Archive for September, 2010

“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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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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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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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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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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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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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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