Biographical Non-Fiction posted January 14, 2024 Chapters: 1 2 -3- 4... 

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It's hard to be different ...

A chapter in the book Jonathan's Story

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.



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