20 Things I Know Now, That I Wish I Knew Then (The Special Needs Parent-Ninja Arts)

 

Photo Cred:  ComputerWallpaper.org

Photo: ComputerWallpaper.org

 

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.

Kung Fu.  "Snatch the pebble from my hand..."

“Time for me to leave?”  Not yet, my Young Dung Beetle confused by this pastiche of mixed, martial-arts metaphors.

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.
  2. God does give you More-Than-You-Can-Handle.  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-ThanYou-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 siblingsextended familyclassmatesChurch, 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. 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.  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.)  Youtoo, have been emotionally, relationally, spiritually and judgment-impaired.  Your perceptions and sensitivities have been scrambled. The sooner we acknowledge this, the quicker we’re on our way to Up. If you want them to help your kid, you gotta get them to like you first.  Like it or not, we are our kid’s lifelong PR Rep to the neuro-typical 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, and 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)  You are what you think about.  Whatever is honorable, just, pure, lovely or  commendable; anything excellent or worthy of praise, think about these things.  Give thanks in all circumstances.
  17. Bitter + Blame = Victim Complex = Miserable.  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.  He was good all along.  Just like He said.  How ’bout that?  He redeems and repurposes pain.  Always.  We just have to wait to see it unfold.

 

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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10 Responses to 20 Things I Know Now, That I Wish I Knew Then (The Special Needs Parent-Ninja Arts)

  1. Darby Gilliam January 21, 2015 at 2:02 pm #

    You keep doing it!! Hitting the nail on the head, ministering Grace through your experience, communicating with passion and such delightful use of words, blessing me with it all! Not sure why you could ever question or lose confidence in your gift. Hope all of these entries will be in your book which I will read again and again and give to friends.

    • Diane January 21, 2015 at 8:00 pm #

      Thank you so much Darby! Your encouragement is always so precious to me. You’re right about those pesky doubts. I let that devil play waaaaay too long, uncontested,in my head. This is NOT his playground. Much love to you!

  2. AveMarisStella January 22, 2015 at 2:30 pm #

    Ohhhhh I wish I had time to be witty and insightful. For the mo’ I’ll just echo what Darby said and add a bullet point:

    Hey, kid. Yeah you: parent of a newly-diagnosed Special Needs kid. You aren’t going to die because you have a Special Needs child. It might feel like it some days, but you won’t. This is not a disease you’ve caught, but Basic Training — HELL WEEK, if you will — for what we SN Parents call “Advanced Training.” When you’re out of HELL Week, you can pretty much eat anybody’s lunch. Like a Navy SEAL, you too, have been chosen to be part of an elite Fighting Force. Only a handful of people in the world can do this job. And if you use every sleepless night, every moment when you want to give up (but don’t) and yes, every time you have pushed yourself so hard you just might vomit, for the salvation of souls, atoning for the sins of others and asking the Father for Mercy on the creation He loves which refuses to acknowledge Him? The devil will quake in his boots at just the *shadow* you cast as you stride through the mist, spiritual guns loaded, prayer grenades with pins pulled, ever-ready to do battle — NEIGH! THIRSTY FOR THE DEMISE OF DEMONS! Total — TOTAL — bad-assery… (Flicks on sunglasses, loads her demon-crushing shotgun with an audible *chuck-CHICK!* and flexes her biceps. Growls, low and victorious, the Semper Fi rebel yell, cool as a kitty…)

    Hoo-rahh

    • AveMarisStella January 22, 2015 at 2:50 pm #

      PS Edit that. Not my best attempt. 800 things going on right now. Don’t like the wording. Meh. Needs to be tweaked and polished. But you get my drift… No time to be perfect — another thing I’m actually glad I didn’t know then that I know now. Perfect is SO boring.

      Hey, special needs parent of the newly-diagnosed! Be authentic, not perfect. You’re gonna fall on your butt, be totally mortified and embarrassed and tell people things you never thought you *could* in defense of this incredible child (or, in my case, children) whom you love more than your own life. It’s hard at first. It’s ugly and uncomfortable and messy and it might give you an anxiety attack. HOWEVAH — it beats the tar out of the little false world you had created for yourself before this gorgeous creation came in to your life. No matter how authentic you thought you were, it pales in comparison to the REAL person you become as you journey with your child through all the muck of special needs. IT’S AWESOME. LIBERATING. LIKE BEING SPRUNG FROM JAIL. You start to see life for what it is and others for what they are — broken, needy and helpless without God. Just like you. Don’t get me wrong, the Navy SEAL metaphor still applies here. But I swear, if you let God mold you — really use you — through this process, you almost become an ambassador from another world with a message of Love from that realm. You see and experience life on another level — a supernatural level — that other people just cannot (sorry neurotypical parents) CANNOT tap into (I mean, I love yall more than my luggage, but….)
      ANYWAY.
      Yes, Holland ain’t Italy or Paris. But it beats the mess out of Cleveland 😉

      • Diane January 23, 2015 at 9:12 am #

        Woman, I like you. You are EPIC D: You have an EPIC HEART. No wonder God caused our internet paths to cross 🙂 BLESS IT and BLESS YOU!

    • Diane January 23, 2015 at 9:15 am #

      (Really wishing I could upload a swelling, Wagnerian-operatic background track to your amazing… epic…. comment! :))

  3. AveStellaMaris January 23, 2015 at 1:22 pm #

    😀 MWAH!

