to care for him at any time, and he would drown back in an insensitive system, unable to protect or care for himself.

Matthew learned to make up his lunch each day, mixing Sustagen, measuring water into his bottle, and selecting yoghurt or custard to take to school. He was made regularly responsible for plugging in the tube and starting the feed pump each night, then finishing it off in the morning. This had the subtle side-effect of reducing the amount of pump/tube interference he indulged in, as his sense of responsibility for it increased.

We focused on that sense of responsibility, and enforced a routine for cleaning and tidying his room, including vacuuming, plus looking after his own clothes. His growth delighted him, as with all kids at that age, and we were allowing him more choice in what he wore.

Despite the rough patches during that year, I was aware of the positive pearls – those moments when I noticed Matthew's limbs lengthening and strengthening, as he danced and jumped on the trampoline; the relaxed evenings when he bubbled excitedly about something at school, and we felt just like an ordinary family, laughing with him.

Matthew's growth was slow, but within normal limits. The main concern during his annual appointment at the specialist plastics clinic in Brisbane was the state of his mouth and teeth. Nobody seemed to quite know what should happen next. The plate had been a disaster, surgery was not an option at that time. His second teeth were coming down reasonably on time, although not necessarily in the right places. He had teeth missing altogether, too many of some and back teeth which peeped through his gums, then decided not to venture any further. Braces had been mooted since he was seven, but there was simply not enough to attach them to.

So the child was referred to another orthodontist, following the medical maxim: "when in doubt, refer 'em on". It was to be six months before his mouth was examined again, thanks to the system of public health in Queensland. I had taken out private health cover, in a desperate bid to prevent any more terrible waits for treatment for any of us, but Matthew's needs were so specialised, it did not seem to help him much.

The good news was that there was not yet any need to top up the mandibular with another distraction, as often happened to kids with micrognathia with every few years of normal growth. His facial growth was fairly even so far. We had long since lost objectivity about his face. Although I knew logically that his facial features did not match those of other children, I could not actually see the differences anymore. To us, his face was beautiful, particularly compared with what he had been born with. The slight crookedness to his chin gave him a beguiling look, and the asymmetry in his face added character. His irrepressible charm still dazzled through huge blue eyes, emphasised by those characteristic folds of FASD, which were now simply part of Matthew.

His face did, however, show the constant pallor of someone taking regular anti-psychotic medication. Two years down the track, after reluctantly agreeing to the Risperdal, I became determined to wean him off it. I could not see that it was doing anything for him at that point – there had been no recent episodes of self-harm, he was sleeping well, and there were general improvements in his self-control in most areas.

I obtained the okay from his pediatrician, and warily started to reduce the dose. Stopping any long-term medication can be difficult and even dangerous, and in my experience, this goes double for anti-psychotics. Withdrawal symptoms can be horrible, frightening and extended. We took it very slowly, over a period of three months, and in increments of a quarter of a milligram every two or three weeks, watching him minutely. He had no problems whatsoever, either during the withdrawal period or subsequently.

We heaved sighs of relief, but decided to leave the Concerta (slow-release Ritalin) in place, as it clearly affected his ability to focus and concentrate.

Chapter 23: Parenting Soapbox

There is no such thing as the "perfect parent," in my opinion. I have never encountered such a creature amongst biological, adoptive or foster parents. Certainly, I am not even close. My definition of a good parent would be one who does the best they can, with the resources they have, on any given day, and who has the resilience to pick themselves up and try again when they see themselves falling short of their own expectations.

In my experience, foster-parents vary as much as biological parents, in both methods and standards of parenting. One of the fundamental flaws of most child protection systems is that they allocate stereotypical roles to the people involved in a child's situation: that is, the biological parent is somehow "bad," and the foster-parent is "good" or "expert." This does not reflect reality, nor does it engender positive attitudes anywhere. Paradoxically, the system also tends to treat its foster-parents as servants and underlings, to be kept in their place at all costs.

The effects of such a judgmental and polarised system are damaging to all concerned. The dichotomies created within these roles are negative and imply constant criticism, as well as unrealistic expectations: "good/bad;" "natural/foster (read 'unnatural');" "authority/servant;" "power/obedience." It is almost impossible to form a positive working relationship with "natural" parents who are shamed and angry, or with departmental staff who are directed to maintain authority over you, rather than a partnership. Trust does not exist in any of these relationships because of the way in which they have been formed.

This is tragedy for many children in care. Far from working towards the goal of treating the child's best interests as paramount, as stated in both policy and legislation, child protection systems are constantly in reactive, crisis mode, under-resourced certainly, but also pointed in the wrong direction. Their bottom line is money, with power and image coming in as close seconds. Resources are hoarded jealously for absolute emergencies, instead of being used in prevention and support for families generally. Priorities are publicly proclaimed, yet privately skewed.

Nearly every child we have fostered has come from a situation which might have been prevented had there been non-judgmental support offered by someone early in its history. The simple fact is that every child in care would prefer to be with their own parents, regardless of the abuse, neglect or crisis landing them in care. Every child wants a stable, loving environment, but the vast majority want that with their own families, not strangers. Foster-carers are behind the eight ball every time.

