She turned and walked back to her car, then drove home through the rain.

She'd said goodbye ... on the afternoon that would change her life forever. And his.

She parked outside her rented terrace house and hurried inside. It was small and pokey, the passageways were narrow, not at all suitable for their needs, but it was all she could afford. A steep internal staircase too … really quite impossible for their situation. She glanced around at her few possessions, and grimaced at the way everything was mismatched. Of course it was – it was all from second-hand shops or donated bits and pieces. Yet the place was conveniently located – if one didn’t mind the incessant noise of traffic.

Sheryl sighed. Could she go through with her plan? She was trapped – and so was he. There was no answer … unless she committed an unthinkable act of betrayal. Which would hurt more, going ahead with her crazy idea, or continuing as they were? No, there was no easy answer.

The house was quiet inside. Too quiet. She turned on the radio, and turned it up loud, very loud. That would block out the traffic noise. Perhaps it would block out the noise in her head, help her forget her pain.

She went to the kitchen, intending to make a cup of tea to steady herself. Changing her mind, she reached under the bench for the bottle. One can’t really hide things from oneself. She always knew where she’d hidden it. She sat down on the old sagging sofa, drinking and weeping. Silently. Not that there was anyone to hear.

Tomorrow, she would be back at work. Boring, mundane work, but it paid the rent. There were times she felt she couldn't manage one more day.

She couldn’t lose her job though. She must not. If she did, they’d be in even bigger straits than the present troubles.

She always tried to do her work carefully and safely. By the day’s end she was exhausted, sometimes too tired even to eat. She drank to help her sleep, to drown out the noise.

***

Two lonely and confusing days followed. However, the turning point would come, and very soon. She could no longer postpone the decision.

The inevitable phone call came, late Sunday evening. She didn’t answer it. Several more times she let it ring out, unwilling or unable to answer it.

After a sleepless night, she called her work, pleading illness. They were annoyed at the lack of notice. She put the phone down and waited. The next time it rang, she would answer it.

***

It rang. Snatching it up, she listened silently to the querulous voice at the other end, asking, explaining, demanding, the voice rising and falling.

“I’m not coming back,” she finally whispered. Relief and shame filled her in equal measures. “I can’t go on. Please look after him.” She hung up.

***

She’d had no help. None to guide her, no one interested at all. Rejection. Increasing distance by her so-called family. What was family? She had sisters and stepsisters. She’d been born into a family with alcoholic parents, and had been removed from their care, moved from one foster home to another, each with their own set of issues. She and her sisters had been separated, almost lost touch. They were therefore not close, and although they knew about her present situation, they could not or would not help her.

Her schooling had been erratic, but she was intelligent, and street-smart. She’d seen a lot of the worst side of human nature. She had not been raised – she’d simply grown older until, as a young woman, she could make little sense of the world around her, starved of friendship and of any meaningful relationship. It made her tough and determined, and she said what she thought. She had nothing to lose. Life continued.

When she met Marco, she fell hard. Tall, handsome, dark-haired, and funny. He was everything she was not. He was from a wealthy family who had prestige and lived in an exclusive suburb, and he went to university. His father had been highly decorated for his contribution to the war effort – a pilot of fighter planes. He was now retired, after many years as a private school headmaster. Marco's brother was studying to be a lawyer. A very respectable family, stable, and comfortable in their easy life.

Marco's sophisticated way of life was very different from Sheryl's world; she did not fit in well, despite her efforts. She admired their well-chosen perfectly matched furniture, and floral arrangements in elegant vases decorating the living areas. Their house was filled with books whose titles she could not even pronounce. At dinner parties she felt awkward ... her eyes glanced discretely sideways, trying to observe which fork to use first. 

But Marco was kind, and talked to her as though she was his equal. They talked for long hours, discussing their ideas and thoughts about life and its meaning - philosophies, purpose, values, people, about all that was important, and about what wasn't. She hadn't read widely, didn't know the classics. Yet, despite his education, he wasn’t as much of a thinker as she was.

He’d never had any demands on him, apart from the mostly unspoken pressure to succeed, and to uphold the family name. He lacked her toughness and resilience. She sought his qualities, and he was intrigued by hers.

Marco took her places – to the beach, to bars and hotels. He drank a lot.

He was not academic, and struggled with his studies, to his parents’ displeasure. His family blamed Sheryl – she was rough and uncouth, a bad influence.

Marco started to feel the stirrings of rebellion. He was becoming increasingly estranged from his disapproving family and spent less time in the comforts of home.

Sheryl and Marco soon became very committed to each other, and, wanting a simple life of peace and harmony, they joined the then-fashionable hippie movement, started to smoke pot, and both began drinking more and more. She had a sense of belonging with Marco and these young, free, rebellious people, and they became her family.

The world took on a rosy hue.

Before long, they were sharing other drugs, and binge-drinking became the norm for their community. Marco dropped out of university. The world of his parents seemed to him to be narrow and pressured, focussed on wealth and possessions, and social prestige - shallow values. His parents were furious. Sheryl was held responsible for all Marco’s choices.

“All you need is love,” they laughed and sang. They moved in together. After all, marriage was never going to be a possibility.

***

Time passed. Pregnancy was inevitable. Sheryl was happy. She’d have a baby to love and care for. She had Marco. She knew nothing about babies, but they would manage. Wouldn’t they?

***

She had no realisation that anything was wrong with her baby. She didn’t know what milestones to look out for. He cried a lot; he did not feed well, either at the breast or from a bottle. He was becoming malnourished. The mothercraft nurse was alarmed. The baby was floppy, did not recognise Sheryl’s face, did not smile. He showed no ability to develop the skills needed for sitting, or even rolling.

Sheryl and Marco were shattered to hear the words confirming that their child was severely and profoundly disabled. Tests were arranged, each result bearing worse news. Severe cerebral palsy, technically blind. Their baby would never crawl, nor sit unsupported; he would never stand or walk. It was unlikely that he would ever speak. They were shocked and devastated.

Marco got a labourer’s job. Sheryl did her best to care for the baby, not very successfully. Government assistance was not offered. Further disastrous news was received when their little one was a toddler, except that he didn’t toddle. He had severe epilepsy, manifesting in several frightening seizures a day. Life was a nightmare.

When their little boy was eighteen months old, Marco left, returning to his comfortable family home.

He could not cope with having fathered a severely disabled son; nor could he accept that he had an ongoing role in this boy’s life. It was all too hard. He wanted and needed an easier life.

The happy hippies did not care to include a woman with such a severely disabled child in their midst. Their role in Sheryl’s life was also apparently over. Friends disappeared, embarrassed to be seen with her.

Sheryl was assisted to organise government assistance. She chose to also work part-time, in an effort to introduce some normality into her stressful life, leaving the child with a neighbour while she worked. As he grew heavier, she wheeled him around in a toddler’s stroller, not designed to support his body. The curvature in his spine grew more pronounced, and his hips were not in alignment. They grew dislocated.

But it was the nighttime which was unbearable. He laughed, wild-eyed, on and off, all night. Not happy laughing, but extremely loud maniacal laughing, which set all Sheryl’s nerves on edge. A few minutes of silence when she would hope he had fallen into an exhausted sleep … and then he would start up again. His laughing was that of a crazy person, loud, shrill, and never-ending. Sheryl lost weight, and found it hard to cope with work when she was so anxious and distressed from sleep deprivation. Depression and guilt were destroying her. During the nights, punctuated by the wild laughter, she knew she was starting to hate him. Yet in her calmer moments she loved him. They survived.

She enrolled him in a school for children with special needs. During the day, the little one would cat-nap, never settling into a deep sleep. Sheryl found out later that he was not sleeping deeply enough or long enough for the growth hormones to be released. At eight years old, he was still being wheeled around in the small child’s stroller.

***

This, then, was Sheryl’s predicament.  

She was physically and emotionally exhausted, and losing her mind from the ongoing sleep deprivation. Her comfort was the bottle, the drugs. She overcame the habit many times – but only for short periods; it always mastered her.

She’d organised for her little boy to have respite care for one weekend a month at a government-run agency. It was little enough help for a struggling young mother, but she cherished every moment of her free weekend. She would take him to the centre on the Friday afternoon and say goodbye, and pick him up on the Sunday, late afternoon.

Except, this time she wouldn’t.

She’d made the decision. She was abandoning her child. She knew she had reached breaking point, and that she could not continue.

She would harm him, or she would harm herself. Or worse.

***

Government agencies hustled together a care plan for him. He’d be transported to a nearby school for children with special needs during the daytime, and he would have a rotating set of caregivers to feed and look after him for the rest of the time. They would be responsible for his medications and well-being, despite their minimal training.

So began stage two of his unusual life.

***

Sheryl left work and booked herself into an addiction recovery program. She also sought help for her mental health needs. She would make a new life for herself. She was strong and tough, a survivor. She’d always had to be. She wanted to reclaim her child.

However, guilt plagued her, ate at her. Who could understand her depths of despair? She’d never known love. Yet she’d wanted to love her child. He was the best thing that had ever happened to her. Ironically, also the worst.

Who could understand her regret and guilt at abandoning the one she’d dreamed would bring purpose and meaning into her life? Who could understand her feeling that she’d failed as a mother?

Who could understand that she blamed herself for his condition? Had it been caused by her drinking and drugs? Nobody knew. She was told that he had probably had a stroke in the womb which had arrested his development. She was encouraged not to blame herself by her caregivers – but Sheryl couldn’t switch off her thoughts so easily, nor her pain. Others were quick to judge her, and point the finger. 

A new arrangement with the government agency allowed her to see her son for a weekend a month. Social workers visited to help her work through options for his long-term care.

A decision was finally agreed to. It would be in her son’s best interests for him to become a Ward of the State. The government would be responsible for his care and needs, but she could still see him. She was still too fragile to be his caregiver.

A private Social Work agency heard of the situation of this little boy, by now eight years old, who had no family life, only a rotating set of caregivers in a government-run respite centre.

They asked Sheryl if she would consider allowing him to be rehomed with a family until he was an adult, at which time he would be accepted into a Group Home for Disabled Adults. The social worker was enthusiastic about a new programme offering long-term foster care to severely disabled children. Her son would be with a normal family, not permanently in an institution meant for very temporary respite care - and she would have ongoing access.

Sheryl’s heart broke. Would anyone want him, with his complex needs? Would they offer him love? She knew the foster system from her own experience and knew the potential for abuse within it. Would she lose him altogether? Would she really have access or would the family not want her around?

It was a heavy price to pay for her inability to cope.

Filled with fear and grief, she agreed to relinquish him to the new long-term fostering program. Was that really the best outcome for her son? He had been in respite care for eighteen months and was now nine years old.

***

My family was the one chosen to foster this little boy. I would be his “other mother”, for Sheryl was still and always would be his mother. He would also have another father. He never knew that other families only have one of each.

He’d also have three siblings, two older sisters, Anna and Bella, and a younger brother, Joe; he would be the brother my son had always wanted.

No one told us his background. Just that this poor little boy needed a family.

Our new life was beginning.

My family had chosen to foster this severely disabled boy. I would be his “other mother”, for Sheryl was still, and always would be, his mother. Marco was his father, but the little boy would also have another father. He never knew that other families only have one of each.

He’d also have three siblings, two older sisters and a younger brother; he would be the brother my son had always wanted.

We were not told his background. Just that this poor little boy needed a family.

Our new life was beginning too.

**********

A big decision. One which would impact the lives of many, and years later the repercussions would still be experienced, right from the time when as a family we chose to go down the “road less travelled”, not knowing where it would lead, or what highs and lows we would experience.

**********

Our son, Joe, had always wanted a brother. He felt that he had been treated differently because he had no one to share his room. Dad and I shared a room, and so did his two sisters, Anna and Bella – where was someone to share his room? In his eyes, we’d failed as parents, by showing discrimination and acting deficiently in not providing a playmate. A significant injustice.

Even as a three-year-old, Joe had gone missing in a department store for a few minutes one day. I found him struggling to carry a bag of disposable nappies – so we could get a brother for him.

**********

Soon after, we decided to offer respite care to disabled children (boys, of course) – one weekend a month. This might help him to feel that he had a temporary brother. We hosted Glenn regularly. He was fascinated by clocks, timetables, and trains – prompting many outings to train stations to watch trains coming and going, checking if they were on time or not. Glenn had to be watched, however, as he was prone to randomly kicking anyone who was in his proximity.

He also threw all the toys over the back fence. On the Sunday night after he left, I would have to go around, apologise, and collect all the toys again. Not quite the substitute brother we’d hoped for, but it gave his parents a much-needed break. I needed respite after hosting him.

We went overseas for two years, during which time Glenn was placed with other respite carers.

**********

Shortly after our return, our local newspaper had a small advertisement which caught my attention. A new fostering program was looking for long-term placements for disabled children. My husband had had polio as a baby and walked with a limp; I had always had a care for the weak, vulnerable, or disadvantaged, and the thought of caring for another child, even one with a disability, appealed. I wanted my children to grow up to be caring and compassionate, to be sensitive to the needs of others, and to be willing to look after any who needed it, without judgment.

We discussed the situation as a family. I reminded Joe that this “brother” would probably not be able to play football or run around. He was happy with that.

We applied. Over the next eight months we completed all necessary paperwork, police checks and many interviews – even the children were interviewed individually. Our home and yard were inspected. Our daily lives and activities were carefully scrutinized. This decision would change our family life significantly, and irrevocably.

We were approved. The fostering would go ahead. The social worker asked what sort of disability I preferred – a strange question really. I didn’t mind, I assured her, so long as the child slept at night. I already had three children and was completing post-graduate studies in psychology. I was a light sleeper … and I knew my limits.

We had known the social worker for many months by then and trusted her. At her next visit she proclaimed that she already had someone in mind – a little boy of nine with cerebral palsy, six days younger than our second daughter. He even had blue eyes, like our son. The two girls had brown eyes.

We were told that this little boy loved music. Ours were all having piano lessons, and practised daily. He was sociable, and just enjoyed being with people, although he was unable to actively participate in most things. She was excited to be making “the perfect match”.

We would have on-going support from the fostering program, and because he was now a State Ward, we would also have support from a Department of Community Services caseworker allocated to our new foster-son, the new “big brother” for our seven-year-old boy.

Introductions would be gradual, just some day visits at first, then perhaps an overnight stay, and a gradual build-up to moving in permanently. His mother was happy with the arrangement, and she would take him home one weekend a month for respite for us. We were pleased. I respected and admired her courage and sacrificial love in choosing to give up her son so he could be looked after well. She knew she wasn’t coping. All in all, it sounded like a good plan.

**********

Jonathan arrived for his first day visit. He was a sweet child, and the children were happy with him. I found him a little difficult as he would not eat the sausages and scrambled eggs I’d made for his lunch. Nor would he drink water like the other children. He would not even close his lips around the cup. Otherwise, the visit went well. 

We had a follow-up phone call through the week from the social worker. Could he be placed sooner than expected? In fact, could it be within the next fortnight? Not what we had expected, but she explained that it would be better for him to start the new school year at a school for disabled children not far from us, rather than change his school mid-term. The summer holidays were drawing to a close; the new school year was about to begin. I understood her logic, and agreed.

She brought him to us, with his few possessions, the following weekend. My birthday. We'd met him only once.

Shortly before she departed, the social worker turned to me and said, “I have some other news. I don’t quite know how to say this, but … I’m leaving the program – I am setting up my own social work practice. But, of course there will be someone to replace me, who will give you every support you need ….”

This news was devastating. Yes, another social worker would replace her, but the new one did not know us, did not know Jonathan or his background, nor his mother. She knew nothing about the circumstances which had caused Jonathan to need foster care, and to become a State Ward.

We had a new child with very complex needs, and we were basically on our own. No replacement had yet been appointed, and we had not met the DOCS caseworker as the placement was rushed.

Looking back, I understood why it was rushed. She wanted it complete before she left. She also wanted it to be a fait accompli before we knew what Jonathan was really like. Before we could change our minds.

We were plunged into three new and very different worlds – the worlds of fostering, disability, and government services. They intersected in our home.

I soon found out that each of these worlds was complex, but the overlap was frightening. We were real babes in the wood, with no idea of what we were letting ourselves in for. We would soon know why it was “the road less travelled”.

I became … the crazy woman.

Little did I know that one day I would be threatened with legal responsibility if he should die.

Author Notes

I plan to write a series of stories about Jonathan's life, and ours, with all the twists and turns, highs and lows. Some readers may be familiar with some parts as they are rewritten for this purpose. Names have been changed for privacy.

Chapter 3
You chose ... a boy like THAT?!

By Wendy G

The next little while was a flurry of activity. Nothing is simple or easy when one fosters a severely disabled child.

We had a new little boy in our family who could not sit, stand, or walk, who needed full care for every detail of his life, including feeding, medications, therapies, dressing, and all personal hygiene. He would always have all the needs of a baby, but he was not a baby, and I would never treat him as such. Respect for others has always been important to me.

I also had to ensure that Anna, Bella and Joe never felt neglected. They were eleven, nine and seven, and they needed me too. Looking back, I always wonder how they managed emotionally during these times of enormous adjustment. Outwardly, all seemed well. But were they internalising their stress, worries and fears? Had I taken on more than I could manage?

Nothing could really prepare one for this monumental task, not all the previous months of training. They were simply words, probably written by someone who had never taken on such a project and spoken by professionals distant from any such lived experience.

Jonathan was non-verbal; he had no communication at all, apart from smiling when he was happy and softly crying when he was upset or sad. If he was in severe pain, or angry or frustrated, he would bite his left upper arm. We’d try to comfort him, while discerning what was wrong – simultaneously attempting to hold his arm out of range. There were times he drew blood, and at other times his upper arm was covered with bruises. It was distressing for us as well as for him. A person with spasticity, even if he doesn’t weigh a lot, can be extremely strong, and sometimes there were two or more of us trying to calm and help him.

He had an extensive list of medical problems – diagnoses on a page, sometimes disguised in complicated medical jargon which we had to interpret and find out about, but seeing the impact of each condition on his daily life was a different, and daily, reality. One of my self-imposed roles was to ease his physical pain and minimise progressive degeneration of his poor broken body. Was that even a possibility? Was I too naïve?

Doctors and specialists would look at his chart sadly, and sometimes dismissively – none could offer any realistic prognosis. Most people with this set of complex disabilities did not reach adulthood. I accepted this, but as a family we determined that whether his life was short or not, it would be filled with love, and it would be as meaningful and happy as we could make it. He was nine when he came to us, and he would move into a Group Home for Disabled Adults when he was eighteen – if he made it that far. That was the plan, and that was the promise.

Many of the intelligence tests involved eliciting some sort of response, but Jonathan could not speak. Eye responses? Technically he was blind, but I knew he could see in a blurry fashion. Gross and fine motor skills? No. He had some movement of his left arm and hand – but responses had to be completed within a specified time frame, and his lack of coordination set him up for failure.

Some of the tests seemed to me to be more suited to testing infants – he refused to even try to respond to these. Secretly, I was pleased. To me this signalled that there was intelligence within. He knew or sensed what was age appropriate. He was classified therefore as having intelligence too low to be measured. It may have been difficult or impossible to measure what he understood, but his understanding was much more than he was ever given credit for. No, he would never do algebra or history in the normal sense, but he was streetwise, and smart in areas we had never thought possible, as we soon found out.

Even by his facial expressions, I sensed that he could understand more than he could respond to. My heart felt for him, trapped in a body which did not work very well at all.

The first step was to settle Jonathan into his new school. I was involved in several meetings with his new school and staff to explain his needs. How could I explain his needs? I scarcely knew him! I was still learning his physical needs, and had only a poor idea of his emotional and social needs.

A school van would collect him each morning and drop him home again in the late afternoon. He loved car rides, so the fact that several children were on his bus route was to him a pleasure, for it meant a longer ride, and it gave me an extra hour with the other three children.

During the day we settled into a routine of sorts. Everything had to be super-organised and run to schedule. We managed.

There were times when I became a little overwhelmed with all the appointments needed for his ongoing care.  Speech, physio, and occupational therapists, doctors, specialists, school personnel ….

Physiotherapists showed me how to loosen his limbs and maintain his range of movement, and there were exercises to do with him regularly each day. Many were painful – and at times he would scream with the pain. I was encouraged to continue, by all the medical experts and therapists, despite my misgivings.

Without these stretching exercises, his contractures would become more and more tight and severe until his body was too twisted to survive. I felt like I was torturing him, and in a sense I was. I wept along with him. I hated strapping him into his “standing frame” to help with weight-bearing, change of position, balance, and bone density, as much as he did. His hamstrings must have been excruciatingly painful as they were being stretched. I felt guilty every time I put him through this. Would this practice later be deemed a crime?

Yet there were good times, happy times, when Anna, Bella, and Joe would help him stroke the cat, placed carefully on his knees, or lie with him in the hammock, or tell him about their school day, or when they would take him out to the veranda to listen to the birds or feel a cooling summer breeze. I was proud of them for their acceptance and compassion. They would find music that he enjoyed and could relax with.

Each was fiercely protective of him, shielding him from those who stared, and there were plenty who did. Anna, Bella, and Joe looked after him with care and love, always referring to him as their brother. We all were aware that some of our friends and acquaintances, and yes, even family members, rejected him. One referred to Jonathan only as “he” or “him”, never by name.

Yes, we had invitations, but they were conditional on whether we would have “him” on that day, or whether it was our weekend for respite. Anna, Bella, and Joe were welcome to swim in the neighbours’ pool – but Jonathan was not, even though he had hydrotherapy with his school program and had momentary respite from his pain with the buoyancy of water.

I hate to say it, but society’s most upright and respected people were often the most judgmental, the most rejecting. They were usually “nice” people, intelligent and capable, and they were often busy with programs to serve others. But not him. They did not know how to converse with a non-verbal person, and usually did not try.

And how does one? It’s easy. One speaks to him as to a “normal” person, moving down to eye-level, and one speaks with the disabled person, not at him.  One does not converse with the caregiver about him or his disabilities in front of him, as if he were invisible. It’s a question of respect, of valuing each individual person, not on the basis of their looks or achievements, but simply because they exist. Each person is still valued by God, regardless of what they can or can’t do. “Doing” is not important, “being” is. But many, or most, were not interested in “a person like that”.

Jonathan could read people easily. If he knew he was accepted, he would hold his head up, and look towards them. If not, he would bow his head and use his left hand to cover his face. He felt shamed and rejected. He remembered people and was consistent in his reactions every time. Oh yes, there was intelligence within.

The ones who accepted him best were the fringe members of society. They too were vulnerable people and knew what it was like to be different and to feel rejected for their appearance. When Sheryl was unable for a time to offer respite, paid personnel would come. The best respite caregiver had multi-coloured hair in a mohawk style, piercings all over her body as well as tattoos, (long before any of those became fashionable) and she had a merry laugh. She loved Jonathan and he was always pleased to see her. “Come on, mate, where are we going on our date?” She would ask. His expressive face lit up every time she arrived.

Who were the only ones to stop me in the street to chat with Jonathan? Two burly rough types who one would hesitate to meet on a dark night. They then turned to me and offered to put his wheelchair into the car for me. That was the only time I was offered help – and it was by marginalised strangers.

So, when did I relax, and have some of what is now called “me-time”? Never, or extremely rarely.

Days and weeks passed. I grew exceedingly tired. This involved much more than I had imagined.

Author Notes

This is the third story in a series. It follows Sheryl's Story and Jonathan's Story. Sheryl is Jonathan's birth mother.

Chapter 4
The good and the bad ...

By Wendy G

Gradually we established some sort of routine for school days with our new disabled foster child, and a more flexible weekend routine. Through the daytime, at least.

The days passed quickly.

His personality was emerging, and we were seeing glimpses of his sweet, engaging, and sociable nature. He laughed with understanding at funny things which happened, and also saw the humour in other situations in our family life.

He was always highly amused when the other kids got into trouble. I could see them glancing sideways at him laughing – and then they would try not to laugh while I was scolding them for some misdemeanour, or for teasing each other or arguing. It soon put an end to my cross words or raised voice. But they knew at least that discipline was in place. Hopefully that would suffice to bring improvement in their behaviour. It’s hard to be cranky when everyone is trying not to laugh!

It was very funny to him when I dropped a saucepan lid with a horrible, crashing noise. He found it even funnier when a lady in a supermarket dropped her carton of eggs. She turned around, shocked that someone was laughing – and then saw the funny side herself, fortunately. He was spontaneous. If he found something humorous, he laughed. He did not know of the social niceties of NOT laughing at someone’s misfortune.

