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Posts Tagged ‘hug’

“I been talkin’ to Jesus, but he’s not talkin’ to me…”  ~Guster

Wednesday morning I met Andy and Jonah at the Retina Care Center at 7:30am for Jonah’s eye exam.  The last couple times Andy tried to drive him, they never even made it to the building because Jonah was violent, so we hadn’t been there for a while.  And even though we always ask for the first appointment of the day and it is the crack of dawn, there are always about 9 other patients waiting; I don’t think Jonah’s ever been the first patient actually seen by the doctor.

The staff knows Jonah falls apart quickly – they’ve certainly seen it many times before.  And when I say “falls apart,” I mean falls the fuck apart, aggressing so that Andy has to get him out – biting, scratching, kicking and thrashing – and screaming so piercingly, frighteningly loud you could sell the sound as a special-effects scream for a horror movie.

But Jonah did well this time.  He only needed to be re-directed about 40 times during the course of our 15-20 minute wait.  He begged repeatedly for “ride brown car-ah,” dumped the container of glaucoma brochures, nestled his little face against his daddy’s, asking for hug?, yelling MEOW, walking over toward the exam room and back to mama, announcing boobie!, flopping and flailing on the carpet at least twice.  All this on medication to calm him.

(My friend K just e-mailed to tell me it looks like Thing from The Addams Family is crawling on Jonah’s head, and I laughed my head off.  It totally does.  Creepy!)

It’s funny how you go from being embarrassed by your child’s behavior to not really giving a damn if people think you’re bad parents or your kid is an unruly retard.  It took me a good while to get to the place where you don’t give a damn.  It feels better here.

When they finally gave Jonah his eye exam, though, I was impressed at his cooperation to deal with the dilating drops, more waiting in another waiting room, sitting in a strange chair in a small exam room in the near-dark, holding the black plastic thingee over one eye, reciting his letters.  (How do they get this information from non-verbal patients?)  He tolerated the different slides of  smaller and smaller letters – with both eyes, even.  The doc told me later that his eyes were about 20/25.  After she examined his eyes in another exam room (with fancier equipment he also tolerated admirably), Andy and Jonah went bye bye doctor and I stayed behind to talk with her.

She’s kind, sharp and smart; she was the one who operated on Jonah’s left eye.  I trust her.  I made an appointment for October and left, holding the card in my hand, thinking the next time we bring him, it will be after picking him up where he’ll be living, an hour and a half away, at the Anderson School for Autism.  Halfway down the hallway stairs I stopped walking and turned the card over and over in my hand.  “…where he’ll be living, at the Anderson School for Autism…”

I revisited the thought from a place of detachment, kind of the way you do when you first hear about the death of someone close. There isn’t a right way to react to all that has happened during this past year.  I’ve gone into a mode where I’ve ceased to be surprised by anything at all, where every part of me knows that anything can happen, at any time, to anyone.  Everything comes at us so quickly now, and there is a sense of unshakable urgency.

Yesterday after work Andy and I took Jonah for a car ride, and on the way home there was a beautiful rainbow.  (Whenever I see a rainbow, I stop whatever it is I’m doing to take a picture – even if it means running out into the parking lot at work and getting all wet to do it).   I pulled the car over and took as many pictures as I could before I started to feel like that double-rainbow dude on Tosh.O.


I need to continue to notice things, be grateful for things, believe things.
There is no other way right now.  This is my necessary path.

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Dennisport, MA

Our Cape Cod vacation 2010 has come and gone with all its lovely weather, salted ocean breezes, not one single smashed window, and a safe trip home.

Everything in between was chaos, sunburn, exhaustion, two major Jonah meltdowns, the ocean, swim pool, hot dog stands, and as much quiet time as we could get away with.

Meltdown #1 took place before we were even halfway there, at a rest stop, eating McD’s among the tables full of weary, road-worn travelers.  We could tell Jonah was getting agitated and we could almost visibly see the gears in his head trying to keep it together. Andy said to me, “you realize he’s about to have a freak-out and –” before he could utter another word Jonah launched himself at Andy, ripping his glasses off and throwing them skidding across the floor, one lens popping out completely.  Then the scratching, the screaming, the kicking.  Andy held him and wrestled him, wailing and crying, outside as quickly as possible while I avoided the gaze of the staring masses and hunted down scattered twisted pieces of my husband’s eye-wear.

Not an auspicious beginning.

