Me? A Special Needs Parent?! You Gotta Be Kidding Me…
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 home- schools her well-mannered children with the peaceful radiance of a Raphael madonna, replete with super-sized halo.
But this Special Needs Tiger Mama? She ain’t that kind of woman.
I wear makeup slavishly, but shave my legs only when I’ve got time. I’ve been known to get my kids’ lunch at the drive-thru, then repackage it into eco-friendly Tupperware for school. And every four weeks, I wash that gray right outta’ my hair.
One time, I got so fed up with my firstborn eating with his hands, that I wrapped his fingers around a fork and sealed it into a fist with tape. Alarmed, my husband intervened. He released said utensil-deficit child before Child Protective Services found out. The poor babe earned himself a reprieve, and Harsh-Shrill-Mommy earned herself a time out. Just like I
wanted needed wanted needed.
I Didn’t Sign Up For This
I used to think this was some cosmic joke. An epic mismatch of child to parent. A college theater major, I considered myself too flighty. Surely not the hallowed mommying type. But I became a Christian and married the church worship leader. Somehow, we ended up producing a non-verbal, asocial, high-maintenance kid with funky sensory sensitivities, who dreads amplified music, much less stepping anywhere near an auditorium or church. Somehow, a kid like him got paired with parents like us. We didn’t get the artistic, musical and socially glib child we were genetically destined for. We got this one instead.
So, what’s up with that, God?
Now, I’ve read accounts of other special needs parents. They waxed on and on how their disabled child was the best thing that ever happened to them, how suffering was the greatest blessing of their lives, blah, blah, blah. To be blunt, I thought they were delusional. So defeated by unrelenting, mind-numbingly harsh circumstances they’d become mentally broken themselves, desperately needing some spiritual opiate to endure their bleak lives.
Fake It ‘Til You Make It?
Some folks might think this of me. However, I think we’re generally known as authentic, stable and joyful people. At least I hope our friends, family, and colleagues don’t think we’re faking it, just because we’re nice, church people and all that. Then somebody best give us an Academy award everyday, because raising a child with autism Can. Totally. Suck (sometimes.)
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 in 2004, we’d just stepped off a plane from foreign missions. I was in the middle of a career change from Silicon Valley HR to teaching, when my plans were hijacked by another <unplanned> career change: Autism Mommy/Case Manager/Advocate.
Shoring up and dipping down into the deep — so righteously deep! 😉 — reserves of my faith, I sagely submitted to my new calling: “Help the poor child.”
Boy, would God flip the script on me…
Faith Crisis: An Ancient Book vs. Modern Life
Why me? Why my child? 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. What does an ancient Bible have to do with the gritty realities of special needs parenting?”
When our son was diagnosed with disability in 2004, my faith got crippled, too. Thoroughly wrecked, we both needed intensive intervention and rehabilitation. Jeremy’s was cognitive. Mine was spiritual.
Years would pass of me howling at the Sunday School god of my childhood, taking to task every audacious (irrelevant??) claim. I shook my fists at the heavens and dukked it out with Him for years. But eventually, not unlike Lt. Dan from the movie Forrest Gump, God and I would make peace.
A New Trilemma Dilemma
Now it appears I’ve joined ranks with those, “delusional” special needs parents. After intense struggle, heartache and –let’s be honest–my fair share of cursing, rager-raving pity parties, Why Me’s and Why God’s, I’ve become convinced of two things:
- This kid came earmarked for me; hand-picked and custom-matched exactly the way he is, commissioned to this planet as a missionary for ME, for my soul, my faith, my character, my marriage, my family and my church community. I’m not here to fix him. He’s been instrumental in helping to fix ME.
- God is real. And He is Good (and I’m talkin’ about the JESUS God. There, I said it.) The Bible is the Real Deal and 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 Enough God can.
I must be:
A) Pollyanna-faking it-lying
C) God really is that Real, and that Good.
Epilogue: Life Today, A.D. 299.00
God redeems pain. The very thing I feared would wreck our lives, He has repurposed into a passion to comfort and empower other Special Needs families, with the comfort I received from Christ.
In 2018, I’ll be publishing Faith Rehab: Spiritual Recovery for the Special Needs Parent (Worthy Publishing).
I’m also Special Needs Ministry consultant/advocate/zealot, which means I’m happy to serve as a translator/tour guide for the typical (“normal”) world, in helping to decode the delicate complexities inherent to Special Needs families (“Why are they so _____ and _____?”) Look, I know we’re hard to “get.” We’re still unpacking this New Normal for ourselves. What say we figure out how to do life together, and mutually benefit one other?
Some of my favorite writing and speaking topics include:
- Special needs “extreme parenting” & family life. Experiencing the sacred amidst the mundane (and sometimes cray-cray.) Uh, how is this a “blessing”?
- Relevance and application of the Bible to everyday challenges. Integrating “holiness” with the practical (yucky) realities of life on a broken planet. Discipleship/growth, surrender, freedom in submission.
- Defiant joy: Perseverance, hope & gratitude despite grief, loss, guilt, shame, fear, isolation and suffering. Mining for delirious humor amidst senseless sorrow (if we’re gonna cry, we might as well cry laughing.) When life hijacks our joy, hijack it right back, defiantly.
We’re all “broken”
Not everyone has to contend with disability. But everyone gets “crippled” by something, ambushed by some crisis or hardship that makes us go, “HUH?! WHY?” Whatever the visible or hidden disability –be it physical, emotional, relational or spiritual– I’m honored to have you join me in navigating life, faith, family and relationships, post-299.00 (autism diagnostic code.)
I was reluctant at first, but insanely grateful, privileged and honored to get to intersect the most painful, transformational part of my life with others walking the same road,
You make me laugh and cry AND pray. And you make me want to FIGHT HARDER…”
~ (Treasured) Reader comment
I look forward to experiencing together, what C.S. Lewis said,
Friendship is born at that moment when one man says to another: “What! You too? I thought that no one but myself . . .”
― The Four Loves
Thanks so much for reading. May God bless you and yours,
Diane Dokko Kim