**********

Nighttime, however, was a different matter in terms of routine. There was none. For me the nights passed slowly – they were simply a nightmare. I couldn’t wake myself from this nightmare, for I was already awake. This was my lived reality.

Jonathan did not sleep at night. It was as if he suddenly flicked a switch at bedtime.

Surely this behaviour was because he didn’t know us, I reasoned, and he would soon settle in. Surely! But how much time would it take for him to settle in? Night after night, week after week, the same odd behaviour continued.

The nocturnal maniacal laughing which had been Sheryl’s undoing was continued at our home. I’d been told nothing about this aspect of his care, so it was a horrid shock to the system. Did he have a personality disorder? This was not laughing at something funny, or at kids getting into trouble. This was wild-eyed, desperate, out-of-control, crazed laughter. This was not normal. And it was not funny.

I asked the school to not let him nod off during the day. They couldn’t stop him – and it made their lives a little easier too, with one less to worry about, sitting in a corner, fast asleep. Through the day he could be drowsy and catnapping; at night he was literally wide awake and crazy. Was this all part of his disability?

I asked the children also to help me to keep him awake until bedtime – we were vigilant to try and waken him if he nodded off. It was in vain. If he fell asleep during the day he wouldn’t sleep at night, I believed.

But it was not that simple. No amount of talking, cajoling, or prodding would keep him awake if he wanted to sleep, and nothing we tried could help him to sleep if he didn’t want to.

I tried a gentle bedtime routine of stories, soft music, cuddles, and comfort with stroking. We no longer turned the television on after dinner. We all listened to classical music to relax.

Nothing worked. I was thankful if there was an interval of fifteen minutes or half an hour of peace and quiet during the evening, and through the night I was pleased if there was an hour of quietness. Usually there was not. My husband was unaffected. This was fortunate, because he needed to head off to work each day. He slept deeply – and had once even slept through an earthquake. The rest of us suffered.

Could I continue?

I contacted the fostering program, asking for answers. Where was the on-going support I'd been promised? It had not been very forthcoming since the hand-over. In fact, it was pretty much non-existent.

They admitted that his night-time maniacal laughing had been going on for years.

Why had no one told me that this pattern of non-sleep was his norm; this was why he was in foster care? Why had no one mentioned that at his respite home for the last eighteen months he had done the same?

Why had no one thought to let me know that the caregivers’ solution was to take him into the living room to watch television with them to distract him – and to give him Coca-Cola to drink during the night? And little wonder I was having trouble getting him to drink water!  These caregivers were paid for night shift at the respite home, and then went home to sleep during the daytime. I did not have that luxury.

Why this conspiracy of silence?

I asked the new social worker in the fostering program why he had been given to our family when I had specifically asked for a child who slept well at night. They "wanted him to go to a nice family!" was the response.

I was not pleased with the compliment.

My son, Joe, could not get to sleep or stay asleep with the noise. We switched rooms so that Joe and Bella would share, and Jonathan would share with Anna – she went to bed later and the aim was to get Jonathan to sleep before her bedtime. It never happened. Weeks passed. The maniacal laughing continued, hour after weary hour, one long night after another. I tried a different strategy.

We converted our lounge suite into a double bed for Jonathan, to give the others a chance of sleep. Our house was not large, but the living room was the furthest from the bedrooms. Many times each night I hastened into the living room to try to settle him. I was so tense and strung out with the jarring, screaming, blood-curdling laughing, so wild and crazy, that I could not get to sleep in between times. The strain was starting to affect me.

I did not want to give up on him. During the day we saw such a different side of him; we were seeing, little by little, his personality shining through. But at night I was in despair, and my feelings were resentful and angry, even though I tried to keep calm, for his sake, for my children’s sake, and for my own sake.

Who knew if he could sense my moods and was reacting to them? Was this simply attention seeking behaviour? Was he frightened of the dark, of being alone? Who could tell?

I organised for Jonathan to go to Sheryl (his birth mother) for a few days while I travelled seven hundred kilometres north to the University, for a Residential Course for the psychology subjects I was studying. While there I spoke with psychologists and psychiatrists about the issue. They told me that some disabled people have what is called day-night reversal, and they never changed.

I was aghast.

What had I gotten myself into? Had I made the biggest mistake of my life?

There must be a solution, or we would have to send him back … but where? He couldn’t spend his life in a respite centre!

However, if he had been like this since very young childhood, it seemed very unlikely that I could suddenly come up with a life-changing turn-around, a complete change of behaviour.

 I was at rock-bottom.

What a confusing paradox between how I felt about him through the day, and the resentment I felt at night! Yet, that very intertwining of emotions was what kept me going.

There were positives, despite this huge negative.

 

Author Notes

Apologies to those who have read some of this in a past story. I'm trying now to weave it all together into one comprehensive whole. This story is the fourth in a series of stories about fostering a severely disabled boy for many years. The first three are Sheryl's Story, Jonathan's story and You chose ... a boy like THAT?

Chapter 5
Resolutions and Solutions

By Wendy G

Previously: We had begun fostering a profoundly disabled boy who seemed to have day-night reversal. He laughed like a maniac, loud and jarring – throughout every night. Simply telling him to go to sleep was ineffective; leaving him to continue such behaviour was not possible. I had to find a solution.

Personally, I felt that his wild laughing might be a result of frustration at not being able to communicate, and that it was attention-seeking. I remembered the story of Helen Keller and her amazing intelligence trapped within a blind and deaf body. A way had been found to open up her life and bring meaning into it.

I was determined to find a way for Jonathan. He might not have the same level of intelligence as Helen Keller, but nor was he devoid of understanding. He was not a vegetable. He had personality and a sense of humour. There was a spark within. My role was to ignite that spark, and to fan it till there were brightly glowing embers of satisfaction and fulfilment, for him, and for us.

I went home from my Residential Course with two resolutions. I would teach him to communicate, and I would teach him to sleep.

*********

I kept thinking about these two resolutions. Teaching Jonathan a system of communication was first. If we could master this, I hoped the second might follow more easily.

I barely had time for my studies. However, my brain never stopped, despite my weariness. I was on a very steep learning curve in terms of severe and complex disabilities.

**********

I knew Jonathan was generally a good eater. But I had come to the conclusion that he didn’t like eggs or oranges. The former he simply refused, turning his face away, and when offered the latter he would add a wrinkled brow, because of the acidity.

That was one of the reasons why he had not eaten scrambled eggs on the day of his visit, as I realised later. The other was that without lip closure he could not manage bites of sausage. He needed very finely chopped or minced food, and he needed it to be accompanied by some mashed texture food. Otherwise, his food would simply drop out of his mouth. Feeding was complicated, difficult, and time-consuming.

Had I been warned of this? Not at all. Another important piece of information that the social workers within the fostering program had neglected to tell me.

I had to physically assist by supporting his lower jaw and massaging his upper lip downwards to help with lip closure. I learned the techniques with the aid of speech therapists with whom we had regular appointments. It would usually take me an hour and a half to feed him his evening meal.

**********

From the above awareness, I devised a plan for initiating some communication.

After school each day, I showed him an orange, let him feel and smell it; I removed the peel and cut a few small pieces. With one hand, I held his head, and with the other I placed a piece of orange onto his tongue. His brow wrinkled and he would pull back. I withdrew the orange – and helped him to shake his head from side to side. “Say ‘No, Mummy’”, I would instruct him over and over, gently moving his head from side to side while saying it. “No, Mummy! No, Mummy! No, Mummy!”

Within six weeks, I could simply ask “Would you like some orange?” knowing what the answer would be, and he would shake his head. We tried to work out his preferences for all foods and activities with this one skill that he had mastered.

A smile sufficed for “Yes” for other things he wanted. He did learn to nod his head for “Yes”, but it was a harder skill for him to master, had a slower response time, and was less consistent than shaking for “No”.

I also taught him to reach out with his left hand, to touch his bowl if he wanted more food. Soon, at the end of his meal his hand would move out towards his bowl before I had even offered him more. He enjoyed his food and was eating more and more. Despite the quantity he ate (the same quantity as my husband), his weight gain was very slow. His rigidity and spasticity burned up the calories. The “failure to thrive” syndrome from his babyhood would be an ongoing issue.

With these basics, however, I could ask other questions and receive answers about his preferences. The Twenty Questions game – we played it every day. Would he like to go outside? Watch TV? Listen to music? Go out for a car-ride? Lie in the hammock? We all soon learned to recognise and respect his answers.

The first resolution was relatively easy to accomplish.

We had a basic system of communication.

**********

The nighttime cacophony of loud, wild, out-of-control laughing continued. After three months of very little sleep, I understood why some nations used sleep deprivation as a form of punishment and torture. One night I cracked.

I yelled at him – a poor little disabled boy in a strange new home. But I totally lost it. “You WILL learn to sleep!” I shouted. “If you don’t, you can pack your bags, and leave!” I screamed. “This is it. I’ve had enough! I can’t do this anymore! Otherwise, out the front door you will go!”

This just shows how irrational I had become. Jonathan could not even sit without support. He had limited use of his left arm, and no control of any other limb. There was no way he would be packing his bags, let alone standing or walking and leaving through the front door! And there was nowhere for him to go. THIS was now his home. WE were his family.

My children looked at me in horror. “You can’t send him away!” they cried. “You wouldn’t send any of us away!”

My children were looking at me as though I were a demented witch.

I was trapped. I was also horrified at who I had become. “Nice” through the day, but tense and upset at night, and now …. What sort of caregiver was I? I was filled with shame, despair, and guilt. Even my own children did not like what they were seeing.

His birth mother, Sheryl, had managed this for eight years? I had cracked after just three months! But I knew I couldn’t go on forever like this.

This battle was one I would have to win. For my own sanity.

Not long after that night, I devised a plan. Probably unorthodox. It would doubtless not have been approved by “authorities”, but they weren’t living through this – I was.

I did not care. I was desperate. I just went ahead.

**********

I knew he was most comfortable lying on his right side, and up until now I’d always tried to maximise his comfort.

However, that night, I lay him in bed on his tummy, head facing to one side, and one arm out each side.

It is very hard to have a good belly-laugh when you are on your tummy. Because of his limited movement, he could not turn over. He was unable to move, stuck on his tummy, but still laughing that crazy wild laugh which reverberated through my head, jangling my nerves.  Soft music was playing. The mad laughter continued for a while – and then stopped. He was asleep.

It’s hard to laugh loudly and wildly for more than an hour if you are lying on your tummy. Feeling sorry for his discomfort, I crept in and turned him onto his right side. He stayed asleep. For a while.

The laughter began again. I went back in and turned him back onto his belly. And later, when the maniacal laughter had stopped and he'd fallen asleep, back to his side. And so we continued throughout that night.

It would have been cruel to leave him on his tummy all night long.

From getting up to him at least eight times every night, the frequency gradually reduced to seven, then six. I turned him onto his tummy every time the wild laughing started up, then I would sit huddled in a blanket in my room until it subsided, and then turn him back onto his preferred side. But the periods of maniacal laughing were getting shorter, and his times of sleeping were getting longer.

Repeat. Repeat. Repeat.  Five times a night, four times a night … three times. Gradually he learned to go to sleep and to stay asleep. It was working.

Then, another change started to occur. If he were sitting on my knee near bedtime, having a cuddle, he would try to stretch out. He was signalling that he wanted to go to bed. I was elated. He understood – and he now enjoyed going to bed. He settled quietly to sleep, almost every night.

If he ever started looking wild-eyed and began laughing, by the end I only had to say, “You start that again, and I’ll put you on your tummy!” He would hastily stop.  He understood exactly what I said, and he knew I would do it.

He understood consequences, and that he had choices. This was a boy who was, in theory, profoundly mentally as well as physically disabled. I did not believe it. I knew he had some level of understanding, and I always spoke to him as if he understood every word, the same as I did with my other children.

It took a year to get consistency with an appropriate bedtime routine, and a normal night - but I taught that boy to sleep.

I had achieved my second resolution.

Looking back, I reflected that there was a distinct turning point in his crazy night-time wild behaviour. The turning point was the day I lost my cool and threatened to send him away.

He knew what I said. He understood. He did not want to leave us. I was very moved, and very encouraged. We were his family, and he wanted that to continue. He may have been mentally disabled – but he understood many things he was never given credit for.

From then on, I only had to get up twice a night to him, but only for repositioning. If I heard a soft moan, I knew that he needed turning to his left side. That was less comfortable, so an hour or two later, another soft moan would indicate he needed to be turned back to his right side. I could manage that, and that was how I was able to keep going.

Getting up twice a night to care for him, without any wild behaviour from him – that was easy.

I could do that. No problem.

Chapter 6
The Cost of Caring

By Wendy G

Jonathan and his needs consumed me. In those early days, there were so many things he needed, which had not been offered to Sheryl, his birth mother. It saddened me that she’d been left to manage on her own without any help, advice, or support. Even without a supportive wheelchair for her son.

One of the first things we had to do was get a new child seat for our car, with appropriate supports for his torso. It was simpler to pay for it ourselves than to do all the paperwork necessary for the Department of Community Services (DOCS) – and we did not yet have a caseworker assigned to Jonathan.

Next, I contacted DOCS to send a caseworker as a matter of urgency. Nothing happens fast. Eventually a new young graduate came to see me – he really knew nothing about disability, but made notes as I directed, about Jonathan’s essential equipment.

Although Jonathan was nine, he was still only the size of a three-year-old. Yet it was demeaning for him to be in a toddler’s stroller. Jonathan needed a wheelchair, a custom-made one to provide support for his twisted frame, and gel padding to ease his protruding bones. This would take time and multiple fittings with occupational therapists, but it was necessary for him to have maximal postural support.

DOCS was responsible for the cost (which was several thousand dollars) because Jonathan was now a State Ward. Sheryl could never have afforded a custom-built wheelchair for him, and no financial assistance of that magnitude was ever offered to her.

We had to get a disability parking permit for the car, and to do that, we needed to get certification from our family General Practitioner. Despite the paperwork from the fostering agency, we needed to take Jonathan in person to our GP to “prove” he was really disabled. Whenever the permit expired, we would have to take him back to show that he was still disabled. The doctor asked questions about his conditions. I answered, and he wrote what I said – and received payment for his “help”.

There was more paperwork for the government service responsible for disability parking permits, and we had to take Jonathan there also, to “show” him to them as well to prove that he really was disabled.

Nothing was simple or straightforward. It is no wonder disabled people feel disrespected.

When his wheelchair finally arrived, it was difficult to fold, and heavy and awkward to fit into our car. We needed a new vehicle and finally settled on a van. DOCS did not offer to contribute at all – we paid for it ourselves.

It still involved lifting him out of his wheelchair and fitting extra safety restraints in his special car seat, then dismantling the wheelchair so it would fit in the boot, and then reversing the procedures at our destination. Lifting and positioning him was awkward because of his spasticity; this made him feel so much heavier than his weight indicated.

I noted two things – I was becoming very strong physically, and everything took so much longer.

Joe still had no one to share his room, and we didn’t have a living room in the evenings. Jonathan needed several items of equipment as well as his wheelchair.

We decided we needed a bigger home, with five bedrooms; each child would have their own room. The original purpose of a roommate for Joe? That had long since expired!

Fostering was becoming expensive. We did receive a government allowance to “cover costs” … but a new car? A new home? No, no financial assistance at all.

Of course, by this time, we were committed to him. He was part of our family. Money was not more important than a child’s well-being.

**********

At the start of our second year of fostering, Anna had started at a private secondary school. At twelve years old she was catching a bus and a train, and then a school bus. Her school was expanding its campus to include a new primary school on-site, so we decided to build a new home closer to the school, and all three children could go together just on the one school bus. We needed simpler logistics for this new life we’d embarked upon.

Meanwhile Jonathan had settled into his special school and was still being picked up each morning and dropped off each afternoon.

We chose a house-plan with wide hallways, and an easy traffic flow for a wheelchair. Jonathan’s room had access to the main bathroom, with another entry for the other children. It gave him more privacy and involved less carrying for me.

It would take almost a year for the house to be ready, but it was ideally suited for our new blended family. The downside was all the extra housework for a very large home, and we needed to establish and care for a much larger garden. Work in the garden, although very physical, was my time for relaxation and de-stressing.

There were other advantages to moving – the hallways were wide enough to be a racetrack, for Joe to race Jonathan around the house in his wheelchair, the faster the better, and sometimes on just two wheels to make it exciting going around corners. Jonathan loved speed.

**********

Part of Jonathan’s condition was epilepsy, and he had up to twenty grand mal seizures a day.

We all took note of the length and severity of each one, recording them for his neurologist. Anna, Bella, and Joe learned to recognise and accept this, frightening as it sometimes was, as part of our ongoing care, and we all learned what to do and how to discern if Jonathan needed an ambulance.

Jonathan frequently fell asleep after his seizures, as they were draining, and he seemed to have headaches afterwards. This was doubtless part of the reason why he was frequently napping at school – the after-effects of his seizures.

At one of our specialist visits, the neurologist suggested that Jonathan participate in a clinical trial for a new drug. His present medications were clearly not effective. I obtained permission from DOCS, and the trial began with a quarter of a tablet every fourth day, and I was to very gradually increase the dose under medical supervision.

There was immediate and dramatic change. By the time his optimal dosage was established and stabilised, Jonathan’s seizures decreased to only two or three a week. He obviously felt better, and this helped him remain awake and alert during the day, which was also beneficial for the night-time routine we were in the process of establishing. The neurologist was thrilled at the astounding difference in his life. He was a delightful man, genuine and caring.

With his new wheelchair offering comfortable support to sit straight, very few seizures, and a vastly improved sleeping pattern, plus a way to communicate, Jonathan became so much more alert, and very interested in his environment and all that was taking place in his new life.

By this time, we all loved him dearly. The children were very caring and protective of him, and life was settling into a smooth rhythm.

Surely, everything would now progress smoothly until he was eighteen …. for the cost of caring is high, in terms of time, physical and emotional energy, and the financial expenses.

Just as well I didn’t know what lay ahead.

Author Notes

No major dramas in this story, and there were some peaceful interludes before the next dramas unfolded, thankfully. I am trying to give an overview of all that fostering a severely disabled boy with complex medical involves. It was a major life change in every way.

Chapter 7
The Person Within

By Wendy G

Jonathan’s wheelchair was supportive and comfortable, but he still needed to be repositioned frequently. We had a beanbag, and we bought him a comfortable armchair contoured so he could not fall out. We made him comfortable on the floor or the beanbag to relax and loosen his limbs with gentle stretches to alleviate the stiffness from always being in a sitting position.

He seemed to be biting his arm much less – that was our guide to pain and discomfort – and we were more in tune with the sources of his distress. We sensed that he was starting to notice more and take more interest in his activities and environment.

**********

We worked with him to try to achieve some success at sitting unaided, surrounding him with cushions and with the beanbag behind him.

Children first learn to sit cross-legged, and that’s how we started.

Initially, he would sway to either side or fall forward if he was unsupported; we could not let go of him. But gradually, over many months, with better head control, and improved posture, we had some success. He learned to sit cross-legged on the floor and maintain his balance! Only for a few minutes, but he had some independence, and it was good for his legs and muscle tone.

This normal milestone is important for babies, and a source of pleasure to their parents, but when it takes ten years to achieve this skill, the joy is multiplied. He lost the skill when his tendons tightened over the next couple of years. Too short a time for being like everyone else, but at least he experienced that success for a while!

Anna, Bella, and Joe would give him a choice of age-appropriate toys to reach for and hold – we also wanted to keep his arms moving and maximise the use of his hands, with being able to grasp and release at will. Gentle stretching – his contractures made such things painful, but these things were important.

**********

Jonathan always loved music, and his tastes were many and varied, from classical through to rock, pop, and country, but he also enjoyed African music with strong drumbeats and the music of our first nations people groups, particularly with didgeridoos.

We played a variety of genres for him to enjoy.

If it was lively music, he would jig in his wheelchair, his face alive and happy as he danced along. If the music were sad, he would listen attentively … and then tears would slowly and gently roll down his cheeks. He entered emotionally into whatever mood the composer wanted to convey – every time. He experienced music, deep in his soul, at a level that many “normal” people have never experienced or understood.

Our three children had piano lessons, and Jonathan would sit in his wheelchair beside each during their daily practice. For each one, he would listen intently as they played, face raised. If they struck a wrong note, he would moan and look sad. If they did it on purpose, he could tell – and he would laugh. He understood the joke. Humour is a sign of a functional brain. More importantly, he understood the music, and he sensed what was right and what was not.

However, for each of his siblings, there was always one song they had to practise which he disliked, a different song for each one. He would get very distressed, to the point he would have to be taken to the other end of the house.

“But Jonathan,” they would exclaim, “I must practise that one! I have a music exam coming up!” He never made a mistake or became confused about which piece he disliked for each one. It became the family joke. “Quick, take him to his room. I’m about to practise the one he hates!”

There were also times they would seat him on the piano stool and help him play the keys. The sense of wonder on his face was beautiful to see. One of the children would hold him, while another helped him play. Then they would wedge him between them and let him play on his own.

And then one day, he sat alone at the piano, on the stool by himself, with a child hovering on each side, arms ready to support him if he lost his balance, and he “played” the piano by himself. Just the pleasure of striking the notes, without help. It didn’t make music as such, but it was an amazing achievement for a child who had been written off. One of my favourite photos is of Jonathan sitting “playing” the piano. An extraordinary accomplishment. For most people, no, but for him, yes.

**********

If he heard a piece of music or a song on the car radio, he knew whether he liked it or not – and never forgot the ones he liked. We were returning from the children’s hospital after a late afternoon appointment one day, and he was tired and hungry. He started to cry. Then a song came on the car radio which I am positive he had not heard for many months. He remembered it. The crying ceased immediately, and he was relaxed and happy again. Such is the power of music to cheer and encourage.

And this was another insight into his closed world. His memory was excellent in some areas, and music was one of them.

**********

Spatial awareness was another surprising skill. When we moved into our new home, he was the first of the four to recognise the routes for getting home. The others were quite unsure of the nearby streets and access routes for a while after our move - but not Jonathan.We could approach the house from any of the four directions and he always knew when we were getting close. How did we know he knew?

We could tell, because he loved travelling in the car, and did not like having to get out of the car when we arrived at our destination. We would always have to let him know ahead of time. “Home in five minutes!” or “We’re nearly there!” Regardless, he would always get distressed as we neared our home and then cry for the first few minutes after the car stopped. Another family joke - who will take him for a quick walk and give him some distraction for a few minutes, so he could accept that the car-ride has stopped? 

Similarly, whenever he had to get out of the car, any where, any time, it was the same - school, shops, outings .... The only time he happily accepted finishing a car ride was when we drove over two days to an interstate destination, about six hundred kilometres each day. That was, according to Jonathan, a "proper" car ride! But he didn't complain about getting out of the car. 

Marco, his birth father, came on occasions to take his son for a weekend to spend some time with his grandparents. Marco lived more than an hour’s drive from us. One time, Marco was bringing Jonathan back to us and exited from the motorway. He then needed to do a right-hand turn, followed by a left into our street. He missed the turn into our street.

Jonathan became very distressed, vocalising about the need to turn around. Sounds, not words. He remained agitated until Marco corrected his route and turned into our street. How does a child who is perceived to be severely mentally disabled and who is legally blind manage to know such things? He had the senses of a homing pigeon, and he never made a mistake. It was uncanny.

*********

The longer we had Jonathan the more we saw that he had his own form of intelligence. How arrogant people sometimes are to disrespect disabled people, and denigrate them and their different abilities, which may not show up on an intelligence test, but which will be recognised if one looks for them with discernment.

Above all, they are people with feelings, human beings who merit the same care and love as others. We are all on a spectrum of abilities, and there is no point at which we can dismiss a person as useless, unworthy, or without value. Such judgment is not ours to offer.

How many times did I advocate for Jonathan even with specialists who should have known better? To some, in fact, distressingly, to the majority, people like Jonathan were just cases, to be hurried through and rapidly dismissed. How many really had the patience or desire to “find a way” for Jonathan’s life to be meaningful and happy?

I tried to put myself in Jonathan’s place. Sometimes I just rested my hand on his beating heart – and I knew we had done the right thing in fostering him. Such moments made up for all the hard times, and were a source of strength for keeping me going later on.

