Saturday, May 10, 2014

If you know my son, please read this.

Asperger’s Syndrome.  Or, more technically, Autism Spectrum Disorder, because the DSM-V has moved Asperger’s into the ASD group now.  Mild.  But still.

I cried.

Not because my kid has been diagnosed with mild autism.  Not really.  I cried because of my fear of how he will be treated.  Viewed.  Discussed when he or his parents are not present.

I’ve worked in schools for over twenty years.  I know thousands of teachers.  I spend almost all my waking hours interacting with, training, supporting, and listening to teachers.  And I have also taught students who had diagnoses of autism or Asperger’s.  I’m not proud of the fact that I have also thought things.  Wondered what’s up.  Not really understood.

More than twenty years surrounded by education professionals is what gave me my initial intense gut-wrenching reaction.  People will hear that my son has Asperger’s or Autism Spectrum Disorder, and they will think or even say out loud, “Oh…..”  The knowing “Oh.”  The “Oh . . . well . . . yes . . . . . . “

The unspoken “I always thought so” and the slightly arrogant “so that explains it.”

I hear almost daily how educators talk about kids who learn differently.  If I am really friendly with them, I will sometimes point out, “That’s my kid you’re talking about too, you know.”

I should be grateful that we have a name to put to it.  I should be relieved that he will be eligible for services and accommodations he may not have been before.  I should be enlightened and brave and self-assured.  Because I’ve been in education for all these years, and I’ve read and learned so much.

But I cried.  Because I am his mother.  And I know how people talk and think and look at people who have autism or Asperger’s.

Some people don’t even believe it’s a thing.  Some people think it’s an excuse.  Some people think it’s weak.

The good news, I guess, is that for people who knew my son before, and see that he’s still the same great, funny, wonderful, amazing, charming kid, maybe they will have their eyes opened.  See, even a kid like him can have autism spectrum disorder.

It’s not a death sentence.  It’s not a bad thing.  And I am not upset that my kid has a diagnosis.  The more I reflect and read, the more I see it more clearly than I’ve ever allowed myself to before.

But I cried.  And I couldn’t speak.  And even later today, driving around alone, running errands, I nearly cried a bunch more times.

Because, in some ways, it feels like we just found out that we may be poised to wage a war here on any given day.  We may have to fight and struggle and defend his right and ability to have the same opportunities as everyone else.  Opportunities that aren’t just being allowed to do something or go somewhere.  Opportunities can also be the mere act of being seen to be just fine the way you are.  Or believed to be capable, despite a label of something that says you’re different in some way.  Or treated as equally valuable and valid.

I’m not proud of the fact that I cried.  I should be better than that, no?

But when every day you have to have at least one conversation about what your kid can’t do, or what he does differently, or what takes him too long (everything) compared to his peers . . . with his school, with his teachers, with your spouse, with the child himself, with family and friends, with strangers sometimes . . . you get tired, and then when someone says, “your kid has mild Asperger’s,” you cry.

I have more to say.  There’s another blog post in me.  But it’s about ALL the things we learned today.  First, though, I had to talk about how I reacted to what I was told.

And now I’ve done that.