Fill her up!

Yesterday, I spent a few minutes answering a survey by the Autism Society of America and SUNY Stone Brook which will be used to assess the perception of progress in children with autism. Specifically, it "aims to identify how families view hope, change and progress for their loved on with autism." (The study is described and may be accessed via this link: http://www.autism-society.org/site/News2?page=NewsArticle&id=15701&news_iv_ctrl=1882).

The survey lists a variety of potential goals parents might have for their child with autism, including their ability to live independently, have friends, be happy, and so forth, and asks the parent to decide how important each of these goals are. Although my intent for answering these questions was to assist their research efforts, I found myself searching my heart for some tough answers. If I were unrealistic about my son's condition and the fact that it is incurable, I would have said that every goal was very important but I found myself saying it was less important that my son marry than for him to be happy for instance. I found myself addressing my frightful concerns about his future independence, his ability to make a living for himself one day. It's not that I think he will be incapable of either of those because I think he could one day but what scares me is that there are so many unknowns with autistic children. He may be able to make friends, fall in love, and live independently, for instance, but if he adopts a stigmatizing habit/tic which alienates him from others, such as employers and employees, he may not be employable no matter how awesome his mommy knows he is.

I might have forgotten the survey today had I not been reminded again of how my son is different from neurotypical (NT) children. My son had been invited to a Valentines party by a friend of my mother-in-law's (MIL). Although my son was one of the youngest kids at the party, his behavior was clearly not related to his age. I can't say I regret having taken him to the party because I feel it is critical that he be around NT children but I did feel more than once that I was asking him to be somewhere where he was too often uncomfortable. The sound of the children laughing and talking were too much for his ears. The games intimidated him because any game that has a winner and a loser is too much for him since he is almost handicapped by his perfectionism. One minute he would walk into the quietest room he could reach then the next he would be leaping with the children for balloons intent on playing alone among the many.

I had hoped that a child would take an interest in my son and put him under his/her wing so to speak but it didn't happen. He didn't understand them and they didn't understand him. With sadness in my heart, I watched from a distance understanding them all. I had thought that my goals were realistic yesterday when I took the survey, and now I'm concerned that perhaps they weren't. Either way, we have a long road ahead of us and I'm even more determined to try to bridge the gap between my son's world to that of the majority, the neurotypicals. More importantly, I need to help my son understand what makes him truly beautiful and amazing, to help build his character and strength while simultaneously help him identify his limitations and to learn strategies which will help him navigate the NT world more seamlessly.

After the party, my son was his usual happy self because, for him, there is no place like home. I, however, came back sad, discouraged and with a heaviness in my heart. I could sit and dwell on this sadness or I can use it to fuel my determination to help my son. I vote to fill her up!