He was and is a blessing to our family.

He will go through life without ever uttering a single word. I have never heard him say “I love you!” and I never will, but I know he loves me.

Author Notes

In the photo, Jonathan is about eleven, six days younger than Bella (with the long hair). Anna was about thirteen, and Joe (on the right) was nearly nine.

Chapter 8
Peaceful Interlude

By Wendy G

Jonathan’s story so far has been like the movements of a symphony.

A dramatic overture which was disconcerting, jarring, and emotionally charged, followed by the second movement, more serene and pastoral where the music soothes and eases the emotions.

The third movement follows, where there is a sense of stability and well-being, with occasional strong music reminding one that life is never completely smooth. This is where we are in the story at present, drawing towards the end of the third movement.

But the composer has not finished. The fourth movement takes a turn, with the entry of crashing discord, harsh sounds, the thunder of drums. Drama. All sense of serenity has been shattered. This is where we soon will be. And the final closing movement? Will the tension be resolved? We will see.

The first years passed rapidly, and I was too busy to notice how swiftly time was flying. I sometimes think I have forgotten the details of my own children's lives.

We were managing. Once the sleeping issue with our severely disabled foster child was resolved, everything settled more easily into a pattern. Daytime was filled with normal, but enriching activities; nighttime was for sleeping. Life was relatively good.

Regular visits to doctors and specialists continued. I provided the information; they noted it down in his files. And they were handsomely paid.

There were occasional and intermittent visits by a support worker from the fostering agency and from the Government Department of Community Services. They were basically visits to tick the box that they had been done.

Almost every time a DOCS worker came, it was a different caseworker. A little down the track, this became a major and dramatic problem. They didn’t know Jonathan as a person – he was a case. Nor did they know me. I gave them a report about how we were going. I asked for equipment Jonathan needed, and sometimes they helped facilitate its acquisition. There was no support or advice, as they lacked hands-on experience in disability.

I reminded DOCS of their promise that both Jonathan’s birth mother and I would be involved in choosing a suitable Group Home for Jonathan when he turned eighteen, as the fostering was only until he reached adulthood. His eighteenth birthday was also the expiry date for his being a ward of the state. I knew I would not be able to continue caring for him indefinitely. I was assured that he was on the list for a placement, and we would both be involved in selecting the best place for him later on. I was satisfied.

Occasionally the fostering agency organised for Jonathan to be invited to a special activity. Once he attended a garden party at Government House. Another time he enjoyed a free flight in an aeroplane – and how he loved the sensation of speed as we took off, and the excitement of the plane screaming down the runway after landing!

**********

We tried to include Jonathan as much as possible in “ordinary” childhood events and pastimes. He loved going for a walk, and to gardens and parks, or for simple picnics. When we went to the library, Anna, Bella and Joe sometimes chose an audio book for him.

When we took the children roller-skating, they used his wheelchair as a stabiliser in the practice area until they could keep their balance. Other children soon asked if they could “borrow” his support as well. I am sure he knew at that moment that he had a contribution to make, that he had something special to offer others. He was happy.

The manager noticed him and asked if Jonathan would like to go on the rink with him. Indeed he would! This young man was a speed skater, and Jonathan flew around the rink faster than ever, hair blowing back, eyes wide with excitement and pleasure. His obvious joy was very satisfying to us. It was good to see that, despite everything, he could have fun.

If we were shopping, Anna, Bella and Joe took turns in wheeling his chair while I loaded the shopping trolley. They tried to avoid sounds which frightened Jonathan. He always became extremely distressed by the sound of a crying baby – he would get very agitated and start to cry too, and bite his left arm, and it took quite some time to comfort him. This was a cry of fear, and we could never discover why. What was there in his past, or in his deep memory, which was such a consistent and powerful trigger?  We never knew.

They also wheeled him away from the stares of the simply curious – except for the time when they couldn’t avoid one particular lady. Whichever aisle in the supermarket they took him into, she would reappear, and be very obviously staring at him. They came back to me to ask me what to do, as it seemed to them to be simply rude. At that very moment, she reappeared – and approached us.

“Is that Jonathan?” she asked. Surprised, I affirmed that it was. She was Sheryl’s Aunt Mary, and had not seen Jonathan since he was quite small. Jonathan’s great-aunt. She was interested to hear that he was now in foster care, but there was no indication that she wanted any further ongoing contact with him. She hurried off, satisfied.

**********

The children all had different skills with him.

Joe’s speciality was racing him around the house, from the family room through the dining and living rooms and back down the hall – a big circle. Sometimes down the steep and winding driveway – but this was more than a bit dangerous, and I had to put a stop to it!

Bella was the second (or third) mother-figure, able to calm and relax him if he was upset. She’d wheel him into her room, and they’d have a "talk" about whatever was troubling him. Apparently, he promised to buy her a Lamborghini. She asked him to nod and smile if he agreed to buy her one when he grew up. He nodded and smiled. She’s still waiting for it.

Anna often took him outside to look at nature or listen to birds, or to lie in the hammock with her, or play with the cat.

Jonathan’s pleasures involved any experiences involving the senses. Music, food, being in nature with flowers and other plants, and any activity involving speed – these were his favourites.

Because of his extremely poor vision, the best programs on television for him were nature documentaries, with sea creatures or large animals on the screen, usually moving slowly, often accompanied by calming music. With his wheelchair up close, he could see and understand.

Another pleasure was the occasional trip out in a small boat. He loved the relaxing properties of water, perhaps inherited from his father, who was a strong long-distance swimmer and a fisherman.

Hydrotherapy was a place where his stiff body, with all its spasticity, could relax, being supported by the buoyancy of the water and by trained exercise personnel. Gentle exercise was important for pain relief and for developing as much mobility as possible.

Any slow gross motor movement was good for him. He liked to swing Bella’s bedroom door open and shut, particularly enjoying it mostly if it squeaked. It was good exercise for his left arm, stretching out, so his wheelchair was slowly moved further away so he would have to reach further and get better arm extension. So we encouraged him – and never oiled the door!

He also enjoyed watching me iron, or clean mirrors and windows, or wash the car, all gross motor activities. With his poor vision he could see what I was doing. That encouraged me to do the household tasks regularly – it brought pleasure to him if not to me.

His was a simple lifestyle, not complicated by wanting or needing to feel pressure to keep up with peers. In his life there was no sense of competition – and we simply wanted him to be happy, to be well, and to live as normal and varied life as possible.

Despite the length of the list of his medical issues, he was a healthy boy. If the others caught a cold, which invariably led to bronchitis or asthma, he did not catch it, and was the strongest of all in that regard.

**********

Yes, everything took much longer, the workload for me was exhausting, there was little respite, and it was frequently lonely. Most people had no understanding of the complexities of my life – and nor did they want to. I was, for the most part, in a world of my own.

**********

I was pleased to see how Anna, Bella, and Joe adjusted to having a disabled sibling. He was both accepted and welcomed.

I am sure there must have been times when they resented the turn our lives had taken, as there were for me, but they never complained about missing out on things their peers were involved with. Looking back, we probably missed about ten years of movies, other entertainment, and perhaps wider socialising. Was that important? Probably not. 

We also saw what other people were really like at a deeper level. Acceptance, compassion, love … were these genuine, or just nice words?

Certainly, we all experienced insights and a sense of satisfaction only offered to those who follow the long hard road.

I sometimes referred to Jonathan as another teacher. A teacher inspires others to learn and grow, to discover, to face life with courage and resilience. This was what he taught all who knew him. His generally cheerful disposition and engaging personality made him a favourite amongst all who took the time and made the effort to see the person within.

Jonathan was the one who taught my children how to accept others, how to love without conditions, and without expecting anything in return. They learned how to be compassionate, and how to care for the vulnerable by treating them as normal and valued human beings.

For many, these attributes are simply words and aspirations; for my children, they became reality, lived experience. And they learned also about standing up for what they believed in, sometimes at great cost ….

Author Notes

DOCS = Department of Community Services.

Chapter 9
Exclusion and inclusion

By Wendy G

All three children were by now enrolled at the same school. When Joe was nine, his teacher was teaching folk-dancing to all the children in his year group.

“Come on, do it properly,” he exhorted his pupils, “You look like a lot of spastics!” This did not sit well with Joe. After the class he approached the teacher for a quiet word and asked him not to use the word “spastic”. “I have a brother who is spastic,” he explained. The teacher was gracious enough to apologise, and never used that expression again.

I was pleased, firstly because Joe had cared, also because he had the courage to do something about it, which even involved correcting an authority figure, and thirdly because he used the word “brother”, not “foster brother”, not “friend”, but that most caring of relationships, brother. He has always referred to Jonathan as his brother, implying his full acceptance into the family. He'd also chosen a poster for his room which read, “Stand up for what is right, even if you’re standing alone!”

Anna’s experience, at age fourteen, was different, and did not involve Jonathan, but to me also showed courage and a willingness to stand up for what she felt to be right, particularly looking out for someone in a vulnerable position. 

She was in a small elective class. Several of the students constantly and relentlessly goaded and provoked the elderly male teacher, making it hard for him to teach.

One particularly stressful day, he snapped, and lightly slapped the ringleader on the arm. Seizing her opportunity, the girl raced from the classroom screaming, “He hit me! He hit me!”

He did, but only lightly – and she exaggerated dramatically, making it out to be a much bigger thing than it was.

Of course, teachers must not touch students, so he would lose his job, finishing his career in disgrace. Anna went to the school principal and explained how that girl’s extreme and on-going provocation had caused the incident and asked that he not be dismissed. Her advocacy was in vain. He had to leave the school, a distressing situation.

Word of her trying to help the teacher got back to the students. From then on, for more than two years, she was the victim of ostracism and bullying. Now having no friends, she would spend lunchtime in the library. But gangs of girls would go into the library too, surrounding her and pushing her into the bookshelves, and jeering and taunting her mercilessly. Payback.

One evening, distressed, she talked to me about her problem.
“Do you still believe you did the right thing in standing up for the teacher and explaining the circumstances?” I asked her. “Yes,” she replied, “and I would do it again if I had to!”

“Then hold your head up high, and ride it out,” I replied. “You’ve done what you could, and you’ve stood for what you believe to be right, asking for justice and understanding, and I am proud of you for having that courage!”

It was not easy, but she did it. Years later, girls started asking if they could sit with her in class, if she could help them with their work – and she was voted into a school leadership role. They recognised her strength of character, that she would not be cowed or broken by bullying, and that she would stand up for what she believed to be right. She'd earned their respect. 

This was indirectly related to the many times she had stood up for her brother, explaining to staring children and adults, so they too could understand and show compassion for someone who was vulnerable.

**********

Jonathan’s school was not far away, but I felt he was not being offered enough mental challenges. I wanted a place which would stimulate him mentally while still giving him the care he needed for his comfort and physical challenges. I did not want school to be a child-minding experience for him.

I considered enrolling him at the school for deaf and blind children, which was much further away, and took him for an "interview". Basically, it was for me to see what sort of programs and initiatives they offered. The students there had a range of disabilities from mild to severe. All had either vision or hearing impairment, along with other issues.

On that particular day, the children in the class into which he would be accepted were in the midst of a unit about foods from around the world, during which they learned about other cultures and cuisines. It is always hard to know how much they understood, but I was pleased that they were given an opportunity to learn more about the varied and diverse world we live in.

They’d had stories and had been helped to do art and crafts related to various countries. That day the focus was on food; they had helped with the cooking – and were about to do a taste-testing.

The students had learned switch technology and had mastered the skill of turning on appliances by pressing on large brightly coloured hemispherical switches. For those with poor fine motor skills this was an achievable task. Others had helped to stir or use whisks or beaters.

Jonathan was obviously pleased to arrive in time for the food. For a boy with his complex level of disability, food was very important. He always enjoyed the sensory pleasures of smell and taste, and he liked the sounds associated with using different appliances and with cooking.

Some of the students were reluctant to try “strange” food. Not our boy. He became very excited, smiling and nodding his approval with each spoonful offered. His only disappointment was that it was a “taste-testing”, not a banquet. He passed the (not very traditional) entry requirements, his general pleasure indicating he would be an enthusiastic and motivated student!

I enrolled him at this school therefore, which meant I had to have him ready earlier for the longer bus ride, and he arrived home later. But he was a sociable and cheerful person who enjoyed the stimulation and the relationships he was forming with the other students. No longer was he napping during the day.

The school had a little herb garden and a sensory garden. One of his tasks was to water the plants, holding the hose with his left hand. Many was the time he “accidentally” turned the hose on staff, who dodged and darted out of the way to avoid a soaking. He found this extremely humorous.

“Oh sorry, I can’t see very well,” or “Apologies, I lost my grip on the hose,” one could imagine him chortling, if only he could speak.

He did the same at home, when we would try to include him in as many activities as possible, including car-washing or gardening. I was establishing a garden at our new home, and included the planting of perfumed flowers and shrubs he would like. His “help” would become the family joke.

“Look out! Jonathan’s helping Mum to hose the plants!”.

One of his favourite activities was to hold flowers or scented gum leaves close to his nose and eyes, so he could appreciate the beauties of scent and sight. Whenever we took him for walks, we would also try to find flowers or small twigs for him to hold and we talked to him about their colours and perfumes.

This new school had a fund-raising wheelchair walkathon activity, in which he participated. The mobile ones helped push the ones in wheelchairs. The blind mobile ones had a staff member as a guide, making a three-person team. It was a lot of fun, and everyone was a winner.

I was glad we had chosen this school – the range of disabilities was greater, but so was the range of the programs. Jonathan accompanied his class to the nearby shopping centre – and he took turns at pressing the button, with assistance, for the lights to change for them to cross the main road, or carrying the shopping basket.

He was out in the community – and in that suburb most were used to seeing the children from the school for deaf and blind children, and they were well accepted. The man selling milkshakes and ice-creams would wait patiently, listening attentively while the verbal ones ordered morning tea for the group. This could sometimes take a while as they struggled to make themselves understood. Others would carefully count out the necessary coins. He never hurried them, and learned their names, greeting them individually each week. They were being treated as “normal” and learning living skills.

Staff communicated with me through his Communication Book, updating me regularly about his activities and progress. They knew I was a teacher.

**********

The following year, I received a request from the school principal.

Could I … would I … consider becoming a substitute teacher there? Just for one term. A staff member would be away on long service leave. I would not work in Jonathan’s class, but with a small group of younger students with similar medical issues to his. Severe and complex disabilities.

One term. Ten weeks. Fifty days.

Jonathan would stay on his regular bus run, (where his wheelchair was strapped in, and they would collect students from a number of suburbs) as he loved a long bus ride. This would mean I could leave home later than him and return home earlier, as I would go directly there and back. I would not need to do the heavy physical work of getting him and his wheelchair into and out of my car twice more each day. Time alone while driving.

I explained that I had no formal qualifications in Special Education. That didn’t matter. I had, by now, years of life experience. They wanted me, needed me … pleaded with me.

 My world was about to change again. Just for one term. I had finished my post-graduate studies. I figured that doing this for fifty days would not kill me. I agreed.

Author Notes

This chapter too is a "setting the scene" chapter, filling in details of life as it was .... Various elements of these stories will resurface later. Jonathan is non-verbal, so the interview was simply a discussion between the principal and myself.

Chapter 10
School Stuff

By Wendy G

I had my own small class at the school for deaf and blind children, the majority of whom were in foster care.

Most marriages and partnerships break up after the birth of a child with such disabilities, and it is usually the mother who is left with the child. What does it say about the lack of support for struggling women who must consequently relinquish their children, because it is impossible to manage without extra help and resources?

Bobby was in a caring foster home, but he did not survive to his teenage years.

A blind girl, Suzy, had extremely severe disabilities – the product of being shaken so vigorously as an infant by her father, that her brain came loose. Her father was jailed, and the very pretty little girl with beautiful blue eyes and long blond plaits, was in foster care with a loving foster mother. Her prognosis was poor. She cried a lot, and it was very hard to settle her. What a waste of what could have been a beautiful life.

Then there was Charles, who was tube-fed. He was very overweight and had no muscle tone, again the product of abusive parents. He too was in foster care. However, his foster-mother was trying to profit by the system.

Instead of using her carer’s allowance to buy the food formula he needed, with carefully controlled calories and nutrients, she gave him baby formula, which was considerably cheaper – but designed for babies’ rapid growth.

He became so heavy that she couldn’t lift him into the bath, so he was never bathed! The site of his feeding tube was constantly infected. We used to bathe his feet and other areas to remove the built-up dirt and grime. It was a dreadful job, even just from the odour. He was terribly uncared for, and every holiday break, he ended up in hospital.

I felt that this neglect of basic care needed reporting to Child Welfare authorities, and I approached the school principal. I had to go through her – she alone could report. She refused. She said that there were so few foster carers that it would be a waste of time – the system would not remove him from her care. My arguments were in vain.

During one of the holiday breaks, before I finished my time at the school, he died. That was the worst experience. An unnecessary death, before his eleventh birthday – and I have always regretted that I didn’t by-pass the accepted protocols and go straight to the authorities, hoping they would find a way to provide alternative care for him.

My most beautiful and moving moment occurred on the day I was leaving the school. My special Danny, totally blind, could speak a little, but he only repeated what others encouraged him to say. He never expressed his own thoughts in words. He practised asking for “Chocolate ice-cream, please,” at the nearby shops and was able to pass the money to the assistant. That was his task each Friday.

On my last day, I turned to him and took his hands in mine and said, “Oh Danny, I will miss you so much!” This precious child turned his dark-brown unseeing eyes towards me and replied slowly and carefully, “I … miss … you … too!”

This was the only sentence of his own initiation that anyone had ever heard him speak. I was moved beyond measure, and thinking about him still brings tears to my eyes. Within a couple of years Danny too had died, at age fourteen.

**********

So many of these young ones had just a short life, limited by pain from their complex disabilities. We, the staff members, tried to make a difference, to assure them of our love and care. We wanted to offer what comfort and happiness we could.

No specialist I had ever visited could or would offer a prognosis for Jonathan. It was always in the back of my mind, therefore, that life could change suddenly for him, and his time, too, might be short on this earth.

**********

By now our Jonathan was a young teenager and was starting to become tall and gangly.

He’d come through a tendon-release operation at twelve and had endured the “rehabilitating” horrific leg brace I had to make him wear for hours at a time. I was his personal torture machine, forcing him to experience further unbelievable pain for some hoped-for long-term benefit. I wept with him, hating myself for doing it, but knowing I had to follow doctors’ orders; otherwise, his operation would be in vain.

**********

Jonathan loved food, as was evident at his “interview” for the school, and he was a good eater, although very slow. He always enjoyed a large breakfast, together with two main meals a day, plus nutritious desserts, all healthy food, and these were effective in helping his weight to catch up to his peers to some extent.

Yet his parents were both slightly built; he too would always be thin. In his early childhood, the growth hormone had not been released during deep sleep – because he had never slept deeply, another factor to his being under-weight when compared with norms.

And yet norms were based on a normal population with children who had developed appropriate muscle tone, not on children whose very spasticity burned up the calories with their jerky and uncontrolled movements. He would never meet the norms.

I always fed Jonathan slowly, to avoid aspiration and possible aspiration pneumonia, and also so he could develop jaw strength, muscle tone, and lip closure.  

A specialist in disabilities at one of our many appointments learned how long it took me to feed Jonathan – and strongly recommended that Jonathan be tube-fed. I had not forgotten Charles and his infections around the gastrostomy site.

When I asked him if it was a medical necessity, he replied, “No, but think of how much more time you would have with your other children!”

I could not believe my ears. A person of his standing asking me to deprive Jonathan of one of the most significant pleasures of his life – for my own convenience?

I was shocked. I told him curtly that if I did not have time to feed him, I would give him to someone who did have the time! My words were not well-received.

I was angry and disillusioned. What disrespect for Jonathan!

And that was the start of an on-going battle between me and certain medical experts, who of course always knew best. They were powerful figures and looked after each other’s interests. I was only a foster mother, and I had dared stand up against one of their own. I knew this conversation was not concluded ….

**********

It was at this school for deaf and blind children that Jonathan became involved with a girl – the first of the children to have some-one special. Kate, in his class at school, was the only survivor of very premature twins. The oxygen she had needed at birth to help her lungs to function had caused blindness, and she had other mild disabilities – but she could walk and talk.

In fact, she rarely stopped talking, with her quite husky voice. Kate was a couple of years older than Jonathan, but she came to my classroom one day, and asked for permission to phone Jonathan after school.

“But Jonathan can’t talk!” I reminded her. That didn’t matter – I was to be the intermediary and speak on his behalf. So almost every afternoon the phone would ring, and Kate would talk to him about anything and everything, while I tried to insert helpful and interesting comments on Jonathan’s behalf.

He started to get quite excited when the phone rang, so I gathered that Kate’s interest in him was reciprocated. They both just wanted to be like normal teenagers, hanging out and talking non-stop on the phone after school. Each evening, I would finally have to remind Kate that I had to prepare Jonathan’s meal. Our home routine followed a fairly tight schedule.

The romance continued for months.

*********

I was having increasing back pain with all the lifting, even though we always worked in pairs to lift the children at school. I returned home to much more lifting, usually on my own, for every aspect of his personal care.

I was also starting to want to return to teaching in a secondary school. While I cared deeply for these special children, there was a considerable emotional toll.

I made the decision to leave. Had I fulfilled my one term commitment – ten weeks, fifty days?

Yes, I certainly had. I’d worked there for two years.

I wanted a part-time teaching job closer to home ….

Chapter 11
A Sense of Belonging

By Wendy G

Marco, Jonathan’s birth father, visited occasionally, taking Jonathan out for the day to visit his parents in their beautiful harbourside home.

Jonathan also had an uncle and cousins, all extremely clever and successful lawyers and doctors – but there was little or no contact with them. Later, the knowledge that Jonathan’s uncle was one of the most prestigious lawyers in the state, and was even awarded "Queen's Counsel", would prove very useful …. Who knew how he would become linked with us further down the track?

Within a few years, Marco developed cancer and died shortly after.

Jonathan’s birth mother, Sheryl, was consistent in visiting monthly for her weekend of respite care. Initially, she would come, collect him, and leave hastily, and would return him quickly at the end of the weekend, hurrying home straight after. She didn’t seem to want a relationship with us.

It saddened me, but it wasn’t hard to understand. I put myself in her shoes. She saw herself as a failure. How could this “other mother” manage, with three other children as well, when she herself hadn’t been able to look after just one? The reason was simple: this “other mother” already had experience bringing up children and was receiving a measure of practical support from the family members.

Over time Sheryl relaxed more and stayed longer on her visits; we chatted about Jonathan and his life. I’d been honest with her about my difficulties in adjusting to his nighttime behaviour and shared with her how I managed it. She’d seen huge improvement in his sleeping pattern and was thankful and was delighted to see his seizures so much better controlled. She knew her son was happy and well; he was being loved and cared for.

She was happy too that I referred to myself as “Mum Wendy” because it meant that I accepted him and loved him as my own. I promised her that I would never usurp her rightful place. She was “Mum Sheryl”, and she would always be his real mother. Jonathan did not know that other children did not all have two sets of parents.

I could see the enormity of her love for him, and it was sacrificial love. She was willing to give up her child because she knew he would be in a better place with a family, receiving some help from the State for his practical needs; he would have a chance to live a normal and happy life.

Did she want him back? No. She was realistic. She could not provide what he needed. She could see him flourishing in family life and was glad he had a brother and sisters. And she knew that despite her present good health, she was still too fragile to be his full-time caregiver. I was honoured that she trusted me with her son.

She started very gradually to open up about her past life, and the story was sad, always recounted in a matter-of-fact manner. She had no self-pity, and I came to understand her extraordinary toughness. Life had not been kind to her. Her pain was still raw, years later, about various heart-wrenching experiences of abuse and rejection she’d experienced throughout her life.

Christmas each year was, for her, extremely difficult, as were other days of family celebrations. She had a few friends, a few relationships, but she always felt alone, and different.

After inviting her to our place for Christmas Day every year since the beginning of our fostering, one year she finally accepted, to our surprise. Previously her answers had been a quite abrupt “No thanks.”  But this time I felt it was a landmark in our relationship. I wanted her to feel part of the family too, for we were linked in an unusual way.

She was included in everything on that day and did not rush away at the end; she seemed happy throughout, not at all uncomfortable. Her personality was always quiet and withdrawn, but she said she’d enjoyed herself, and was happy she had come. I was pleased. Our Christmas celebrations were always informal; it was easy for her to relax, and from then on, she came every year.

