My 33-year old son grabbed my hand while his new doctor was using a scope to look in his ears at his annual physical. The instrument bothered him, and he was trying his best to tolerate it. His pulse had registered through the roof, so we knew he was stressed. But he said nothing. We held hands.
Doctor’s appointments are never easy for Billy. It is only recently that he was transferred from his pediatrician to an adult practice. The new doctor knew what she was taking on – I told her that Billy has been known to hit people and to scream – but she agreed to see him anyway.
These everyday heroes you meet in the special needs world are one of the benefits of raising a disabled child.
Billy doesn’t speak, and he doesn’t understand much. He is severely autistic and intellectually disabled. Abstract concepts such as “tomorrow” or “favorite” mean nothing to him. He knows basic nouns, like car and swimsuit, but not big and little, or fast and slow. He is not able to tie his shoes or make his lunch, and needs other people to do just about everything for him. We pray that they do it with kindness.
Billy’s happiness will always depend on other people. He needs help with basically everything. He can only eat what is put in front of him – he has little choice in the matter – and can only do what is offered for him to do, and eat what is offered to him to eat. If the caregivers taking care of him on a day-to-day basis don’t actually care about him, he will not have a good life. It’s as simple, and as terrifying, as that.
The reason I can sleep at night is because I have learned that there are wonderful people out there who can take care of my son – not just his doctor, but his residential caregivers and day program case managers and others. They care about Billy, and try to make sure he is happy. They celebrate his successes and report to me when he is doing something fun, sending pictures. In some ways he is their child as well as mine.Because of Billy, I have been blessed to meet amazing people who work in the special needs world, whom I wouldn’t have known otherwise. I have learned so much, not just from Billy but from his caregivers. We are so grateful.