There is so much needless damage and suffering involved in a system that operates primarily to sustain and nurture itself rather than the community. Any child which has bounced around half a dozen placements by the age of ten has not had its needs met by anyone, is probably irreparably damaged, and therefore an ongoing liability to the community as a whole.

We frequently see and hear of second and third generations of children in care. What exactly does that say about our system? That it is effective? I think not. Why is the entire community not agitating for a basic shift in departmental policies and processes? This is not working! And it is a community responsibility to make it work – these are our kids, our future.

A word is needed about the people employed to perpetuate the systems of child protection, welfare and disability. As found in most public service situations, there are those in it for the right reasons, and those who are there solely to collect a pay packet and advance their own careers. We have inevitably encountered a mixture of both. There is a tendency for the more caring and motivated workers to get burned out quickly – the system is almost as damaging for them as for us, with one significant difference: they have the option of getting another job, but for us, families, whole lives are at stake and we are trapped. The sad fact is that, despite all the competent, caring workers I have known over time, there has not been one willing to jeopardise their job security or colleague relationships to advocate for us in impossible situations. They are all just products of the system, whatever ideals they had when they first entered it.

Their acceptance of the system, their compliance over time, ensures that the status quo is perpetuated, unfortunately for us. By "us," I mean the children in care, and the families who are inextricably tied into the situation. Until both workers and the broader community put their collective feet down and say "Enough!" - there is no real hope of any change, as children and families are disempowered by the very fact of their involvement. Any family, biological or foster, which comes under the purview of any child protection or welfare system is stigmatised by the both the system itself and the wider community.

As a society, we are far too ready to judge parents. Few negative stigmas compete with that of "bad mother." Enlightened societies see parenting as a shared, communal activity and responsibility. Commonsense shows that we are raising the generation which will shape our own old age, so why do we sit back and blame individual parents for their inadequacies? We make it almost impossible for a parent to ask for help, as such an admission of failure is a source of shame, and there is a demonstrated risk that the parent will lose their children as a result.

What if the neighbours of a family struggling to cope with parenting in dysfunctional ways offered support instead of condemnation? To those people who simply gave me a sympathetic smile during Matthew's many public meltdowns, instead of the more common dirty looks and pointed requests for the DoCS phone number, I thank you from the bottom of my heart. You have no idea how much your smiles helped me to cope in those moments.

My belief, after seventeen years, is that parenting skills are learned, not automatically gifted to people by the acts of conception and birth. Like any other skills, some people learn more easily than others, some even require remedial support to develop the skills successfully. So what? The important thing is that we give people the opportunity and support to learn before we condemn them as parents. We need to demystify this, and see it for what it is – a learning process which is a responsibility belonging to all of us.

Parents with mental illnesses receive an especially bad rap. We are subjected to maximum critical scrutiny by authorities and the general community, and standards for us are set well beyond the ones set for other parents. Every time some unfortunate family makes the news because of a tragedy involving both children and mental illness, a wave of disapproving paranoia hits us with renewed force.

Some facts: most people who hurt/abuse children are not diagnosed as mentally-ill, and most child-abuse by non mentally-ill parents goes unreported in the media, as if it is somehow more acceptable. Parents, biological and foster, who are open about a diagnosis of mental illness, are automatically labelled as "a risk" to their children: amongst all disability groups, we, alone, are guilty until proven innocent. Such a judgmental culture hardly lends itself to people being open about their disabilities or being willing to ask for help before things go pear-shaped.

In a society where one in four people now suffer from a diagnosable mental illness at any given time, and where nearly everyone will experience at least some form of temporary mental illness at some time in their lives, it would surely be more sensible to offer realistic support to parents in this situation, and create an atmosphere of honesty and trust? Potentially, that is an awful lot of people to hound as "bad parents." The chances are that those very people who have made my life a misery will one day walk in my shoes.

Those of us with long-term and chronic or episodic illnesses, such as bipolar disorder, can actually have certain advantages over other parents, in my opinion. After many years of treatment and counselling, I have a better knowledge of my own strengths and limitations than most people, and have developed, through necessity, a better range of coping mechanisms generally. Having the responsibility of children in my home has had the effect of making me monitor and manage my symptoms meticulously, with the obvious benefits to my own health, as well as to family stability.

Without my history of mental illness, I would not have been nearly as effective as a parent and advocate for the children I have cared for. I know the health and disability systems intimately. I have a depth of information about medical treatments, psychology, medications and behaviour management strategies that few lay-people have the opportunity to accumulate. Finally, I am in the perfect position to understand children who feel confused, hurt, frightened and angry – and most of them know this instinctively.

Of course, stability and health are desirable things in parents, but really, how many people can guarantee those things absolutely over a period of eighteen years? Surely we would be far better off acknowledging that all parents have limitations and flaws, get sick, get divorced, become unemployed, suffer stress, acquire disabilities, and so on. Life never has any guarantees at all, but within a culture of acceptance and support, mental illness and other barriers to effective parenting are less likely to result in damaged children going into care.

