From time to time I get asked, “Do you have any advice for a Special Needs Parent?” It’s usually from someone freshly reeling from their child’s diagnosis, or a friend who wants to be supportive. BLESS THEM. To which I say (or think),
Ohboyohboyboy! (and start mentally salivating.)
I devoted this blog on Special Needs parenting to discuss exactly that: The emotional, practical, relational and spiritual blows — and unfathomable blessings– that come with it.
We are now twelve years in to Special Needs Parenting. But just like David Carradine’s Master intoned in the old TV show Kung Fu, “When you can snatch the pebble from my hand, it will be time for you to leave,” I still feel somewhat like an awkward young dung beetle, a mere Paduwan stumbling towards mastery. Twelve years later, I’m still here, doggedly plugging away at the Special Needs Parent-Ninja Arts.
Join me now, as we wax on, wax off: 20 Random Things I Know Now, That I Wish I Knew, Post-Diagnosis.
1. Grieving is necessary for healing.
Let yourself. As long as you need, until the muck you’re wallowing in dries up. You have to bottom out sometime. The quicker you let yourself get there, the faster you’re on your way to Up. So, go on. Give yourself permission to do The Ugly Cry. Find a safe place (safe people) and get plenty MAD if you need to. If you don’t, it’s like suppressing the urge to vomit, emotionally. You’ve got to purge all that heartache-bile out, before you can really start to feel better. BTW: Dads grieve differently than moms. For the love of mercy, LET THEM. Life just kicked them in the family jewels. That’s an excruciating doubling-over most men don’t recover from easily. Women can’t understand that kind of pain, just like men can’t understand childbirth. Let’s respect what we don’t understand. Give him time and space to recover. Quietly. With dignity.
Surprise! He knows that sometimes, it’s the only way we get humbled, stretched, grow, and (end up having to) tap into the supernatural: Him. He’ll permit us to be struck down but not destroyed. Prosperity Gospel be damned (Not cursing. Meant literally.) It’s like that old country song, “I beg your pardon? I never promised you a rose garden…” Read Hebrews 11-12 if you don’t believe me. And then there’s Jesus. Who could handle that? He didn’t insist on His way either, but Thy Will. And veritable LOADS of cosmic, eternal good came from it.
3. The Upshot to Chronic More-Than-You-Can-Handle
You become pretty adept at handling Chronic More-Than–You-Thought-You-Could-Handle. Dare I say, even badass? (Acknowledgement of borderline cursing. Apologies if it offends.) In the realm of mainstream parenting, you’re a Green Beret among rank ‘n file foot-soldiers. A Wizard in a Muggles world. We’re talking MAD SKILLZ. Crazy-off the charts-savvy-parenting-ninjas, you are. Only more patient and tolerant. “Booger walls,” typical toddler tantrums and diapers are childs play, comparatively. Pedestrian. Junior Varsity. Relative banalities, my excellent friends.
4. More Upshots
Your spouse, typical siblings, extended family, classmates, Church, neighbors, and/or friends will also become badass by association. They cannot help but reflect and multiply the exceeding badassery that emanates and ricochet from all present. The irony is, we’re just trying to survive. And the irony of ironies? Those “weaker” ones were necessary –critical change agents– to enable such awesomeness.
5. You’ll learn how to fight, pray, and/or suck it up like a champ
You just have to figure out which to do, and when. Like Kenny Rogers sang, “You gotta know when to hold ’em. Know when to fold’em. Know when to walk away. And know when to run.” Or in Kelly Clarkson’s contemporary parlance, “What doesn’t kill you makes you stronger.” You’ll surprise yourself. Step aside, Chuck Norris. Special Needs Tiger Moms are in the house.
6. Unbelievable people will come into your life
Stunningly cruel, clueless or self-absorbed people. Also, stunningly generous, compassionate and exquisitely helpful people. Both will take your breath away. Both will make you cry. Neither will come when you expect (you might expect one, but get the other.) But all will mold you for the better.
7. Friends are the family you choose yourself
Find your village. Get with Your People. Trust me, they’re out there. You need others who “get it,” but they may not be able to help much (because they’re dealing with the same Chronic Stuff as you.) You equally need others who don’t get you, but can help (because they’re not dealing with the same Chronic Stuff as you.)
