Monday, June 3, 2013

How Matt Kau Helped Me Remember

Years ago, sometimes it seems in another life, I knew things.  I was freshly out of college, newly wed,

and had a job that I loved working with children and adults with severe cognitive impairments and

developmental delays.  I was bursting with ideas and enthusiasm.  I was passionate about my job. 

I was confident (I sometimes cringe when I remember how confident) in my knowledge.  I knew,

for example, that some of the primary dangers to the special needs population are stagnation and

compartmentalization. I knew that these amazing individuals were so much more than their disabilities. 

I knew that in many cases they could be extraordinary because of them, not in spite of them.  I knew

that I had been created by God to work with this population for the rest of my life.  Oh, the things I


Then I had “Dr. D.”  A little over a year ago, after two and a half years of therapy, testing, IEPs, and

whatnot, he was diagnosed with Autism Spectrum Disorder.  We are still in the process of learning

more and narrowing the diagnosis, but his particular disorder is very similar to Asperger’s Syndrome. 

I still remember the very instant that everything I knew disappeared.  We had been planning a family

outing for months.  We had been preparing him daily, and he seemed excited.  He handled the initial

entrance into the unfamiliar surroundings very well.  Yet, here we were after having had to carry our

screaming, rocking, completely freaked out son out of what should have been a great time for him. 

As I sat there, my face hidden so that they wouldn’t see me cry, I forgot everything.  It’s really quite

natural, because as amazing and wonderful and fabulous and LOVED people with autism are, they are

also exhausting.  I’ve heard it all.  “It could be so much worse.”  “You should be grateful for what you

have.”  “He will be just fine.”  Yes And yes. And yes.  It’s hard to remember those things when knocking

over a plastic dinosaur can run an entire day.  It’s hard to focus on the positives when you are rocking

70lbs of heartbreak because he just wants “to have friends like everyone else,” and can’t understand

why he doesn’t or when “the angries won’t let me out of my head.”   It’s hard to keep your chin up

when homework takes 4 hours.  Pollyanna is nowhere to be found when you work for two years to

teach him to not lose control at the texture of mud, then the local preschool kicks you off a public

playground because he is muddy.  So, there’s the ugly truth.  Somewhere in the midst of the therapies,

the tantrums, the diets, the disappointment, I became just as narrowly focused as the parents who used

to so frustrate me.

Enter Matt Kau.

Matt Kau is one of the main characters in my children’s novel “Hunter the Horrible,” soon to be released

by Hydra Publications.  No, that’s not correct.  He is not just a main character, he is a hero.  Matt did not

start out autistic.  In fact, my notes simply refer to him as “slightly overweight, glasses, exceptionally

intelligent, socially awkward video game obsessed.”  As I wrote, however, I learned that there was so

much more to this young man.  He knew, for example, that simply spouting off facts alienated him

from his classmates.  But they were the facts, and he simply could not NOT say them.  He lived, ate, and

breathed a certain video game. it consumed him.  This was not just a hobby; it was a fixation like those

that so often come along with autism.  When vampires swarm his gown, he is frozen.  After all, such

creatures simply cannot be real.  So, he has autism.  But you know what?  There’s a whole other side to

him.  He is fiercely loyal to those who show him kindness, ready to face punishment he doesn’t deserve

and move well outside his comfort zone to defend, and befriend, them.  He has a memory like a steel

trap, which allows him to see and remember things that others don’t.  Important things.  When others’

shenanigans have left them trapped in their houses and grounded for life, he translates the skills he

gained through his video game fixation into a real life solution.  He saves the day.  As I wrote this story,

I grew to really love this kid.  I cried with him when he was hurt, and cursed the snotty little blonde who

was mean to him.  I ground my teeth in frustration and cheers as he overcame his barriers over and over

again.  As I did so, slowly the things I knew came back.  I was able to grieve for my son, but to also see,

truly see, all of the hope that exists. I had an "a-ha" moment that helped me with my spiritual life, which had

 been suffering greatly.  I was able to see all the GOOD that lay before him.  I was able to

see how his disability will help him and I was able to see how much more than his disability he is.  One

I remembered all of those wonderful things I used to know, I became ready to be my son’s hero.  More

than that, I became ready to help him, and then let go of him, so that he can be the hero that he is

meant to be.

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