As it was so beautifully written by Kahlil Gibran:

"Your children are not your children.

They are the sons and daughters of Life's longing for itself.

They come through you but not from you,

And though they are with you yet they belong not to you."

As long as we are jealous and possessive of our children, even competitive with other parents, we are not acting in their best interests at all. Ownership of children is a myth in any case – each child owns itself, free and clear. Parents are merely temporary caretakers, however the community in which a child lives is permanent, and its influence over a person's lifetime is far more enduring.

"You are the bows from which your children as living arrows are sent forth." I see so many children in the child protection system losing their impetus to fly as arrows, and instead being placed and moved around like tiny chess pieces, for reasons that often have little to do with their well-being.

Maybe this particular bowstring is a little warped, but at least in recognising that, I can compensate for it, which has to be better than shooting blind. My most sincere wish, after fostering for seventeen years, is that there be no need for foster care in the community, because all families are being supported according to their needs.

Chapter 24: A Year of Change

As a new Year Five student, in two thousand and ten, Matthew entered the Middle School, no longer a Junior. His new teacher, Miss Eve, was a marvellous match – she was young, full of enthusiasm, and hearing-impaired herself. For some time, we had been trying to discourage Matthew's "baby talk," seeing it as a means to gain attention by not speaking clearly or sensibly. Although Eve's lip-reading skills were amazing, Matthew had to put more effort into his speech in order to make himself understood. For once, his desire for attention won over his natural laziness and lack of motivation, and his speech improved dramatically.

After some initial communication problems, due to Miss Eve being unable to phone us, we established a regular, friendly pattern of email bulletins, which tightened the system of behaviour management and expectations around Matthew. As a direct result of this, his behaviour settled considerably during the first half of the year, as he largely gave up his attempts to manipulate adults between home and school.

There was one part of his day that remained problematic despite this – the hours he spent on the school bus. Although we had asked the private contractor to seat Matthew in the front seat for each journey, the man, perhaps justifiably, did not see this as part of his role, and it became obvious that Matthew was roaming the bus, and interacting with mostly older students from other schools in negative ways.

We had to rethink Matthew's new responsibility with his bus fare, which had seemed to be working so well, after the driver roared at me across the road one afternoon, in front of a dozen other parents, that the boy had not paid his fare in days. As Matthew was unable or unwilling to tell us where the money was going, and the only unsupervised period in his day was actual bus travel, we assumed that it was being taken by, or given to older kids.

Apart from this concern, and the bus driver's apparent unhappiness with the whole arrangement, we felt the necessity and confidence to experiment with a new arrangement for Matthew early that year. We were fortunate to find some experienced carers, willing to take him on for respite initially, while Trevor had surgery in May. This was so successful that we started an arrangement with two other homes, in two different towns, both closer to his school than we are, where he spent a couple of nights per week with each, coming home for long weekends.

It was a tremendous amount of organisation for me, but so worth it. After a few initial hiccups with the distribution of pumps, tubing, wardrobe and establishing a pattern of effective communication, Matthew was happy, loving the variety, having homes with other kids to play with, and with far less travelling to do. We were free to relax, and concentrate our energies on each other, and Tim, for a few days each week. We became good friends with the other carers, finding much in common with them. Matthew, ever attuned to cracks in adult communication, relaxed in the knowledge that we all spoke regularly, forming a tight, supportive net beneath him. It all seemed too good to be true for a couple of months. And so it was, as things turned out.

Fortunately, there were a few incidents to remind us of reality, and the risks of complacency. As a kneejerk reaction to an unfortunate accident, where Matthew's biological father appeared in our lives again, I decided to buy Matthew a cheap mobile phone to carry for emergencies. I rationalised this by the presence of an inbuilt Global Positioning Device, and the argument that the texting facility was his most appropriate form of future communication over distances, as his speech was too unclear for phone conversations. Despite intensive drilling on the rules around its use, the phone not-so-mysteriously vanished within two weeks. During questioning on the subject, Matthew's answers varied according to what he thought we wanted to hear, and we wrote it off as a learning experience (for us).

A month later, I received a phone call from the bus driver, clearly resenting the need to speak to me. A student had handed the phone in to him on the bus, he said. I did not bother asking any more questions – the scenario was fairly obvious. I doubt whether the older student had to steal the phone, all he needed to do was ask Matthew for it, and the child would have simply handed it to him. I put the phone away, with the vague hope that he might grow into the responsibility associated with it.

Matthew was consistently careless with his possessions, even those that he valued, such as his precious GameBoy, his use of which was severely restricted as with television and computer. When he left the charger for this at one of his respite homes, he could not accept either responsibility or the consequences of this, instead becoming angry and frustrated with us, simply seeing us as depriving him of something he wanted. As with everything else we have tried to teach him, a sense of responsibility seemed elusive.

As well as showing signs of academic progress at school, the year was significant for Matthew's involvement in a regular soccer team, for the first time. He had always loved soccer, but had never before had the chance to actually play in a team. The school fielded a team of kids with varying types and levels of disability against local mainstream schools, emphasising teamwork and fun, rather than winning. Matthew had to wear a protective leather helmet to prevent damage to his delicate chin and jaw through an accidental ball in the face, and looked like a small Martian on the field, his range of vision somewhat restricted.

