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Archive for the ‘autism’ Category

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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more stay here

Posted in autism, Uncategorized, tagged , , , , , , , , on August 30, 2010| 1 Comment »

It’s just 9:30am and Jonah’s already on a long stretch of quiet time, earned by throwing a heavy laptop toy (and his juice) at me as we were getting in the car to go see train.  And yesterday he launched himself, kicking and scratching, at our awesome babysitter; luckily she had been taught a “hold” to keep them both safe.  Andy knows these holds too, having worked for more than a decade as a teacher at a small school for emotionally disturbed kids.  I don’t know the holds and need to learn them.

It is Monday, the first day of my week-long vacation from work; tomorrow morning we leave for Cape Cod, back on Friday.  I am frightened and tired and numb – oh my – and feeling like the only good thing is Jonah’s in his room safely and I can write a little bit to ease myself out of this state of mind where nothing about this feels like vacation.

But I don’t want to talk about these things – not here, not today.  I believe what you focus on expands and so I will focus on something else; I will tell you about Jonah’s adventures yesterday, pre-flip-out-on-the-babysitter.

He asked for Russro Park, which has trails and woods behind it.  I knew he wanted to run into the woods and toward a big mound of dirt where he likes to play.  Andy and I both took him, which is kind of rare – usually only one of us takes him out, so the other one can have a break.  As I predicted, Jonah wanted the forest.  While he played on and around his dirt mound, Andy and I fashioned spears from small branches and played javelin-throw into a sandy area.  We goofed off, Andy channeling Thundarr the Barbarian, shaking two branch-spears and grunting cave-man style.  Me teach you, woman, how to kill bear. My wussily-thrown spears clunked horizontally to the ground, killing only my ego and maybe an ant or two.

Jonah, in the meantime, had discovered a small embankment where he could slide down the dirt to a level of forest maybe 5 feet lower.  This dirt-slide became his own personal woodland playground for the next half hour or so.  He tossed great handfuls of sappy pine cones and moss-covered sticks about, laughing the whole time.  He rolled in the dirt; bathed in the dirt; became one with the dirt – until he was completely layered in it, brown flour coating the baking-sheet of his body.  “Okay, boo, 5 minutes!” I called over to him.

“More stay here!”  he shouted back, panic in his voice.  Andy shrugged.  We stayed a while longer.  Jonah came over to where I was playing with sticks and stones in the dirt and asked for my bottle of water, which I let him take to his play-spot.  Minutes later I realized my mistake.  He’d taken the top off and poured the water over himself and the ground, making a big, fat, muddy mess of himself.  Now it was really time to leave…do not pass go…directly to the bathtub.  “More stay here!” he protested again…but even he must have known it was time to get cleaned up, for he capitulated nicely and we returned home for a marathon bath session.

When he was dry he came to me, asking “camwa?  camwa?”  I thought he wanted to see this train video I’d taken – so I set it up, started the video, and handed the camera to him.  But he handed it back to me and said “say cheese!”  Maybe he wants to take a picture or two.

I grossly underestimated his interest.  He took probably 200 pictures, in rapid succession, giggling “say cheese!” to me, to the dresser, to the mirror, to the bed, to the ceiling.  Here are my favorites:

Jonah took this picture himself

Jonah's new hobby

So maybe his new thing is photography.  I’ll be damned if I’ll let him break my camera, though, so I’ll set him up with the Fisher-Price digital camera my mom gave him a year or two ago.

I am continually frustrated by my inability to photograph anything with success, but I like taking pictures too.   If you really want to see some kick-ass photography, just check out my cousin’s photo blog.  (She’s got some pics of Jonah there too).

So maybe we’ll have lots of beach pictures taken by Jonah when I post next, probably on Friday.  And maybe I’ll have good news to report – maybe we had fun, maybe the weather was perfect, maybe the beaches were open for business — and maybe Jonah got through it all without attacking anybody or screaming penis! to the sunbathing beauties and leather-tanned fishermen and screeching seagulls.