    A few things more (as I dont want to suck up all the oxygen in the room for everyone else who would like to have the Talking Stick)

    1) This is me:
    http://www.catholicnewsherald.com/component/content/article/50-news/roknewspager-viewpoints/5355-anita-veyera-living-simple-poor-life-keeps-our-attention-focused-on-god

    And this:
    http://www.catholicnewsherald.com/component/content/article/50-news/roknewspager-viewpoints/4012-anita-veyera-the-cross-symbol-of-our-salvation-and-our-radical-calling-as-christians

    I wasn’t joshing you. I do write a little every now and then.

    2) Since we are sharing play lists, I’ll submit a short one (if you have Spotify, you can queue these three easily. If not, it’s about $3 to purchase them all on iTunes)
    A) Lauryn Hill — “To Zion” Obviously, a SN parent is slightly different, but the blessing is the same. I cannot listen to this song without choking up — especially the bridge (“and I thank You for choosing me…” “Cause I know that a gift so great…”) Her oldest son’s name is Zion, BTW.
    B) Destiny’s Child — “Survivor” HOO-rahh
    C) Blue Highway — “Wondrous Love” Chilling and perfect. I want this song played at my funeral (not that I’m maudlin and dramatic — HO NO!)

    3) Irony:
    We talk a lot about how hard it is to survive parenting a SN child; how it equips you for almost anything. God didn’t pick perfect people who have it all together to do this Black Ops, off-the-grid, shadow-strike, elite-force job. He picked people like Gideon (the coward); Moses (the stutterer); Peter (the deny-er); Mary Magdalene (the, ahem, “career woman”); and you. And me. For a thousand reasons, right? But number one is this — that this superhuman work can point to a God Who hears; a God Who provides; a God Who redeems; a God Who IS Love. Only when weaklings and wretches do the impossible does the world call it a miracle. For those blessed with superhuman talent and a crack squad of helpers sitting on a lode of cash, it’s just a a Tuesday 😉 Irony? If we survive our kids, we have earned a few stripes. IF OUR KIDS SURVIVE US?! (Heh) They can do anything. The world is chump change to children — however disadvantaged — who survive being raised by lunatics like us. (And *THAT’S* one to grow on.)

    4) Authenticity, humility:
    Is there anything more embarrassing than the Cross? That God would deign take human form was His first abasement. But to be born in a feed trough, grow up in poverty amid whispers about His Mother, be rejected by His people and die such a horrible death for no other reason than Love…? ….So what makes us think we’re such hot (bleep)? Like we “deserve” anything? God gives us more than we could ever ask, dream, imagine, hope or desire. Truly, truly BEYOND our understanding. Because He. Loves. Us. Like a crazed, blinded, screaming-in-the-mud, distraught Beloved. There is NO LENGTH He will not go to to prove that Love to us. The Cross is proof of that. Can we not see or feel or touch this Love? Can we not hold the Cross close to us and weep for such a Love? And thank Him every day that He took our curse to the grave and rose again so that we could finally be with our Lover forever? GOOD LORD! How do you repay such a Love?!
    *WITH* love.
    It’s a miraculous thing, Love. And it makes you do crazy things. Like forgive, heal, wait in faith and PRAISE THE NAME OF THE LORD when all you want to do is bawl and beat your head against the wall. Suffering makes us more like our Beloved. We show how true our Love for Him is when we say, “Be it done to me according to Thy Word,” instead of, “You want me to do what, Lord? Ah, no. Didn’t sign up for that one. I’ll pass.”

    The cool thing about suffering (other than the likeness of Christ it creates in us) is that the demons look at our God-given perseverence are like, “Whoah, aint nothing stoppin this woman. Broad just keep goin. Uhhhh….” and they begin to back away slowly and think about who they can pick on that is a little more fun. …And then they send bigger, badder demons to do battle with us 😉 But God has already defeated them. We just have to remind ourselves and our tormenters that their place is Hell, for all eternity. We’ve already “won”.

    This season is one for winnowing; molding, shaping; pulling out all the dross and refining us in to gold. You can’t make gold without liquifying it under intense heat. If gold had feelings and nerve endings, pretty sure it would say, “ow”. The demons who take such delight in trying the Elect are the same angels who said, “We will not serve,” when they learned of God’s plan to send Jesus to earth to redeem us. It was scandal to them; they refused to serve the Lord. So they were cast into outer darkness and came to hate the Lord with an unquenchable hate. If we deny Him service, are we any different?

    Our service may not be perfect, but it is covered in Love. And if we keep trying to give Him our love — if we get up every time we fall, blubbering, on our faces in the dung — He will honor it. (How many times did Jesus fall under the weight of the Cross? Who was there to help Him up? So what are we afraid of? Dishonor? Failure? Embarrassment?) If we persevere in Love, He will infuse in us the same Divine Love He infused in Job as he said, “Though He slay me, still shall I praise Him.”

    And you can’t do better than that 🙂

    • Diane February 2, 2015 at 11:35 am #

      WOW,Anita. Just WOW. You truly have an EPIC heart. And you MUST have your own blog!! 😀

  4. Anonymous May 25, 2015 at 12:14 am #

    Simply awesome. Keep it up. You rock. Loved it

    • Diane May 25, 2015 at 12:43 am #

      Wow, thank you! Especially appreciate the encouragement to keep it up. SO harddddddd…. :/

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