Each Friday, he came home, babbling with excitement about the game and his teammates, and we were thrilled for him. One week he came home with his usual excitement, and, as usual, we had some difficulty understanding his bubbling speech. A timely email from his teacher came through to explain: Matthew's team had actually won the game that day – their first win, and against a team of normal kids! Not only that, but Matthew had kicked the winning goal, his very first one. It was such a joy to give him unqualified praise, as a soccer hero, and to see his pride in himself for a genuine achievement. For once, we revelled in feeling the same as ordinary parents.

Our relationship with Matthew was undergoing subtle, even positive changes. As well as the inevitable "smart mouth" he was developing, the over the top tantrums seemed to be diminishing in length and intensity. I actually had some sensible, even chatty conversations with him. He was becoming good company in some ways.

One evening, he was sitting with me in the lounge room. He was watching television – a rare treat, and I was working on my laptop, without paying too much attention to the programme. It was one of the unnecessary plethora of cooking shows, spawned from Master Chef. I verged on phobic with anything to do with the kitchen.

I was subconsciously aware it was a dessert recipe of some sort, demonstrated step by step, and Matthew was giving it the same rapt, slack-jawed attention he gave anything on the screen. As the programme finished, he turned to me and stunned me utterly with a thoughtful comment: "Well, that looked easy, didn't it?". Out of the blue, this adult-type statement from a child who never bothered with small talk, whose speech tended to be at the five-year-old level, and who did not consume regular food, simply floored me.

It occurred to me that it would be so typical of the paradoxes and contradictions in Matthew's life if he decided, without the ability to eat, taste or smell food as we do, to be a chef!

To balance the positive progress he was making, Matthew of course had to produce some new negative behaviours. There was nothing too unmanageable or age-inappropriate, but the blatant, pointless lying worried us. "Have you brushed your teeth, Matt?" "Yes, Mum" became a good example of the sort of lying he was doing. The answer was easily checked. Confronted with the evidence of a bone-dry brush, or even on one occasion, a brand-new toothbrush still sealed in its packaging, Matthew would continue to swear blind that he had brushed his teeth.

We could not see the point of most of the lies he produced. His lack of shame or contrition was a source of great concern to us, and we realised that, in the whole eight years we had known this child, we had never seen the slightest sign of shame, embarrassment or shyness in him in any situation at all. We should have thought more about this, worried more about this than we did, as subsequent events were to show.

But even with the wisdom of hindsight, I have yet to find a means to teach a child feelings, when the necessary neurological links simply do not exist.

Chapter 25: Another Pothole

Everyone loves stories with happy endings, and I was hoping to end this one on an optimistic note, at least. But Matthew, predictably unpredictable, has once again changed our plans and turned our lives inside out, upside down. This is, undoubtedly, the hardest chapter to write.

After a period of grace, during which we have dared to hope that there was evidence of real maturity appearing, there has been a serious incident at school this week. On a backdrop of increasingly "domineering play" behaviour at school, Matthew attacked another child, during a playground game. Fortunately, being a special school environment with close supervision, there was immediate intervention and minimal damage done. It was still, however, something for which he could be charged, at ten years of age. With a borderline intellectual disability only, and no legal recognition of Foetal Alcohol Spectrum Disorder in this State, this child, with a functional maturity of three to five years, could potentially be judged responsible in a court of law.

We are hopeful that this will not happen this time. But clearly prevention is better than cure, and with doctors and other professionals tiptoeing around not really knowing what to do with him, we are forced to keep him under "house arrest" indefinitely. Despite our efforts to explain to him, to tread the perilous line between accommodating his cognitive deficits and making him see the reality of his responsibility, he vacillates between sadness, anger and bewilderment.

In a further act of unfathomable cruelty upon this child who has had so little of a normal childhood, nature has bestowed precocious puberty on him. He is emotionally and cognitively stuck between the ages of three and five, with the stunted physical growth of an eight-year-old, and the hormonal tidal wave of a thirteen-year-old. While this is another hideous characteristic of FASD, it is also a rare side effect of the medication, Risperdal, which Matthew took for at least eighteen months. I will now have to live with the knowledge that our decision to put him on that drug may well have tipped the balance.

With Matthew's long history of out-of-control, impulsive behaviour, and his inability to understand social boundaries, none of us recognised that his behaviour had crossed a line from merely "inappropriate" to "sexually-inappropriate". I blame myself for taking my eye off the ball, and allowing myself to be lulled into the illusion of maturity and optimism. Subsequently, other people, other carers, have described to me incidents that, with hindsight, we can now recognise as sexualised behaviour. For example, one respite home was allowing him to demand repeated piggybacks from them, despite our warnings to emphasise age-appropriate behaviour and discourage such physical contact, until he was literally just jumping on their backs, without invitation. No one thought to tell us about this until he extended this behaviour to strangers and younger children, hurting at least one person in the process. This is an ongoing problem for parents of children who receive any sort of respite care – you cannot assume that other people will understand or respect your strategies or instructions. Sometimes that can be catastrophic, as we have discovered.