She later told me that she’d always refused our Christmas invitations because it would have been too hard for her. She had never had a single happy Christmas. She didn’t know what it was to be in a loving family and didn’t know how she would cope emotionally. How does one get to that age without knowing a single day of family happiness?

She was quite overcome when I told her that I considered her as a sister. Her “real” sisters had never wanted to have anything much to do with her, particularly after Jonathan’s birth. She too was starting to feel part of our family. Our relationship, over time, became very close, and I could “read” her needs almost as much as I could read Jonathan’s needs. I included her in every decision which had to be made about Jonathan, whenever possible. She appreciated it.

Yet, there were also times when she was hospitalised for varying periods. I knew it meant she had fallen back into old habits and was paying the price. But she fought hard to become well and stay well, time after time.

She was a fighter. I didn’t and don’t judge her – I had never walked in her shoes, living a lonely unloved life in a broken home with alcoholic, violent and abusive parents.

She later retrained as a bus-driver, navigating the narrow streets not too far from where she lived. She knew that she herself was part of the traffic noise she hated, but it was a steady job, and would help to ensure she didn’t succumb again to the demons of her past. She chatted with me about her experiences as a driver.

She rarely conversed with her passengers, but despite her quiet demeanour, she gradually got to know the regulars and their little ways and tried to look after them. Many were society’s outcasts, and she identified with them.

What I noticed most was her care for the vulnerable. She would wait patiently until the elderly or disabled were safely seated and settled, before driving off. It sometimes meant her bus was then running behind schedule, a fact duly noted on her performance evaluation, and for which she was rebuked by the bus company. She refused to change – for her, people mattered more than bus timetables.

As the years passed, I could see her trusting me more and more, and although she never wanted to intrude in our family gatherings, I could see she was becoming more comfortable with us all, and she was starting, at last, to genuinely feel a sense of belonging. We were now her family too.

Which was just as well ….

**********

As for me, after leaving the school for deaf and blind children I was accepted for a part-time position at a nearby school, working the equivalent of three days a week. A couple of days before school recommenced after summer, it appeared that the contract had markedly changed from what had been initially advertised – it was now almost a full teaching load.

Once more, I had fallen into a trap: I had seven classes, almost two hundred students. Homework and assignments to mark, exams to set and mark, reports to write and almost two hundred parent-teacher interviews, twice a year. It was not part-time! That year nearly killed me, with looking after Jonathan as well.

Just as well I had learned that one does not die from being tired.

The following year I changed schools, to a new one being established. Sixty students only, in my first year there, each one doing both French and Maths. Kids I got to know and love ….

**********

By this time Jonathan had turned seventeen. He was getting heavier, and more awkward for me to lift, bathe, reposition in bed, dress, and feed. Full care, with little respite. My back was constantly aching. I felt as though a steel band was encircling and pressing my torso, crushing me.

It was clear that the time was drawing near for him to move into a group home. Sheryl and I talked about the qualities of a group home for disabled adults that we considered important for his happiness. We both wanted to see a gradual transition.

His introduction to our home, after eighteen months in respite care, had been swift and sudden, certainly not ideal. There was little information and no time for adjustment for any of us. We did not want a repeat of that.

We wanted him to have time to relate to new carers, perhaps visit his new home initially just for a weekend, and then gradually build up the duration of his stays – and we wanted them to get to know him little by little too, learning to read his signals. We needed to explain his personality, his physical and emotional needs. The process this time had to be gentle and smooth.

As a family, we would also need to adjust to his move, we would need time to separate emotionally. We had to have confidence in his new carers, believing that he would be loved and looked after well. He had been such an enormous part of our family life.

We would miss him dreadfully and worry about him – what fears might he experience, what confusion? He could not express anything. Would he feel abandoned, rejected?

None of us was looking forward to what is normally an exciting coming-of-age experience for young people.

We could not possibly have imagined what happened next ….

Chapter 12
Leaving Home

By Wendy G

The years had flown past: Jonathan was seventeen. The fostering program had specified that we would foster Jonathan until he was eighteen, when he would transition into a Group Home of our choosing.

However, a few months before his eighteenth birthday, I had such bad back pain that I could not continue. I phoned DOCS, explaining about my back. They were vague about Jonathan – but understood my situation. They could offer us a month in a Respite Home not far from Jonathan’s school. He could continue to be picked up by his regular school bus.

I accepted – there was little choice. We took Jonathan there, for what we called a “short holiday”. I hoped it would be enough for my back to recover ….

We all worried about him, and whether he was being well looked after. And of course, we missed him badly – he had become an integral part of our family. There was a huge emptiness in our home.

********

My second daughter, Bella, was trying to concentrate on preparations for her final exams. I later found out how this anxiety about Jonathan, on top of her studies, was impacting her. To my shame, I say now that I should have noticed more, been more alert to the needs of my own children.

To me she seemed to be coping well with her studies; her quiet demeanour was always calm and measured. It was around this time too that a friend of hers lost her brother in a terrible car accident. So much extra pressure.

Being verbal doesn’t necessarily mean someone will speak of their needs, and she never wanted to make a fuss. Later she told me of how difficult it had been for her, and I wished I had realised at the time.

However, she became a young woman who could read the hearts of others, who had an intuitive understanding of how to sensitively and gently offer comfort and strength when needed, perhaps because she had been one who did not, or could not, ask for it herself when she needed it.

**********

The time had obviously come to immediately begin the process of looking for a Group Home, and Sheryl agreed. We would check them out together. Who knew how long this process might take?

I rang DOCS again, asking to speak specifically to Jonathan’s caseworker. I could not remember the last time one had visited. The fostering program support had degenerated also, from little to almost non-existent.

“Jonathan?” was the perplexed reply from DOCS. “No, he doesn’t have a caseworker any more ….”

Why not?

“He’s in a stable placement – he doesn’t need one ….”

But we needed a person to liaise with us as he transitioned to a Group Home!

I said I wanted a new caseworker to be appointed immediately, to work with us in finding a Group Home which would meet his needs – Jonathan’s name was on the waiting list; it had been put on the list when he was nine years old, to be effective for when he turned eighteen.

No … his name was not on any list. I was aghast.

No … he would not get a new caseworker. He was nearly eighteen, and at eighteen, he would no longer be the responsibility of DOCS. They were not interested.

I phoned the adult equivalent of DOCS, known as FACS (Family and Community Services). No, they were not interested in helping us. He was not their responsibility – he was not yet eighteen.

I was shocked beyond belief. We’d fallen through the cracks of the system. Too old for one government department, and not quite old enough for the other. We were literally in “no man’s land” – and it was not a pretty place.

Once again, I had been too trusting and naïve. I believed people. How many times had I been assured that his name was on the list for a Group Home placement?

Was there even a list? Apparently not. There had never been such a list.

How many times had they promised we would be involved in finding him a suitable home? Assurances of an easy transition …. All false. No one cared.

Perhaps I should have looked in the mirror and seen the sign emblazoned across my forehead: “GULLIBLE!” or “NAÏVE!” or was it “STUPID!” or “IDIOT!” They all suited.

**********

What would we do?

The month of respite was drawing to a close.

I had received no phone calls from DOCS during the time of his respite care. However, they had apparently not forgotten Jonathan ….

One afternoon, I received a phone call from his school.

Had I heard the news about Jonathan’s new home yet?

New home? What new home?

Having worked at his school for two years, the staff knew me well, and trusted me. They also knew DOCS well – and did not trust them. The principal suspected I hadn’t heard, so she filled me in on all she knew. 

DOCS had contacted the school and organised for Jonathan to be picked up straight after school the very next day. They would call by the respite home to pick up his belongings and take him to his new home. The principal told me the suburb – in the hills district, an hour from my home, and over an hour from his school.

Without our being involved in the selection process? Leaving behind all his possessions still at our place? Without saying good-bye to his family who loved him? Without even an address?

And then I knew.

The shock nearly caused me to faint, and I had to sit down.

A few months prior to this I had watched a documentary on television about a motel in that area mentioned by the principal. It was on a main road. It provided accommodation for teenagers who could not live at home, and for whom foster families could not be found. Workers from DOCS came in daily to supervise.

It was not a Group Home – it was a motel, being paid by the government to put a roof over the heads of troubled teens to keep them off the streets. These were the outcasts of society, the lost ones. This was the way DOCS “cared” for them – and ticked the box that they were being looked after.

The workers would not have been trained in the area of disabilities. They worked rotating shifts, so there would be no consistency of care.

I was horrified.

There would be no one who understood how to feed him, how to successfully give him his medications, no-one who knew how to move his arms gently to release tension and maintain movement, no one who knew how to attend to his personal care, how to bathe him and dress him, taking account of his spasticity and minimising his pain. Was there even a bath or a shower-bath on the premises? He certainly could not shower himself ....

His right arm had to be put into its sleeve before the left arm, as he had more flexibility on the left side … all those little things that I did automatically … but who would know? Who would understand? Who would care? Who would turn him over twice during each night? Who would reposition him during the day, to avoid bedsores? No one.

Who could read his signs, interpret his moods? He was fully dependent for all care, twenty-four hours a day, seven days a week. He couldn’t even explain that his nose was itchy, or that he was tired or hungry, or sad.

I rang DOCS. The conversation was short. They gave me the address of his “new home” as they optimistically called it. Yes, it was THAT motel.

Perhaps they thought they were doing me a service by relieving me of my fostering “job”. Perhaps other foster mothers or birth mothers would be relieved that their work was completed, that the young person was no longer their responsibility to worry about.

However, I don’t think they thought at all about how it would impact me and my family, losing Jonathan in this way. I might be “only” a foster mother in the eyes of DOCS, but this foster mother was not able to accept that disastrous plan.

I rarely get angry – but I was angry.  Very angry. Angry and disillusioned.

This would not happen. We had come too far, and he would not end up living indefinitely in a motel with no one to love and care for him.

The following afternoon I received permission to leave my school early. I had one thing on my mind, only one thing ….

I would not allow this to take place. I would arrive at his school before the DOCS workers took him away. I was still his foster mother. I was going to bring him back home.

I kidnapped him.

I took a child who officially and legally was a Ward of the State, and therefore "belonged" to DOCS, and I brought him back to our home – his home. I had no idea what the outcome of this might be. I didn’t really care.

Chapter 13
Does anybody care?

By Wendy G

Last chapter: I had “kidnapped” my severely disabled foster son of nine years and brought him back to my home when the Department of Community Services was planning to take him from his school and leave him indefinitely in a country motel, to be cared for by a rotating series of workers who knew nothing about his complex care and needs.

**********

I was in a state of shock. All sorts of crazy ideas flashed through my mind.

I would expose this potential mistreatment of Jonathan. I would show up the inadequacy of DOCS. I’d do whatever it took.

I would go on one of those current affairs programs on national television if I had to. My personality is normally quiet and reserved, but I knew I would not sit back and docilely let this happen. Would there be any interest in such a story? Would the public feel the same outrage as I did? Would anybody really care? I had no idea.

My mind was racing. I would hate being on television; I’d hate every moment of the whole process. I would embarrass myself and be an embarrassment to my family also.

I was upset, angry, and frustrated. I’d had enough. I was worn down. Emotionally and physically exhausted.

**********

Other thoughts zig-zagged through my frazzled mind as well. Had I committed a criminal offence?

Probably.

Furthermore, would I be on a current affairs program for this reason?

“Respected teacher kidnaps student!”

I tried to picture myself being hauled before the court system and taken off to jail for kidnapping. Then what would happen to Jonathan? And what would happen to my family? My imagination was not helpful.

My next thoughts were probably more rational. Hadn’t Jonathan been placed in MY care until he was eighteen? Perhaps it was the DOCS workers who had tried to take him away surreptitiously?

Who exactly was ultimately responsible for his well-being? His birth mother? His foster mother? DOCS?

**********

Regardless, I did not regret bringing him home. But I also needed reassurance that he would not be snatched from my home. I would be back at school on Monday. What was I to do with him? Dare I send him to his school, or would the DOCS workers come back for him? I would have to take leave perhaps. I wanted safety and security for Jonathan, and ongoing appropriate care for him. Was that really too much to ask? What would it take to get justice for him?

**********

That evening, my husband had a brilliant idea. He’s very level-headed and has little tolerance for incompetence or injustice. We discussed his thoughts, and his idea was indeed a very sensible and rational one.

The next morning was Saturday, so we bundled Jonathan into his wheelchair and paid a visit to the office of our local member of parliament, whom I shall call Mrs L. One of her portfolios? DOCS. She was the person in charge of this malfunctioning department.

Did we have an appointment? No.

Did I care? No.

On reflection, it was nothing short of miraculous that she was in her office on a Saturday morning.

She would listen to our story, and she would do something!She must have been quite startled – but to her credit, she did not react negatively.

I had no plan. I had no idea what I expected her to do. I just wanted her to cancel the ridiculous “new home” plan her subordinates had contrived. I think I just wanted her to listen, to acknowledge, and to understand why this could not and must not happen. Not for Jonathan.

And she did – she listened carefully as I filled her in, not only on the last couple of days but on the previous nine years.

She could see my distress at the decision her department had made. She could see that they had not supported us for all these years. She could see by looking at Jonathan that his support needs were extremely high. She could see too that the DOCS solution – living in a motel with no one able to manage his disabilities was impossible.

Finally, she asked how she could best help us. She was kind, sympathetic, and most of all, she understood. She said that because it was the weekend, she could not do anything immediately, but she would see to it first thing the following Monday morning.

I was thankful for her words, but I was worried. I would have to manage, with my painful back – but I would manage! I was not giving in on this.

On Sunday afternoon, there was a knock at the front door.

To my alarm, the visitor was from DOCS.

Perhaps he saw the fear and distress in my face – he hastened to reassure me that he was acting on the request of the Minister, Mrs L. He was one of her most senior advisors.

Mrs L had already been busy, and he was there to organise daily support for me with lifting and bathing Jonathan every day, and to help in whatever ways possible until his future was clarified and organised in a way which pleased me.

He also told me that Jonathan’s school bus had been cancelled by the other DOCS workers as it was too far for him to go to school from the hills area.

How dare they also cancel his transport to school? The end of a schooling program for him? No good-byes to his friends or staff?  Just there one day, and gone the next? Never!

He would be sitting alone in a motel room every day? Doing nothing? It was too steep and hilly an area for him to even be taken for a walk in his wheelchair! With not a soul that he knew, and not a soul who knew him. And being non-verbal, he could not explain a single detail of his care or needs.

The more I thought about their stupidity and callousness, the more my distress and disillusionment resurfaced.

However, this man, like Mrs L, was both kind and competent. He had on his own initiative already organised for Jonathan to be collected each morning from our home in a wheelchair taxi, to be taken to school, and brought home again in the afternoon. This would have cost a considerable sum.  I did not care.

Looking back, I have the utmost respect for Mrs L and for this man. Wisdom and kindness are two values I like and respect. I also value those who are committed to their work and to problem solving.   They had both chosen to forego their weekend to jump through hoops to look after us. Perhaps they were also worried about what would happen if these events were made public.

I am sure that they would have also chosen to look more closely at the way this particular portfolio was being managed, or perhaps mismanaged.

The extra support started within a couple of days.

Jonathan was to remain in limbo for nearly six months. 

**********

And so we continued, struggling on.

Soon came the news that a placement was available in a disability service which provided comfortable and suitable accommodation and an interesting Day Program for young adults as well. Would we be interested in checking it out?

We were assured it was a lovely place, and there were others with complex needs similar to those of Jonathan.

By this time, I was very discouraged, disillusioned, and cynical. I refused to believe what anyone else told me. I’d been let down too many times.

“He will only be placed there if both Sheryl and I have full confidence in the service,” I declared.

It seemed that, far from checking out a number of potential places and choosing the best for Jonathan, the reality was that a good disability service was rare, and places available were even more scarce. There might not be much choice.

I was determined by now that I would continue to advocate for Jonathan, no matter the personal cost. I’d made a commitment, and I would fulfil it.

He had become my child as much as Sheryl’s, but not by birth. By love. I would not let him down.

We were both his “real” mothers.

Chapter 14
An institution? Yes or no?

By Wendy G

Had we inadvertently stumbled across the perfect environment for our ex-foster son, who had extremely complex disabilities? Was this to be his "forever home"?

The disability service suggested to us sounded promising. It seemed that Jonathan would be looked after by caring and experienced staff – and there was an enriching Day Program …. It seemed to be what we were looking for.

Apparently, however, this service was considered by the government to be an “institution”. It was not a Group Home because there were about a dozen clients, housed together - although only two or three to each bedroom. However, a single room had recently been made available, and it could be Jonathan's if we wished.

The staff were excellent, according to all reports – and nothing else was available. This place too was nearly an hour’s drive from us, and more than two hours from Sheryl’s home.

An institution? How would Jonathan cope when he was used to a family? We’d been promised a Group Home, with house parents.

 I had many misgivings – but we decided that Sheryl and I would take Jonathan there to check it out. To a large extent, we wanted to see Jonathan’s own reaction – he was extraordinarily intuitive and would make his feelings clear.

We arrived late on a Saturday morning – and were warmly welcomed by cheerful staff. We were ushered firstly into the beautiful gardens – to join a birthday party for one of the clients.

There were established trees for shade, flowering shrubs, wind-chimes, pleasing seating areas, and clusters of balloons and other decorations for the special birthday girl. Appropriate teenage music was playing. There was an air of happiness and excitement.

Jonathan was obviously delighted. He loved parties and was very sociable – he fitted right in and was offered party food, presented in a way he could manage.

Later the staff suggested we go indoors. Apart from the bedrooms and kitchen area, where a professional cook was employed to provide nutritious food, there were lounge rooms, craft rooms, activity rooms, and physical therapy rooms. The buildings were extensive, and the view over the gardens from most of the rooms was attractive.

A very well organised day program with a variety of activities, including music, craft, learning improved communication skills with developing technology, cooking, and a host of other things was provided by this centre.

The clients were divided into small groups for this, so they could get to know each other better, and staff could focus on their individual needs with consistency. If he came to live here, Jonathan’s Individual Education Plan would be brought from his school and adapted to the environment and learning programs here.

Jonathan at first did not want to go inside – he wanted to stay where the fun was happening. However, once inside, he relaxed.

They showed him the Sensory Room where changes of position could include being comfortably stretched out on a long beanbag or sitting in a massage recliner, or having a foot-spa while watching lights of changing colours and patterns light up various corners. There were lava lamps, and a huge fish-tank with slowly swimming fish. Fresh flowers from the garden catered for the sense of smell. If there were no flowers, they used lightly scented candles.

Some of these activities were designed for physical relaxation and loosening of tense, tight limbs, others for teaching the vision-impaired ones to track lights, and yet others simply for emotional well-being. This was a place for soft music, for quietness. The clients were allocated turns, so that it was never busy or loud.

We were impressed. Jonathan was happy. Predictably, he did not want to leave the Sensory Room.

Sheryl and I sensed that he would be happy here – we would accept the offer of a placement.

The institution had an open-door policy. We could visit whenever we wished, and yes, we could take him for outings, or bring him back home for weekends.

Wasn’t that exactly what we had hoped for?

However, more information was still being offered. We listened carefully.

**********

The Government of the day had apparently declared that the accommodation wing of this service would be closed down within a year or two. All such institutions would be closed, permanently.

Disabled people needed to be treated with dignity and they should be visible members of their local community. We could not disagree with that.

They would therefore be devolving into Group Homes, but the Day Program would continue; all clients would be taken by bus to the Centre for their personal program each day.

The plan was for all clients to be housed in freshly renovated ordinary homes, adapted for wheelchairs and provided with hoists, with a maximum of four clients in each. There would be a family atmosphere, and each home would have House Parents, just like a real family.

My time as a foster parent was now drawing to a close, but in a more satisfactory way. Sheryl asked me to still be the “person responsible” involved with decision-making and completing forms and paperwork. She and I would remain in regular contact, both with each other and with Jonathan.

It sounded good.

*********

I filled in reams of paperwork – he would have his own folder kept up to date with his information accessible to all staff.

He was leaving his school and friends behind but would have the opportunity to be farewelled appropriately. He was still entitled to his certificate of completion of their program for him. His Individual Education Program from school would be transferred and in the near future it would be incorporated into the new adult Day Program the disability service would prepare for him, once they were more familiar with his interests.

General health, specific needs for his conditions, medications, names and contact details of specialists, and of course his dietary requirements … all these were duly noted.

I wrote that he disliked eggs and oranges – but ate everything else with much pleasure, including a variety of international cuisines. He enjoyed trying new and different foods – both taste and texture were important to him. I explained how to feed him with textures he could manage, and how to assist with lip closure. What I said aligned well with the procedures they already followed.

A dietician was on staff, as well as a speech therapist who advised about eating skills and best practice; there was also an occupational therapist who looked after postural support for chairs and wheelchairs and advised on movement and exercises. Hydrotherapy was offered, and I completed all the necessary permissions. Everything had been thought of.

It seemed that I could now relax, knowing that with all this expertise, Jonathan would have many rich and varied experiences for this next step in his life. He was now an adult.

Was my work over?

**********

The move took place. We continued to see much of Jonathan, and he appeared settled. He adjusted well, was quickly accepted, and seemed to be happy with his new life.

Why then did I have this inexplicable sense of foreboding?

Chapter 15
Intermission

By Wendy G

How nice it would have been if Jonathan’s story could end here.

How wonderful if it had been a “lived happily ever after” ending at this point.

Jonathan has successfully, and despite many odds, reached adulthood. A lovely new home has been found, and the transition has been relatively smooth after an initially bumpy period.

He is to be cared for by people who understand the needs of clients with complex disabilities; he will enjoy an interesting and challenging Day Program to meet his social and mental needs, as well as his physical requirements.

Our family can take him home for visits, as can Sheryl, his birth mother.

Life should surely be smooth for all of us, from now on ….

My life can return to normal, and normal for me is looking after my family, and secondary school teaching, which by now is becoming full-time again as the school grows and my role develops.

My role as a foster mother is officially over. I can let go of my fostering responsibilities. The fostering allowance has ceased, maybe at his eighteenth birthday, or perhaps a couple of months earlier when he moved into his new home. I don’t really know. Fostering for me was never about the money.

But fostering a person such as Jonathan for ten years presupposes that a bond has developed. One would hope so. In fact, I doubt anyone could continue for this length of time without developing an emotional attachment. The strange thing is – I had never really given any thought as to how one disengages from an emotional bond. Nothing is mentioned in the training for foster carers about that aspect! How to let go?

What happens to this bond? Does it just fade and disappear, or simply weaken? It is not the same as for one’s own birth children. With one’s own children the relationships change as they mature, and we come to relate with them as adults. The bond never disappears, but its focus and scope change.

 My goal in mothering was to bring my three to responsible independence. I wanted them to live a rich and full life, and I wanted them to make wise choices and decisions at every stage of their adulthood. The apron strings would be gradually loosened and then untied.

They would be fledgelings, leaving the nest, and they would learn to fly, even to soar.

But this was not possible for Jonathan. He could never be independent. Whether he lived a full and rich life would always depend on others who would make all his decisions for him at every stage and for every detail of his life.

Without a voice, he remained vulnerable, as vulnerable as the day he was born. The bond with him has been established, yes, but unlike for one’s own offspring, it never develops into the next stage where he can be released and set free to live, to fly, to soar.

This brought its own grief and anxiety. Could I trust others? Fear for his well-being and awareness of his need for protection from “the system” remained ever-present.

For ten years I knew, and so did he, that he was loved and cared for to the best of my capabilities. Our capabilities, all of us.

Yes, I had failed him many times; failed to appreciate how he felt within a body that would not and could not function normally. Many times I had become impatient, embarrassed, or frustrated, and I admit this with regret and remorse. Equally, I was far from a perfect mother to my other three. Yet I, like all parents, tried my best, and I was not always the mother I wanted to be. 

Despite my failings, I believe he knew we cared. I believe, without his ever being able to verbalise it, that he cared for each of us too. His expressive face would at times light up with happiness, and these times were our reward. Communication doesn’t always need words.

The sense of loss of control was greater than I had anticipated. I had cared for Jonathan for longer than any other person, even his birth mother, and I knew him very well. I could anticipate his needs, and I could read his facial expressions. These insights would not be transmitted to other carers by virtue of explanations, verbal or written. They were the product of hard-earned experience.

