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Archive for September, 2010

triangle man

Posted in autism, behavior, tagged , , , , , , , , on September 29, 2010| 2 Comments »

“Triangle man, Triangle man…

Triangle man hates Particle man;

They have a fight – Triangle wins…

Triangle man!”

~ They Might Be Giants

Jonah loves musical instruments.  While digging though his toy box to clean out broken or outgrown stuff, I came across a triangle and beater.  It was one of those things he didn’t have a whole lot of interest in two or three years ago, but I demonstrated its use and then handed it over to see if he’d like it.  Immediately he jammed out, playing in definite rhythm to a song in his head…I think it may have been “Jingle Bells.”  (Since Jonah doesn’t really understand the concept of seasonal music, he’s just as apt to perform a Christmas song in July as December).

Just the other day he was in the bathroom sing-shouting “Rudolph the Red-nosed Reindeer.”  He butchers both the reindeer names and their order of appearance:  You know Datter and Bitzen and Danter and Comma!  Dishen and Rudoff and Rudoff and Rudoff!

This from a kid who can memorize lyrics of most songs nearly perfectly, if you forgive his lack of diction.

I wish I could’ve taken him with me to see the Dark Star Orchestra, a Grateful Dead re-enactment band my cousin Brian and I went to on Saturday night.  We stayed in the back and danced, and I think Jonah would’ve loved it.  But is it worth the $31 ticket price to take the chance?  I suppose the concert would’ve been loud enough to drown out any of his annoying screeching or yelling, but what if he flipped out completely and we had to leave, or he ran through the crowd and got lost?  These fears keep me from taking him with me to a lot of things.  I’ve tried and regretted it too many times.  And I’m selfish enough to admit that I really enjoyed being at the show with just my cousin.  (I danced like I did when I was 20 at a Dead show… spinning, grinning, whirling, stomping around.  Stupid Deadhead, spinning’s for kids!  Eventually I spun myself right into a wall and had to sit on a step to rest.  And when it was all over, I limped back to the car like a peg-legged pirate.)  I guess I ain’t 20 anymore. 

So Jonah’s in his room now playing a keyboard toy.  He’s been banished there because he tried to attack Andy on the ride home from after-school program.  He was okay at school, and good at after-school, so Andy was going to take him to Burger King (right up there with Grandma’s house on the list of Jonah’s favorite places to go) — but then Jonah lost his shit.  So no Burger King.  Andy swears he’ll crack him and I think if anyone can do it, he can.  I’ve also got a meeting with a child psychiatrist who consults with kids at Wildwood; I guess the doc is going to observe Jonah (with my luck Jonah’ll be an angel that day) and then offer some recommendations.

I sure hope this dude’s got some good ones, ’cause we’re running short on ideas here in Jonah-land, and it isn’t a whole lot of fun.

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…then comes Jonah in the baby carriage

Posted in autism, Uncategorized, tagged , , , , , , , on September 26, 2010| 4 Comments »

Jonah’s got your usual assortment of ride-on toys:  bikes, scooters, wagons.  My mom even bought him this newfangled thing called a PlasmaCar.  You put your feet up on the toy and it’s propelled along, somehow, by steering and body movements alone.  As described on its website:  “It’s like magic, but you don’t need to be a magician to get it to work. The PlasmaCar is a mechanical marvel that makes use of that most inexhaustible of energy sources, kid-power, by harnessing the natural forces of inertia, centrifugal force, gravity, and friction. It’s so easy to operate; all it needs is a driver and a smooth, flat surface.” The PlasmaCar may be magic, but Jonah doesn’t know that and no amount of demonstration has helped him.  He just puts his feet down on the ground and scoots along on the thing.