The tragedy of this is that Matthew has no concept of "sex" at all – and he has been repeatedly questioned by us and by professionals in the last week. He does not understand what he has done wrong, and probably never will. He believes he was just playing, that he did not mean to hurt anyone. Yet the reality is that, despite his deficits and disabilities, he will be held legally and morally responsible for this sort of behaviour, both now and in the future. Although it is clearly not his fault, without FASD being recognised or understood in Queensland, this child will inevitably be punished anyway, and tragically, other children may be hurt in the process, as well.

This week, as our worst nightmares became reality, I have tortured myself with questions. Was there something I could have done, more or differently? Would a better parent have been able to prevent this somehow? Where on earth do we go from here? Will he have any sort of life outside of custodial care? And, in the dead of the sleepless nights, the even darker: Did we do the right thing in fighting to keep him alive? By cheating nature, will retribution be visited on this unfortunate boy and those around him forever?

The truth is, I foresaw this years ago, and have been constantly warning people – doctors, respite carers, teachers, social workers. Matthew has always had problems with inappropriate social boundaries. Almost without exception, I have been criticised for overreaction, and for being too hard on him. Never had I hoped so much to be wrong than on this particular issue. His short and difficult childhood is now over completely.

It has been a hard week, without a doubt, although out of the many people and organisations I have approached for help and advice, I have been wonderfully surprised by a few. The school, of course, remains practical and supportive as they search for special funding to enable Matthew to return there in safety. Some service-providers have been unexpectedly supportive, instead of blaming or criticising us. There are small comforts evident. As we face Matthew's premature entry into the forensic mental health system, we do have people on his side, thankfully.

Matthew is currently having every aspect of his day-to-day life monitored and controlled, which is an exhausting and mind-numbing experience for all of us. While grieving for him, and reminding ourselves that he is emphatically not responsible, we must supervise his every move, without making it seem like pure punishment. One step forward, two steps back.

We have relieved him of his new responsibilities for feeding and caring for himself, so that he can concentrate on the fundamentals of controlling his behaviour, all aspects of it. Along with that loss of responsibility comes a loss of privileges, such as movies, computer games and going out treats, by necessity. Instead, we are saturating his day with talks and activities focused on self-control issues and social skills.

We are all in limbo indefinitely, as we wait for slow responses from systems and individuals who are simply not set up to cope with children like Matthew. All of his activities outside of the house have been suspended, as we struggle to regroup and support Matthew to master his own behaviour. But at least the despair of a few days ago has given way to new optimism, as we once again think of new strategies, both short term and long term, to manage this new disaster.

Once again, Matthew is a hot potato. Services and individual doctors are passing him around so rapidly that we have the sense of travelling in circles. He does not fit anywhere in any existing system, there is no precedent for a child with his complexities. I have the creeping sensation that I am actually a disadvantage to him at this point, with doctors avoiding me and fobbing me off as an overreactive, mad mother. I am sitting next to the phone, endlessly waiting for someone to give a clear response, for someone to help him.

As I lie awake at night these days, an exhausted brain turning the problems and anxieties over and over, a vision is beginning to emerge. This fantasy is so far removed from reality, particularly in Queensland, that it is ludicrous. But I will share it nevertheless, just in case it plants a seed of hope or resolve in someone else.

I see in my mind a community, holistic and inclusive, separate to, but linked with the broader community. Above all, this is a safe place, for people with FASD and their families. There is every conceivable support in place for victims, from birth through adulthood, outreach and residential. There are specialists to diagnose and advise parents with young children, educators researching and creating effective methods of teaching and socialising older children, adolescent programmes designed specifically for FASD kids and their issues, not just recycled strategies from experts in developmental and autistic disorders, and finally, there is a range of residential facilities, tailored for the differing supervision needs of adults with FASD.

Throughout this community, there is a culture of support, not blame, and there is recognition of the paradoxical needs for both independence and safety throughout the entire lifetime of a person with FASD. Parents and carers pool their knowledge, informing the researchers and medical professionals, as the experts they are. I imagine a glorious conglomeration of the best aspects of the various places I have worked or known in my lifetime: Steiner, Montessori, Boystown, the psycho-social methods of Clubhouse, and the wealth of Canadian strategies we can learn from.

To convince any government that something like this would actually be cost-effective in the long-term, given the expense of maintaining recidivist offenders in jails, mental hospitals and a community that does not understand or welcome FASD, seems impossible right now. But that could change overnight with community support and an acknowledgement of need from the medical profession. So, who will accept the challenge and build on this idea?

In the meantime, in the dearth of strategies available for this situation, I have decided that a creative project for Matthew, during this time of forced isolation, will offset his resentment at being "punished," and provide a positive outcome from all of this, as well as simply occupying him over the next days and weeks. He is going to build a drum, not just any drum, but a big, special drum, which will be important to him on many different levels, I hope.