8. Don’t expect people to get it
Unless they’re you, they can’t. Mind reading is a lost art. The sooner we give up expecting it, the better off we’ll be. Besides, that annotated 5,000 page manual, How To Appease a Wounded, Sensitive & Prickly Special Needs Parent: 101 Ways To Make Them Happy, is no longer in print on Amazon. It’s our own unrealistic expectations that make us miserable. Expect precious little. But gratefully, humbly, receive anything beyond as bonus. Entitlement sucks (everybody loses.) But unexpected gravy is bliss.
9. Overactive Mommy Guilt Gland
Every mom’s got one. Ours kicks into hyper-drive the moment we morphed into the Special Needs varietal of Mom. We ALL feel like we’re failing. You’re not the only one. It’s the voice of The Enemy in disguise. Be ye warned: We will be at war to subjugate this toxic Influencer until the day we die.
10. Sometimes, the problem is YOU. Us. Me.
Not them. Not even your kid. You. Me. Us (Oh, the shameful, mortifying tales of unhinged control freakery I could tell. Particularly from those panicky Early Intervention years.) We, too, have been emotionally, relationally, spiritually and judgment-impaired. Our perceptions and (hyper?) sensitivities have been scrambled. The sooner we acknowledge this, the quicker we’re on our way to Up. If we want them to help our kid, we gotta get them to like us first, and last. Like it or not, we are our kid’s lifelong PR Rep to the neurotypical world. We can’t afford to screw this up.
11. “What did you do all day?”
Dads, just don’t. Them’s fighting words. Trust us on this. We’ll give you space on the man-grieving thing. In exchange, we ask you to respect that which you can’t possibly understand. Deal?
12. This is bigger than you. Learn to ask for help
Or at least graciously accept it, regardless of how, “This isn’t the way I would do it,” it may come. Remember that out of print Manual in point # 8? They didn’t read it. Generally, people want to help. They’re just clueless how. It’s ok to spell it out sometimes. It’s our own pride and shame, our deep-seated fear of being exposed (of appearing Not Together Enough) that will be our undoing. Give them a chance to flex their compassion muscles. You’re doing them a favor, really. And if they still don’t? Go back to point #8. Surrender is at the heart of Christian Zen (lots of artistic license here.)
13. Suffering and selflessness is good for the soul
Comfort and complacency kills. It makes no sense (especially to us coddled Americans.) But look at who and where we are, then. Truly great people got that way because they weathered through Chronic-Stuff-They-Thought-They-Couldn’t-Handle. They tapped into the supernatural (Points #2-5.)
14. Rest and Fun are also good for the soul
Fun is underrated. Fun is therapeutic. Don’t over spiritualize. Special Needs parenting is hard. Have the fun. Savor it. Squelch that Overactive Guilt Gland (Point #9) and tell it to stick it where the sun don’t shine. Heed the flight attendants who impart profound, existential wisdom: Put your own mask on first. Because you’re no good to anyone, dead. Or worse, shrill, shrivelled and shrieky. “Special Needs Mommy Dearest,” holla!
15. Be grateful where you are
There will always be someone better off, and always someone worse. And it could always be worse. Pay whatever you have forward, because someone did for you.
16. Grateful + Humble = Acceptance = Happy (or at least content)
17. Bitter + Blame = Victim Complex = Miserable
The world owes us nothing. It sucks, but is no less true. Entitlement sucks for everyone. Folks are quick to sniff it out. Passive aggressive Debbie Downers stop getting invited to parties, I’ve learned (Point #10.)
18. The worst thing that ever happened to you, can become the best thing that ever happened to you, if you let God redeem it
In the words of Sir Winston Churchill, “If you’re going through hell, keep on going.” Special Needs parenting is a blessing. I know, “SHUT. UP!” Right? But that Special Needs Holland business is truth. It feels smarmy and supremely irritating when you first hear it (someone will forward it to you.) And although it feels more like Special Needs Beirut for a while, just ride it out. You’re not there yet. But you’ll get there. I promise.
19. This is the toughest job you’ll ever love
Sorry, Peace Corp. We are hijacking and reappropriating your tagline.
20. It turns out, God is good
What did I miss? This was only 20 Random Things. What do you know now, that you wish you knew then? What key advice did someone share with you? Show your stripes, Special Needs Parents. I know you got’em…
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