Thursday, April 10, 2014

Autism Understanding & Acceptance 2014 Day 11: Shield of Protection

I could also call this post "Learning not to give a damn about what others think".

Full disclosure: my personality type cares very, very deeply what other people think of me. Ridiculously so.  Being above reproach, liked by everyone, having everyone's approval = my undesired but undeniable underlying motivation for much of what I do.  

This gets tough when you have a child with autism.  You may think this post will be about wanting people's approval when we are out and about with T in public, but it's not really.  It's about other autism parents.

Yep, I just went there.  

Do understand: I have a few fellow parents of kids with autism who are very close friends and confidents.  But one of the most important things I have had to do to keep my own sanity is to put up my Shield of Protection against other fellow parents.  I will let it down only after several conversations, and only when I have discovered that she or he does not have all the answers or have found THE cure or knows how to fix T.  Believe me, the autism community is divided, and there is very little if any middle ground.  

And I'm stuck in the middle.  Stuck because I don't believe that vaccines alone cause autism.  Stuck because I do think it is nuts to give so many at the same time.  Stuck because we've learned that the special diets DON'T work for every kid.  Stuck because I do believe some kids do improve on special diets and supplements.  Stuck because I'm not entirely sure that those kids have classic autism if they improve or are "cured".  Stuck because I see lots of genetic family traits in T's autism ("vertical identity", for those who have read the excellent Far From the Tree by Andrew Solomon).  Stuck because I don't think that genetic causes are the whole answer.  Stuck because I believe both sides of this argument hold some truth, but the truth is somewhere in the middle.  I also think that we have much truth yet to be discovered.

I am caught between the two opposing worlds.  And let me tell you, the debates can be vicious.  I won't go into details, but I have learned the very, very hard way that I can't really talk with many other fellow parents about what has not worked for T because I either get the Disapproving and Superior Look (I didn't try hard enough or go far enough) or I'm actually told those very things. 

Add to that the persistent barrage of news stories that flash across Facebook or the television on autism, and it can feel like I'm under attack...unless I have The Shield up.   I've gotten pretty good at it.  Somewhere along the way, I built The Shield.  It has been very beneficial for my sanity, and for following my gut and doing what Rob and I believe is right for T.  

However, once I find another parent that doesn't have all the answers, that believes truly that each kid with autism has his or her own path to improvement, and that does not judge another's path - then that fellow parent is a friend for life.

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