My job for the past two years has been working with a student who has multiple disabilities. Let’s call him Jim. His primary diagnosis is having Down Syndrome, but he has also been labeled as autistic and having catatonia. Jim loves to play ball, laugh with peers, watch TV, and hold hands with pretty girls. He is sixteen years old.
Jim has very few friends. He has never had a girlfriend. He plays basketball with Special Olympics, but has never been in a competitive game because of his catatonia. Jim struggles to speak, and his clinical level of speech is that of a 15 month old.
This teenage boy cannot tell his story. He cannot share his hopes, his fears, his pain, his joy. At this point, Jim’s storyteller is his mother, Cathy (not her real name). Cathy explains how Jim’s night was, how he seems to be doing in the morning, and what I should look out for during the day. When I take Jim out into the community, I try to let his body language and facial expressions talk to people, but I fill in the blanks as needed. He has an iPod app that displays pictures for choice making and simple greetings, but his catatonia regularly prevents him from touching his desired icon.
I sometimes feel that Jim’s internal story must be full of laughter, tears, and sighs. Often I am left with my own tears, wishing that this young man could tell his story, describe a fun game he played, rant about a stupid classmate, tell a joke, or explain how he got that blister on his finger.
After working with Jim, I reminded that some of the most heart wrenching stories are those that cannot be told.
If you would like more information on Down Syndrome-Autism Spectrum Disorder (DS-ASD), visit Down Syndrome Education International, the National Down Syndrome Society, and Down Syndrome-Autism Connection.