Maybe.

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s’white! s’brown! s’tan!

Posted in autism, tagged , , , on August 26, 2010| 1 Comment »

Jonah knows his alphabet, numbers, and colors very well.

He loves to play “what color is that?”  and even has learned some harder-to-name colors, like “tan” – but he inevitably adds an “s” at the beginning of the color, as if he’s saying “it’s white” really quickly, and it comes out “s’white!”

The other day Andy and I had some fun with Jonah and skin color.  We like our neighborhood; it’s like Sesame Street, filled with people of all colors, ages, races, religions, and sexual orientation.  Jonah knows the next door neighbors, an African-American family whose skin colors range from coffee-with-cream to very dark brown.  First we asked Jonah what color mommy is.  “S’white,” he responded with confidence.  (This is almost literally true.  I am not a tanner and have never had anything but pale, or, when burned, very red skin).

“What color is daddy?”  we asked next.   “S’tan,” he answered.  (Also accurate – Andy’s got the farmer’s tan associated with working outside in a t-shirt).

Then we asked him about the next door neighbor’s youngest girl, who has the darkest skin in their family.  “What color is K–?”  Jonah took longer this time.  “S’brown,” he said.

Next was the oldest girl in their family, with the lightest skin.  “What color is T–?”   Without hesitation, Jonah said “S’tan.”

Then “all done” he declared, downright annoyed –  as if we were asking him stupid questions, splitting hairs about variations in skin color when what he really wanted was to identify the vibrancy of the lake-blue sky or the unquestionable green-ness of our front lawn’s crabgrass.

Sometimes Jonah is my best and brightest teacher.  I’m not claiming he has a guru-on-the-mountain wisdom about the unimportance of skin color, but the way he perceives the world is certainly unique – it carries an innocence that’s long-ago lost in most children by the time they’re his age.

Silly boo

In a lot of ways, he lives a life free of so many useless, bullshit human emotions.  Jonah has no inhibitions; whether he is angry, happy, scared, or excited, he exhibits what he is feeling with an unabashed clarity.    A joyful Jonah is a wonderful thing to witness.  He giggles and shrieks with laughter, caring not how loud he is or if he is in a socially-acceptable place to exhibit such excitment.  Some intuitive part of him recognizes bliss as beautiful, powerful, and pure.

Jonah is never embarrased, self-conscious, or guilt-ridden.  He is afraid of almost nothing, and certainly scary concepts like war, death, monsters under the bed, impending school tests, etc. are far beyond his comprehension.

Toy commercials on TV do not induce the common automatic response uttered by most kids:  I want that! Jonah does not nag us for the latest game system (we have none), he does not beg for candy at the grocery store,  he doesn’t feel a desperate need for a cell phone (though he loves to play with mine), he doesn’t know Christmas from a hole in the ground, and, as far as he’s concerned, birthdays mean only two things:

1)  Singing Happy Birthday to You ad infinitum, and

2)  Gobbling copious quantities of (preferrably) chocolate cake, with lots & lots of frosting.

He does not attempt to hide or disguise his emotions.  He assesses people based on his own little system of measurement (to which I am not privy) and then behaves accordingly, cuddling up to his favorite people and being less friendly with those he does not really care about.

He doesn’t try to spare anyone’s feelings, which is possibly the one real downside to his “truth serum” zen lifestyle.  At his annual family birthday party, he expresses very little interest in the majority of the presents he is given, and will then adore his favorites with impunity, even if it means choosing to play obsessively with the $10 moneycoin bank over the $200 stand-up keyboard.

He doesn’t seem to possess empathy, though he does understand when he has physically hurt someone and he usually acts appropraitely contrite:  “okay?  okay?”  he’ll repeat worriedly – though, to be honest, I’m not sure if he’s worried that he’s hurt you or worried that he’ll be punished.

