Tuesday, April 4, 2017

Light it up Blue

Lots of people like Autism Speaks, I just don't happen to be one of those people.  I'm not upset if you do like AS, it's your choice.  I like grapefruit Perrier, lots of people don't.  There's not animosity there, just different choices.

Like many families, we were pointed to Autism Speaks immediately upon diagnosis.  Because B's diagnosis was more a confirmation than a surprise, and because I'm a geek, I had already started researching.  I don't recall how I found Diary of Mom's blog but I did.  Probably it was her welcome post.  As I read more of her posts, I started to realize that I agreed with many of her positions.

Jess's main point that really resonated with me was who to look to learn about our kids.  Of course, we should listen to medical professionals, but shouldn't we also listen to autistic people?  Grown ups who have been where our kids are now?  Shouldn't we seek to know what they think about the issues that effect them?  One major criticism of AS has been the lack of people with autism in leadership positions.  No other group would stand for this.  Imagine the NAACP not including African Americans! Autism Speaks seems to assume that since some autistic people are non-verbal, they don't have anything to say.

AS also spends a lot of time focusing on what a huge burden autism is for families and caregivers.  Let me be clear: mothering B can be difficult but it is not a burden.  Mothering a 13 and 16 year old right now is not a barrel monkeys but not one is going to form a fundraising group and scare mothers every where with how hard it is to raise teenage boys.  Mothering is a challenge no matter who your kid is.  But, it's the joy of my life.  I wouldn't trade it for anything.

I appreciate that AS does a lot of research.  That's awesome.  But the fact is that my kiddo already has autism.  I'm not interested in curing him from it. I don't need to know what I could have done to prevent it.  In fact, I don't believe it was preventable.  I believe B is exactly who God intended him to be.  What I want to focus on his how to make sure B loves who is he and knows how to navigate his particular set of challenges.

That brings us to therapies.  As soon as B was diagnosed, it was recommended that he start ABA therapy.  ABA is SUPER EXPENSIVE.  I'm talking $75 an hour, not covered my insurance.  And time consuming.  B was recommended for 30-40 hours a week. That's in addition to school.  Good Gravy! Plus there were no good options close to us.  So we put it off and sought other options.  On Jess's recommendation (through her blog and Facebook page, not to me personally.  We not BFFs but we totally could be), I started reading what autistic adults thought of ABA.  The opinion that stuck with me was "dog training".  As I understand it, ABA focuses on the undesirable behavior in an effort to change or stop it.  Imagine spending 30-40 hours a week focused on your weaknesses! Given the fact that we want B to be proud to be autistic and that we feel like he doesn't need to be cured, ABA does not seem to align with our philosophies.

We prefer to discover why the behavior is happening and help B develop coping strategies.  For example, when B hits, we don't just say "don't hit".  We do that for sure, but we also try to figure out what made him angry enough to hit in the first place.  Right now he's having a hard time accepting information from his peers.  It makes him angry when someone is telling him he's doing something that he thinks he's not or asking him to do something he's not ready for.  He's lashed out at his classmates a few times in the past weeks.  So we've developed a strategy - go around the classmate and ask a teacher.  Don't get into an argument with the messenger, go to the source.

Every April AS asks you to light it up blue.  Blue is the focus of their efforts because blue represents boys.  Yes, more boys are diagnosed with autism than girls.  But girls are effected.  How must they feel when an entire month is dedicated to building awareness of a part of them, leaves them out?  A national organizations should seek to be inclusive of all effected.

So, I wouldn't ask you to light it up blue this month.  I will ask you to accept B for who he is.  And accept others for who they are, even when it's hard.  I invite you to ask questions to help you understand better.  I invited you dialogue.  But that's not a catchy slogan that markets well or raises millions of dollars or helps people feel better about themselves.  Sorry.  Not sorry.

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