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.


Grace said...

You have two amazing sons, even though I have not seen them in quite awhile, I am sure. Asher's protection of Noe is precious and that is how siblings are with one another. Growing up Jonah and I were pretty close, maybe because we looked so much alike or because he didnt like me very much when I was born, I naturally gravitated towards him. He was diagnosed with autism as a small child as well and didnt start talking until he was five, and even then he didnt talk much. In my experiences with my brother I just always wanted to be there for him and look out for him, but at the same time he taught me a lot and I learned to see things in a different perspective. What I've learned about children with autism is they are not any less capable in an overall sense as children without. They just have certain skills more acute than others. Just like certain children, even without disabilities, are better at certain things than others. Like Jonah is amazing at drawing and has an incredible memory and I was always fascinated by him. Growing up he was like my human encyclopedia. Nonetheless, he helped me and I helped him. As we got older there are much less noticeable differences between us, I learned to draw and can remember things pretty well and he can be in a conversation and hold his own. Of course Jonah and I are not the same age differences as Noe and Asher but in the end they will both gain something from their relationship with one and another and as they get older Noe’s going to seem more of the big brother despite Asher’s unchanging position in his life.

ami brown said...

Jen, this not only broke my heart to read this, but made it melt too. Noe and Asher will have a bond that may be stronger than other brothers would have. I can't imagine what you have and are still going through. You are truly my hero! You are always so strong and determined. Noe and Asher will be too! Just like Asher is there for Noe when he needs him....Noe is there for Asher too in other ways. He will always be his big brother. There is a bond and love that may not be spoken, but is there. You are truly blessed to have two amazing little boys.

Beth said...

Wow Jen. Thanks for sharing this. I have never met Asher, but he seems like the coolest, neatest kid. You are a very strong mom. I admire the strength you have in caring for these two awesome little souls. :)

RCH said...


Kage said...

Oh Jenni...those boys are so lucky to have you. both.

Chloe said...

Jen, you are a remarkable mother. I can't imagine what mothering both of these boys is like for you, the stresses that it places on you and Ed and on Asher.

You are doing such a good job. This was beautifully written. These boys are so blessed that they have you as their mother.