I don’t think he understands the concept of lying, but he can be manipulative, over-acting his distress when he’s denied something like black soda, or to go see the train.

So despite his skill at naming colors, he evidently is uninterested in variations in skin tone.   And even as I attempt to avoid reading deep meaning into his skin-color-apathy, I am  unaccountably proud of him for this – for, in a manner I think we could all learn from, he simply takes people for what they are – how they treat him – how they act – without any consideration whatever for the color of their skin.

And that’s pretty cool.

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the three digit number you don’t want to dial

Posted in autism, tagged , , , on August 22, 2010| 2 Comments »

I like to distance myself from the awful days by waiting a day or two before I think a whole lot about them.

I want to find the humor in my situations, but it’s difficult to find the humor in something while I’m still blubbering and feeling sorry for myself.  And I don’t know when this is ever going to be funny, so I’ll just tell it now.

On Friday Andy had a babysitter here to help him with Jonah.  He’d planned to do some chores around the house, but Jonah was whiny and challenging.  At one point Andy put him in time out in his room for 5 minutes, and then went into the bathroom to brush his teeth; the sitter was sitting on the couch in the living room.  Then BAM BAM BAM they hear Jonah kicking his window, and CRASH the sitter runs in first and sees he has smashed his whole bare leg through the glass bedroom window and right through the storm window too.  Andy runs in and he and the sitter hold Jonah, who is hysterical now…blood and glass are everywhere.

I’m at work and the phone rings.  “Amy, call 911!”  the sitter yells.  Before I can think to ask for details, I hear Andy in the background, shouting “Call 911!  Call 911!”

I automatically slam the phone down and pick it up again and dial the dreaded 3-digit-sequence of numbers.

No, I do not know what my emergency is.

I ask my officemate to please call my sitter but I need to find her number and I forgot how, I forgot how to get this information out of my cell phone because my ear is jammed up against the office phone with the 911 dispatcher waiting for me to cough up something besides my address and my brain isn’t working

and I can’t think how to get to CONTACTS on the cell phone but then finally I press the right buttons to spit the number out and I give the number to my officemate and the sitter tells her Jonah put his leg through his window and there’s blood all over the place and I repeat this to the dispatcher

and then I snatch at my purse and other stupid stuff too like the smoothie I was drinking and my book and I turn in confused circles until, thankfully, my officemate lights a fire under me:  go!

and I snap out of it and I go.  See Amy go.  See Amy drive fast.  See Amy drive very, very fast.

I get home and there is a fire engine and an ambulance in front of my house and I park behind them and run inside.  Blood and glass are indeed everywhere in Jonah’s room – on the sheets, on towels, on clothing, splattered on the wall.  Jonah’s bandaged; Andy is carrying him in his arms to the gurney waiting outside.  Fear is in Jonah’s eyes, and sincere confusion.  Andy gets in the ambulance with him and I follow them to the hospital.

As it turned out Jonah was not very much injured, somehow, thank God.  Driving to my house I’d envisioned his leg all cut to ribbons with blood transfusions required.  They didn’t even give him stitches, because the major wound was a small triangular notch torn out of his leg – nothing to stitch together.  So we took him home and I lay him on our bed while Andy went into Jonah’s room to clean up the glass and the blood and call someone about the window.  We mostly just kept him quiet for the rest of the day until he fell asleep in our bed.

The next morning Andy was in the shower and I wanted to change the dressing on Jonah’s leg, so I told him to sit down on the chair in the living room.  I started to unwrap the bandage when he attacked me, scratching at my face, hitting and kicking me.  He smashed my glasses into my face, hard, then snatched them off and threw them across the room.   I grabbed his arms, held tight to his flailing wrists, and called for Andy.  Andy came running from the shower and together we managed to get him to our room and pin him on the bed –  Jonah screaming, Andy yelling, me sobbing –  the three of us re-enacting the climax of a bad Lifetime movie.  After everything calmed down, we mostly kept him still and had more “quiet time” in the bed, each of us taking turns lying with Jonah while the other cleaned up or did laundry.

quiet time

Quiet time.