We keep all these ride-on toys in our enclosed back porch, where Jonah’s play usually involves carefully arranging the placement of each toy.  Sometimes the construction of a village (in and of itself) is his play:  wagon over here, bike right beside it — angled just so — and the PlasmaCar tucked behind them both.  Even when he drags one out to actually ride on, the ride is always systematic and ritualized:

He’ll arrange the ride-on toys, select one, propel down off the step from the porch to the ground, and travel along our long, straight driveway next to the brick side of the house.  Make a sharp left turn at the walkway and stop at the steps to our front door.  Stand up and turn the toy around. Get back on.  Make sharp left turn and continue down to the edge of the driveway.  Pause.  Turn and travel along the side of the house to the porch area again.  Walk the toy up the step and back onto porch.  Close porch door.  Open porch door.  Steer toy toward the step.  Propel down off the step from the porch to the ground, and travel along our long, straight driveway next to the brick side of the house, etc.  Repeat.  Repeat.  Repeat.  Repeat.

Some of Jonah’s ride-on toys are outgrown Big Wheel type things that we keep around because Andy babysits a toddler once a week.  We’ve even got a baby stroller in there, and yesterday, for some reason, this was my 8 1/2 year old’s ride-on toy of choice.  He’d never ride in the damn thing when he was stroller age, which gave me a little flare-up of annoyance at such belated interest, but I was generally game.  I  figured he’d let me push him up and down the driveway; I could push him fast, make quick turns, and we’d have fun with it.  But Jonah insisted on going solo, propelling the stroller with his long big-kid legs.

Here he is at the end of our driveway, preparing for the Flintstones-style foot walk-ride back down the driveway.  I’ve ceased to be embarrassed by his many public eccentricities, so this didn’t really phase me; I figure we might even be entertainment for our normal neighbors.  But when he parked the stroller back on the porch, tucked both feet up on its footrest, stuck his thumb in his mouth, and gazed squarely over at me, I had to laugh at the unspoken challenge:

Yeah, I like the stroller.  Whaddaya gonna do about it?

He’s such a punk.

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m m m

Posted in autism, Uncategorized, tagged , , , , , , , on September 23, 2010| 2 Comments »

I bought a small package of M&Ms yesterday at the grocery store – one of those impulse buys you make in line while reading front covers of rag-mags featuring things like Snooki’s latest antics and Kate Gosselin’s hot new bikini body.   I never take Jonah with me to the grocery store…haven’t done it since he was a baby.  Andy brings him along on occasion, but since he claims he does not physically tie Jonah to the grocery cart, I can only deem this a minor miracle of the same magnitude as my dad taking Jonah along (not once, but twice) to Catholic Mass while the child sat quietly through the whole hour.

I barely believe these stories, but there they are.

At any rate, the stupid little bag of M&Ms has been the bane of our existence ever since.  When I got home from the store I put the bag on the counter, not thinking much of it.  Jonah’s superior candy radar scoped it out almost immediately, though:

“Skittles?”  he asks me, mistaking my bag of M&Ms for the similarly shaped multicolored treats.

“No, these are M&Ms.” I tell him. “And they’re mama’s,” I add rather meanly.

“m m m?”  he pleads.  He has not been a very good boy this day.  He was screaming at school and he hit a teacher, then was a mess at the after school program too.  I am barely in the mood to feed him dinner, let alone candy.

Finally I get him to eat something dinner-like (he has been really good lately about eating raw veggies dipped in some kind of dressing) and then I stingily offer him two M&Ms.

“What color are they?” I ask.  “s’orange,” he replies as he gobbles them down.  Then:  “m m m?”

I give him two more, again playing the color game.  Then, to avoid any further dilemma about M&M distribution, I tip the small bag and pour the rest into my mouth and down the hatch.

“m m m?”  he asks me again.  “No more,” I say.  “Sorry, boo.”  After a while he allows himself to be tempted away with the promise of playing with moneycoin downstairs.

He obviously hadn’t forgotten about it, though.  This morning when Jonah woke, he came in our room, climbed into bed, and loudly announced:  “m m m!?!”

Next time I buy chocolate I’m hiding that shit.