Every generation of adolescents, in every culture, has some sort of "rite of passage," some ritual to mark that unique period of growth. Matthew, at ten, cannot participate in the accepted adolescent traditions, based in social and independent activities, so we must create something special just for him – he is as entitled to see his puberty as a positive thing, as much as any other adolescent.

Designing and building a "growing up" drum, then decorating it with his own unique expression of self, will give him ownership and pride. That is my theory, at least. A drum is a wonderful, symbolic object, with connotations of depth, heart, soul, and other positive meanings. I am hoping it will both contain and express the positive meanings in Matthew's recent growth.

It is something we will do together. To produce something meaningful from the ashes of this disaster will hopefully reinforce our relationship, and allow some trust to re-enter it. I have to believe that we will get him through this, that this, too, shall pass.

Chapter 26: To Cope or Not to Cope

Time has proved that Matthew does learn, although not in the same way as other children. As he cannot grasp intangible concepts, such as "truth," "love," "kindness," he learns such things by rote and repetition, without ever really understanding why they are necessary. For this reason, his compliance with rules will always fluctuate, and can never be assumed.

As well as the constant repetition of important instructions, which equates to endless nagging, we make lists with him, and his bedroom walls are papered with posters of things like "Stop – Think – Act", as cues. When his behaviour is incorrigible, and totally non-compliant, we make him sit down and write lines, as a last resort. This is an archaic practice, of course, but it does work to some extent. Plus it has some spin-off benefits: his pencil grip has improved immeasurably, and it is something he is quite happy to do usually, boring as it is, because he knows he can do it well. This then gives us a chance to praise him for a positive action.

Focusing him is a problem, so we always say his name before giving an instruction, and also ensure full eye contact. His concentration span is short, so we make instructions as brief and concise as possible, particularly when given verbally. He can only process one instruction at a time, for example telling him to wash his face and brush his teeth in one sentence is often counterproductive. He will do one or the other perhaps, but more likely he will not retain either, and end up playing with a toy car instead.

Without insight or understanding of many concepts, we have found that everything must be presented to Matthew in black and white. Rules have no exceptions, and consistency is vital. We have learned never to bluff, or make threats that we subsequently fail to carry out. "No television" means no television at all, "tidy your room" means every tiny part of it must be tidied, not one thing left out of place. Let one thing go, and we have to start over with that particular task or skill. Although his memory and information- retention for most things is poor, he never forgets when we slip up, and any mistake or leeway on one issue immediately gives him permission to disregard all rules and instructions.

We have never before been so rigid in our strategies for raising a child, and it is not easy. But things must be absolutely clear for his chance to understand and comply – we are not doing it for our benefit, but for his. It is often downright inconvenient, in fact, not to be flexible.

These strategies form the basis of our coping with Matthew's behaviour. Over time, we have developed many creative solutions for individual problems as they arise, but the pattern is that most things may work with him for a while, until he gets bored or loses focus, then there is a need to introduce something new. We have become creative, lateral thinkers through this experience! These children do not fit neatly into boxes, and the professionals can offer very little in the way of standard behaviour management, so trial and error, constantly evolving creativity, and acute sensitivities to his responses, are the only means we have.

Simultaneously, we are keenly aware that these kids are prone to developing huge self-esteem problems, and no wonder. By Matthew's age, they have attracted so many negative labels that they tend to give up even trying to meet expectations. They fail so often, everything is so much harder for them to learn, and nothing is ever good enough, from their point of view. So we have to make a conscious effort to give him something positive each day. That is oh-so-hard at times! I find myself using things like "Matt, you have put your socks on really well today" in desperation.

This is a very stressful way of doing things, on top of incredibly demanding behaviour generally. We have found that we must look after ourselves meticulously, in order to avoid burning out or getting sick ourselves. We spell each other regularly, even though we rarely get breaks together, to make sure that we each have a chance to spend even just a few hours away from Matthew every few days.

Basic things like sleep and diet are also important, and easy to neglect, particularly when there are crises. We constantly remind each other that no one is going to look after us if we get sick, and if that happens, there is also no one to look after either of the boys. This is a sad fact of life for us, and I suspect, for many other carers of high needs children and adults, especially if they live in a rural or remote area.

Relationships can be rapid casualties of FASD too. In addition to being around a child who manipulates, splits and does everything possible to create conflict, the demands of the caring situation do not allow for much quality time together, or even space to resolve difficulties. Trevor and I find our relationship stretched at times, and our marriage often seems like merely an arrangement for the convenience, and caring duties associated with our sons. There are no easy answers here, and it is something we have to negotiate and work at, on an ongoing basis. Fortunately, we are mostly good friends and teammates, even when actual romance seems like a distant memory.

One of my worst dreads is that we both get really ill simultaneously. This has only happened once that I can recall. Matthew brought home a stomach virus from school, and we all came down with it, violently, in the space of a day. Between bouts of my own, I was mopping, emptying buckets and running between bedrooms. Finally, I saw that two of them were becoming hopelessly dehydrated, so I called the ambulance.

