Tuesday, October 26, 2010

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.

RulesAndrew 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.
Enhanced by Zemanta


  1. Wow- I'm actually crying here :( Corbin isn't to that point yet- I don't think he realizes the implications if Brian doesn't "grow" at all....he still asks questions like "When Brian is 15 will he still have autism?"- I hate to think that all these fears and sadness I have concerning Brian's future could someday be Corbin's.

    Andrew is always going to be such a wonderful big brother to David- David is very lucky :)

    I have heard of that book before- heard it was good. What is the age range for it?

  2. I'm crying too. You have raised such loving and caring children in a sometimes cold and mean world. David and Andrew are so lucky to have each other; you should be so proud!

  3. My autistic son has a little sister and we have thought about this quite a bit as well. She read the Rules a few months back and, as is her way, she didn't say a word about it. She is so compassionate that we fear she will, someday, take on too much responsibility when it comes to her brother. All we can do is plan, set things up as best we can, and continually tell her that she is entitled to her own life.

  4. @ Heather - Didnt' mean to make you cry. Sorry. The age range for the book is Grades 4-7. Andrew is in the fifth grade.
    @ Ann - The boys are lucky to have each other, and lucky to have you, too. Tell your kids they're drafted, also.
    @ BD - "Entitled to her own life." I like that phrase and intend to use it.

  5. Well, you have raised quite a kid in Andrew. Holy cow, what a guy. Audrey isn't going to have any siblings so I have the whole different set of worries about who will take care of her if she can't fully take care of herself. But I know the sibling thing can be incredibly stressful too...it breaks my heart that he was so affected by that book!

  6. Oh my goodness! What an incredibly beautiful post! Thanks so much!

  7. I hope you've passed this on to Cynthia Lord.

  8. Okay, so I've had a bunch more visitors today than usual. Would someone please indulge me and tell me where you are all coming from?

  9. My husband and I were recently asked by a psychiatrist at the local hospital to speak to his interns about our experiences raising our 13-year-old son with autism and the impact autism has had on our family, which includes our eight-year-old daughter. It was cathartic to have an audience of curious, educated adults asking sensitive questions about our life. Even more rewarding, though, was the letter one of the students sent to us about a month after our hospital visit. He told us he was in the program because of his older autistic brother, and that while it was difficult at times growing up, he knew he was a stronger, better person because of his family circumstances. He wanted to share with us that he knew it would be that way for our daughter, too.

    Your post is wonderful and inspiring! Thank you for sharing it!