Saturday, May 21, 2011

Showcase: Karen from Ow, My Angst

My name is Karen.  My blog is called "Ow, My Angst": 

What’s In A Label?

* Your child’s teacher has just approached you recently and expressed concerns about how your daughter behaves in class.  They recommend that you have her evaluated by a pediatrician. 

* Your mom has noticed some developmental differences about your son.  He never answers to his name no matter how many times you call him.  He makes long lines on the floor with his toys.  He does this with his little cars, and with those foam alphabet letters.  He does this with toys wherever he goes.  You always thought he was just being artistic. 

* You’ve been reading all the books, and you can’t understand why your baby girl has never pointed at anything.  She also has never brought anything to you for your approval.  That’s funny—toddler’s love to show off to their parents, don’t they?  Plus, she’s actually been losing some of her hard-earned language.  What does this mean?

* Your son has never been happy it seems.  From the time he was born, he’s been frustrated:  you could never put him down, he threw phenomenal tantrums if he didn’t get his own way, his schedule had to be rigidly the same.  If his clothes were not put on with the left sock first, he would flip out.  If your family didn’t set the table exactly the same way, he would have a melt down.  If you put your hair up in a pony tail, he would panic. 

And so we all have ended up in the same place, regardless of the path that sent us there:  the pediatrician’s office.  By the time your visit is over, your child has a label:  AUTISM. Of course, there are many different sub-labels under this great Autism umbrella:  PDD-NOS, Autism Spectrum Disorder, Aspergers Syndrome…high functioning, low functioning…  Or, maybe your child hasn’t been grouped in the Autism Club at all.  Maybe he or she has ADD and all it’s many sub-branches thereof. 

Whatever.  It all boils down to the same thing:  now your child has a LABEL.  To some it may be illuminating.  To others:  heart-breaking.  Some parents will accept right away. Some will adamantly deny this diagnosis.  Some grandparents will be great advocates.  Others will become almost angry; resentful that you even went for such a ridiculous evaluation.  After all, there’s nothing wrong with MY SON.  MY DAUGHTER.  MY GRANDSON.  MY GRANDDAUGHTER.

And you’re right.  But, now you know why they think and react differently.  Now you know why she is shoving kids on the playground.  Now you know why he mimics the other kids all the time.  Now you know why they’re just so damned frustrated and anxious all the time.  They see the world differently.  Not worse, just differently. 

When my son was three, maybe a little younger, my mother noticed that he would never answer to his name.  And when she asked him if he wanted a cookie, he would never simply say; “yes.”  Instead he would echo back part of her question to form his answer:  “want a cookie.”  Those long lines of toys he was making?  Well, they can still be artistic I suppose, but not when the “neuro typical” kids are taking those little cars and saying “vroom, vroom!”  Incidentally, “neuro typical” is a label too.  Bet you didn’t really think of that. 

So, we took him to the pediatrician.  She watched him play.  She asked him some questions.  She asked us some questions.  She told us he has “Autism Spectrum Disorder.”  She was brisk and casual;  “contact Community Living, and get him into a pre-school.” 

I immediately set to work on all the things I should do, and all the research that was necessary, and I worked hard to find even more empathy and understanding.  But, I was heartbroken. It was like the little boy I had known for three and a half years was gone.  Now I had to look at him in a whole new way.  Now I had to anticipate a whole lifetime of a child with a developmental “disorder.”  Now I had to take THE HARD ROAD. 


What had changed between yesterday and diagnosis day?  He was still the same beautiful child who was so happy since he had learned to walk, and really gain independence from his sometimes tiresome parents.  He still loved Baby Einstein, and Elmo, and Dora.  He was still my son.  I had never lost him.  It’s easy to be melodramatic, and fall into the self-pity trap.  I had never lost him. 

