Jonathan's Story : 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.
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