Friday, December 19, 2008

Grateful Grandmother


My ASD grandson, A. J., has a heart valve that came from a pig. I wonder what, if any, influence that has on him? Since valve implants don’t grow with the child, this is his third. The first valve was from a baby whose parent’s donated her heart after she died in an accident. (We are sad for them but grateful to them.) The second was a mechanical valve (for this we are grateful to the surgeon and inventor), and this last one, as I say, came from a pig (to whom we are also grateful). Apparently, pigs have many similarities to humans in their body parts.
There was great confusion at the time of A.J.’s birth, both for the doctors and his mother and I. The doctors were trying to determine all the defects he had. The missing valve was the most life-threatening. During his first week in the Intensive Nursery we were told he would probably be blind, deaf, and severely mentally handicapped. Well, the good news was that he wasn’t blind or deaf.
He did have difficulty in eating; swallowing actually. He was on a G-tube for four years. He also had difficulty breathing, so had to have a tracheotomy. He kept that device in for two years. Eating and breathing difficulties, plus a missing heart valve made tough challenges for his mom in his upbringing. He has generally a sunny temperament; in fact, he has a large fan club. When he was a toddler he was exceptionally handsome. That could be the grandmother in me talking, but we have photos.
A.J. celebrated his nineteenth birthday this year. His body is no longer a child’s body. He is still limited in his diet choices and runs to bean pole stature. His greatest difficulty now is being understood. His mom has completed the guardianship process.
Like any other teenager, A.J. is frustrated that people don’t understand him. His speech, even after years of therapy and specialists and exercises, is difficult for most people to understand. Certain phrases come out clear enough like, “Start your engines!” Need I add he’s a NASCAR fan? Also he says with a laugh, “I’m watching you!” and expects you to say you’re watching him too. Clear phrases like these are often from things that initially frightened him. Unlike other teens, he is physically unable to make himself understood for even the simplest statement of need or desire. He is not trying to break away and live his own life like other eighteen year olds; for A.J. is unlikely to be leaving home and setting up an independent life of his own. He has no affinity for the written word except for making his own name: A.J.
He does have an established routine and many activities he enjoys. Life is mostly good for A.J. and his family loves him dearly. We are grateful.