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thumb: it’s a yummy.

Posted in autism, Wildwood, tagged , , , , on September 20, 2010| 2 Comments »

So Jonah sucks his thumb, and I don’t care.  (Sounds like a song)

Looks like he’s daring me to care, doesn’t it?

A lot of people who have autism do something called stimming….rocking, flapping…some repetitive (no surprise there) body movement that seems to help them self-regulate.  Jonah doesn’t stim a whole lot (though when he was younger he loved to spin), but ever since he was in the womb – even in the ultrasound picture –  he’s sucked his thumb.

I sucked my thumb myself when I was a kid.  I remember how soothing it was, what a wonderful thing to have quite literally at hand…an oral fixation deliciousness with which Freud would’ve had a field day.  If I remember correctly, I sucked my thumb until I was 6 or 7, at least at night.   I don’t remember if my parents deliberately broke me of the habit or if I just gave it up.

Sometimes I watch Jonah suck his thumb and I wonder if I should care whether or not he does it, and for how long.  But there is always something more important to care about.

For instance, I’d rather work on potty training, or getting his negative (swat!) behaviors under control.  I swear I can handle just about any other aspect of his autism with relative aplomb when compared to how I handle (and hate) his hitting.

I hate that he hits.

Hate that he hits.

Hate it.

Did I mention I strongly dislike when Jonah hits?

Sigh.  I have a meeting with his teachers at his new classroom at Wildwood School this week; we’ll talk some and likely brainstorm about this problem.

I am grateful to Jonah’s school, its teachers and staff, its benefactors…its very existence.  Thank you, Wildwood. For so many reasons.  For providing a place where we are welcome, first of all.  Inside your walls we are like everyone else, yet different from one another too, and it’s okay, and it all somehow makes sense.  Thank you, staff, for teaching Jonah, for changing his diapers, for withstanding his swats and hits and kicks and whining and screaming.  Thank you for playing with him and singing with him, for letting him sit in your lap and spill paint on you and splash you with water.  Thank you for giving him a safe environment.  A voice.  A whole bunch of different ways to play, to learn, to grow.  Thank you.

Once a year, there is a Walk for Wildwood.  The walk supports Wildwood Foundation and Wildwood Programs:  Working collaboratively with families and community, Wildwood Programs empowers and enables children and adults with neurologically-based learning disabilities, autism, and other developmental disorders to lead independent, productive and fulfilling lives.

If you can help support the walk, click here.  And thank you!

If not, no problem.  Jonah will suck his thumb in your honor either way.

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this way and that way and that way and this

Posted in sense of direction, trains, Uncategorized, tagged , , , on September 18, 2010| 3 Comments »

Doctor: Ray, do you want to stay and live with your brother Charlie?

Raymond: Yeah.

Doctor: Or do you want to go back to Walbrook?

Raymond: Yeah.

Doctor: Which is it? Go back to Walbrook or stay with Charlie Babbitt?

Raymond: Go back to Walbrook, stay with Charlie Babbitt.  Stay with Charlie Babbitt, go back to Walbrook.

~ Rainman, 1988

– – –

“Jonah, do you want a donut?”  I ask him this morning on the way to the train.

“Donut?”  he repeats.  “Okay, boo, mama’ll get you a donut,” I tell him.

I come out of Stewart’s with a donut and hand it to him.  Before he’s even taken the first bite, he’s on to the next request.  “Grandma?”

“Grandma’s closed,” I answer.  I know my mom’s working today so that means she won’t be open for business until at least 3:30 this afternoon.  We continue on to the train tracks just as a train is going by, so it’s an instant-gratification experience for Jonah.

“Eddie?”  comes the next request.  Eddie is our office cat where I work, and sometimes I’ll take Jonah over on rainy days to feed Eddie a treat or throw a jingle-ball down the stairs to him a few dozen times.  The last place I want to be on a lovely weekend morning, however, is my workplace, so I shoot down this request as well.  “Eddie’s closed,” I say in what I hope passes for a mournful tone.  “Let’s go for a little car ride.”