I’d had full control of my decisions for his welfare and for implementing them in my own home, but now all these controls for his care and well-being were out of my reach.

Would these feelings of anxiety subside with the passage of time? Was this initial “honeymoon” period going to be the start of a happy new life for him? Could we all relax now everything was sorted?

**********

My husband had never experienced the same intensity of bond as I had, as his days had always been fully occupied with work, home maintenance, other commitments, and all the general things fathers do, so the sense of separation was less intense too.

The three children were by now young adults – Anna and Bella were both at university, and working part-time, Joe was in his final year of secondary school. On the weekends Jonathan did not visit us, the house felt … quite empty.

However, because we were all busy, it helped to fill the void that we all felt. We were all trying to look on the bright side: we’d offered him love for almost ten years and completed what we set out to do – to make a difference for one person.

**********

Jonathan’s arrival at adulthood heralds the next stage of his life … and as I pause to reflect, I now wonder if all that has happened in the past ten years has merely been a preparation for what is to follow.

*********

If his life were a theatre production, then the stage was set when he was born ... and the curtain rose; the first act was his first eight years with Sheryl his birth mother, which was followed by the second act, his nearly ten years within the care of our family. These have both been completed. The audience reflects on what has been played out, and a sigh of relief is quietly breathed.

But it’s only intermission. The curtain will rise again for the third act.

**********

This reflective interlude indicates that more is yet to come. Much more.

I myself must take a breath before continuing. I need courage and strength to proceed with his story. Who could ever have foreseen what the ensuing years would bring? Certainly, it is as well not to know what our future may hold.

From our initial days of fostering Jonathan, with all the confusion and difficulties which we had already navigated, I had become a stronger person, less idealistic perhaps … and I had become a person who would never again blindly accept in good faith what people told me, without considering first where their vested interests lay. Older and wiser ….

I was still to learn that the compassion others claim to have can be merely a cloak for achieving their own ends and purposes, and that the louder people speak of their sincerity in caring for the disabled, the more I should be wary.

Self-righteousness too is often a sign that people are very determined to get their own way, for they not only “know” their way is right, but it is of necessity the only way, in their eyes.

Smiling, caring suggestions sometimes obscure manipulation and bullying, and abuse in all its many forms. It is easy to speak the “right” words. If the motives have questionable integrity, however, the actions will soon reveal the thoughts of the heart and expose them.

Another lesson I quickly learned was that “experts” are not necessarily attuned to what is best for each individual – they have simply achieved well in an academic area, which may or may not be relevant to everyday life.

Experts are quick to point out remedies for other people’s problems – but have they ever walked in their shoes? Is this not so for society at all levels? Those who sit and govern in ivory towers far too often have little empathy for those whose lives they regulate.

**********

So, what happens next?

The curtain is about to rise for Act Three ….

Chapter 16
Unwilling spectator ...

By Wendy G

The Government had recently declared that it would put an end to all institutionalised care, for the disabled and for the mentally ill. It had not, however, been realistic in its approach to how this would best be implemented to suit the needs of clients.

Institutions were given a deadline and offered the “freedom” to work out the details themselves. There was little or no appropriate help to set up alternative accommodation or staffing structures.

**********

A year or more passed, while preparations were being made for all the clients in Jonathan’s institution to be moved into Group Homes, dotted around the neighbouring suburbs. Now that Jonathan was settled and happy in the institution, I was a bit sad that another upheaval had to happen. Everything in his new home functioned smoothly, happily, and well. It did not seem at all like an institution, and it was a happy and cheerful place. I hoped this would continue with the new system.

Changes were rapidly taking place.

Finally, Jonathan was allocated to a house. We were invited to choose furnishings for his room, which would also be freshly painted in colours of our choice. It made us feel happy to be included in such decisions. He’d have three housemates, whom he already knew, and there would be twenty-four-hour staff. He would continue to travel back and forth to his Day Program.

It sounded good.

**********

Everything always sounds good in theory. It’s whether it works out in practice.

The reality was that the devolution into group homes with its government-imposed deadline had some serious issues in finding trained staff – there were simply not enough. The disability service was desperate to find people willing to work in this area.

House parents would now do the cooking, as in other families, so the cook was no longer needed at the institution – after many years of successfully catering for these young people she was out of a job.

House parents were duly appointed to each of the homes. Most had little or no experience with complex disabilities – but were “being trained”, and they were all “very excited” to be looking after our young people. Perhaps excited to have a regular pay-packet.

Jonathan’s house parents had ready access to his full and very detailed file, mostly completed by me, and a summary page was placed on the refrigerator.

The first indication of a problem started not long after. When I picked up Jonathan for a home visit, I was told he might be hungry, or perhaps unwell, as he hadn’t eaten his dinner the previous evening. Nor had he eaten breakfast that morning. He seemed to just not be hungry, they said.

That was so unlike him. He’d always eaten well, and with great pleasure, when he lived with us. When I offered food during that weekend he ate heartily and with enjoyment, as always. He was therefore not sick. Perplexing.

Every visit there was talk of him not eating – refusing breakfast or dinner, or eating just a little. I started to become concerned and made further enquiries.

It turned out the staff ate with the clients, and the staff chose meals they thought young adults would like – pizza, steak, hamburgers and so on. In reality, they prepared meals that they themselves enjoyed.

And of course, the staff meals were free, part of the salary package to entice workers … but also of course actually being paid for by the clients’ funding packages.

Wait! Alarm bells were ringing.

Jonathan had no lip closure, and needed mouth support; he had problems with chewing. He needed his food to be finely chopped or minced, and each mouthful to be accompanied by mashed vegetables. As for a piece of steak? Impossible, unless it was very finely chopped and accompanied by mash of some kind.

Baked beans on toast? How could he manage that? Was it mashed? No. Most of it fell out of his mouth. Not pretty, no. But they had to help him – by preparing moist minced food that he could keep retained in his mouth.

That was their job! Wasn’t it? Apparently not everyone saw it that way.

There was no way he could eat those foods the staff were enjoying. He was hungry. So were several of the other young people in care. He was refusing because he could not manage to eat steak or pizza, or spaghetti ….

As for breakfast …. No, they had not been following my recommendation of Weetabix with bran and milk – which he loved.

They would definitely NOT give him that. No, they would NOT cater for his individual tastes. Did they not have FOUR to look after? They couldn’t make four breakfasts.

How hard is it to put two Weetabix in a bowl, then add two tablespoons of bran and plenty of milk?

Pointless to remind the staff that I also had had four children to look after, for years, but had managed to cater for textures he needed, and variety of food as well – and I excluded eggs.

Yes, their breakfast plan included eggs. Eggs? Had I not specified that he not be given eggs as he could not tolerate them?

Oh no, I was told, he wasn’t getting eggs as such – they were giving him omelette. I pointed out that omelette was made with eggs. Oh yes … so it was! And quiche or frittata for dinner – eggs again! Baked egg custard with peaches for dessert – eggs again!

They thought they were disguising the eggs. How little they knew him. He could tell there were eggs in his food. He might not be verbal, but he was not stupid.

I was shocked at how little they understood – and yet, it was all written down.

Oh well, they had to follow the directions from the chain of command, didn’t they? A new young dietician had set up a food preparation plan to guide all these new staff. The one from the institution was no longer employed under this new Group Home system, for some inexplicable reason.

I contacted her and asked for a copy of her meal plan. It included eggs – they were very nutritious, she explained to me. Really? I was in my forties and needed to be told that eggs were nutritious?

She, of course, was the professional, despite her youth and inexperience. I was no longer even a foster mother; I was simply the “person responsible”, whose signature was needed on various forms.

In turn I explained to her that they were not to be included in his diet. He would not eat eggs. He would simply refuse and be left to go hungry. She made the adjustments I asked for.

Many discussions were held. She agreed that my diet plan, included in Jonathan’s folder, lacked nothing. All food groups were complied with, calorie input was satisfactory, and there was plenty of variety. She even praised it.

But nothing changed. I insisted his chart on the fridge should highlight that he not be given eggs. It was highlighted – but no notice was taken of the new document. If I asked once, I asked at least a dozen times.

My very detailed diet plan, drawn up from what I had been doing for ten years, remained in the file, obviously disregarded, despite initial assurances that it would be followed because after all, I knew him best.

They kept it, of course, as proof I was “being listened to”.  It was like the best chinaware in the cabinet, to be taken out and looked at on special occasions only.

His file was not opened regularly, if at all, by the house staff. They were VERY busy, as they had four young people to look after.

I understood what it was like to be busy. I’d “been there, done that”, even while I was working at the school for severely disabled children. All the children there were fed lunch appropriately to their needs, and none ever went hungry. All my own children were fed with hearty and nutritious meals each evening. I spent my evenings preparing Jonathan’s food for the following day at school, all minced and mashed appropriately, with a texture he could manage and enjoy. Yes, I knew what it was like to be busy!

Of course, these “discussions” ranged over a period of time. I asked for Jonathan to be weighed weekly and a report sent to me. That was frequently forgotten, or perhaps they were all just “too busy”! I had numerous meetings with the staff and their superiors, as did other parents.

**********

It was finally agreed that the house parents should supply their own meals, and eat separately from the clients, and they should focus their time and attention on feeding the clients in a way they could manage – slowly, and with appropriate foods and textures.

Of course, these staff moved on as soon as they found a better job. Consistency of care was overstated and not well understood or practised.

New staff arrived and were very quickly trained for this important work. They were all “happy and excited” to look after our young people.

I could not be there all the time to see what they were doing. We now brought him home for the weekend just once a month - we all needed to make an adjustment to this new way of life. To a large extent, I had to trust … and I had to trust that when they said he was well and happy, and eating well, that was true. But what did “eating well” mean? What was their criterion? They really didn’t know him very well, despite what they thought.

I had learned to not trust what people said.

Why was everything so hard?

But of course, this was just the beginning!

Chapter 17
How low ...

By Wendy G

There is always the concern that we really do not know what is happening behind closed doors … particularly where it involves vulnerable people.

There had initially been a regular turn-over of staff, which was destabilising, as each new person had to learn all the best practice procedures for each of the clients.

However, as the next couple of years passed, Jonathan’s Day Program was varied and interesting for him and it seemed that the disability service had gathered together a group of committed staff members for the Group Homes, people who enjoyed being with Jonathan because of his happy and sociable personality. We related well with them.

Many of the Group Home workers were fine people, understood my concerns about his eating, and did their best to meet Jonathan’s needs by unofficially and surreptitiously deviating from the dietician’s plan whenever they could. They would tempt him with food from other countries, frequently their own cuisine – and were delighted at his response and obvious pleasure.

Despite the ongoing and regular pressure from the hierarchy to have Jonathan tube-fed, we continued to resist.

We visited regularly, and I continued to buy for him anything which we thought would make his life easier and more comfortable. Knowing he enjoyed music, I bought him CDs of his favourite music genres, to be played on their music system in the living areas. For one birthday he received a foot spa, so his twisted feet could be soothed and massaged by warm bubbles.

Another purchase was a comfortable Ikea chair with white fabric cushion covers for the living room. It would support him well, and he could rock in it. It would be a change from his wheelchair.

I bought him new bath towels as needed, and clothes suitable for each season – and I always bought things I thought my son Joe would choose for himself. Jonathan should always dress as well as any other young man of his age.

In short, things were settling well.

**********

When she and Jonathan were both twenty-one, Bella was getting married. We bought a fine outfit for Jonathan to wear to her wedding – a very expensive pair of trousers and two dressy shirts. One was suitable for warmer weather, and the other if the weather had turned cool, as the wedding was to be in March, our early Autumn. The weather was therefore unpredictable. We wanted him to look as good as anyone else in the wedding party.

Everything went according to plan, and he enjoyed the celebration, and he did look good!

**********

Soon after, a new staff member was introduced to me – a woman of around my age who declared she had a particular affinity for Jonathan.  She seemed to consider him as her favourite, told me that he was very special, and she had noticed his innate intelligence. I agreed with her. Because someone can’t share what they understand does not mean they don’t understand anything.

In fact, she told me another day, I myself was underestimating his ability. I was? In what way?

Well, she explained, he was far more intelligent than anyone else had perceived.

She would therefore like to initiate a little project with him – and teach him to be really independent and manage his own money. If I could just set up a little bank account for him, and transfer some money across regularly, she could teach him about numbers, help him punch in a PIN, and voilà, he would be able to do some shopping for himself, even simple things like buying an ice-cream or choosing his own clothes.

Clamorous alarm bells rang loudly. I thanked her for her “kind offer” and declined. What a nice little side income for her that would have been. Did she really imagine I was that stupid? She should have realised I understood what she was up to.

**********

Over the next few months, I rarely saw him wearing any of the new clothes I bought him for each birthday and Christmas. On visits to us he was dressed in Hawaiian style shirts, often in synthetic fabrics, or “comfortable” track pants – but they looked old.

At first, I said nothing about the shirts, thinking maybe Sheryl had brought them to him on one of her visits. When I later asked her, she said she had never taken clothes to him, knowing I still looked after all that.

One evening after one of Jonathan’s weekend visits, I took a look in his wardrobe after driving him back to his home. I was quite surprised that I couldn’t see any of his “good” clothes, the ones we had bought him for Bella’s wedding. Oh, they must be in the laundry, waiting to be washed, this new lady told me. I was a little surprised. Where had he worn them? Some special occasion that hadn’t been mentioned to me?

 Later, I asked my husband about his Ikea chair – neither of us had noticed it in the living area.

We questioned the other staff who told us the chair had been missing for a while – they believed the new lady had taken it home to make a new cover for it. A new cover? A new chair did not need a new cover! And why had we not been asked, as a courtesy, if we would in fact like her to make one, seeing as we had bought the chair?

I was incensed. Further investigation revealed that his chair had indeed been in her home for a couple of months at least, but the “new cover” had not yet been started. I challenged her about Jonathan’s wedding outfits which were not in his wardrobe. Oh yes, she had taken them home to mend. But she had been too busy ….

To mend? He had worn the trousers and one shirt just once, to Bella’s wedding, and the other shirt he had not worn at all. They did not need mending!

Her employment was terminated. She refused to give back the chair but reluctantly returned the wedding clothes. It seems she had three sons – and Jonathan’s clothes fitted them well. And all his other outfits had doubtless looked good on her sons also!

The Disability Service replaced his Ikea chair for him.

**********

The new Disability Service Group Home Management Team decided to move the clients of Jonathan’s Group Home to a more convenient one, adjacent to another Group Home. It was situated in a less hilly area, and there was a wide veranda overlooking a pleasant garden. Moreover, with the two homes side by side, they could have a nurse on duty overnight, in case of emergencies, shared between the two houses. It seemed like a reasonable plan. Yet another change of home for Jonathan!

**********

After the move, it was very clear that it wasn’t only his clothes and his chair that the woman had stolen. There didn’t seem to be any CDs or foot spa. All his special things were gone. His towels? No, he had no new ones, only old worn-out ones. I bought him some new towels, and had his name embroidered on them. She may not have been responsible for the disappearance of all these things – but someone was!

Unbelievable! No, one never knows what goes on behind closed doors, especially where it concerns the vulnerable!

No, I was not yet ready to step out of Jonathan’s life ….

Author Notes

Sometime in the intervening years the wedding clothes disappeared again, and when he moved into his third Group Home, it seems his replacement Ikea chair did not accompany him.

Chapter 18
Talking to a brick wall

By Wendy G

By now there was a new CEO. He would run this Disability Service like a business, and he would make it work efficiently and profitably. He did not want to cut financial corners for his clients, so he organised fundraising activities, which were well received.

He set up a Health Care Team which included the new dietician and other allied health professionals. The Head of the Health Care team was to oversee all her team members, as well as rotate around the Group Homes to ensure everyone remained in optimal health. She would be on call twenty-four hours a day for any emergencies.

That seemed like an efficient and effective way to run the business – and could give confidence to any former caregivers or parents, most of whom did not want much involvement. They were tired and worn out from years of caring and were happy to leave it to the experts. For most, there was little regular involvement, if any.

**********

Jonathan’s weight charts showed he was slowly losing weight.

The dietician was apparently concerned, as it did not look good that he was losing weight while in their care.

I was told that these severely disabled people aged more quickly than the normal population – perhaps he was winding down. An excuse?

He seemed to be slower at eating these days, and less interested in food. He was losing his chewing skills. His jaw was tiring. Sometimes he was vomiting after meals, and also vomiting after receiving his medications.

I knew what the problem was instantly. They were feeding him too fast. And they were repositioning him too soon after meals. He needed time for his food to settle – and this was all written in his file.

I continued to believe, and to remind the dietician, that he simply needed to be fed with sufficient help, and that he could enjoy all foods if they fed him slowly enough.

No one listened.

**********

The Disability Service took him for his annual visits to the adult specialist in disabilities at the hospital. I usually met them at the hospital so I could be present at the assessment and interview. I was listed as the “Person Responsible”.

I soon realised that this disability specialist was, not unnaturally, a friend of the paediatric specialist who had recommended, years ago, that Jonathan be tube-fed for my convenience.

She was a strong woman who did not like to be crossed. She believed in tube-feeding for all these “people with eating problems”. That was her area of specialisation – people with eating disorders. Their skills always declined as they grew older, she tartly informed me, as if I had no idea that would be so. And these people were in danger of aspiration, which would lead to aspiration pneumonia … and to death. Aspiration became the next keyword. Everything she said was based on generalisations, and while her utterances may have been true, they were also very negative.

Had he ever aspirated in the almost ten years he had lived with me? No. Had he ever had any lung problems? Never. In fact, he had never been ill at all, and had rarely had even a mild head cold.

To her, and to his Group Home, he was not an individual. He would be like all her other patients. He was a problem because he ate very slowly and yet ate a lot. At my home, he’d always eaten at least as much as my husband, and took twice the time. It had been the family joke.

Despite the quantity of food he’d always eaten at our home, he was very slight, not an ounce of fat on him. Skinny, but healthy.

My view, which she “heard”, but in fact did not hear, was that if the home staff would simply feed him what I had suggested, and in the way I had always done, the tube-feeding could wait until it was necessary. I reminded her that the dietician had been happy with every component of my feeding plan.

I also reminded her that food was always so important for him – one of his very few pleasures in life, delighting his senses of taste and smell, and appreciation of textures.

I may as well have been talking to a brick wall.

She had three weapons: his slowness at eating, his danger of aspiration, and his low weight. In my mind, all were manageable. In her mind, they were significant problems.

I asked her whether at this stage tube-feeding was a medical necessity. No, it was not.

But if it was done, she countered, one would never have to worry in the future …. He was below the weight norms for his age group, she reminded me. Yes, he was – and always had been. I reminded her that weight norms were calculated for the normal population with appropriate muscle development, not for severely disabled and spastic people, and not for people for whom the growth hormone had not been released during the years of early childhood.

Being in good health and enjoying his food seemed to me to be more important than meeting a weight norm by subjecting him to an unnecessary operation, and then force-feeding him.

What would I know? I was simply an ex-foster mother.

I sensed, with a sinking heart, that the medical profession did not really have his best interests at heart.

She wanted him tube-fed.

I would not agree to deprive Jonathan of the pleasures of real food for no good reason at that time – apart from convenience for the staff, and saving them time.  I would not sign the permission forms. Sheryl, his birth mother, agreed with me. She did not want her son tube-fed.

**********

And so the battle continued. I was perceived as a nuisance.

How much simpler life would be for the house staff if he was tube-fed and they didn’t need to worry about food plans, shopping, preparation, the slow process of feeding ….

From my experience at working with tube-fed children at his school, I knew too that once tube feeding happened, there was likely to be a significant decline in his facial muscle and jaw tone, as well as general oral health.

Of course, the disability specialist told me over and over, along with the Health Care Team, he could still eat food as well as be tube-fed. Calories and nutrition by tube, pleasure of eating as well.

We all knew that if he was tube-fed, “they” would want to pile on the calories so he would meet those elusive norms – but I also knew that if he was full or over-full, he would not accept additional food. He’d always known when to stop – when he was full. He would decline even a single teaspoon of extra food on top of a full stomach.

If he was tube-fed, there would be no control on his part over how much was pumped into him. He could not say “Enough!”

**********

I remained polite, but firm. I asked numerous times for the Group Home staff to follow my guidelines, and he would gradually put on weight. No. They had to follow the dietician’s orders, and the dietician had to follow the orders of the Head of the Health Care Team.

And the Head of the Health Care Team? She was a friend of both the disability specialists for eating disorders at the hospital. I should not have been surprised.

Furthermore, she was highly respected among her peers because she was studying for her doctorate. The subject of her thesis? The benefits of Percutaneous Endoscopic Gastronomy feeding, otherwise known as PEG feeding, also known as tube-feeding.

In addition, the Disability Service received government funding – which depended on the level of complexity of clients’ disabilities. And, as I later found out, the government funding to the Disability Service would significantly increase if he was tube-fed, (and others also) because their needs would be perceived as more complex.

Was I the only one to see a conflict of interest for the Disability Service between the personal well-being of the clients and the level of government funding they were hoping to receive?

I knew this would be a David and Goliath battle. I sensed the net closing around me.

**********

The Head of the Health Care Team and the dietician were devising another “helpful” strategy for Jonathan.

I did not trust their expertise. Too many disappointments in the “system”. Too many times let down by so-called experts.

I knew their helpful strategy would not work for him. I knew too that we were being led, or perhaps pushed, inexorably down the path towards tube-feeding….

The Disability Service policy of including and listening to the family? Only when it suited.

Possession is counted as ninety percent of the law. Jonathan was now “their” property, and “their” responsibility. Yet, they could do nothing without the signature of the Person Responsible – and that was me. They wanted to wear me down, until I just went away … or complied. Should I simply bow out and leave Jonathan to the “experts” in their field?

I too was weary from years of care, now sixteen years. Was it all too much? Was my role as a foster mother over? Officially, yes, it was. But I was still the Person Responsible for Jonathan, and despite their expertise, I still knew him better than any of them, and my priority was his well-being and happiness.

**********

What had been touted as the purpose of the Group Homes? To normalise the presence of disabled people in the community, and to promote their acceptance as people of value.

Yet what was happening behind closed doors? What was happening when specialists and business managers did not see them as individuals to be respected and valued?

They were commodities, perhaps sources of extra funding from the government.

**********

I decided to keep a copy of every email, with the requests I made, any discussion, and the action taken. Most times my emails were ignored. But I filed them away anyway.

Just as well I did ….

Chapter 19
The Accident

By Wendy G

It was a normal school day. During my lunch break, I checked my school emails … nothing of major importance. For some reason, I then went to my personal emails, which I very rarely did during school hours, and saw a new email from the disability service, in fact from the Head of the Health Care Team.

 I was instantly alert and opened it. Just a little email to inform me that Jonathan had fallen out of his bed during the night, it read. I needn’t worry – he was fine, but as a precaution they were taking him to the dental hospital nearly two hours away, later that afternoon. He was eating and drinking normally, and I had no reason for concern.

I would have thought a phone call might have been more appropriate, but I assumed therefore that the visit to the dental hospital was a precaution rather than anything major.

They sent the same email to Sheryl, who was not working that day. She decided to meet them at the Dental Hospital. They arrived with Jonathan at around five in the afternoon.

To say Sheryl was horrified is an understatement. She was aghast at what she saw.

Jonathan’s face was swollen dreadfully, his lips were three times their normal size, and pain and fear clouded his eyes. She took photographs. His face looked grotesque. She gave me copies of the photos, which I have kept – but very few people have seen them. They are too shocking and confronting.

They proceeded towards the emergency entrance, and people moved aside to let his wheelchair pass, as they could see that his need for immediate treatment was greater than theirs. Sheryl told me that people were gasping in horror at the sight of his face.

Whatever had happened? Sheryl demanded to know more detail. She could see that her son was still in shock, as well as extreme pain, more than twelve hours after his accident. There was no way Jonathan could have been eating and drinking normally. One glance at the photos and anyone could see that that would be impossible.

The official line was that a care worker had wanted to change him during the night. She’d turned away “for a few seconds” to get more linen, and he had fallen from his bed to the hard wooden floor, face down, smashing his teeth on the bedside table as he went.

This implausible story could not possibly have been true – or at least only the latter part was true! He had indeed fallen face-down and smashed his teeth.

Jonathan’s movement was extremely limited. He had to have been positioned right on the edge of the bed to fall out; for him to move from the centre of his bed to the edge would have taken him hours. It was absolutely impossible for this to happen within a few seconds or even several minutes. He just did not have that mobility.

