Sunday, August 2, 2009
I feel so sad because Noe won't talk to me
I was putting Asher to bed when he blurted out this sentence. It came out just before I tink Thomas is a good train and Diesel 10 is evil and after Is a penis like a tail? Gotta love conversations with 4-year old boys.
Asher has been the little-big brother to Noe for quite awhile now. Like many kids with disabled siblings, he fell naturally into that role. Although I am determined for Asher to have as normal of childhood as possible, and I try to make sure that his responsibilities and stresses are age appropriate...he is not Noe's therapist or caretaker, he is a little boy... Asher has inevitably become Noe's helper....holding his hand and guiding him along while we are shopping, answering for Noe when someone asks him a question and cheering the very loudest for Noe throughout the sports camp they attend together.
I remember one instance in church a few months back. I was helping Noe participate in a sharing time group activity. There were about thirty kids and teachers in the room. Noe started to melt down because he couldn't get the puzzle piece on the board exactly how he wanted it. As he slid to the floor and I leaned over to pick him back up, I caught a glimpse of Asher sitting in the audience. He looked visibly stressed. It wasn't a look of embarrassment as much as concern for me and Noe. It occurred to me in that very moment that no matter how much we try and shield our struggles with Noe from him, he does absorb our stress.
A friend sent me an article awhile back about siblings of kids with autism. Research shows that siblings tend to fall on opposite ends of a spectrum. There are the super siblings that try to make themselves perfect and take on great amounts of responsibility in order to compensate for their autistic sibling, and on the other end are siblings who have tremendous problems in school and society, unable to deal with the stress at home. It is very obvious where Asher is headed, despite our constant reassurance that his efforts, regardless of the result, are always good enough and we love him regardless of how well he performs in X. Perhaps we are sending off subliminal signals to him? Because, I won't lie, I do want him to stay easy and agreeable and helpful.
I remember a particularly hard night with Noe soon after his autism diagnosis. Asher was just an infant and we did not know if he was also affected, but I suspected that with his easy personality and engaging eyes that he did not have autism. I remember that night....watching the boys curled up together asleep... finally... in our tiny Queens apartment....feeling a physical and emotional exhaustion that made me want to scream and claw at our plastered walls and curl up asleep for days all at the same time. I prayed to God and told Him that I might be able to handle one child with autism but not two. I told God... yes, I was angry... don't you dare, even think about doing this to Asher, too.
So here we are....Asher and I....four years later and beginning a dialogue about autism. What it is. How it will affect Noe. How it will impact his own life.....forever.
Posted by Jen at 8:02 PM