“Window?”  he asks.  I give him the go-ahead and he rolls his window down all the way.  It’s kind of cold, being a mid-September morning — maybe 55 degrees.  But Jonah is impervious to cold in a way I neither share nor understand, so I turn on my heated seat and crank up the blower heat too.

My best friend Gina loved rolling her window all the way down, in any weather, and I find myself thinking of her…remembering our road trips, all the car’s vents directed toward me, blowing hot as she enjoyed the chilly wind.  She died 8 years ago but I can almost hear her laughing at me, riding around Voorheesville early Sunday morning to watch a train go by, for God’s sake…blasting heat and begrudgingly allowing Jonah to roll his window down.  I like the wind too, I imagine her whispering in his ear.

Then:  “This way?!”  Jonah half-requests and half-insists.  He has not pointed in any direction so I don’t know which way he wants to go.  I glance backward and ask him again.  “Straight?”  I guess.  Straight will take us along our normal loop up through Altamont and back to the train tracks in Voorheesville. “Straight,” he repeats (while pointing to the left).  But I’m not looking at him, so I drive forward, operating under the foolish assumption that Jonah knows what straight means.  “This way!”  he shouts, agitated now.  “This way!”

I pull the car over so I can see where he’s pointing, and then turn the car around to pass back over near the train tracks.

“Train?”  he asks.  “That way?!”

“You want to stay here and wait for another train?”  I ask.  I am very nearly ready to endure whatever tantrum is brewing rather than attempt to further unravel his fickle directional desires.  “Stay he-ah?”  Jonah echoes.  So we stay.

I lean back in my seat.

I close my eyes.

After a minute or two, from the backseat:  “That way?!”

I can’t help but laugh.  “Jonah,” I ask him, quoting Rainman, “do you want to stay with your brother Charlie or go back to Walbrook?”

“Stay he-ah,” he answers definitively.   Not five minutes later another train comes by, and Jonah is delighted.

Sometimes I think he’s got it all figured out and just likes to mess with my head.

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the extreme escalator experience

Posted in autism, escalators, tagged , , , , , , , on September 15, 2010| 5 Comments »

Cold weather is coming, so I’m thinking about fall and wintertime places to go with Jonah.  Lucky for us, one of Jonah’s all-time favorite things to do is ride the escalator.  Any escalator, anywhere, anytime.  The best place to take him for this exciting activity is Latham Circle Mall; it’s so incredibly empty he can’t hurt anything or disrupt the normal flow of mall traffic (because there is none).   When I tell you this mall is dead, I mean it is very nearly six feet under.  There are probably 100 storefronts, of which perhaps 7 or 8 are occupied.  Incredibly lame for shoppers.  Perfect for us.  We almost always have both the up and down portions of the escalator all to ourselves.

This particular escalator is a long, skinny one which transports nonexistent shoppers and moviegoers up and down from the main shopping level to the movie theaters above.  When we first arrive at the mall, Jonah will slowly walk its echoing length and back, dragging his hands along the grimy gates and unwashed windows of the ghostly closed-down shops.   Sometimes he’ll pause at the small cluster of coin operated ride-on motorcycles, buses, airplanes, etc.  He never asks for moneycoin so he can ride the rides.  He just climbs in and out of them for a while, enjoying the motionless experience.

After this it is time for the escalator.  This does not mean we take the escalator once up, once down, and go on our merry way.  We ride that escalator up.  We ride it down.  We ride it up again.  We ride it down.  We ride it up.  And down, and up again.

At the top level, he will run over to this funnel-looking structure where you place a piece of moneycoin in a slot and the moneycoin rolls round and round the funnel, circling the circumference a little lower with each pass until it drops into a hole and is ostensibly donated to I Forget Which Good Cause.

