Jonathan's Story : 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 ….
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