As a safety precaution he had always had bed rails on both sides of the bed. The care worker obviously had lowered the rail on one side to change him and forgotten to put it back up. Possibly the rail had not even been up even at bedtime. Whichever was the case, the rail had to have been down for several hours.

Carelessness and neglect: the person responsible had failed to put his rail up to keep him secure.

She rang for the nurse to come from the next-door house to help her put him back into his bed, and then early the next morning she rang the Head of the Health Care Team to report the “incident”.

In response to questioning, the care worker told the Head of the Health Team that Jonathan was fine, and he was eating and drinking normally. The Head was satisfied and did not pay a visit to his home to see for herself, despite it being only a ten-minute drive from her office.

Apparently, a further phone call gave her the idea to send him to the dental hospital “to check his teeth”. By the time he arrived thirteen hours after the accident, the swelling was ghastly to look at.

Finally, he was admitted. His two front teeth were smashed up into his gums – apart from the fragments of teeth left behind on his bedroom floor. Indentations were visible on his small bedside chest of drawers.

Surgery was necessary to remove the fragments from his gums, a delicate and painful procedure.

However, all the operating theatres were either full or unavailable. He had to submit to this painful procedure in the dentist’s room – without anaesthetic.

After all, Sheryl was told, “these people” don’t feel pain like normal people do.

He was, however, given Panadol. The two-hour trip home was long and wearying.

Did the Head of the Health Care team visit him that evening? No. She took more than thirty-six hours to pay him a visit.

So … our Jonathan lost his two front teeth in the most dreadful way.

I was upset and angry. Angry that the truth was not forthcoming. Angry that no apology was offered – ever – by the worker concerned. Angry that she could get away with lies, and simply be transferred to another Group Home.

Why did she not call the Head of the Health Care Team immediately? Why was an ambulance not called in the moments after the accident happened? That was the protocol. All care workers should have known that, and so should the nurse in the neighbouring house.

But I was even angrier with the Head of the Health Care Team. Why did she herself not call for an ambulance when she heard about the accident the next morning? Why was he not taken even just to a local doctor for a check-up? How did she know he had no broken bones?

The answer was very simple. She asked questions, and they said he was fine, she assured me. How could the care workers know he was fine and that he had no broken bones without a medical check-up?

I was only an ex-foster mother, and here I was questioning the Head of the Health Care Team? She was obviously annoyed.

I remember her words very clearly. “I diagnosed over the phone that he had no broken bones!”

“Even doctors could not and would not “diagnose” that someone had no broken bones without seeing the person face to face, and doing a thorough check-over with X-rays if necessary! No doctor would dream of declaring that a person had no broken bones, by a mere phone call!” I replied. “There was absolutely no way you could possibly tell!”

Let’s just say she was not pleased with me.

“Furthermore,” I continued, “Why did you take so long to get him to the dental hospital? Why did you not at least go in the evening to check how he was?  Why did you take thirty-six hours before you could be bothered to go and see him? Your role is to be present and active in an emergency!”

We already had had disagreements about his feeding. Here I was, again challenging her authority. She would not overlook this, nor would she forget. She would get even with me.

I asked the CEO about the organisation paying for him to have false teeth or implants inserted. He assured me they would be happy to pay for any dental work …. That was the least they could do! He smiled ingratiatingly.

Was he afraid we would sue the company for negligence and failure to follow written medical protocols? We could have, and perhaps should have; there was no doubt that Jonathan would have received a tidy sum.

However, we were very aware that there were no other places for Jonathan. The majority of the hands-on staff were excellent, now that a few had been removed. It seemed we only had issues with the hierarchy, the upper echelons who were not used to being challenged.

I did not want them to punish me by punishing Jonathan. He was the one who had to live under their rule and care, and I did not want to jeopardise his placement.

Later they assured us that they had indeed checked out the possibility of dental repair work – but the dentists said that he did not have enough bone strength and calcium in his gums for implants to be possible. No one would consider it. I hope and assume that was the truth.

There was still no apology. I raised this and was curtly told, “Of course we are sorry, but accidents will unfortunately happen …”

 Yes, accidents do happen, but often they can be prevented by appropriate care ….

The following year we received his annual health report. There was a one or two-line mention of the accident involving his teeth.

And there were two other words, with no detail given. Perhaps they were hoping I would not notice. Perhaps they thought I would not understand big words.

Fractured mandible.

Broken jaw.

When he fell out of bed that night, Jonathan had not only smashed his teeth, but had also sustained a broken jaw! A diagnosis by telephone did not pick THAT up! And he was said to be eating and drinking “normally”? I don’t think so!

Those two words were never mentioned, either before or since, by the disability organisation. The health report was filed on my computer, along with all his other health reports, and all my other emails ….

It also would be important in the future.

Author Notes

This has been the hardest chapter to write so far. The photos are truly shocking.

Chapter 20
Sheryl's News

By Wendy G

Jonathan’s mouth gradually healed. However, it always upset me to see him without his two front teeth. He’d always had a cheerful smile, and of course it was no longer the same. It took some time to get used to his new appearance.

However, life continues on. The past could not be undone. Jonathan continued to enjoy his Day Program, and I was pleased that it was developing well.

He was invited to “work” one morning a week at a nearby Plant Nursery and he was helped to hose the seedlings and plants. It was a pleasurable time for him, as he loved being outside in nature surrounded by plants and trees.

A local secondary school had a program whereby art students incorporated community service into their program. They held an annual exhibition of abstract artworks, created by the disabled young people with help from the secondary school students. Their art was framed and later sold to the general public. One could also buy cards and bookmarks featuring their artwork.

It was good to see the teenagers interacting so well with their disabled counterparts. It helped them to understand the value of the person trapped within a non-functioning body, and to learn acceptance and compassion.

**********

One evening, Sheryl phoned me. It was towards the end of the year when Jonathan’s accident had occurred. We still kept in touch regularly, based on our mutual care for Jonathan, and the fact that she herself had become like part of our family.

Her news was not good. She had cancer.

She was undergoing treatment, but the prognosis was not good.

I invited her to come and live with us, but she preferred her independence, and that was understandable. She’d always been a very private person, not talkative, and found it hard to share her inner feelings, but I knew she was thankful for the offer.

Gradually her condition worsened, and we both knew she would not survive.

However, during one of our conversations, I made a commitment to her – a promise to continue to look after Jonathan’s well-being as best I could, and to always be his advocate.

Her response is forever etched in my heart.

“That’s the only way I can die in peace, knowing you are there for him, and always will be.”

*********

However, as the weeks and months passed, she made a further request.
“Please don’t let them tube-feed him!” she implored. “That would take away one of his few pleasures in life.”

It was also the only area of his life over which he had some control. He could choose to eat, or refuse to eat. If he didn't like something, or did not want it, there was no way one could convince him to eat it.

Sheryl felt very strongly about it, declaring that she would rather have him live a shorter life but be happy, than simply be kept alive by tube-feeding.

Time and again, she repeated, “I don’t want him to be tube-fed!”

**********

Her medical treatments were becoming increasingly painful, and decreasingly effective. Time was running out, yet she remained accepting and cheerful. I never heard her complain, not even once, although I am sure there were tears in the privacy of her own home. She’d never had an easy life, from start to finish.

Soon there came a surprising request. Would I be the executor of her will? And would I give the eulogy at her funeral? I was very moved; I agreed to both.

She followed this up with something else.

She had received a severance payment from her work when she could no longer continue. She wanted to use some of this money to rent an apartment at the beach where she had known happiness with Marco. This was the area where Jonathan had been conceived, where she had tried to look after him as a baby.

This was where she had taken him for walks in his stroller along the beachfront. It was where she had slowly come to the realisation that her child had cerebral palsy and was almost blind. It was the place of the highlights and lowlights of her troubled life. But it held her best memories.

She wanted the apartment for a month so she could reflect; she could walk again along the beaches and enjoy the sand, and the smell of salt water and fresh air while she was still able to do so, and she could watch the surf and hear the waves from her apartment.

Her plan was to invite her friends and family to stay overnight whenever they were free, or to visit for a few hours. It would be a time for farewelling those who cared most for her. The apartment was quite luxurious, and very modern, very different from her inner-city apartment. I was invited, as of course was Jonathan. I went when I could; it was a very long drive from where I lived. A care worker took Jonathan to see her when possible, a very long trip for him as well.

The month was drawing to a close. Would she then return to her home, with the difficulty of a staircase to her upstairs bedroom and bathroom? No, she informed me, she didn’t want to go back there.

During the final weekend of her rental, I was with her. She went into her bedroom for a quiet time and asked me to accompany her. She was no longer able to eat or drink, and simply wanted ice-cubes to relieve her thirst. We chatted quietly at times, sat in silence at other times. I prayed with her, and for her. She was thankful.

Two days later she slipped away in her sleep, just two days before the rental of the apartment for the special month expired. She did not have to return to her inner-city terrace house. She’d had only about eight months from her diagnosis till her death.

The date is easy to remember – it was our thirtieth wedding anniversary.

**********

I spoke at her funeral of our relationship and its growth and development, and of how we came, in the rarest of circumstances, to see ourselves as sisters. It was not an easy time.

However, several people approached me later to chat, saying they had been encouraged by my words, and that Sheryl had been happy to know Jonathan was in our care.

I had never been executor of a will before. It was a strange experience. Her will was not very clear or specific, but basically, once all funeral costs and other financial commitments had been paid, the rest was to go to Jonathan.

One friend immediately stated that Sheryl had promised her car to her. It was not specified in the will, but I knew she had meant a lot to Sheryl at one point, and had looked after her needs daily at the end, so she got the car.

This same “close friend” wanted Sheryl’s mobile phone. In fact, she didn’t ask for it, she simply took it for herself, and continued using it. I only realised this when the phone company’s bills headed my way, along with other mail redirected from her place. I had to take measures to cancel the service, with an accompanying death certificate. Jonathan’s inheritance, not a large sum, was not going to dwindle away because of this woman. She was not very happy with me, and I had to field several angry phone calls.

It was a distressing and stressful time, trying to clean out and dispose of her possessions from her own apartment.

Jonathan’s money was invested into a trust account for him and has never been touched. It is there for any emergency or for any special needs he may have. If it is not used, it will be donated, when the time comes, to some worthwhile charity which Sheryl would have approved of.

Meanwhile, we continue to ensure Jonathan has everything he needs for living well at his home.

**********

Jonathan now had no one but us, plus an uncle and cousins who had possibly never met him, and lived hours away from him.

Did he understand about his mother’s death? Was he grieving? Who knew? He could not verbalise his feelings, but there were times he looked downcast. What was going on within? Could he sense the change?

**********

I understand now about grief not being linear – it is not a series of stages to be worked through one by one. No, grief comes in waves, waves surging, retreating, surging again .... and sometimes with unexpected triggers.

Being busy with full-time teaching, looking after Sheryl’s will, and keeping a close eye on Jonathan probably lessened the obvious mourning at that time – but missing her  is an on-going process to deal with, even years later.

Jonathan’s care remains my responsibility. I promised Sheryl I would be there for him.

I could not know the personal cost of that commitment.

**********

And of course it was around the time of Sheryl's death that Jonathan's annual health report came, with those two hidden words "fractured mandible" hidden in small font in a mass of other health details. 

A law suit? I had neither time nor physical or emotional energy to pursue that, and no other Group Home for him to go to anyway - and the disability service knew all this too ....

Chapter 21
Yum ... not!

By Wendy G

A couple of years passed.

I had always sent Christmas cards on Jonathan’s behalf to his grandparents, although I had only met them a couple of times. They reciprocated. They were lovely people who lived in an affluent suburb about an hour and a half away from us.

Then came the Christmas when I received a card from Marco’s brother’s wife. It seemed Jonathan’s grandparents had passed away. Margaret and her husband Luca sounded like a very pleasant couple and thanked me for caring for Jonathan.

The following year Luca, a senior lawyer to a very important and wealthy businessman, said that if ever I needed anything to help with Jonathan’s care, I should let him know. I was appreciative but had no intention of asking him for anything. He didn’t know Jonathan, and had not seen him since his infancy, if he even saw him then. No interest in him had ever been shown. I thought no more about it.

**********

I was still being harassed and harangued at every opportunity about having Jonathan tube-fed.

The other way to express it? I was being bullied.

The dietician employed by the disability service, no doubt in conference and collusion with the “Eating Disorder” specialist at the hospital, had devised a new strategy to reduce the effort Jonathan needed to exert for eating and drinking.

To prevent aspiration, and to make it easier for him to manage, all his food was to be puréed, and his drinks were to be thickened.

That might have worked better if the thickener they used in his drinks had a pleasant taste, or even an acceptable taste. It did not. He could taste it even when they tried a number of disguises, and simply refused to drink. He was frequently dehydrated.

It did not seem to occur to them that a milkshake or thick shake is delicious and nutritious – and is of the required thickness. Puréed banana could also be added to a milkshake, offering more calories.

No, they added more and more thickener, making the texture so stiff that a spoon could stand up in it. It was not a drink. It was sludge. He was not getting enough fluids. When I protested, they admitted, “Oh sorry, I must have added too much thickener!”

His puréed food? Why, anything could be puréed. He could have sweet biscuits soaked in milk or cream and puréed for morning tea. Lunch could be puréed sandwiches. For his evening meal, he could have salad – puréed. It looked quite disgusting, not appetising at all. There could be no pleasure in eating this. Puréed meat and vegetables, puréed sandwiches, puréed everything. Nothing had taste, texture, or aroma.

I finally asked for Jonathan’s eating skills to be assessed by an independent observer – a dietician or speech therapist (who also was responsible for eating and swallowing disorders) not associated with the group home. They, surprisingly, were willing to oblige me in this matter – and even to pay for the speech therapist’s report.

She would come to my home and observe me feeding him the food I believed he could manage, and she would also observe me offering him drinks without the thickener. She was to watch carefully, check his swallowing ability, make a report with recommendations, and we would all agree to it and follow her directions.

However, they themselves chose the dietician – a friend of the CEO’s personal assistant. That instantly made me nervous and wary – I was expecting her to be biased towards pleasing the Health Care Team and the CEO of the disability service. However, she was a lovely lady who immediately put both Jonathan and me at ease.

He managed to eat the food at a minced texture perfectly. At one point he coughed. I was alarmed, believing she would think he was aspirating. But no. She was pleased that he had “a strong cough reflex” – which would help him not to aspirate!

Her report was sent. She agreed with me one hundred percent. He was capable of eating food of moist minced texture and was able to manage only slightly thickened drinks. He did NOT need puréed food, nor very thick drinks, the “helpful strategy” the disability service was offering him. Such were her recommendations.

Suffice it to say that her report was not well received; she was never again invited to give her professional opinion.  However, they had promised to honour her report and implement moist minced food.

The promise was not kept.

First of all, there was failure to chart the new régime for several months, so it could not be implemented by the house staff, and then within a few months the “official” Dietician/ Speech Therapist started charting the puréed foods and thickened drinks again, and thus surreptitiously dismissed all the independent dietician’s recommendations.

We knew what was happening, firstly because the care workers told us, and secondly, we could see the dated instruction charts on the fridge. The care workers within the house were obliged to follow the chart – but they were not happy about it either. Their voices were heard as little as ours, when they tried to advocate for Jonathan. They were at the lowest point of the hierarchy of importance.

The Health Care Team later insisted that they had followed the report of the independent dietician for three years, however, dated copies of their directions to staff indicated otherwise – and we visited Jonathan frequently enough to take photos of the fridge charts which always had the date on them. These too were all filed.

At the end of the year following the independent speech therapist’s report, when the Health Care Team were declaring they were following the recommendations of the independent report, we went to a Christmas party at his Day Program centre.

All the young people had been brought from their homes for the special occasion, with all the invited families and friends. The spread was tantalising, and very generous. A beautiful smorgasbord was set out, and the aromas were delicious, delighting all the guests.

But the young disabled people had to eat food they could manage.

Jonathan’s plate of food was brought out and placed before him. Three scoops of food were on his plate. One was brown, the next was yellow-orange and the third was green. It looked revolting, and nearly made me sick to look at.

The brown was meat puréed with a lot of gravy, the orange was puréed pumpkin and/or carrots, the green was puréed beans or  peas - or some other green vegetables. Three mounds of what I can only describe as slop. It was very distressing. The Health Care Team had lied to us about following the independent observer’s recommendations.

Needless to say, Jonathan ate very little Christmas food.

I was upset, disappointed, frustrated … and annoyed with the power plays these people were engaged in.

This was his life. Food had been his greatest pleasure - it was the only area of personal autonomy he had. And that plate of three scoops … was what he had to eat every day!

I could not trust a word these people in authority said.

Not a happy Christmas!

For how much longer would we continue to be facing these issues? 

Author Notes

This was the nearest photo I could find. Jonathan's food was brown, orange and green, each like an ice-cream scoop in size, and very soft texture. He used to eat almost twice that amount as well, when he was growing up in my home.

Chapter 22
Between a rock and a hard place

By Wendy G

Jonathan could still manage moist minced food, and he managed well every time he came to spend a weekend with us. Within my home I was free to do what I considered best – and I was happy to take the consequences.

The dietician had decreed food must be puréed, and she was under the Head of the Health Care Team …. His feeding regime was being manipulated for their purposes, which included increased government funding if he was tube-fed. It was also easier and quicker for the staff at the home. The care workers had to follow what was charted.

And the weight charts? We did not receive them regularly – but when we did, we noticed a significant decrease in his weight once he was put onto puréed foods. We were not surprised.

**********

And then of course, the following year, it happened – what I had dreaded most.

He became ill. Very ill – and being non-verbal he had no way to explain his pain or discomfort.

Initially, the doctors at the nearby small country hospital could not determine a diagnosis. To prevent possible complications, and doubtless “to prevent aspiration”, he was not fed. He was simply placed on a glucose drip for around ten days or more. He had no fat to lose, and of course he lost weight.

One day, while we were visiting, he had the worst epileptic seizure we had ever seen – probably because his epilepsy medications were also on hold.

He seemed to be dying, and I just automatically cried out “NO!” He was critically ill.

I was not ready for him to die. An emergency response team quickly arrived and treated him. He had another bad seizure that evening. But he held on. He was tough. Even as a child, he had always been strong, despite the extensive list of his disabilities. The other children were susceptible to seasonal illnesses, but he very rarely succumbed to anything.

Finally, the medical team inserted a nasogastric tube in order to feed him and build him up. He hated it, and with his good arm, his left one, he succeeded in pulling it out time after time. And each time they reinserted it, they had to do an X-ray to check it was positioned correctly. It became a battle of wills.

Eventually he was found to have a cyst on one lung, so they gave strong antibiotics to shrink it, and that treatment was effective.

I approached the doctor, and asked him directly, “Is this cyst the result of aspiration?”

His response was that aspiration as a cause was extremely unlikely, based on the position of the cyst on his lung. However, that was not sufficient for the Head of the Health Care Team.

“He must have aspirated,” she declared vehemently. She had always been very confident of her own abilities to diagnose, even though she was not a doctor. We’d already experienced her diagnostic skills – by a phone call – when Jonathan fell out of his bed, because the bed rail was not raised. She had not diagnosed his broken jaw!

During the three weeks Jonathan was hospitalised, she organised a couple of meetings with the CEO and us.

Yet again the benefits of tube feeding were expounded, yet again we were informed of the necessity of having him tube-fed to build up his weight, and to avoid aspiration. It was a very simple and straightforward procedure, I was assured.

Their “purée everything” strategy had made it so that he couldn’t or wouldn’t eat – and they would get their way. They were determined. Another battle of wills.

By this time, I had reached the inevitable conclusion that despite what the doctor at the hospital had said about the cyst being unrelated to aspiration, despite my informing them several times of Sheryl’s dying wishes, despite my literally begging them to feed him nutritious food presented in a way he would enjoy and eat, if they were patient and gave him sufficient time … despite everything, I had lost the battle.

Jonathan who had loved food, and had always eaten as much as, or more than, my husband, Jonathan who loved international cuisine … Jonathan would die unless something changed, because he was no longer willing to eat and drink. And the less he ate and drank, the weaker he became and the worse his muscle tone and jaw strength were becoming.

Which was cause, and which was effect?

My husband and I finally agreed with each other to accept that he would need to be tube-fed.

I heard Sheryl’s voice pleading with me to not let tube-feeding happen – how could I forget her words? I felt that I had failed her, had not fulfilled her deathbed wish. More than that, I felt I would be failing Jonathan.

Before I had time to let them know we would give consent to the tube-feeding operation to change his life, they had just a few more things to say.

“If you don’t agree, we will hold you legally responsible for his death,” smirked the CEO.

The best form of defence is said to be to attack the other person. They perhaps were aware that they were responsible for his choosing to eat and drink minimal amounts. They did not want to be held responsible if anything should happen to him – and perhaps they were starting to realise the folly of their ways. So … they attacked and with a vengeance ….

It was impossible for them to admit that their own procedures had turned Jonathan off eating and drinking, and it was impossible for them to acknowledge that an extended period without food in the hospital had put him at further risk.

It was all on my shoulders. I would be responsible for his death. As if it was not stressful enough to see him so ill, in a small hospital an hour and a half away, they chose that time to attack.

I would be held legally responsible for Jonathan’s death! After caring for him for so many years, (twenty-two years to be precise) both in my home and in advocating and standing up for him in this place, his death would be my fault.

“Furthermore,” he continued smugly, “as you don’t seem to be willing to comply and submit to what we say, perhaps we should rethink Jonathan’s placement with our company!”

They were prepared to kick him out.

**********

Is it love to keep a person alive but unable to have any control over his own body? Food was really the only area where he could exercise control – he could choose to eat or not eat, and he made his preferences for different foods very clear. No one was ever in any doubt as to whether he enjoyed a food offering! No one was in doubt that he hated puréed food.

Would it have been more loving to let him die? But could I just let him choose to not eat or drink until he got so weak that he died?

Was I just too concerned about my own self, and fearful about the outcome of my legal responsibility in causing his death?

And yet, how could I just let him die? I cared about him. We all did. When the crisis came, I could not deny him the opportunity to live, simply because I knew I was right. At what point can one say for someone else, “Let him die”, if there are ways to treat the problem? Even if those ways are not desirable ….

I did not believe the tube-feeding was inevitable – it should not have had to happen. It was a failure of the system to acknowledge him as an individual and to respect and cater for his personal needs.

Multiple factors had led to this, but it was too late now. They, and their protocols, would not change, and Jonathan was no longer interested in eating and drinking what they offered. He would continue to lose weight, and he now had no reserves of strength.

I consented for the operation to have Jonathan tube-fed.

**********

If I didn’t give permission for tube-feeding, he would continue to refuse to eat, or to vomit back up the slop they gave him and probably aspirate on that, and he would become ill again – and he would die.

And if he didn’t die, they would refuse him a placement. Where else could he go?

We were caught between a rock and a hard place. I had prolonged the inevitable by many years, around nineteen years since it was first suggested “for my convenience”, but now, finally, it was a medical necessity.

I signed the permission papers with a very heavy heart, plagued by guilt and an overwhelming sense of failure.

Surgery was scheduled for as soon as he was well enough.

I could not fight the system any longer.

The triumphant look on the faces of the CEO and his Health Care Team sickened me.

To this day I wonder if I made the right decision.

Chapter 23
That important phone call

By Wendy G

Jonathan left that hospital after three weeks, without a proper health care plan – a failure on the part of the hospital personnel. The hospital social worker had considered this an important, even necessary, step, and wanted all parties to be present, but somehow the disability service organised for his discharge more quickly than anticipated, because there were bushfires in the area, and they wanted him safely home. The hospital workers did not have time to gather all parties together for a case conference to draw up a health care plan.

There was no communication with me – even though I was the Person Responsible – about plans for his expedited discharge, nor for his immediate and ongoing feeding needs, although the disability service surreptitiously provided input to the hospital, from at least three staff members. Yet I, as the Person Responsible, was not present.

Their views were, of course, reflected in the quickly documented hospital discharge papers. In brief, they told the hospital clerk what to say. They then could justify their actions on the basis that “the hospital document said ….” I was appalled at their duplicity.

**********

The plan was that Jonathan’s percutaneous endoscopic gastrostomy (PEG) operation to insert a feeding tube directly into his stomach would be performed in a different, major hospital– it was to be scheduled for as soon as he had recovered sufficiently from the cyst.