Sometimes Jonah will stop here and plead for moneycoin.  “Okay,” I tell him, hoping I’ve got a lot of pennies.  I usually do, and the moneycoin fun begins.  When I’m out of moneycoin I distract his protests — more this?! — with promise of further escalator fun.  So we go back down.  We ride up again.  We ride back down and up once more.  Again.  Again.  Again.  Again.  Up, down.  Up, down.  By this time I usually want to give a countdown so I say “10 more times, bunny.”

“More eh-cah-layor?”  he begs.  “Yes, boo, 10 times more.”  But now he understands I have placed an official limit on the fun.  Depending on Jonah’s behavior, how exhausted I am with the monotony, what I have to do that day, and how amenable I’m feeling, I might increase the number to 20 times more.  Up the escalator….yay!  Down the escalator….yay!  Over and over and over.

Usually when I tell people a story like this, they think they have a handle on what this means, but I doubt it.  One day my friend P came with Jonah and me to experience firsthand what it’s really like to ride an escalator up and down 50 times or so in a row without, say, trying to break a Guinness record for escalator-riding.  She told me afterward that although she’d heard me relate similarly repetitive activities many times, she now understood exactly how strangely surreal it is to just go up and down, up and down, up and down, with nowhere to go…no real destination except a cycle.  There’s a lesson in there somewhere, I think; but who wants to over-analyze extreme escalator riding?

It is definitely a whole new ball game when there are people around.  Even at the other great nearly-always-empty escalator, the one that brings you up to the 4th floor of the New York State Museum, we can ride for only so long before the guard-on-duty takes notice and stars to stare, no doubt weighing the chances that my small son and I are escalator terrorists.  Usually I save him the discomfort and stop to explain.  “My son has autism,” I say.  “He likes to ride the escalator.”  Most of the guards are pretty cool about it.

On the 4th floor there are more museum exhibits, a Subway sandwich shop, and an indoor carousel.   Whether Jonah wants to ride the carousel or not is a crapshoot – but if he does get on, he always wants to sit on the most stationary thing on the ride.

When he was younger he’d ride a horse, but now he wants nothing that goes up & down.  In fact, he wants no horses at all.  No slowly-spinning tea cup.  No rocking bench.  Jonah wants the stationary bench where you just, um, sit. 

Whatever floats your boat, kid.  Mama’s getting too old for much motion on top of spinning, anyway.

I should invent a ride area at the amusement park called Jonah’s Autism Adventures.  It’d have a merry-go-round full of stationary benches, a very long escalator, and a structure that spins your moneycoin around before sucking it down and away.

While I doubt it’d be a big attraction, I say all the better:  Jonah would love it, and he’d have the whole place to himself.


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put the soap in your butt

Posted in autism, potty training, tagged , , , , , , , , on September 13, 2010| 2 Comments »

To entertain Jonah (and one another), Andy and I sometimes change around existing songs, Weird Al style, to suit our very own weird little family.  And because we are often putting Jonah in a soapy bathtub right after changing a poop, one of our “top 10 hits” revolves around this activity – it’s sung to the tune of  “Another One Bites the Dust,” by Queen, and goes something like this:

Da-da dum. dum. dum.  Put the soap… in your butt!

Da-da dum. dum. dum.  Put the soap… in your butt!

Putt the soap in your butt, putt the soap in your butt, put the soap… in your butt!

Hey!  I’m gonna clean you, too!  Put the soap… in your butt!

We sing gems like this to Jonah, he memorizes them, and then he performs them.  Loudly.  In public.

I know, I know.  We have no one to blame but ourselves.  But how else to explain the necessity of a clean nether-region to a kid like Jonah?  He loves music.  He remembers songs.  This little boy, who can’t string together more than 5 or 6 spoken words at a clip, can sing entire songs – verse and chorus, the whole shebang.  Go figure.