He was still the same wonderful, terrible, volatile, sweet, laughing, panicking child I’d been struggling with all along.  And now he has a label attached to him, which creates new paperwork every time he advances through school.  However, nobody ever thinks he’s a bad kid. When he gets really, really angry if a classmate teases him a little, nobody thinks he’s overreacting. When he shuts down and refuses to find a way to understand math, nobody thinks he’s being a bad student.  When he loses his mind because his girl cousins are playing with his drum kit, yeah—it’s frustrating, but we all understand why. 

Do I wish there was no such thing as Autism?  The hell I do.  I mean, IF this is something that’s caused by an increasingly more toxic environment, then yes, I would like to see an end to our babies being poisoned before they’re strong enough to fight back.  If it meant I’d have a little boy who didn’t nearly throw up from anxiety right before it was time to go to a birthday party he was invited to, then yes, I wish there was no such thing as Autism. 

But, if it’s just a part of our world, I wouldn’t change my Jack for anything. He’s super smart.  He has a fantastic sense of humour.  He has an extremely sophisticated appreciation of all forms of music.  He can tell me the name of nearly all the classical masterpieces, when I hum a few bars.  His drawings are absolutely astonishing.  Jack is seven now.  Would he even hold a pencil three years ago?  Absolutely not.  How many other kids draw Jascha Heifetz or even know who the heck he is? 

Every day parents will be introduced to the challenging world of a behavioural label, anew.  Don’t mourn who you think your child was, or who you think they would ever be.  Celebrate who they are, and use that label to take them farther than any of the rest of us could ever go without it.  Opportunity, after all, sometimes comes in mysterious packages. 


Unknown said...

I Love this! When my son was being evaluated, the doctor said the label didn't matter. The thing is, it did to me. I needed to know what I was facing, and I needed a community to turn to for support. Your last sentence says it all--opportunity does indeed come in mysterious packages.

karensomethingorother said...

thanks! You know, in some ways there are more opportunities/lenience for my son than there ever would have been for me. No, I'm not shouting; "no fair! Me, me me!" There are all kinds of labels. Imagine this: a child grows up with all the same quirks and issues our children have, but never gets a "label" from a diagnosis. But, that doesn't mean he/she doesn't have struggles and issues. There are plenty of people who grow up who were thought to be "weird" by all of us in school, but maybe they needed a label to remind us all to have compassion.

Mark said...

Beautifully written!
I kept thinking about my son, John, throughout this post. For the past 7 or 8 months now, he has been under evaluation. I am hoping for a diagnosis but the doctor doesn't want to rush one and I really do understand that. I am thinking Aspergers although Frederic is not. Either way, he still will be the same boy.
Great post!
Your Friend, m.

karensomethingorother said...

thanks for taking the time to read this Mark. It means a lot to me. I did not know this about your son John. That's a long time for an evaluation, but maybe that's a good thing. The ped. I saw made a diagnosis in about an hour. Hm...good or bad, I don't know. I love your attitude though, I have to say. Some of my extended family were less than supportive for a very long time, let me tell you.

DB Stewart said...

This is going to help lots of people. Good work.

karensomethingorother said...

thanks dbs--I hope so. It's a lonely place to be in, being the parent with that new diagnosis, and that feeling of 'now what the hell do I do?'

IamthatIam publishing... said...

All the wonderful things about you come out in this post. Your huge embracing heart sees the differences and rolls with them. Your ever so evolved mind knows the "in" that Jack fits is his own (so many parents think "in" is defined outside themselves or their home). Humor: top notch as always when you said, "Others will become almost angry; resentful that you even went for such a ridiculous evaluation. After all, there’s nothing wrong with MY SON. MY DAUGHTER. MY GRANDSON. MY GRANDDAUGHTER." because the ownership of others, and the possible attachment to how the world views them as "personal", has to end.
If we didn't have Jack, and so many other geniuses, we'd be hard pressed to find wonder - the world would simply be boringly "full." _Great post, Karen. You're amazing.



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