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Wednesday, April 2, 2014

Authoring Awareness: April & Autism

This is my "official author blog" and as such I try to keep the posts here about all my fun (and not so fun) adventures in writing the next big thing.  But, outside of The Realm, I'm so much more than a writer.

I'm a mother.  

I'm a mother of a child on the Autism spectrum. 

So, I'm going to take advantage of April being "our" month to do a series on life on the spectrum.  I hope you'll find it educational, inspirational, and enlightening.  After all, what good is any author if he/she cannot write from the heart about all things they are passionate about?

By now, many people are aware that April is "Autism Awareness Month" and even those who aren't directly affected by Autism are into "Lighting It Up Blue" for the month of April.  That's great!  Awareness is a good thing!  But... is it enough?  Once you are aware of something, what do you do with that awareness?  Do you share the "awareness" with others?  Do you take action?  What's next?

While it's fine to be aware of something, it's not really an effective means of changing anything.
 I can be aware that it's raining.  I can then choose to tell others, "Hey, did you know it's raining?".  I can grab an umbrella and go out for a stroll in the rain... or skip the umbrella and go out there and get wet.  But can I stop the rain?  No.  I'm awesome, but I'm not that awesome.  The only thing I can do is learn all I can about where rain comes from and why.  Then I can accept that it is raining, and understand that rain is a necessary part of life.  It helps things grow... it helps life thrive.  I can do so much more than be aware.  I can learn,  I can accept, I can understand, and I can love the rain... even if it sometimes comes with a storm. 

So, as the parent of a child on the spectrum, I'm not going to try to make you "aware" of Autism this month.  I'm not even going to "light it up blue".  I'm going to bring more than awareness and hope that lighting up every shade of Autism Spectrum Disorders will help others accept and understand it.

Let's light up all the colors of the Autism Spectrum so that we can tell people that we are not only aware of Autism but we understand it enough to accept those on the spectrum and love them for who they are!

Let's look at the Rainbow that is Autism Spectrum Disorder:

Did you get all that?  Can you imagine having even one of these challenges? What about three?  Five?  All of them?  That's right, children and adults on the spectrum can have one, more than one, or all of the above disorders!  That's life on the spectrum.  You know how you dump a handful of Skittles from the bag and wait to see what flavor combination you get?  It's kind of like that.  You might have a child that has ADHD, Anxiety, and is Gifted.  The next year you might find your child has dipped his hand back into the bag of Skittles and pulled out a seizure disorder or depression to add to his taste of the rainbow.  You never know what you might get.  Every year that passes on the spectrum is like tipping the bag of Skittles and getting a new and different combination.

Look Mom! I'm a Cyborg!
(Overnight video EEG's to rule out Epilepsy)
My son has been diagnosed twice.  The first time when he was six years old.  At that time, he was diagnosed as "High Functioning Asperger's Syndrome with General Anxiety Disorder, ADHD, Sensory Processing Disorder, and Insomnia."  When he was ten it became clear that his rainbow had shifted when he began have a seizure type spell that would leave him dazed and confused.  It was back to the doctors/specialists for yet another review of his condition. 
They never really figured out what these "spells" were or why they were happening.
In the end they changed his diagnosis to "Low Functioning Autism".  His anxiety and ADHD were so extreme by this point that they thought his brain might be compensating to the overwhelming stimuli of the world around him by deciding to "shut down" whenever life became too "much" for his sensitive nature.  Dietary changes and new medications and supplements have helped.  His new "spells" caused him to lose a lot of his former subject knowledge. He forgot how to spell his name.  He back-slid from an 8th grade level math to a 1st grade level math.  We have a lot of relearning to do.  We might even need to repeat a grade of school.  Silver lining?  His reading went up from struggling with 2nd grade level to excelling at 8th grade level.  How?  No one knows!  Even the doctors are totally perplexed.  There's no explanation for it. 

That's life on the spectrum.  

Sometimes, there just aren't any answers.  
That infamous "puzzle piece" that has come to represent Autism?  It's under some fire lately.  Many think it's not appropriate to compare our ASD kids to a puzzle.  I can agree with that, actually.  My child is not a puzzle, he is a gift.  However, the puzzle piece is spot on in terms of the spectrum itself.

Life on the spectrum is often a puzzle.


Sensory Processing Disorder = Noise Reduction Headphones
Hey!  They go great with every outfit!

Coming up next:

Have you ever seen a kid totally losing it
in Walmart?

I'll introduce you to the mystery behind the Great Walmart Meltdown and explain what life on the spectrum is like for kids who suffer from sensory processing disorders.


Colette Pedersen said...

I love your articles on Autism! You have helped me in our family's journey on the ASD road.

S. R. Karfelt said...

Actually I've been asked to LEAVE Walmart because my kid was losing it. They were very polite, "Maybe you could come back after naptime."

Do you know how BAD it has to be to get kicked out of WM? LOL. My child didn't have autism, it turned out to be a stomach disorder, but my BFF has dealt with Autism and I've seen the toll it's taken on her. Love your post DMK!
You amaze me.

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