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:
- 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.
- 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
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 🙂