Probably 65% of his repertoire is made up of Guster songs (Yes, I brainwashed him)…

…and maybe 10% kids’ songs (The Wheels on the Bus was an early favorite), 5% Beatles songs (he especially loves Michelle and Yellow Submarine), 5% old-fashioned standards (my dad taught him songs like “Daisy” and “Bye Bye Blackbird“), and the rest these silly made-up tunes that Andy and I sing to him.

Oh, wait – I almost forgot about “Happy Birthday” – one of Jonah’s all-time favorites, quite possibly because its performance at certain gatherings is rewarded, nearly immediately, by cake.   There was a time not too long ago when lighting any candle anywhere in our home necessitated a sing-along of the tiresome tune you should really only have to hear once a year.   Every so often I would deliberately indulge Jonah, lighting a candle so we could both sing the Happy Birthday song (to Jonah every time of course), pause for effect, blow out the candle, and clap wildly, shouting “yay!”

And then light the candle again and start all over.

And over.  And over, and over, and over.

Light, sing, blow, clap, yay! “More?  more?”

Light, sing, blow, clap, yay! “More?  more?”

Light, sing, blow, clap, yay! “More?  more?”

It makes sense to me, though, that Jonah learns well this way and can remember lyrics and tunes.  I mean, I learned more math, grammar, science, and history from Schoolhouse Rock songs (sandwiched between The Superfriends and Bugs Bunny on Saturday morning TV) than I did from the entirety of my elementary school education.  And I remember memorizing many a sedimentary rock for geology tests in college by putting their names to some then-popular tune.

No, I can’t say I’m surprised that Jonah sings along to life.

I have to wonder, though:  was it right for us to mess with such an anthemic Queen song, bastardizing it shamelessly into a ditty about (of all things) putting soap in your butt?

Even Weird Al didn’t stoop that low.

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dear god and little baby jason

Posted in autism, echolalia, trains, tagged , , , , , , , on September 12, 2010| 1 Comment »

Most mornings, Jonah wakes up and loiters near his bedroom doorway, making little noises until Andy or I extend an invitation for him to come in our room.  We didn’t teach him this; it’s not like with the potty, where we dangle the ‘black soda carrot’ to elicit a desired behavior.  I have no idea what makes him wait at the threshold of his room when he clearly wants to jump in bed with us (and when this kind of self-regulation appears to be lacking entirely in every other instance of his life).  But wait he does.  This morning:

“Where’s my bunny?” I call out to him.  It’s 7:15am, kind of late for Jonah to be first waking and uttering his jabberwocky.  He comes running in and around to my side of the bed, where I pull back the sheet so he can get under the covers.  It’s awfully early but I’m an early bird by nature, and the truth is I love this time with Jonah, when I get to hug him close and kiss the top of his little almost-blonde head, when I get to squeeze him tight and sing “he’s the best little boy in the –”

–and hear Jonah’s little voice finishing the phrase: “– whole wide world!”

Today, though, I am particularly tired when he comes bounding in.  “Let’s go back to sleepy bye,” I whisper in a not-so-convincing excited voice.  For a while he cuddles but then gets restless and begins his daily litany of requests, repetitions, rituals…

Sighing, I mutter a phrase we say jokingly at work all the time: “Dear God and little baby Jesus help me.”

Reliably, Jonah repeats what he thinks he has heard.  “Help me, baby Jason!”

Laughing, I sit up.  “Wanna go see train?” I ask, figuring he’s going to ask me anyway so I’ll beat him to the punch.

“Moneycoin?” he asks.  So it’s going to be a moneycoin kind of day. I get him a Tupperware container with maybe an inch or two of moneycoin inside; he is delighted.  “Moneycoin!” he shouts in gleeful agreement.  Then:  “train?” he asks.  “Yes, boo, we can go see the train too,” I generously concede.

On the way, we turn Guster up loud – and Jonah’s Tupperware container of moneycoin is a fine percussion instrument.  “So go… on!  If it’ll make you happier!” he sing-shouts, shaking his moneycoin around to the beat.  During the next song, a quieter tune, he gently swishes the moneycoin inside the container with his hand. Never let it be said my boy can’t break it down.

