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Hero work is draining.  Photo cred: maxresdefault

Hero work can be draining.  Photo cred: maxresdefault

 

Confessions of a Respite Groupie

Hello.  My name is Diane.  And I am a self-professed Respite Groupie.  If there’s a church respite event within a 45-minute radius of our home:  We.  Are.  There.  “Neither rain, nor sleet, nor dark of night…”  Whatever, man.  We are there.   It’s the only event I’m ever on time for.

It blows my mind that a group of strangers would sacrifice precious weekend hours to watch my complex, high-energy, high-demand child with special needs (and his sibling), to let me decompress for a few hours.  And at no cost.  Parents like me usually can’t find people to pay, willing to do it.

Either at check in or at drop off, invariably I get asked,

“So, what did you do with your time off?”  

Honestly, it’s like being handed a $100 bill and being asked how I’m going to spend it.  My blank stare betrays a mind, frenzied with possibilities.

What do bone-weary, 24 x 7 caregivers do with this precious and rare four-hour block?  It’s a fair question.  In the immortal words of Inigo Montoya from The Princess Bride,

let-me-splain-meme-generator-let-me-esplain-no-there-is-too-much-to-sum-up-c93091

 

The Quickest Four Hours Ever

Since drop off and pick up times at these blessed events are hurried, with little time to exchange pleasantries before my children are off and running (with startled volunteer in hot pursuit), I rarely get to adequately express my thanks for these unknown, and sometimes unnamed volunteers. These inconceivably good people who signed up to sweat it out with my kids for a few hours, so I wouldn’t have to.  In today’s post, I hope to convey why this is such a big deal.

For the first few respites we ever attended, I hovered nearby like the anxious, control-freak, special needs mother I am.   If modern-day parents are helicopters, then Special Needs moms are highly evolved stealth bombers.  Who else could handle this complicated, non-verbal bundle, other than his mother?  Even I could barely manage.

I needed to gauge the level of terror in your eyes (the terror in my eyes?) at receiving this complex, delicate and precious bundle that is my child.  So complicated and precious is he, that I emailed the respite coordinator a PDF file detailing his idiosyncratic behaviors, “triggers,” eating habits, toileting and communication baselines. Believe me, it required uncharacteristic restraint to whittle down my initial, five-page manifesto into a digestible, single sheet FAQ (single-spaced, font size 8.)

When you seemed ok enough (and I confirmed you had appropriate footwear: RUNNING shoes), I bolted faster than you could say, “free childcare.”  I didn’t have anything particular planned.  I mean, I didn’t even think we’d make it that far.

But after a few years of stalking respites across three local area codes (is there an app for that?) I am now a Respite Pro.  I practically do drive-by drop offs (“Go, go, goooo…!”) I’m outta there lickety-split.

I can’t speak for other parents.  But here’s a sampling of What We’ve Done During The Quickest Four-Hours Ever:

After dinner, DH and I wandered Target. We didn’t know what else to do with ourselves.  Self-directed, unstructured time, where we get to decide what to do (and not the therapy schedule) had become outmoded, foreign.  It’s like gravity gave out, and I forgot to put on underwear that day: something so central to my personhood was missing.

Another time, I recouped a thousand dollars.  Graced with undistracted time to finally deal with piles (and piles) of medical bills and paperwork, I discovered we’d been incorrectly charged on an invoice by almost a grand, a clerical error I now had mental bandwidth to rectify.  Thank you, Team Respite!

For a Valentines Respite, my husband was sick. Our “date” consisted of him being permitted to rest back at home. Meanwhile, I dumped –ahem, dropped off– the kids, feverishly ate some drive-thru Taco Bell, then sped to the nearest Starbucks.  I sat. Then I sat some more.  Eventually, I caught up on a few emails and posted captivating Facebook Status updates (“RESPITE. I am SITTING. God is GOOD.”)  I sat just because I could.

I’ve heard of other parents never leaving the respite parking lot. They drop off their kids and return to their car to sleep until pickup time. I get that. I really do.

Yet another time, we pulled into the nearest taqueria to savor the unspeakable bliss of being off-duty. No strange noises or socially inappropriate behaviors to deal with. No strangers staring or making rude comments. No profuse apologies over shredded Cerveza posters, or fending off our boy from scooping his hands into the salsa bar. Just mariachi tunes and spacing out over a shared carnitas. We barely spoke, it was so exquisite.

 

Shawarma, Salsa & Sacred Silence

We always look forward to respites, where we’ll finally be able to talk about important matters without interruptions, interventions or spills.  I can even go to the bathroom when I want.

But when we get there, it often comes down to mariachi and glazed-over silence.  The savoring of quiet.

Ah, such luxuries these respites afford!

Do you remember the shawarma scene from The Avengers? After saving the planet from alien invaders, they’re wiped 

Respites are to special needs parents, what shawarma is to The Avengers. 

 

Bouncers and Buddies and Boys, oh my!

Drafted vs. Enlisted

I did not sign up for special needs parenting.  I did not volunteer for this. And as grateful as I am now for the unique journey that is my life, I’m not sure I would ever choose it.

But Dear Good and Kindly Respite volunteer:  You did.  You chose to be here.  You chose to swap four hours of your life for mine.  I was drafted; you enlisted.  Even though we’ve never met, and may never converse beyond hasty introductions, you gave up your precious time to hustle after a someone else’s complex kid: my complex kid.

Sometimes I find out you’re a teacher, therapist or Special Ed professional.  Sometimes, you’re a teenager persuaded by your enthusiastic Youth Pastor (when I was in high school, my biggest priority was acne-abatement and collecting Duran Duran posters.  But I digress.) Other times, you’re a neighbor, an uncle or grandparent to someone with a disability.

Sometimes, you’re even a fellow special needs parent, who wanted to give back by blessing other weary special needs parents.

Whuuuuuuut…?

But whether you had zero experience with special needs or you’re an expert, you came with a heart of compassion and willingness to serve.

 

Thank You.  God Bless You

So thank you.  God bless you for your kindness. For doing something selfless, sacrificial and extraordinary for someone who could never pay you back — except for my profuse gratitude, and “gifting” you with four hours of unplanned cardio 😉

You’ll never know this side of heaven, how much of a difference it makes.

At pickup time, I once overheard a fellow special needs mom joking as she was halfway out the door (her child was escaping),

“Thanks for watching my kids, guys!  I know they’re a handful.  Now it’s on me again.  Boo…”

Because just like the mighty Thor intoned at Iron Man’s plea for a shawarma break, we special needs parents…

chris-hemsworth-as-thor-in-the-avengers-2012

“We’re not finished yet…”

 

Want to see what a respite on STEROIDS looks like?  

Check out Sometimes Miracles Hide, via Joni and Friends Southern Oregon.

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