He Ain’t Heavy

Growing up in Omaha, Nebraska, I am intimately familiar with the famous quote, "He ain't heavy, Father, he's my brother." It was chosen by Father Flanagan to be the motto of Boys Town, a home for troubled boys that he founded in Omaha in 1917 and later made famous in a movie starring Spencer Tracy and Mickey Rooney.

When David was diagnosed, it was like my world shifted course. For a long time, I couldn't think of anything else. Obviously now, almost three years later, I can think of other things. I have to think of other things, but not a day goes by that I do not think of autism, even though that thought may not evoke the same feeling in the pit of my stomach that it did originally.

When David was diagnosed, our older son was seven years old. We did think about the ramifications that David's diagnosis would have for Andrew as an adult. Would he need to care for David? Would they live in the same town? Would Andrew need to support David? What we did not originally consider, however, was that Andrew would feel the impact immediately. At the first autism conference I attended, I heard a developmental pediatrician discuss the effect of autism on siblings. The worries that he had heard expressed by siblings of children with autism as young as six, seven, eight or nine years old were startling.

Andrew is an extremely tender-hearted boy, so I knew that he worried about his brother. Last week it all came spilling out. He had just finished reading the book Rules by Cynthia Lord. It is written from the perspective of an older sister, ironically, with a brother named David who has autism. To quote the back cover of the book, "That's where I keep all the RULES I'm teaching David so if my someday-he'll-wake-up-a-regular-brother wish doesn't ever come true, at least he'll know how the world works, and I won't have to keep explaining things."

Andrew is required to read every day for school, and on this particular day he read an extra 11 minutes because he wanted to finish this book. An extra 11 minutes that were so moving to him that he came into my bedroom sobbing. The flood of emotions could not be stopped. All of his fears came tumbling out. "What if David never can be understood by other people? What if David gets lost? What if he cannot be found even with an Amber Alert? What will he do if I die first? Who will take care of him?"

I could not tell him not to worry because, he informed me, he worries about it every day. He worries every single day. Just like me.

What I learned from this experience is that Andrew has wisdom beyond his years. I cannot pat him on the head and tell him everything is going to be okay. I cannot tell him not to worry. I cannot tell a joke and take his mind off of it, coax him out of his concern. He wants to be a partner in this process. He is a partner in this process and he is smart enough to realize that at some point, he may be solely responsible for David. Do I wish that this was not the case? Yes, but I know that Andrew loves his brother unconditionally. Andrew accepts David's autism, even celebrates David's autism as an integral part of who he is. He has often remarked that he would not take away David's autism if he could. So, do I believe that Andrew is up to the task? Absolutely. In fact, we may have a difficult time convincing Andrew that David and (hopefully) his wife and kids do not really want to live with him. Maybe just next door.