It was now urgent that he put on weight. He was thin, and very weak.

The procedure was a straightforward one, and he would go home that same evening. This hospital’s medical staff would work out a tube-feeding regimen which would provide the calories he needed – and a little extra so he could gain a few kilograms.

 **********

Shortly before that happened there would be a life-changing phone call to me – from one of the excellent care workers at his home. Luke had been aware of the ongoing conflict between us and the senior management – and he believed in what I was doing and saying. Despite working there, he did not trust his superiors.

Luke was shocked himself at what he had found out and wanted me to be aware of what was brewing. He knew I would need time to prepare myself.

Had I heard what the CEO was planning? Well, no …. They were never good at communicating, and certainly not something like the bombshell which followed.

Luke continued by telling me that the disability service was planning to take me to the Guardianship Tribunal, and that they wanted a court order to make themselves Jonathan’s legal guardians. This had significantly more legal authority than simply being the Person Responsible.

They would then have full control over everything in Jonathan’s life – and I would no longer even be the Person Responsible, and we would quite possibly be banned from having any further contact with Jonathan.

I was horrified. Shocked, yet again, by this … how could they do this? And why?

We had already agreed to allow him to be tube-fed. Why this extra, and cruel, harassment? The CEO was very vindictive.

Luke said that we had better prepare whatever documentation we could. No problem. We had plenty.

This would be the show-down.

By this time, we had thirteen years’ worth of documentation, and I was prepared to show and tell. I would expose everything.

 I had emails, notes from meetings, transcripts from phone calls, and the incriminating photos of Jonathan after his “accident” while in their care, medical and health reports. It would be a mammoth job to collate it all.

Legally, the disability service was required to notify us of their intention to take us to this important legal Tribunal. They did not, either verbally or in writing.

Another phone call from Luke was even more shocking. The CEO himself was a board member of the Guardianship Tribunal! He, of course, knew all the other board members.

He would not hear the case himself, because that would be a conflict of interest. The disability service would be represented instead by his personal assistant. Presumably, that would not be a conflict of interest!

My heart sank. How corrupt. He would feed her the information, tell her what to say … and he doubtless knew everyone who would be judging our situation! I was very anxious.

That’s where my level-headed husband, who stands no nonsense, would become very useful. He has an excellent memory for details and would not hesitate to speak up if necessary, on my behalf. He can think on the spot and is quick to notice discrepancies between fact and fiction.

Our eldest daughter Anna, who had recently married, was an astute businesswoman with a very clear head. She had always been a born organiser, and in such situations as this she was an excellent ally. This was her forté, and she thrived on a challenge. She was not daunted by bullies – at school she had overcome the bullies, as she reminded me.

I forwarded all my emails, and reports to her, and she organised and presented them all in dated and classified tables.

Notably missing were responses and actions from the disability organisation. Equally conspicuous was the number of times I had asked for, but not received, information from the disability organisation about Jonathan’s well-being, general health, and weight.

Notes of meetings showing inconsistencies and discrepancies between what they were saying and what they were doing were highlighted.

The photos of his face after the accident were included, along with the inappropriate responses of the staff from the care worker responsible, the nurse, the Head of the Health Care Team, through to the CEO himself, and the fact of the broken jaw, never admitted to or apologised for, just swept under the carpet.

Anna’s binder, almost ten centimetres thick (around four inches) was a damning indictment of their care, or lack of care, over the years, as well as of a disturbing lack of transparency in all decision-making.

There was a final master stroke. I wrote to Jonathan’s lawyer uncle asking simply for a letter of reference as to our care for Jonathan over the previous twenty-two years. He had offered to help if we ever needed anything for Jonathan’s care. He was thinking of financial assistance. All I asked from him was a letter.

His legal standing as a respected Queen’s Counsel far outweighed that of the Guardianship Tribunal. He wrote a kind and honest letter about the consistency of our care and love for Jonathan during this time, adding that he had full confidence in us and the decisions we had made on Jonathan’s behalf.

The disability service had still not mentioned their intent to us, but at least we were not taken by surprise when we received a communication from the Guardianship Tribunal, notifying us of the date and time of the proceedings, and asking us to submit any reading material for their perusal a fortnight in advance.

 A few days before this deadline, we received an envelope from the disability service – weight charts and other health information covering the previous ten years. This bundle was included in Anna’s file, with the date received highlighted.

We were ready.

I asked Anna to accompany us on the day. We had our copy of the massive file she had prepared – and it was impressive. It was logical and ordered; important facts could be easily located. It had an index, and was presented in sections with tabs, so we, and they, could refer to any information very quickly. The three of us prayed together quietly before we were summonsed.

**********

The personal assistant of the CEO of the disability service walked in. She was carrying a thin folder with just a few pages.

The waiting was awkward, but finally the panel gathered and took their places. We were about to begin. I felt ill with nerves and trepidation. Anna took my shaking hand.

Each panel member introduced himself or herself, and from the outset it was clear that each one had read our file, and their insightful and probing questions testified to their understanding of the matters to be discussed.

Questions were addressed to each of us. The CEO’s personal assistant was asked directly if the organisation had followed its legal obligation in advising us of their intent to bring the matter before the tribunal.

“Yes!” she declared.

The Guardianship Tribunal noted that we had stated that we had never been officially advised of their intent, either in writing or verbally.

“Oh … er. Well, maybe we didn’t … I’m not sure,” she stuttered.

The panel member smiled slightly.

At one point the personal assistant must have felt that she was losing her case for she suddenly turned to me and said quite nastily, “Anyway, no one likes you!”

Shock must have been evident on my face, because I related very well to all the present and recent hands-on caregivers, and it was one of them, Luke, who had forewarned me of their plan to grasp guardianship of Jonathan.

It was probably true that the CEO, his personal assistant, and the Head of the Health Care Team did not like me – and the feeling was mutual. They had never shown integrity in any matters related to us.

I need not have worried. The head person on the Guardianship Tribunal Board said sharply that that remark was unnecessary, uncalled for, and most likely untrue … and unrelated to the case in hand. It was to be withdrawn, and not recorded in the notes of the meeting.

Shortly after, they withdrew to discuss the case and come to a verdict.

Chapter 24
The good, the bad, and the sad

By Wendy G

We were asked to wait in an adjoining room while the Guardianship Tribunal panel discussed our case. I had no idea which way it would go. The panel always consists of a lawyer, a professional person who has experience of the treatment of people with a disability, and a community member who has personal experience of living with a disability.

The CEO of the disability service would have fallen into the second category of Guardianship Tribunal panel members. He would doubtless have known the other professionals in this category, and almost certainly the lawyers as well.

Would that prejudice the outcome? Was this Guardianship Tribunal trustworthy? I had no idea.

The panel members seemed to be perceptive and astute, and they had read all the details of neglect and cover-up, along with the bullying letters, that had been occurring for years. Would our words hold enough weight?

The disability service had little to support their case except that I was "not responsible", in delaying needed approval for tube-feeding, and that “such people as Jonathan usually aspirated and died because of swallowing difficulties.” They would have emphasized that Jonathan was very thin, with diminishing desire to eat and drink – not surprisingly, in my opinion, considering what he was offered.

We were finally recalled.

The lawyer, who chaired the panel, gave a summary of their understanding of the matters, and discussed several issues related to the information they had been given. He noted particularly that there had been very poor communication, which had to be rectified immediately.

He continued further, announcing their decision.

Guardianship of Jonathan in all matters related to his health, medical treatments, and well-being was awarded to … ME!

I was to be his primary Legal Guardian. My husband was to be joint guardian.

We had won! Being Jonathan’s Legal Guardian carried far more weight than simply being the Person Responsible. And he had TWO Legal Guardians … just in case.

I had the final say in all decisions about his health, medical treatments, and well-being.

However, I had already agreed to an operation for a PEG tube to feed him as it was now an imperative. He asked if I was still willing for that to go ahead.

I was. It was now a medical necessity.

The position of Legal Guardian was to be valid for six months only, when it would be reviewed. We would have to go through all this again.

The personal assistant left hurriedly without a word.

Had the letter from Jonathan’s uncle Luca made a difference? It had not been mentioned in their summing up. Nor had it been referred to during the proceedings. But the Guardianship Tribunal panel had at least read it. It was evidence that a well-respected member of the legal community had faith in me and my care for Jonathan.

Perhaps the letter had not made any difference, but that was nevertheless the gift from Jonathan’s uncle. His father’s family respected what I did, and what I had done for many years. That token of support was very meaningful to me.

**********

At a subsequent meeting with the CEO, he smilingly suggested to me that the Person Responsible had the same rights and authority as a Legal Guardian – I could let guardianship lapse so it would not be necessary for us to renew our legal guardianship of Jonathan in six months’ time.

To make things easy, I could simply revert to being the Person Responsible and save all the time and effort of having to reappear before the Guardianship Tribunal.

Very strange! Being a Person Responsible had had no power or importance previously. The only requirement seemed to be to sign the documents which needed signing! Input was not welcomed, apart from for Jonathan’s Day Program which was managed by a very competent lady.

Who did he think he was kidding? Did he take me for a fool?

I now had the full authority of the law behind me, and I would keep it.

His hands were now tied, and he knew it. He had initiated the process, not me. But retrospectively, I was glad.

His plan had backfired. He was on notice, and their disability service had had a lot of incriminating evidence showing them up. They would have to be very careful. In my opinion, they had a lot to answer for.

I wondered what his standing as a panel member of the Guardianship Tribunal was, now that he had been exposed in his role as the CEO of an organisation rife with problems, cover-ups, systematic bullying at the top levels, and lack of transparency.

**********

Meanwhile Jonathan’s percutaneous gastrostomy operation (PEG) operation was my next concern. He would be tube-fed from now on.

The surgery was to be carried out a couple of weeks after the Guardianship Tribunal hearing, in mid-October 2013.

The procedure was completed with no complications – until that afternoon, when he was to be driven home.

It was mid-spring and worrying bushfires had again broken out in the area between the major hospital and his home.

Within a very short time frame, the fires had gone wild and out of control, and high fuel loads, combined with hot, gusty, dry winds turned the normal day into a time of extreme danger, soon developing into a state of emergency. Everyone was listening anxiously to half-hourly news reports, each worse than the preceding one.

Schools had been considering whether to send students home early or whether it was safer to keep them at school. Some schools underwent emergency evacuations, and radio stations kept parents informed as to the whereabouts of their children, and if and when it would be safe to collect them. Evacuation centres were being set up.

After school on this terrible and frightening day, I visited him in the hospital. He was still under the influence of the anaesthetic and pain medication. But where was the van to take him back to his Group Home, an hour’s drive away?

I asked if Jonathan could remain in the hospital overnight because of the fires raging between the hospital and his home, but no, the hospital wanted him discharged so that every possible bed was available for emergencies from the fires.

The van to collect him was delayed by nearly two hours. He had been given pain medication after the surgery, but by the time the van arrived, it was starting to wear off. I asked whether he could have more pain medication, but no – he could have the medication only four-hourly, so they would not give him a subsequent dose. 

The main road to his home, sixty kilometres away, was closed to all but emergency vehicles – fire engines, ambulances, and police cars – but after explaining his situation, the driver was given approval to take him home.

Unfortunately, he had to keep pulling over to allow these emergency vehicles through. At times, the road was blocked by fires leaping across the highway.

The impact on Jonathan was significant. It was a nightmare for the driver, and much worse for Jonathan who was in terrible pain, distressed, and biting his left upper arm, something he had not done for years. That one-hour trip took four hours, and the pain he was enduring was unbearable.

I was very upset to learn of this. Why did this young man have to put up with so much?

The fires continued to spread, despite water-bombing with helicopters and round-the-clock work by all the ground crews. In the next few days, the Group Homes were evacuated, and the clients were taken to the Day Program Centre for a couple of nights. Fortunately, the house parents and care-workers were responsible and caring, and well-trained for such an emergency, and the evacuation of many non-mobile and non-verbal clients proceeded smoothly. The staff were wonderful and reassuring to their young clients.

*********

The dietician/speech therapist was trying to work out a tube-feeding regime for Jonathan. It was not easy, as the rate of feeding had to be very slow until his body adjusted to it. If they gave too much of the food formula, or if the flow was too fast, he was ill. That of course also affected the efficacy of his medications. I questioned them about the chance of his aspirating during such episodes.

“Oh yes,” the dietician replied, “tube feeding does not eliminate the possibility of aspiration, but hopefully it will reduce the chance of it  ….”

Not what the Head of the Health Care Team had told us! She was doing her doctorate on Percutaneous Endoscopic Gastrostomy (PEG) tube feeding, so she must have known this. But for her, PEG feeding was the ultimate solution to everything. Risks were either not mentioned or brushed over, spoken of just in passing, with emphasis on the positives of the tube-feeding method.

It took months for them to sort out such things. In the end he was basically tube-fed almost around the clock. He needed a very slow flowrate.

What about their promise to allow him to eat small quantities of normal food for the pleasure of eating, and for taste? And for maintaining his jaw strength? When he was ready, I was told ….

I asked them to allow half an hour without the liquid nutrition, which afforded a small window of time for him to get “hungry” enough to sample normal food.  I also insisted that they not pump more liquid into him for at least half an hour after eating normal food, so that he could digest it.

But that also meant a shortened time for tube-feeding, and therefore he wasn’t getting enough liquid nutrition to meet his daily quota. Offering him food at that point sometimes worked, and he would eat a little, most times not. Otherwise, the inevitable happened.

So, my suggestions were not readily accepted. I was not a medical person, after all!

The reality was as I had predicted. He was so full of the liquid nutrition that he was not hungry enough to eat anything else.

He had no control over what was pumped into him and was subjected to their push for him to reach their weight goals. They recorded his weight increases, and proudly sent them to me at irregular intervals. Improved communication!

Nobody would call it force-feeding, of course, but that’s what it was.

Ticking that weight-goal box for population norms was their highest priority.

Author Notes

Tube feeding: https://www.independenceaustralia.com.au/nutrition PEG (Percutaneous Endoscopic Gastrostomy) is a medical procedure carried out to insert a tube into the stomach - it means one can receive food, fluids, or medication directly into the stomach (also known as enteral feeding) instead of through the mouth. Special nutritional products are used for PEG feeding. These are formulated to contain carbohydrates, protein, fats, and micronutrients. Typically, there is a nutritional assessment to determine nutritional requirements because everyone's needs differ. Healthcare providers can offer information on how to care for the PEG tube and how to access more information and support. A PEG feeding tube may be needed for swallowing problems (dysphagia). A PEG tube is a more comfortable and discreet alternative (it can be hidden under clothes) to a tube that goes from the nose to the stomach (nasogastric tube). The fires: The 2013 New South Wales bushfires swept everywhere across the state. At the peak of the fires, on the morning of 18 October, over 100 fires were burning and a state of emergency was declared on 20 October. The fires were the worst since the 1960s, although they were later dwarfed by the 2019-2020 Australian bushfires.

Chapter 25
Getting better ....

By Wendy G

Just a few months after his PEG-feed operation, I received another phone call from Luke.

Had the Health Team advised me that Jonathan had an infection around his stoma site – the place where the tube enters the stomach?

I answered in the affirmative. Communication had perhaps improved – they had mentioned briefly that they were treating some redness on his belly ….

“Did they tell you what the infection is?” he queried.

No, they hadn’t. It seems the communication still had not improved sufficiently for them to tell me all things honestly, as the Guardianship Tribunal had declared necessary.

“It is a Golden Staph infection, otherwise known as MRSA (Methicillin-resistant Staphylococcus aureus), a type of bacteria which has become resistant to most of the antibiotics used to treat ordinary Staph infections.”

I was aghast. I knew this was very hard to get rid of, and it could be fatal. The fatality rate is around thirty percent.

Fortunately, it eventually healed – after several weeks, but as this infection can lie dormant within the body, I knew I would have to be alert in the future.

I later found out that another client had died a short time earlier from the same issue; his death was within a few months of becoming tube-fed.

I received one last phone call from Luke. His employment had been terminated – for some unexplained reason he had been made redundant. He was moving interstate. It didn’t take much for me to put two and two together and come up with the right answer.

**********

Six months later, we reappeared before the Guardianship Tribunal, a different panel this time. We were able to agree that communication was better than before. It was still not great, in my opinion, but I was trying to be positive, not wishing to be perceived as a complainer. The CEO’s personal assistant was asked if they wished to challenge my guardianship.

No, they did not.

The guardianship was extended – for three years.

**********

Disability Staff were trained in all the tube-feeding procedures, and so was I.

It was essential that the pump rate was slow. Cutting corners or going too fast with the syringes of medications and water flushes could still prove fatal. He could be sick, aspirate, and die. Even with tube-feeding.

He had lost so much muscle tone in his jaw and mouth that oral feeding was now rarely successful. He had been deprived of one of his few pleasures – the sensory experience of tasting and eating normal food.

**********

During these next three years, the Head of the Health Care Team left; I am not certain about when or why, as we were not informed. So … no, the communication was still not great!

However, the new Head was approachable and kept us well informed as to Jonathan’s well-being.

The following time we went for a guardianship review, the CEO’s personal assistant failed to appear. The Tribunal made some calls to the disability service. It seems that she had forgotten all about it; she had gone interstate on a training course.

The Guardianship Tribunal panel was not impressed: the chairman of the panel asked me if there was anyone else who could speak to them. I suggested the new Head of the Health Care Team, even though I didn’t know her very well, and told him so.

Nevertheless, he phoned her and put her on speaker phone, asking her, totally unprepared, about our involvement with Jonathan, whether communication was satisfactory, and whether I was making good decisions about his health and well-being.

Impromptu, and not knowing that we could hear every word along with the full Tribunal panel, she gave a glowing report about each aspect, and said she held us in high esteem. Neither she nor any of the care workers had any issues or complaints whatsoever.

It was a lovely moment of affirmation, and I was deeply moved.

Guardianship was extended to five years, and it would be simply a rubber stamp of approval for us to continue indefinitely to be Jonathan’s guardians.

**********

Jonathan certainly put on weight once he was tube-fed – there was no other option. He looked less gaunt, and even developed a little double chin.

However, I could no longer lift him out of his wheelchair when he visited. His spasticity and rigidity, combined with the extra kilograms, made lifting almost impossible even for two of us.

We could therefore not host him for a weekend – it had to be day visits, as he needed regular changes of positioning, and we did not have the equipment necessary. At his home they had hoists and shower baths which could be raised and lowered.

Nor could he go out anywhere for a whole day unless there were sterile conditions for administering his feed, and for the syringes of medications and water flushes through the tube. None of these social complications had been communicated previously.

**********

Around this time, the CEO of the disability service left; the reason given was that he needed to look after his ailing wife. I have often wondered if he is still a member of the board of the Guardianship Tribunal. His personal assistant also left at around the same time.

They had all gone! I did not miss their leadership in the least. The stormy waves of sixteen turbulent years of Jonathan being in their care were subsiding.

There was a welcome period of calm. After the challenges we had faced with that manipulative, deceitful, and bullying team in charge, we were relatively happy that things seemed to have settled. Finally.

By now we had reached twenty-six years of caring for him, in one role or another.

**********

There were now capable people involved in his Group Home; Jonathan always enjoyed his Day Program as well, which had an excellent Program Team Leader who had worked with him since his initial arrival at the institution many years previously.

She cared deeply for each of her clients, and she was very professional, highly respected by all who knew her; she was a thoughtful and creative person, designing activities which were interesting and suited to individual needs and skills. She maximised communication with the help of technology where possible.

We had always related well with her, and every year she invited input from us with planning for his individual program.

*********

A vacancy became available in a Group Home significantly nearer to us, only twenty minutes’ away rather than an hour, and the staff in that home was apparently stable and caring … we were asked to consider whether Jonathan should move there.

He would still travel to his Day Program at the centre. Jonathan continued to enjoy car travel, so we knew that he would be happy to have a forty-minute car ride twice a day, five days a week, and we could much more easily visit him at weekends.

Furthermore, there were two Group Homes side by side, and they shared a nurse on staff. Everything seemed good. Perhaps the worst was over, and we could finally relax about his care.

They brought his things to his new home. Sometime in the intervening years the expensive clothes we’d bought for him to wear to Bella’s wedding had disappeared again ….

In the big scheme of things, it didn’t matter. People always mattered more than things.

Jonathan already knew these housemates, and he settled in quickly.

Author Notes

I am gradually compiling these stories about Jonathan into a book in my portfolio, called Jonathan's Story. The first two stories give all the background to how we came to be looking after him, ("Sheryl's story" and "Jonathan"), but very briefly we fostered him as a child and then through a series of unfortunate circumstances I became his legal guardian after his parents' deaths.

Chapter 26
Fast forward ...

By Wendy G

A couple of years passed smoothly, a welcome respite. Jonathan continued to be well, he was putting on weight, and he enjoyed his Day Program. Life was good. We saw him regularly, and he was happy.

**********

It wasn’t too long after that when Covid struck. Very strict rules about visitors, and health and safety precautions, were imposed. We accepted this, as a nearby nursing home for elderly people had been caught unawares in the early stages of Covid, and there were many deaths, initiating a government inquiry into the efficacy of their procedures.

With this new team at the top level, things started to become rocky again. Not for us, but within their ranks. Discontent with decisions made at the top level, power plays, upheavals in staffing, discontent … human nature expresses its ugliness in most places.

We were, for a short period of time, blissfully unaware.

The disability service’s rigid Covid procedures were divisive, particularly amongst the staff. Changes were happening. There were rumblings amongst the staff and some families.

Very strict rules about visitors, and health and safety precautions, were in place.

Jonathan and the other clients were all very vulnerable. Their complex disabilities made their immune systems weaker, and they were exposed to many different staff members as the shifts rotated. Interestingly, all eight clients in the two Group Homes were tube-fed. How many others had been badgered into this, for the convenience of care givers, I wondered?

For the most part, the staff and clients kept safe in the early Covid years, but as restrictions then eased, several staff and some clients became ill with Covid. All were looked after well, and there were no fatalities.

**********

We were not permitted to bring Jonathan home for visits; the preference was for families to visit the home, have a Covid test before entering as well as sanitize, have a temperature check, and wear masks. We cooperated with all their requests. But visits were therefore short and infrequent, not easy, and felt unnatural. We were meeting a number of new staff members; they seemed to be caring people.

Jonathan, fortunately, remained free from Covid.

Restrictions gradually eased, and home visits resumed.

***********

Towards the end of 2023 my husband and I did an interstate road trip of 2,500 kilometres, visiting family and friends. On our return journey, we were within an hour of reaching home after a long and tiring day of driving when I received a phone call.

Jonathan was sick. He had just started to look unwell the previous day, so the Group Home staff were pleased that the medical problem would be resolved quickly with appropriate treatment. They felt they had caught it early, as soon as he was showing symptoms.

The ambulance would be arriving any minute, I was told. Ambulance? Was he sick enough to be admitted to hospital? Where was the nurse? We had previously been told that the two neighbouring Group Homes shared nursing staff, seven days a week. Oh, she was at the other Group Homes, an hour’s drive away. The ambulance would get to Jonathan more quickly.

It seems that a certain amount of quiet cost-cutting had been happening over the previous years. One casualty was the number of nurses, their time on duty, and where they were located. The nurse was now at these two Group Homes only two days a week, and only between 9 am and 5 pm, and at the other Group Homes the other three days. No nurse on the weekend.

One must not get sick at other times, and definitely not on weekends! The nurse we had always spoken to by phone was no longer there at all.

 No, of course we had not been told of these “little” changes …. I started to experience some disquieting episodes of déjà-vu.

One of the ways Jonathan signalled he was unwell was refusal to eat. Now that he was tube-fed, that could no longer be an indication. He rarely showed signs of discomfort, and he had a high threshold for pain. After all, he had probably never known a day free from pain in his entire life. Pain was his norm. But he seemed very listless and had a fever, they told me.

Jonathan would have a care worker from the Group Home with him at the hospital, to speak for him in the Emergency Department and to accompany him to a ward as soon as they knew which ward he would be admitted to. She would stay overnight and let us know the following morning. I let our three children know of his illness.

The following day we were notified that he was in the respiratory ward, and we hastened to visit him.

And so began weeks of daily visits as he hovered for much of that time between life and death. A dreadful time of tears, of seeing him in pain, of advocating for him, of meetings with doctors and specialists, of seeing their uncertainty about his outcome, of fearing that this was his time ….

