Jonathan's Story : 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.
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