Wednesday, January 4, 2012

ASD and the extended family

I remember when we found out that Levi has an ASD.  One of my first thoughts was "Oh, God!  How is this going to impact Lorin?"  I worried that he wouldn't be able to function as an adult in our society and would become her burden to care for when Brad and I are no longer able to do so.  This seemed so unfair to her and made me quite upset.  Thankfully, Levi is showing us every day that he is much stronger than his ASD.  Brad and I have every reason to think that he's going to be a very productive member of society and, because of this, we have been able to move on to the "acceptance" stage of the grieving process.  During the holidays, we were very fortunate to spend time with both sides of our family.  It was during this time that I realized that Levi's ASD is more far-reaching than just me, Brad and Lorin.  I never considered the impact that his diagnosis might have on other members of our family.  For example, there's the family member that immediately jumped into "fix it" mode.  They researched centers that we should contact and therapies that we should try.  They sent links to research articles.  They even went so far as to tell us that we needed to sell the house and move to an urban area where we'd have access to more resources.  On the flip-side of that, we had the "deniers".  They just didn't see what was wrong.  So he doesn't talk; that's just because his dad is shy.  He doesn't make eye-contact; that's because it makes him uncomfortable.  He likes to play with light switches and electrical outlets; he's going to be an electrician when he grows up.  Somewhere in the middle, we had the "I'm just angry" crowd.  They're not necessarily mad at Levi; they're mad at his limitations.  I can't talk to him.  I can't play with him.  He won't let me give him a hug.  Watching all of  this going on around us over the course of a few weeks was an eye-opening experience.  First, it made us realize that having a child with an ASD affects our entire family, not just me, Brad, Lorin, and Levi.  We're not in this alone.  We have the greatest resource available to us - a loving family that wants to do whatever they can to help us all weather the storm that is having a child with an ASD.  Second, it helped to make me feel normal.  I have been all of the above people.  For a very long time, I didn't want to believe that anything was wrong and I made excuses for his peculiar behavior.  Then I wanted to "fix" him.  When I realized I couldn't fix him, I was mad as hell.  Sadly, watching other people that care about him struggle to make sense of this disorder has made me feel like maybe I'm handling this in a way that's okay.  I'm glad we don't have all the answers.  It's thrilling to know that we have such an amazing group of family members to help us search for them!

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