**********

Despite being in the hospital for several hours a day I never saw a doctor with him, nor could I locate one to speak with, during that first week. Yet I had three (or perhaps four) very short phone calls, each one asking the same question, but by a different doctor: what was his advance care plan?

In other words, they wanted to know if he was to be allowed to die, receiving no medical attention, and just be “made comfortable”, or whether, if a crisis came, we wanted him to be resuscitated. The message, both spoken and unspoken, was that disabled people did not have a normal life span. Someone had told us that lack of an advance care plan in an emergency often meant that the doctors made the important decision, not by any precise action, but by simply turning away to help someone else ….

Yet there was no information offered as to what was wrong with him. How could we know how to answer that hardest of all questions when we had neither a diagnosis nor a prognosis? He was on maximum flow oxygen, and we knew there was fluid in his lungs.

After a week of no medical information, I made an official request to meet with a doctor and was finally introduced to a junior doctor. I had been worried that Jonathan was not receiving appropriate care because of his severe disabilities. He was in fact receiving good care, but the doctors and specialists simply did not know what was wrong.

This young doctor was excellent, keeping me up to date with the tests they were doing, as well as findings from X-rays and scans. If he didn’t see me each day, he phoned. When several members of the family were visiting together, he made a point of updating us together. Nothing was too much trouble.

Jonathan’s inflammatory markers were extremely high, his lungs were filling up with more and more fluid; infection was certainly present, but they could not find its source. Laboratory tests were all inconclusive. The medical staff were perplexed.

He was on high-flow oxygen, set to the maximum volume per hour. They tried various antibiotics, then mixed up cocktails of increasingly powerful antibiotics. Nothing was effective. He was critically ill.

For the next two weeks he hovered between life and death.

Yet again I was asked about his advance care plan, this time by the respiratory specialist. Had they not written it down previously? Our feeling as a family was that he should be offered the same medical care as any of the rest of us would be offered. If they could locate the problem, it might be a relatively easy fix. If they could not ….

We had family conferences in the ward’s lounge area where we held each other, and blinked back tears, wondering if this was to be his end, what was the compassionate thing to do. We prayed for him, and for guidance for ourselves and for the medical team.

We believe that God is the giver of life, and that He is in control. We did not want to pre-empt Him by advocating for full medical care if it was God’s will that Jonathan should pass. Nor did we want to let him die if it was God’s will for him to live.

My quandary was not helped by an acquaintance, who heard that our severely disabled foster-son was in hospital and critically ill. She immediately said, “Well, if he was a dog ….” She saw the shock on my face – and chose not to continue. Jonathan is not a dog.

However, it prompted me to think about my previous dog, and when she was ill; she had already had a longer life than usual, treatment for her condition was impossible, and she would only experience pain of increasing severity. She was euthanised in my arms. I believe I did the right thing for her, although it was the most difficult thing I have ever done. If she had been younger and had had a chance of recovery and good quality of life, I would not have done so. I did wonder if perhaps we were more compassionate to our animals. But human life is not ours to take.

What if we were willing to prolong Jonathan’s life but then his pain levels worsened significantly? If it meant a temporary reprieve followed by a slow agonising death? We did not want that for him, but nor did we want him to die if there was a chance to return to his normal life. Who could predict what the future held for him?

If only we knew what was wrong, and whether there was any hope for a return to his previous happy life with his friends and family, and his Day Program ….

Many would say he led a life without meaning or quality. However, we knew that although his abilities were few, he was happy. He enjoyed simple pleasures, and that was all he had ever known.

Who can determine the validity or quality of anyone else’s life experiences? Is there a point where one can say on behalf of another, who cannot express his views, that his time should be over, or that he would be “better off if he was dead”?

We thought long and hard about quality-of-life issues. It was enough that he’d been kept alive by tube-feeding for the previous ten years. Had I misread God’s will back in 2013? Should I have allowed him to die then, in accordance with Sheryl’s wishes? Yet, looking back, I knew he’d been living a happy life since then. He’d accepted the change in his lifestyle. So had we. I felt that I had made the right decision at the right time. Nevertheless, my thoughts were confused and blurred, swinging relentlessly between past, present, and future scenarios.

Would he now be left bed-ridden, and attached to an oxygen machine, as well as a tube-feeding machine, if he came through this? I did not want that for him – to be kept alive only by machines!  There would be no pleasures, not even simple ones, and very little human interaction if he couldn’t participate in his Day Program.

Because we simply did not know, and the medical staff did not have any answers, we committed Jonathan to God’s care – and intervention if necessary – for God’s will to be done in his life.

We decided to err on the side of caution. We would not give permission for him to be left to die without offering him the chance to live. He would be treated the same as our other children. We prayed that God would override this decision if it was His will that Jonathan should leave this world.

Author Notes

Many will remember some posts last year while we were going through this turmoil. This chapter and the next couple give additional insights, and will be the final chapters in the book I am writing of our journey with Jonathan. Thank you for reading, for the helpful and encouraging reviews, and most of all for your understanding and compassion.

Chapter 27
Nothing else we can do ...

By Wendy G

Nursing staff and doctors were amazed that his family came every day to visit him in the hospital. I was there for hours each day. Joe frequently came in his lunch-hour or did his work online beside Jonathan’s bed. Bella, a teacher, came after school when she could, and my husband was there as often as possible. Anna kept up to date with video calls. She lived nearly eight hours’ drive away.

No one else in the ward had as many visitors. The nurses told us that Jonathan was their favourite patient. He never moaned or complained as other patients frequently did.

There was meant to be a worker from the disability service with him at all times. This was initially the case – until two went on maternity leave, one on paternity leave, and others contracted Covid. If there was no caregiver, it meant that if Jonathan had any problems when one of us was not present, there was no one to ring for a nurse or press the Medical Alert alarm. No one, then, to remind the nurses to turn him every two hours, and to help them do it without causing him pain. No advocate.

Another client from his Group Home was hospitalised shortly after Jonathan. Group Home staff then had to divide their time between the two patients, unless one of our family was there to care for Jonathan.

Believe it or not, shortly after that client was discharged, a young woman from the home next door to Jonathan was admitted.

This new patient was none other than Suzy who had been in my class during the two years I taught at the school for deaf and blind children so many years ago. Suzy, with the blue eyes and blond plaits, Suzy who had been shaken violently as a baby until her brain came loose …. Suzy was now living in the Group Home next door. I wondered what her experiences had been during her own difficult life journey. Suzy is very unwell, and her prognosis is not good. Such a sad situation.

A couple of strange incidents occurred. At one point, the Group Home worker who was present with Jonathan noted that his oxygen had been turned down to zero. Had the knob been bumped when Jonathan was being repositioned? Another time my husband realised the oxygen pump was not working because of a kink in the tube. There was no explanation for either situation.

Did someone feel that he would be better off dead? Either of these incidents could have caused him to die. Both times someone noticed. Yet all the staff always showed him respect and great care, with the exception of one nurse on one shift. These issues were never resolved.

Twice, a Group Home worker had to press the Medical Alert alarm as his breathing deteriorated. Within minutes, six doctors were present and gave the emergency treatment he needed. No longer did I feel that he was being treated as a second-class patient because of his many disabilities. The medical staff all realised that this young man was much loved. They gave him the best care they could.

It was during this distressing time through conversing with the caregivers at his bedside that we found out about some significant changes within the disability service …. We realised that most of the staff from the Group Home were relatively new. Very caring, and capable. But new!

We were to find out more, down the track.

Jonathan remained critically ill, and this was now the fourth week. The doctors were still confused about the infection. The question was whether or not to drain the fluid, even if just from one lung. The fluid in his lungs had increased to a dangerous level. He was unable to breathe well, even with maximum high-flow oxygen.

Jonathan would have to have the procedure to drain his lungs while lying on his side, under local anaesthetic – if they went ahead – and he must not move. He would not survive full anaesthesia. Each day they had been changing their minds about whether to go ahead and try or not. The lungs were more than three-quarters full of fluid. He was dying.

Finally, they decided to go ahead, early in the fourth week. I signed the authorisation. The medical staff made no promises as to his survival; for him the procedure was risky, and they were worried.

Our son Joe had had a spontaneous lung collapse when he was in his early twenties. He knew from having his own lung drained several times, how painful the procedure was. He’d needed morphine for the intense pain. Jonathan could not be given morphine.

The surgeon wanted to drain Jonathan’s left lung, which was fuller. The surgical team of five would operate in his room, bringing all their equipment and machines. He was not well enough to be transported to the operating theatre.

Joe and I were asked to hold him still while they inserted the drain.

The procedure to insert a drain into a lung normally took half an hour. Just before he began, the surgeon changed his mind. He had a portable device to scan Jonathan’s chest and he felt there was too little space to insert a drain – the left lung was too full of fluid, and the needle could pierce his heart. The surgeon decided to drain the right lung instead.

They started over. Jonathan was repositioned. An hour later the right lung drain was in.

Joe and I had held him still, and kept him steady despite his flinching at times as his flesh was cut. I played soft music on my phone near his ear. We both murmured encouragement to him. He made it. He’d always been tough.

Within a few days, more than two litres of fluid had drained from his right lung. A huge quantity for someone whose frame was slight. His breathing improved, and he was no longer on maximum oxygen. Progress. The surgeon and medical staff were pleased at how well he had coped. We were relieved.

Anna arrived from her country town. She was pleased to see that he had some relief already. It was good to see her. She had obtained leave from work and had left her toddler with her husband – in order to see Jonathan.

I thanked Joe for coming each day. If he hadn’t visited through the day, he would visit at night after he put his little girls to bed. “Mum,” he replied, “If I was in hospital, I would want my family coming every day.” He always referred to Jonathan as his brother. I was pleased that this was still so, after all these years.

Bella, too, had been a source of comfort, strength, and encouragement to me. She had three children to care for, but still visited very regularly, and she was always very perceptive as to how Jonathan was feeling.

Another thing which pleased me was the way Jonathan always turned to me when I arrived at his bedside. Despite his poor vision he knew I was with him. He did not need to verbalise his love – that was how he showed it. He seemed to find comfort and reassurance from my being there.

He always reached out with his left hand for me, and I would hold his hand, bruised badly from where cannulas had been inserted. With his fine veins this was always a difficult process, and they always needed a portable ultrasound machine to locate his veins. The same for the daily blood tests he’d endured. He was bruised everywhere.

**********

Three days later they decided to drain his left lung as well. A big decision. It was riskier, we all knew. Joe and I were again requested by the surgeons to hold Jonathan still. We were reminded that the needle could pierce his heart if he moved, and there was very little space. His blood pressure, always low, started to drop, alarmingly.

“Keep an eye on that!” the surgeon said softly to his assistant, nodding towards the blood pressure machine. I also turned to the machine and was horrified to see that his blood pressure had dropped to 67 over 46. Dangerously low. No, I was not a medical person, as I had often been reminded by that previous CEO and his so-called Health Care Team, but I knew what this meant.

Gradually, ever so slowly, the corner was turned. His blood pressure moved up, and again, after an hour, the procedure was completed.

**********

I reflected on the difference in attitudes between these very skilled surgeons and the previous Health Care Team of the disability service – the ones who had demeaned and bullied me and treated me as ignorant and inferior, ten years prior. Yes, so very different.

I was not a medical person, but the surgeons had enough confidence in me, and in Joe, to ask for our help during two life-saving surgical procedures. They had valued our help and input. We were not only permitted to remain in the room but invited to assist them.

I asked the surgeon later if draining his lungs was Jonathan’s last chance. “Yes,” he affirmed. It was a sobering thought. They had nothing else to try.

Chapter 28
Eureka!

By Wendy G

After Jonathan’s second lung procedure his breathing continued to improve significantly. In the next two days a further three and a half litres drained from his left lung, shocking even the doctors. The total from both lungs was more than five litres altogether (well over ten pints) of fluid!

However, analysis of the fluid still did not reveal the source of the problem. They had relieved the symptoms and dire consequences, and respite was accomplished. But they were still in the dark as to the cause of his illness. These benefits would only be temporary.

Normally in a healthy person the fluid present in the lungs is absorbed each day. Increasing fluid in the lungs was a sign of the body not managing some other illness. It was vital to discover where the infection was. If only he wasn’t non-verbal, and could speak of where he was experiencing pain and how severe it was.

Multiple X-rays and scans were performed. Was there a growth or a tumour? Because they had been unsure if the source of the problem could have been with his stomach or bowels, they had for the most part withheld his nutrition while they checked.

They could find no evidence of any tumour or growth. I was thankful.

Interestingly, the doctors informed me that tube-fed people ALWAYS had bowel and stomach problems, because of the lack of fibre. That made sense: it explained a lot of his discomfort over the recent years – but again, such things had never been mentioned in any discussion about tube-feeding by that previous Health Team. Tube-feeding had always been presented as the ultimate solution for people such as Jonathan.

His markers remained extremely high for infection, but at least he was breathing much better, and he was now on low-flow oxygen in decreasing volume. A plus.

A few days later they decided to discharge him. They hurriedly weaned him off the oxygen, and back onto his tube-feeding – which, yes, had been offered only irregularly for five weeks. When he’d been given the nutrition by tube, he had at times vomited, and that could have been fatal.

***

We were astonished that he would be sent home already, so soon after these procedures, as he was still,very obviously, far from well. It didn’t make sense.

Why such a quick exit from the hospital?

They felt he would be safer at home. A number of serious Covid cases had been admitted to his ward – the respiratory ward.

***

The hospital did not tell the Group Home the reason for his discharge. Perhaps they did not want to alarm the staff. They, however, assumed he was well, and were all very happy to see him home, thinking he was ready to resume normal life.

I told them, myself, about the Covid, and I had to insist they did not send him to his Day Program straight away. He was still very ill and would have remained in hospital if not for the presence of Covid. They were shocked; they promised to look after him well and give him plenty of rest. It was a big responsibility for them.

The hospital discharge papers had been quickly drawn up to facilitate a hurried departure, and they had included a medication to help drain the remaining fluid from his lungs. This concerned me, as the doctors had taken him off that particular medication – because it reduced his blood pressure significantly and alarmingly.  I knew the nurse was at the Group Home to check his blood pressure only two days a week!

I insisted they withhold that particular medication until they had spoken with a hospital doctor.

The nurse phoned the doctor at the hospital but could not make contact. She would try again in two days when she was next on duty at the home.

I was Jonathan’s legal guardian – and I had been given authority about his health and medical matters. I refused permission to the Group Home staff to give the medication. After all, the nurse would not be around to monitor his blood pressure, and the Group Home staff did not have authority to do so. What if his blood pressure plummeted to dangerous levels? They would not even know.

Fortunately, the caregivers respected me and were happy to follow my instructions. I had spent many hours with each when they were doing shifts at the hospital. Although many were relatively new, our time together spent watching over Jonathan had initiated pleasing and positive relationships.

When the nurse finally got through to the hospital doctor, he agreed with me. That medication should not have been on his discharge papers.

Vigilance, for everything. It never ended.

In retrospect, being taken to the Guardianship Tribunal had not been a bad thing. Sometimes it is only in looking back that we see the benefits of painful experiences.

***

He lasted two weeks, and then had to return to hospital, too sick to stay at home.

This time the Emergency Department ran extra tests.

Within a few days they had determined the type of rare bacterial infection he had contracted – one of the ten most dangerous in the world, and resistant to almost all antibiotics. However, it was not the MRSA infection he’d previously had, which also figured in the ten most dangerous bacteria.

The medical team knew of one antibiotic which they thought would work well for him. They immediately switched him over to that one – and it was effective! Improvement straight away.

I was extremely thankful that we had given Jonathan the opportunity to have ongoing medical treatment, for in fact, after all he had been through, once the diagnosis was made, it was a relatively simple fix.  He improved gradually.

The doctors and nursing staff were very pleased. Later conversations with them revealed that they had doubted his survival.

The surgeon draining Jonathan’s lungs had pushed himself beyond his own comfort zone – we were thankful for his willingness to try, for Jonathan’s sake and for ours.

We were also thankful for his clever mind and skilful hands, as he did something which had not been attempted before. If he had not, Jonathan would not have lived long enough for anyone to discover what the rare bacterium was.

Kudos to him, and his team.

We were so grateful for all the care Jonathan had received, for the fact that they had chosen to see him as a valuable person. They had all learned more, from hands-on experience, about the level of care needed by people with complex disabilities. Some had had no previous experience like this. In his own way, Jonathan was a teacher.

Eighteen days later Jonathan was home again, his markers still not wonderful, but moving downwards toward normal. He steadily made progress towards full health, but became tired very easily – not surprising after seven and a half weeks in hospital.

Such a relief, for him and for all of us, after these exhausting two months.

***

We prepared for Christmas, now only a month away, looking forward to a wonderful time with all the family together – and well.

Jonathan missed the Christmas gathering. Despite every precaution, he'd caught Covid!

Author Notes

He was admitted with a diagnosis of double pneumonia, with pleural effusions in both lungs. This pneumonia was caused by another infection. He had Pseudomonas Aerugenosa, an opportunistic pathogen. In 2013, he had had Staphylococcus Aureus (Golden Staph, or MRSA).

Chapter 29
Finale!

By Wendy G

Yes, Jonathan missed our Christmas celebration because he caught Covid! However, very surprisingly, he did not get it badly, and recovered quite quickly. He is a tough young man, always has been.

He is at present very well, and back at his Day Program, enjoying life with his friends. His life-threatening bacterial infection has cleared. His heart is strong, his kidneys likewise, and his lungs are back to near normal. I am so glad we made the decision to give him every chance. This was not his time.

Yet things can change quickly. There are no guarantees, either for Jonathan or for us.  As a family we are now ready to accept whatever the future holds for him.

We’ve worked through the pain of “those conversations” and possible scenarios. We are happy with our choice to offer him full medical care. That’s what we will continue to do, unless it is clear that his condition is terminal, with no possibility of effective treatment, every possibility of increasing pain, and no hope of return to his present way of life.

Yet Jonathan has lost much of his spark. It started to flicker from the time of his so-called accident, when his front teeth were smashed and his jaw was broken. It dulled even further when he was manipulated into being tube-fed. That’s when the spark almost went out. It remains a source of sadness that Jonathan no longer has the pleasure of food. With that loss, the sense of smell has also disappeared. Because each client in his Group Home is tube-fed, there is never any delicious aroma of foods being prepared. No aroma of spices lingers in the air, there is no longer the tantalizing pleasure of a barbecue with sizzling steak, bacon, onions and more, no longer the warm comfort of the smell of a delicious casserole or roast dinner baking. There is never the enticing aroma of a cake or pastries warm from the oven.

These losses are compounded by the lack of connection and community around a shared table. Each person’s feeding tube and medications are looked after individually and at different times, so there is not a rushed procedure for anyone. One can’t and must not dwell on the past. We try to focus on keeping his relationships with others positive and varied, on the sense of hearing and the delight of music, and of course on the comfort of touch. He will never be too old for holding his hand, stroking his arms to help his tight body relax, or for the comfort of a gentle hug.

We’ll all continue to offer love and advocacy for whatever time remains. His lifetime will probably be less than for others, but I think we will know when that time comes. We are prepared, but still, perhaps selfishly, we hope it won’t be soon. Yet while he can still give and receive love, that is probably enough for a meaningful life …. Isn’t that enough, for all of us?

***

As for the staffing within the disability service, it seems there has been somewhat of a revolution. The CEO had been placed “on extended leave” during 2023, followed by his required resignation. A restructure has seen fewer high-level positions. The new CEO, previously one of the Day Program staff, seems to be trying to cut costs. That usually means compromise in the quality of care given. I’ll be watching.

Unfortunately, the events of the restructuring also brought about the early “retirement” of the Team Leader of the Day Program; her loss, along with her years of care, wisdom, and expertise, will be significant. The clients will miss her greatly. Jonathan will, however, continue to see her informally as a family friend, for I am organising coinciding visits.

Interestingly, because I was shocked to learn of the inadequacy of the nursing team’s availability, before Jonathan was hospitalised, the new CEO and her team invited me to give input into what training the Group Home workers needed, to upskill themselves for those times when a nurse was unavailable.

Simple things like checking blood pressure and oxygen saturation levels, and being able to understand how to use the oxygen tank (which I requested them to buy and keep handy for the clients of the two adjacent Group Homes), and some other procedural matters which would increase the comfort of all the clients … even though I’m not a medical person, they were happy to listen and act.

I have requested (again) a monthly health report, along with a copy of results of regular medical tests. I have also requested the reinstatement of my input into his Day Program. This had lapsed since Covid. I’ve also requested a monthly report about his activities, and feedback as to whether he is achieving prescribed goals, as before.

I don’t want child-minding for him. I want a well-planned, interesting, and varied program of activities and experiences for him to enjoy. I will be communicating, and so will they. I am still here. Still watching. Older and wiser.

***

My hope is that my experiences, even from the very first day of fostering and all those early difficulties, have helped me to have a broad knowledge base of Jonathan’s needs, and awareness and sensitivity to the needs of all the clients. I have been looking after Jonathan for almost as long as the new CEO has been alive.

I have not let the negative experiences of previous years bring me down. I am not a victim of the system, and I will not allow Jonathan to be a victim. Those experiences and situations have moulded me, and they have strengthened me. Like Jonathan, I am tough.

I know now what can go wrong, and I know what people can be like when they are crossed. But I hope to work positively with this new team for the benefit of all, and my aim will be to respectfully offer constructive support – for the sake of the clients, as there are no alternative placements.

The lives of these disabled young people are still to be valued and respected. I believe they are just as loved by God as any other person, despite their brokenness, despite their vulnerability. Perhaps even more.

I am ready and willing to be their voice.

When I was young, I had never foreseen these areas as being part of my life. I always wanted to be a teacher. Just a teacher. I also wanted to be a mother. I am both, with an extended teaching role, and an extended mothering role.

Yes. I found myself not only teaching and mothering, but simultaneously being an advocate for a disabled person.

 I've found that step by step I have moved into the small intersection of five powerful circles, the worlds of fostering, disability, government departments, the medical world, and disability services.

I became therefore not only a teacher and mother, but a learner. I have learned much from all these systems, and I've learned compassion for those whose lives are daily caught up in them. I have learned to care too for others who are overwhelmed by their own powerlessness and lack of control over difficult circumstances, not of their own choosing.

I have learned from Jonathan, who was himself a teacher. We all have.

Without words he has demonstrated courage, and what daily perseverance is, and through him we have learned how to love without expecting anything in return. In so doing, we have caught a glimpse of unconditional love.

He taught us how to take time to find pleasure in simple things, the beauty of nature, the freshness of a breeze, the warmth of sunshine, the scent of flowers, the power of music to soothe or uplift.

He has taught us to be mindful and respectful of the human body, to cherish, and be thankful and grateful for, the miracle of normal human growth and development – because we became increasingly aware of how complex our bodies and minds are, how intricate – and how fragile. He has taught us so much. Without a word he has even improved the medical understanding of hospital staff.

***

Our family life was forever changed by that initial sense of calling to look after one disabled child for a few years until his adulthood. That initial step into an unknown future led to many more steps, which led into valleys and led us to climb mountains. Our family life was different from most others. Our children are undoubtedly different because of their life experiences. They missed many outings and fun times their peers had, but I don’t think they regret it or resent it.

They are all caring and competent, each gifted in his or her own way, and they all serve the community in ways commensurate with their gifts. I am proud of who they are, and I thank them, along with my strong and steadfast husband, for their constant presence and encouragement on this journey with Jonathan.

We may not have been called to do anything grand, and we may not have made a significant difference to the world, but we have made a difference for one person, Jonathan.

***

The curtains of Act Three of his life have not yet closed, and the accompanying orchestra plays on.

Some movements have been calm, quietly moving, with the sound of a single flute or violin. Others were cheerful, joyful even, and yet others were filled with angst, where the very instruments wailed. Still others, compelled by fear or pain, were very turbulent, expressed by thundering drums and clashing cymbals. 

I hope that his final years will be filled with peace and serenity, and that when the time comes, gentle, beautiful music might accompany him home to his loving Father.

 

Author Notes

This story follows "Eureka". I am gradually putting these stories into a book with chapters, presently with the title "Jonathan's Story", in my portfolio. I am thinking of the title "Unlikely Survivor: Jonathan's Story" if I can get it published as a book, and would value any comments or other suggestions about this title. If that gives away the ending too much, what about "Battling the Odds: A Different Life"? (Thanks, Jim W, for your input)

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