Luckily, the paramedics and hospital staff on duty that night were sympathetic to our plight – this is not always the case – and kept Trevor and Tim in for twenty-four hours on intravenous fluids, and I only had Matthew and myself to care for. On a side-note, one of the truly wonderful perks of a child who has had the Nissen fundoplication surgery and gastronomy, is that he does not vomit!

The Nissen Fundoplication surgery is performed on children and adults with persistent reflux, from various conditions. The surgery involves almost sealing the top of the stomach where it meets the oesophagus, allowing small amounts of food and fluids down, but not back up again. Matthew had this done as a baby, at the same time as his gastronomy stoma was created.

It is often impossible to prioritise less urgent health issues. At the time of writing, I am months overdue for dental work, new glasses and blood tests. Trevor needs a hearing aid, and has done for a long time. As we lurch from crisis to crisis with Matthew, and to a lesser extent, Tim, these things tend to get pushed further and further down the list of priorities. Each appointment and task requires major planning, in terms of timing, transport, money and childcare, especially at the moment, with Matthew confined to barracks.

Formal respite care is scarce at best, and often less than ideal for our boys. Due to the complexity of their needs, it has proven close to impossible to find facilities which are willing to take both of them together, and which inspire confidence in us. Respite for Matthew is always a double-edged sword: we spend the three days dreading his return, as no one ever completely believes us about the boundaries necessary for him and he is allowed to run riot to some extent, wherever he goes. When he comes home, we invariably spend a couple of weeks starting from scratch with everything: every task, every rule, every aspect of self control must be relearned and re-established.

Music has proved to be a wonderful source of respite for all of us. I use it not only to drown out tantrums, but also to adjust the mood in the house. Vigorous rock or jazz music gives all of us a lift, and I have a variety of classical music to soothe and de-stress. Matthew responds well to music, and I have done a lot of individual music therapy with him, in an effort to teach him to use it for his own relaxation, and as an outlet for his ongoing anxiety and frustration.

Trevor and I both use music on a personal level. He is a late-bloomer, but very talented on guitar, and strums away intermittently through each day. As a former professional musician and music therapist, music has always been central to my life and well-being. A miracle of chance led me to an innovative and brilliant violinist in America last year, Mark Wood, who has created a violin which straps to the body instead of being held by the chin. This amazing Viper Violin has allowed me to play again, after twenty years of deprivation due to a damaged neck.

I try to make sure I spend at least a short time each day playing for myself. I owe my soulmate, Johann Sebastian, a huge debt of gratitude – the crisp, graceful symmetry of Bach's music has proved to be the perfect antidote for the chaos and stress of FASD, and my life overall. Half an hour of playing Bach of any description calms my mind, and allows logic to re-surface in times of crisis. It is the closest thing to a mood-stabiliser I have these days, and serves to head off my natural tendency to catastrophise events I cannot control.

FASD, being what it is, means that our lives easily become totally centred on Matthew's needs and demands. Attention seeking is like a religious vocation for him, and there have been many times when I have felt myself literally dissolving into his puppet or slave, or even his parasitic host. It is a terrible analogy, but accurate. It happens gradually and insidiously, because it is much easier to slide into passive compliance with him, than to actively resist, and cope with the resulting conflict when he does not get exactly what he wants. For his sake, to break such an unhealthy habit, as well as for my own sake, I must sometimes just close the door on him for half an hour, literally and figuratively.

On a daily basis, I make sure there is some space of my own. This is necessity, not self-indulgence. As well as music, we build in other things, such as walking the dogs, Tai Chi, gardening, visiting the one neighbour who is supportive of us. Humour is a vital weapon in our arsenal, and we maintain a collection of DVD comedies, specifically for this reason. Sometimes, when things have been particularly difficult, I force all of us into the car, and we just drive somewhere for a change of scenery – anything to break the negative cycle.

I am sure the black sense of humour Trevor and I share is sometimes incomprehensible to outsiders. We joke to each other about the ignorance surrounding us, about being lepers in this society, and about our kids' latent abilities. This is very much a coping mechanism: if you do not laugh sometimes, you cry instead.

"What did your last slave die of?" is a frequent question we ask our children, usually with a smile.

"One day soon you'll be pushing my wheelchair, boy!" is another favourite of mine, especially on days of great weariness.

As I often look around at my uncleaned house, my yard overgrown with weeds, the list of phone calls unmade, and so on, and I have to "self-talk" away the guilt. Talking to other people, particularly if they share similar experiences is invaluable, but we often find ourselves alone with the problems and the stress. We have learned to be kinder to ourselves – we are not perfect, but we do the best we can with what we have.

Being predisposed to mental ill-health, I am hypersensitive to these needs for respite and personal time to de-stress, and I see this as a positive thing. The stakes are great for me, but certainly exist for everyone else as well. I find that I must retain some sense of self, of separation from Matthew, in order to survive. That used to be part time work for me, or study, which combined travelling away from home regularly and being with people on a different level. Unable now to work, I have created opportunities in my routine for personal projects: I play little concerts at aged care facilities, I read for a newsletter for local vision-impaired people, and I am starting a music programme at a local school. These things also serve to give me the perspective and energy to deal with Matthew's needs and behaviour.