We even see two trains – something spectacularly fortuitous. Later, we go with Grandma Jane to the park and Jonah brings his moneycoin along; for a while he just sits on a picnic bench and lets it run through his fingers in a miserly fashion.


Then he carries it to the top of the slide and dumps it down, a great rain of moneycoin falling into a shiny scattered pile at the bottom. A couple of two-or-three-year-old kids try to talk to Jonah at one point.

“Hi!” the little girl says brightly.  I prompt Jonah, who is so engrossed in the world of moneycoin, he probably doesn’t even hear the kid.

“Say hi, boo,” I tell him.

“Hi,” he says without looking up.  The precocious girl is indignant. “I”m over here,” she insists.

“He’s not much of a talker,” I explain.  My mother-in-law has already told the parents that Jonah has autism.  The little kids quickly lose interest and run off, laughing at some shared tidbit.  They’re awfully cute, those kids.

My boy, on the other hand, is completely grimy, dirt coating his hands, his grubby clothes, most of his face, and of course, his bare feet.  Jonah hears a train horn and goes tearing off toward the car.  We spring into action and actually catch the damn thing at the tracks.  Sweet.

After the park and the bonus-train, we visit Grandma Jane and Grandpa Jim’s house, where Jonah dumps the remaining moneycoin, this time in their driveway.

We got home a little while ago.  Now he’s in the bath, washing off round one of what will likely be two or three rounds-worth of dirt he’ll acquire today.

Dear God and little baby Jason help us.

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the village

Posted in autism, tagged , , , , on September 9, 2010| 3 Comments »

Yesterday Jonah was content to play by himself for a while.  This usually involves dragging several large playthings and objects over to wherever he’s set up camp, creating what we like to call “the village”.  This time, among other things, he’d blockaded himself in by a large play table with a keyboard, desktop, and several small buttons and games.  It required batteries and he understood the batteries were dead, so he came to me and said “battery?”  After I replaced the batteries, the toy table happily chattered away about numbers and colors.  Jonah settled in behind the table on a large cushion-y chair with his current favorite pack of flashcards.

He loves cards.  Any kind.  Playing cars, word cards, colors, puzzle pictures, trigonometry equations – you name it.  He flips through them, carries them around, clings to them like little miniature security blankets.

When he plays by himself, he is both student and teacher.  “What color is this card?”  he asks.

“S’blue!” is his immediate answer.  “That’s right!”  he replies brightly.

“What color is my shirt?”  he tries again, perhaps thinking a more challenging question is in order.

“S’red!” he confidently replies.  “Yup!”  he declares, proudly nodding at having such a bright student.

After a while it is time for his bath.  When I tell him 5 minutes to bath time, he begs “more this!?”  “More this!?”

“5 minutes more,” I answer.  Alas, he can’t have the flash cards in the water because they’ll get wet.  And strangely, this kid who understands when his toy needs batteries is unable to comprehend the destructive nature of water when it comes to paper products.   So I compensate with green bucket, a beach sand-castle bucket we’ve filled with random cups, plastic bath toys, and empty soft-soap containers.  If I leave him alone in the bathtub, he’ll quickly grab the liquid soap container from the sink and dumb its entire contents in the tub, creating a village of bubbles in which to bask and bathe.  The people at the grocery store must think I am an obsessive-compulsive hand-washer for all the soap refill containers I purchase.

joyful bathtime jonah, circa 2008

It is early morning now and as I type this, I hear Jonah stirring.  He is giggling, amused by something he has perhaps dreamed or just realized.  The kid is cracking himself up in there.

What a beautiful thing, to awaken so happy you’re out of control laughing. 

Laugh away, kid.  Mama loves you.

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the cape cod swat team

Posted in autism, swimming, tagged , , , , , , , on September 6, 2010| 2 Comments »

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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