We only stay at the Cape for three nights because it is all we can stand.  I spent most of the vacation fantasizing of Maria Von Trapp entering stage-left, singing of schnitzel with noodles, eager to care for my cherub so I can crouch on the beach and create pictures from shells, stones, and seaweed – all while gulping coffee, lullaby-ed by the waves, smiling into the sunshine.   I celebrated a birthday while I was there, making a wish to help transform my deliciously selfish fantasy into reality, but to no avail.  How do you solve a problem like (the distressing lack of) Maria?

You play pass the Jonah, that’s how.  So one morning I let Andy sleep in while I made breakfast and took Jonah down to walk the jetty — one of his favorite beach activities – ignoring the judgmental senior citizen couples screaming at me with their stares:  how can you let that poor little boy run barefoot on those treacherous rocks?

– and the next day Andy took Jonah for an early-morning trip to the playground so I could make some pictures in the sand after all.

But in between the brief periods of sun-lemon lit beach silence or a cushion-y extra hour’s sleep, Jonah challenged every inch of our patience.  He stomped around the room.  He shouted poopy in the potty! out the screen door overlooking the pool.  He begged repeatedly for wants:  cookie?  cookie? cookie? cookie? cookie? cookie? He was nearly always too loud.  He repeatedly refused undesired activities:  no brush teeth?!  no brush teeth?!  no brush teeth?!  no brush teeth?!  no brush teeth?!  no brush teeth?! He made endless demands. Entreaties. Complaints. Random booming declarations.  He asked for cheeseburger and ate one bite.  He asked for park and then declared all done after 5 minutes.  He requested swim pool and lasted another 5 minutes before begging for ocean.

But Jonah adores the ocean – and it very nearly made all the trouble worth it.

Like childbirth labor, by August next year the meltdowns, yelling, endless repeated phrases, rapidly vacillating requests (ocean?  pool?  hot dog?  car ride?) and screechy whining will have faded into a blurry hypnogogic memory of vague pain.  We’ll embrace optimism – it’ll be better this year – and try again.

We did have gorgeous weather. 80-85 degrees every day with ocean breezes, blue sky, and a lame hurricane that limped in, wheezing its 30mph winds, half a day after we’d left for home.

I admit I’d have loved to walk leisurely with Andy down the beach or, dare I dream, go out to an actual sit-down dinner while someone watched Jonah.  But all in all I have to say we did well.  Jonah swam in the pool, in the hot-tub, in the ocean, in the other pool, in the bath.  He leaped across the jetties like a deer, and he never once tried to scope out strangers’ coolers or throw sand at hapless unsteady infants.

He did, however, swat.  He even says the word “swat” while he is swatting, every time, as if we’re too obtuse to comprehend his actions unless he verbalizes them as well.  This is something new.  All vacation long when he didn’t want to do something (or didn’t get to do what he wanted), he both vocalized and pantomimed swat.   We said “no swat” angrily and gave him the evil eye, at which point he switched into contrite-boy-mode, asking “huck?  huck?”  “okay?  okay?”  ad infinitum.  “No, it’s not okay,” we told him, so he reverted to “swat,” again cocking his hand for a hit at whomever he was nearest.  This would necessitate quiet time, leading to more fun frustration and further swatting.

“Second verse? Same as the first!”

~ Herman’s Hermits

On the ride home the swat-and-huck routine became infuriatingly surreal.  swat and hug and hug and swat, the entire way.  Since we were in the front of the car and he in the back, we couldn’t really hug him; a touch on his knee with an outstretched, contorted arm had to suffice.  When he began to weep and panic, Andy and I would alternate who “hugged” him, all the while searching for distractions to pass the time without incident.  We fiddled with the radio, shoveled goldfish crackers and potato chips into our child, and prayed he wouldn’t break anyone’s glasses at the next rest stop.  We wished the miles away and behind us, driving with a time bomb in the backseat likely to explode at any moment if we didn’t high-tail it home – and fast.

It was as if, driving home, we expected to find someone waiting for us (Maria Von Trapp again?), ready to babysit so we could finally sleep, rest, and have a vacation from our vacation.  Not so.  But we made it through, assuredly deserving of matching cheesy t-shirts:  We Survived the 2010 Cape Cod Swat Team!!!


Bring it on, September.  We’re ready.

Jonah returns to school Wednesday, and there is no pretense of apathy about it; if you listen closely, you might even hear the angels in heaven chorusing good tidings of comfort and joy.

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