Thursday, November 17, 2016

Cure or No Cure?

I knew what they were going to tell us as soon as we walked back into the office.

It was February 13, 2013.  We spent that morning being interviewed while B-man under went all kinds of testing.  We took B to my momma and Ryan and I went back to Children's to hear the results of the morning's testing.  I had had a hunch he was autistic for about a year by that time.  But when we walked in, the lady with the clipboard also had a bunch of booklets with her.  There were booklets on the wall about autism.  I did the math.  

In the days, weeks and months after B's diagnosis I received all kinds of books and advice.  Several of these resources were designed to tell pregnant women how to make sure their baby wasn't autistic.  My kid was here and he was autistic.  No need for those.  Trash.

I started with the big national organization they tell you to start with.  I wasn't that impressed.  Not a lot of helpful resources.  They did have a sibling booklet that I tried to get the bigs to read.  They weren't interested.  They had long ago accepted B. I asked if they would like to go to a sibling support group. Nope, they were good.  When we talked to the bigs about B's diagnosis, we got onto the topic of curing autism somehow.  Zac said "I don't think I want Brennan to be cured.  It would change who he is."

As far as I can tell the autism community is divided by this question: should we try to cure autism or not?  And, if I can be so bold, families and caregivers are on one side and autistic people are on the other.

What the big national organization did have was lots of scientific information about the causes of autism.  I didn't need that either. I didn't (and still don't) care what causes autism. I needed to how to live with autism. This led me to blogs of actual autistic people. They were so important to my understanding of autism.

The main take away from these autistic adults was this -
they did not believe autism is something they have, it is something they are
Curing autism would mean changing who they are at their very core.  The idea that autism should be cured diminishes who they are, it implies that they are broken.

My theory is that God created B just the way He wanted him.  Autism is a part of who B is.  Autism and B can not be separated anymore that B can be separated from being a boy.  You can't have one without the other.  Peanut Butter and Jelly.  Peas and carrots.  Hamilton and Burr. They are just linked together. I can't do anything to break that bond.

I am very much interested in helping B learn to get along in a world that is not designed for him.  But it's a fine line, a tight rope.  Preserving his uniqueness, personality and creativity while helping him fit in a little better.  I want to walk that fine line.  I want him to be successful, have friends and be able to navigate the world on his own.  But I don't want to do one single thing to change his incredible mind.
I must preserve the boy who is planning a garden for the spring.  The boy who decided that the garden will be 12 meters by 9 meters.  The boy who answered, when asked why meters, "Because I like meters." The boy who has assigned each of us a fruit or vegetable to plant and tend.

There is no way I want him cured.  Never.

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