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Monday, February 15, 2010

This Again

I keep hearing the same crap.

"Autism is not a disease."
"Autism is not a disorder."
"People with Autism are simply different."

I get it.
I do. 
I think (though at times it's debatable) that we are all entitled to our own opinions, no matter how idiotic yours may be.  Sorry.  I haven't fully reached the level of acceptance yet.  I'm still working on the first level; the "i'm not going to kick your ass everytime you say something that is deserving of a proper ass kicking" level.

But I digress.

See, there's nothing simple about Autism.  At least, not for my son. 
You know.
The one that still can't express his fears or tell me that his tummy hurts, or vent about the overweight playground bully who blocks the stairs to the slide and sports a plumbers crack. 
He's a month away from his 8th birthday, and he still poops in a pull up.
If I gave my blessing, he'd run across the 405 freeway, hair blowing in the wind, because the concept of being run over, of being killed, is meaningless to him (though I suppose, during rush hour traffic, he would just be able to crawl over the cars; it is Southern California after all).

He has dozens of quirks and stims; some that are even considered cute right now.  Because he is a child.  But my little boy will one day be a man, and I can guaraflippintee you that flapping his arms and grinding his teeth in aisle 5 at Target will seem far less "cute odd little boy" and way more "watch out for that freak" when he's sporting a five o'clock shadow.

This does not mean to say that i do not, more passionately than I ever thought possible, love this little person more than I can stand sometimes.  He is perfect in my eyes, because I am his mother.  Because he is a part of me.  Because there is a bond between us that only God himself can understand.  I have never heard him speak a sentence, but I understand him better than anyone.  When I hold him, the earth, in all of its splendor, ceases to matter until we break our embrace. 
What I'm trying to say is that I love the @#$% out of my son.

Which is why I don't accept his autism.
Listen carefully.
I don't accept his autism.
I accept him.
But to accept his autism would mean to cease trying to eliminate it from his life.

And you better believe that is what I'm trying to do.
Each day, as I send him on a bus to a class run by a teacher who pushes him beyond his diagnosis.
Each day, as I let his therapist Heidi take over and give him the tools he needs to succeed in life.
Each day, as I bear down and prove to him that I'm way more stubborn than he is and that he's not going to get what he wants until I hear him say "I" instead of pointing and whining and stomping his feet because I know he can and getting away with it just this time is the same as giving up on him.
Each day, as I tuck him into bed, his beautiful face engaged in an erratic slumber, and I whisper in his ear that I will do my best again tomorrow, that he made me so proud today, that he is not alone.

I don't proclaim to know everything (unless I'm knee deep in an argument with my better half.  Then I have no less than a Ph.D in whatever it is that we're at odds about) but I know my son better than you and so please, don't tell me that what we need is for everyone to accept Autism.  To me, that's like saying we have to accept cancer, or aids, or nuclear war.  When we stop fighting for answers and looking for solutions, we are admitting defeat.

I will not allow my son to be defeated.

I don't know if "they" will find a cure.
And if they do, I don't know that it will benefit my son.
I am a 24 hour at time kind of gal, because anything beyond that almost guarantees that I will spend the day in bed, eating my way through a box of Trader Joe chocolate and cream Jo Jo's (THE best cookies, EVER) wallowing in the unknown, overwhelmed by the idea that someday my son will need deodorant.

But if you have Autism, and you have an opinion on the matter, a website devoted to expressing your voice, a support group backing your choice, a say in what happens in your life and how you want to be treated and the ways in which society does or doesn't respect/accept/understand you......

well,
you've got a very different type of Autism than my little guy
and it sounds like you're right
you don't need a cure
and you're probably pretty freakin cool, just the way you are

but he does need a cure
even if it comes in little doses
microscopic miracles
thanks to hours of speech therapy and behavioral intervention, mind-fracking IEP meetings and a stubborn family whose love for this little boy is a testament to all that is good in this world

so that maybe
ten years from now
if you happen to run into him in aisle 5 at Target
you won't even know
it's him









 

2 comments:

Christibear said...

We can only hope for more parents like you out there. We have a daughter with "high-functioning" autism and she has made such great strides in the last five years since she came to live with us that most grown ups don't realizes anything is wrong - other kids though still avoid her. But your son sounds like our nephew, I would've sworn you were writing about him. We are holding out hope for him, too.

Betty said...

Well, my Nick will be 22 in April and he is still that same adorable little boy. He will probably never be any different, but he continues to bring sunshine into our lives and make us laugh constantly. He loves music and actually learns the lyrics...so, he will randomly repeat anything at any given moment no matter where we are. His newest one is smoochy, smoochy, I love you, which he said to three guys sitting near us in a fast food restaurant yesterday. Another good one from him is "my pants are on fire". Of course when I want him to say something his non-social attitude goes into action.