Who Am I? An Autism Mommy Manifesto

Yo, where my halo at??

Yo, where my halo at?!

I am the mother of a child with autism. When I think of “Mother of a Special Needs Child,” I envision a Zen-filled, Whole Foods-shopping, coupon-clipping, tree-hugging, Peace Corp-volunteering, ethereal woman with the patience of a monk. She graciously rears her homeschooled children with the peaceful radiance of a Raphael Madonna, replete with super-sized halo.

But I ain’t that kind of woman. I wear makeup. I shave my legs when I can. I get perms and wash that gray right outta my hair. One time, I got so fed up with my kid eating with his hands that I wrapped his fingers around a fork and sealed it into a fist with tape. Fortunately, my husband intervened (concerned, much?) and released our son before Child Protective Services found out.

I’m as vain, impatient and shrill as the next harried mom.  If the children in Proverbs 31 rise to call their mother “blessed,” my children rise to call out, “Mommy, wake up! I’m hungry.”  A gracious “Mother of a Special Needs Child?” Bah humbug.

I Didn’t Sign Up For This

I used to think this was some cosmic joke; an epic mismatch of child to parent. As a college theater major, I thought myself too flighty for the mommying type. But I became a Christian and married the church worship leader.  Yet somehow, we ended up producing a non-verbal, asocial, high-maintenance kid with weird sensory issues who dreads amplified music, let alone going anywhere near an auditorium or church. Somehow, a kid like him got paired with parents like us. We didn’t get the musically gifted, artistically inclined and socially glib child we were genetically destined for. We got this one instead.

So what’s up with that, God?  Now, I read other accounts of special needs parents. They all waxed on how their disabled child was the best thing that ever happened to them, suffering was the greatest blessing of their lives.  Blah, blah, blah. To be blunt, I suspected they were delusional.  So defeated by their unrelentingly harsh circumstances that they’d become mentally broken themselves, desperately needing some opiate to endure their bleak lives.

Fake It ‘Til You Make It?

Maybe some folks already think this of me.  However, I think we’re generally known as authentic and joyful people. At least I hope our friends, family, and colleagues don’t think we’re faking it, just because we serve as church leaders and all that. Then somebody best give us an Academy award everyday, because raising a child with autism Can. Totally. Suck.

I am all about keepin’ things real. If something hurts, it hurts. No one can sustain faking their way around pain for too long. No one’s that good an actor.

When Jeremy was diagnosed with autism at age two in 2004, we had just stepped off a plane from serving abroad on foreign missions.  I was in the middle of a career change from Silicon Valley HR to teaching when my plans got hijacked by another (unplanned) career change: Autism Mommy/Case Manager/Advocate. I shored up on my faith, sagely submitting to my new calling of, “Help The Poor Child.”

God Flips The Script On Me

Five years and a profound faith crisis later, I’ve joined ranks with those, “delusional,” special needs parents. After a handful of the most intense and painful years of struggle, heartache and –let’s be honest–my fair share of cursing, pity parties, Why Me’s and Why God’s, I’ve become utterly convinced of two things:

  1. This kid came earmarked for me;  hand-picked and custom-matched exactly the way he is, and commissioned by God to this planet as a missionary for ME, for my soul, my faith, my character, my marriage, my extended family and church community. I’m not here to help fix him.  Rather, he’s been instrumental in helping to fix ME.
  2. God is real. And God is Good (and I’m talkin’ about the JESUS God. There, I said it.) The Bible is the Real Deal and God has EVERYTHING to do with the messy areas of our lives. He is real enough and big enough to take it all on.  Even autism.  He can even redeem it, in a way that only a Big God can.

I must be:

A) Pollyanna-faking it-lying
B) Crazy-delusional-brainwashed

OR

C) God really is that Real, and that Good.

Reconciling An Ancient Book With A Modern-Day, Gritty Life  

Why me?  Why my child?  What does the Bible have to do with the gritty realities of special needs parenting?  If God exists, if He is good, how could He allow this to happen?  And how dare He claim to understand everything I go through?  God never raised a disabled child.  His own Son was perfect.

When my son was suddenly diagnosed with autism, my faith was disabled, too.  We both needed intensive rehabilitation:  Jeremy’s was physical, cognitive and developmental.  But my recovery needed to be spiritual.

Five years would pass of howling at the Sunday School god of my childhood, taking to task every audacious (irrelevant?) claim of the Bible with indignant fists raised to the skies.  In time, God and I would make peace.  We’re quite good now.

Navigating life A.D. 299.00

C.S. Lewis once said,

“Friendship is born at that moment when one person says to another: “What! You too? I thought I was the only one.”

I’d be honored to have you join me in working out matters of faith, family, and life… post-diagnosis code 299.00 (medical code for autism.)

 

…Now, what’s your story? I’d be honored if you shared it 🙂

 

 

 

 

 

 

 

 

 

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2 Responses to Who Am I? An Autism Mommy Manifesto

  1. Anonymous February 8, 2014 at 11:18 pm #

    this was wonderful, I so enjoyed it. I have a slightly special needs child. I have been told by more than one therapist to BACK OFF. Like you, I have read “Tiger Mom” and was both appalled and yet oddly intrigued by it. I was a TIGER MOM to my oldest child. I wanted to use the same practices for my middle child, and it was just not working. The more I did the more she withdrew, the more depressed she became. I am now faced with a child that is not college bound, and is not vocational school material. I am waiting for her to mature, and yet, I am not supposed to do anything to push her towards maturity…(remember…BACK OFF). I found myself just giving up, and retreating, on my entire family, (for many issues, but this was one of them). I am not sure what you should do, or how you can BACK OFF and yet still parent and prepare your child for adulthood. I have expectations, but I also have to accept a child who is so counter to all I wanted her to be. I have to have faith she will find her way. I struggle with codependency, and yet I am not sure how a parent is NOT codependent with their child. At some point, you, (a general you) has to realize that you did all you could do, and no medication, or therapy is going to change things.

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