unlock and unchain my daughter

Before Evie turned three, she had some verbal language and she could sign quite well.  Then it left.

It left in little bursts so that we almost didn’t realize it was happening.

“Autism Regression.”  We were told.

“Epilepsy.” We were told.

And we accepted this.  We accepted it because these were things that we can deal with.  I accepted it because autism was a relief to hear.  And Epilepsy, well there is a med for that, right?

We started trying to use PECS (picture exchange communication system…I believe).  But I never really bought into it.

It was so rigid in its implementation.

Evie would play with the symbols which is strictly, not allowed.  They are crinkly and velcro and very appealing to a sensory seeking kid.  Heck they are kind of appealing to me to mess with!

We weren’t allowed to use it at home as she hadn’t progressed far enough through the phases.

To me, your language…your ability to communicate…cannot be withheld from you because you haven’t hit some magic number of successes with “trials.”

Imagine if you could only use your language at work.  Or at home.  Or in the grocery store.  You can only use your language at work because you haven’t mastered everything there is to master about language.  I’m sure I am over simplifying and misunderstanding the reason for the PECS rules but you get the point.  And I don’t care because that’s what it feels like.

Language needs to be accessible.

So I, unknowingly, handed over the key to my child’s ability to express herself.  And I helped to lock her up and chain her inside her own head.

It has been over 3 years since we started PECS.  Almost four.  Her current SLP, agreed that it wasn’t working at her IEP meeting last week.  He has moved onto a 3d object exchange system which he says is working.

I have my reservations about it but am totally in favor of throwing a bunch of stuff at the wall and seeing what sticks.

At the beginning of this year, September actually.  I started putting pressure on Evie’s school team for an augmentative communication evaluation.

At first they ignored my emails all together.  And when I would bring it up in a meeting, I would get blank stares and mumbles.

Then I started getting the arguments that Evie would not make eye contact if using technology.  That having outside agencies make recommendations would muddle things–I believe that, “too many cooks spoil the broth” is how it was put.

After expanding our team to include an outside psychiatrist who all but insisted that Evie have the evaluation, they finally sent in the referral.  Which only the school team can do.  Which is free by the way.  The evaluation just got scheduled yesterday.

The current argument is that; although, Evie is an IPad whiz kid–you should see her navigate around that thing–navigating the ipad and using technology for communication are two entirely different things.

Which I can see.  Sort of.  But can’t she learn to navigate to communicate?

More importantly, why the hell can’t we try it?  And try it with the same enthusiasm all of the other therapies that we’ve thrown at her have been given.

I don’t know if technology is the answer.  But I do know that Evie is capable of using technology.  I know that it can be accessible.  I know that it can be limitless in a way that PECS books and 3d objects are not.

I do know that it is worth a try and that my mama instincts are really keyed into this.

I’ve been told that Evie’s receptive language is almost as limited as her expressive language according to school testing.  But I am not buying that.

I see that she understands.  I think a good deal more than anyone, myself included, probably realizes.

The tests.  They are just tests.  Which may or may not be suited to Evie’s abilities.  Which may or may not reflect Evie’s true abilities.

My last post helped me to meet this fabulous group of autistic adults.  And you will be hearing a lot about what they say, and what they think when I have their permissions to share.

THEY, the adult autistic community, are the experts.  And THEY should have everything to do with developing therapies and education for autistic children.

If you’ve never been afforded the opportunity or worse taken the opportunity to get to know an autistic adult, this might seem outlandish to you.

If it does, YOU are so DEAD WRONG.

These people are so incredibly and mind bogglingly intelligent.  They are funny.  They are caring.  They are sweet.  AND they are compassionate.  A revelation to you if you have bought into the whole stigma that Autistic people lack emotion.

If you care about my daughter, Evie, if you care about me, you WILL listen to what these people have to say.  And you WILL accept that these people, and ONLY these people are the true experts on Autism.

And while no single person is exactly like another, including the individuals that comprise the Autism community, they have the closest thing to insight that we have available.

And they are an untapped think tank.  A pool of knowledge that we disregard.  That disregard in itself tells me, tells you, that we, the population at large, know almost nothing about autism.

This morning, I was linked to this.  And if you don’t have the time to go read it, let me surmise it by saying that Evie may not have “regressed.”  She MAY have shutdown her communication.  You can shutdown for seconds, moments, or years.  You can shutdown visually, you can become temporarily deaf.  Your receptive language can shut down.  Your expressive language can shutdown.

And why is this so important and exciting to me personally?

Because long ago, I handed over that key to my Evie.  And I haven’t even known that I should be looking for it.  And I haven’t given her all of the tools to look for it–instead I have chained her to rigid systems like PECS.  I don’t know if that key to Evie’s ability to communicate is still out there…but I think it is.

While she may never regain verbalization, she still says, “mama” and she still says “ball”.  And I know that she has so much more important stuff to say.

And you know what?  For the past three–almost four years, these Autistic adults are the ONLY ones that, I feel, have, genuinely, assumed that Evie will find a way to communicate.  They are the ONLY ones that have believed in my daughter’s abilities without ever meeting her or knowing anything but what they read on my blog.

I would say I am moved, by them, beyond words.  But look how much I’ve written.

So my eternal thanks and gratitude for these wonderful people.  And I’m off to look for the missing key and to free my daughter from the chains that bind her to rigid therapies in favor of those that are fluid and dynamic–like Evie.