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.


glenns said...

no worries sis. He'll be fine.

Kevin Brookhouser said...

Powerful stuff here, Diane. Much love to you and that really cool kid. Can't wait to work on some new dance moves this summer.

Leroy's Mom said...

When my son was diagnosed I cried. It's part of the process. I had a friend tell me I'd be depressed for a while (it took her about 6 months), but I was pretty reconciled to the diagnosis in less than 6 weeks. We all handle things differently, but you seem happy with your son, and I think that will go a long way to working through it.

Joe said...

Awesome post and hugs from afar. Cam is awesome and will always be awesome.

Nancy Minicozzi said...

Such a moving post. Sending hugs to you and your family. You are strong and you will be able to handle this. Remember he is still the same great kid he has always been. Enjoy your Mother's Day.

Kate Sprague said...

I had a great time with your son last summer at CUE Rockstar Tahoe. I learned quite a bit about the tsunami in Japan! He's bright and friendly and personable - I'd love to have him in my class!

Michelle Longo said...

I've never met Cam in person, but I feel like I have because of your stories. I think crying is a natural reaction and there's no shame in that. You are the perfect mom for Cam, you're just what he needs. I have no doubt that things will be OK. Life will always have bumps in the road, but you have a strong family, a strong faith, and you are just plain strong. Sending many hugs.

Unknown said...

I cried too. #muchlove

Adina Sullivan said...

You cried because you care, and there's not a thing wrong with that. He's lucky to have a mom who knows so much and will stand up when necessary and step back when that's best. Even if you doubt those decisions, they aren't wrong. You're lucky to see past the label to the amazing things he does and incredible person he is. Love and hugs Diane.

Melanie Dair said...

Hi Mrs. Main,

I know that you only remember me as your 5th grade student from MCS, but I wanted to leave a comment. I'm now studying in the School of Social Work at SJSU and it is unfair that you have to feel all the emotions you wrote about. Thank you for sharing with us. I'm not a mother, but I imagine it must be very tough to hear this news after watching your child grow up.

I have had some brief interactions with children who learn differently or are on the autism spectrum. What really impressed me about these children are their ability to imagine and their endless ideas. I only know your son through your facebook posts on my feed, but from what I see, he looks like an amazingly creative child who is passionate about things he loves to do.

Also, bullying in schools has a soft spot in my heart, as I had to deal with this issue first-hand as a child. You can bet whatever you want that I will do my best, as a future social worker, to advocate for children who are at risk of being victims of bullying! I hope that God will work in this situation to make it something beautiful!