Life gets hectic at times, but for me, personally, this is preferable to the alternative of getting housebound and bogged down in Matthew's crises. Too often, as carers, we wait until we get to the end of our ropes, burn out, become ill, and the whole house of cards collapses completely. This is devastating to everyone concerned. Again, it is an issue where prevention is infinitely better than cure.

Different strategies suit different people, and we all have varying limits, obviously, but all carers of these children, and of any person with high needs, should consciously build such personal coping strategies and self-care into every single day, as integral to their routine. This is commonsense – insurance to enable us to continue the job we do. It is a need, not an indulgence; it is even a matter of life and death.

Looking at it another way, having the ability to control your personal stress is a valuable life skill, which everyone should learn. Being a carer on this level can actually give us an advantage over other mortals. And if we have learned anything over the past seventeen years of caring, it is that if you wait for someone else to step in and help you, you may well wait forever.

Chapter 27: The Glass Half-Full

Sometimes I like to imagine Matthew as he might have been, without the accident before his birth. I do not allow myself to do this too often, because it really serves no purpose for us. I am, above all else, a realist, and I must deal with what is, on a daily basis. But it might help someone else to imagine these contrasts, before this happens to another child.

In my mind's eye, I see him ... of medium height, with a quick, wiry build, perfectly made for his beloved soccer. His enormous blue eyes, fringed with those dark lashes, are exactly the same, shining with mischief, but also wisdom. They are framed with the heart-shaped features passed on to him by his birth mother, Jess. The lines of his face glow with a beautiful symmetry, and his smile is lined with white, even teeth. Unblemished by scar tissue, his skin is firm, and brushed with a healthy tan.

His strong, young limbs carry him joyfully through every sport his heart desires, without the need for special helmets to protect his face. He is an exuberant all-rounder, good at many things, I think. He does not much like Maths, but passes it barely ... he is perhaps a poet or writer, having such natural facility with words, as well as an intelligent insight beyond his years.

With well-developed social skills, and status as a budding dancer and musician, he is one of the most popular kids in his class. His outgoing, bubbly personality charms and buoys everyone around him – he is a leader, and likes to help other people.

At home, he is not a perfect son, but a loving one. He is spirited and cheeky, but not rude; he is careless at times, but never cruel. He tries to do the right thing most of the time, and we are proud of him. He has developed a personal integrity at a young age, and we trust him to be the best person he can be.

This is what might have been.

I have never given birth to my own child, so I do not pretend to have that frame of reference. However, I cannot imagine feeling any more love and commitment for a child with my own blood as I do for both of my sons. No matter what Matthew is or does, or how much I might hate some of his behaviour and want to repudiate it, he is, irrevocably, my son.

His complete social vulnerability, which has been clear to us from the beginning, will not pass with age, and he will need support always. I now know that I cannot mend him completely, so I must fix the world in which he has to live, because I will not always be here to protect him from it, or from himself.

I am no self-sacrificing Pollyanna. There are days when I want to scream for release from this. There are days when I actually resent both my children for their impact on my life. But the harder the challenges, the more determined I am to beat them. Stubbornness has its own rewards. How could I abandon him in any case? I have certainly considered it more than once, but what sort of person would I become through such an act?

Through these amazing survivors – every one of the fourteen children I have been privileged to parent, I have discovered things in myself I did not know existed. Matthew, my nemesis, has taught me particularly well. As well as finding out how far I can push my limits, and just how many flaws I have as a mother, I have plumbed depths of strength, resilience and humour no one ever suspected I had. As a long term mental patient, I have been viewed as weak and neurotic for most of my life, and used to believe that was true. Now I know differently, and I am proud of myself as a person, although I am far from a perfect mother. I feel like I can face almost anything now, and not crack.

I am extremely fortunate to have many personal gifts, despite my disabilities. Gifts are only valuable when they are given, so these children have enabled me to aspire to reach my own potential as a human being.

There are Matthew moments I treasure, little nuggets of joy, pulling them out of my memory to wallow in when nothing seems to be going right. I examine them, turning them around in the palm of my hand to make sure of their substance, before polishing them gently and putting them away for the next time I need them.

One such moment was several weeks ago, before the incident which saw him removed from school. I picked him up early from school, and we walked the concrete path for two blocks down to the clinic where he was to see the new orthodontist. Suddenly, he squealed and pounced on something lying on the path in front of us. Babbling excitedly, with his eyes shining as he cupped the treasure, he lifted it up towards me.

"Fo'you, Mum!" he lisped, breathlessly.

It was a purple flower, slightly squashed.

"Thank you, darling," I merely replied, not betraying my thrill.

This was a rare moment of pure generosity and spontaneous affection, which few other people would recognise and value as I did. There was no artifice, no ulterior motive, no manipulation involved, just Matthew's joy in giving me some pleasure, because he knows my favourite colour is purple. This is the closest to "love" that he is capable of feeling.

I tucked the flower carefully into a tiny chain link in my necklace, and together, we kept walking.

***

To protect the privacy of individuals involved, especially children, the names, places and certain events have been changed, and a pen name used.
