Wednesday, 21 December 2011

Autism De'Light

Certain things worry me about Dayton, visible things...

The older he gets, the more I believe in his diagnosis; it's as though he's grown into it.

The way he fidgets because his underwear "pinches, but they're not too small or too big mamma."  The way he slouches his shoulders no matter how much I'm after him to sit up straight and "pull your shoulders back!"  The way his body is always itchy and he feels compelled to scratch like crazy at times, especially when cuddling with me on the sofa.  The way he doesn't process temperature (in the summer at 35 C's he's wearing a long sleeved shirt hoodie and jeans, in the winter at -35 C's he's wearing his winter coat unzipped).  The way he chews the skin off the end of his fingers (and it doesn't hurt him to do this), the way he stares off into space as though pausing a movie then pressing play as he continues from where he left off...  the way he writes, talks, acts around others...

If you sat down with my babe for half an hour, you'd say I was nuts.  "There's nothing wrong with him," is something I hear often...  But spend a week with him, and you'd notice these little things too.  And these little things all add up, don't they?

I woke up to the radio last week to hear a Charles Adler show in session about autism and how the 'high end of the spectrum' is being over diagnosed all the time.

Let's put this into perspective most of us can understand...

How many of us have struggled or been concerned about adding an extra few pounds?  How many of us have been ten or twenty or thirty or forty or fifty lbs over weight or more?  News flash:  The pain of being a little over weight is painful, just as being very over weight is.  Pain is pain.  As a parent, am I grateful that Dayton fits on the higher end of the autism spectrum?  Absolutely, but in some ways, I can't help but think if he fit on the lower end of the spectrum, people would make accommodations for him that they don't now, nor will they in the future.  Dayton is and will be viewed as a little 'odd.'  And that hurts.  A lot.

I've heard the term 'autism light' many times; you'd think I'd be immune to it, but it still makes me cringe when someone refers to PDD-NOS as autism light.  It's far from light.  It hasn't been light on Dayton.  It's been hard, very hard.

I am very fortunate to finally have a teacher that understands my babe and cares about him and his education.  We have faced others who really couldn't have cared less.  Even worse, I swear they even looked for an excuse to get him suspended so they wouldn't have to deal with him.  Knowing that a teacher does not care for your child is difficult, and I am so blessed to not have to deal with that this year.  I've been praying for four years to have a teacher like the one Dayton has now.  Four long years...  I thank the Lord for her every morning, EVERY MORNING.

Had Dayton been diagnosed with classic autism, I bet the previous four teachers would have made allowances for his behaviour and cognitive delays, but alas they did not.  Instead of wording their questions in a way where Dayton didn't take them 'literally,' they engaged in full out war with him and had a power struggle with a cognitively delayed child, constantly forgetting that even though Dayton may chronologically be seven, eight or nine years old, he was actually mentally comprehending of that of a five, six or seven year old little boy.  This resulted in extreme physical altercations between my child and the school staff, where one time it took four teachers to hold my then fifty pound child to the floor.

So for those parents who think my child has 'autism light,' I ask that you take a moment, bite your tongue and acknowledge the fact that my pain is just as real as yours.  My struggles are just as real as yours and my concerns, worries and panic attacks in the middle of the night are also just as real as yours.  My tears are wet too, just like yours.

As dad Paul always reminds me at the end of a phone call, consider yourselves hugged,


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