It was very quiet.  We did not talk much, except to decide to replace all the windows in Jonah’s room with unbreakable safety glass.

What is there to say?

I’m frightened… of Jonah, for Jonah, of the future, for our sanity.  We’re tired.

I’m dreading my vacation in a week.  We’re weary.  Who dreads their vacation?

I spent twilight yesterday in my front yard, carrying a cardboard box… listening to a neighbor party’s intermittent bursts of laughter, smelling the sweet-tangy wood-burning barbecue scents, pawing along the ground through our wood chips and impatiens, seeking shards of glass… marveling at the huge and perfect circle of missing glass in the window, an ugly hole in our house for everyone to see.  We’ve shut the door to his room until we can clean it completely and the windows are all replaced.  It’s almost like there’s a poltergeist in there, or we’re waiting for a priest to come and exorcise it.   It feels like we’re in a dream.

Jonah has been sleeping between us at night, sucking his thumb and snuggling.  “Huck?”  he asks me earnestly.  I just nod, pull him closer and kiss the top of his head.

What is there to say?

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a decade later

Posted in autism, tagged , , , , on August 19, 2010| Leave a Comment »

Today Andy and I have been married ten years.  We ate our annual delicious dinner at Lombardo’s when the respite sitter came.

But Jonah was awful, and it eclipsed everything.

He had an appointment at the eye doctor, and Andy and Jonah waited for 50 minutes before they were able to see her.  Shit, kids with autism can’t even wait for amusement park rides, let alone doctor appointments.  Why do they have those “move to the front of the line” passes for kids with autism at Disneyworld, but not at the doctor’s?   Jonah flopped on the floor and rolled back and forth.  He whined and he kicked.  He was loud.  People in the waiting room stared.   It was embarrassingly frustrating, and when the doctor finally examined him, it was hard for her to get a good look in his eye because he kept turning and twisting and crying.  There is too much pressure in his eye, she said, so she wants to see him again in a month.

Next week Andy is taking him to the hospital where he’ll be given anesthesia, simply to get his teeth cleaned and to fill a cavity.  Pretty soon they’ll have to put him to sleep just to look at his damn eye.

When Andy got him home, Jonah was still whiny and upset.  He does this thing lately when he is “emo” (emotional), where he wraps his arms around you in the tightest possible hug and smushes his face into yours, hard.   So Andy tried to just pry him off gently, but Jonah suddenly launched into an all-out tantrum and attacked, scratching him and screaming.  He snatched at Andy’s glasses, popping the lens out and twisting the frame, then, for an encore, he threw them across the room.   They’re broken now.  Andy fished out an old pair and, even though the respite sitter arrived, banished Jonah to his room until we returned home from dinner.

Needless to say, we did not linger, and there was no dessert.

Happy anniversary.

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swim pool

Posted in swimming, tagged , , , , , , , , on August 16, 2010| 1 Comment »

Jonah loves water.  Bath time, “swim pool,” a water-table, the ocean, the slip n slide, waterfalls, a hose…even that birdbath in the picture above…they all hold intense appeal.   I wonder at the why of his water-worship.  Sometimes I think it’s because when I was pregnant with him, I reeeeeaally wanted a water-birth.  (What I got, however, was almost the polar opposite:  nearly 3 days of labor, 2 1/2 hours of pushing, and, as icing on that ridiculous cake, a C-section).

Or maybe he loves water because he’s a Pisces (water sign) named Jonah (who, in the Bible, was swallowed by an ocean whale).

Whatever the reason, Jonah’s just as comfortable in (and under) water as he is walking about breathing air.  Though never taught to swim, he seems to have always known how and will spend hours in the water.  In fact, by the time he was 5, he swam more skillfully than I ever have; I shit you not.  Watch this video from last summer (when he was 7) and see for yourself.  (Jonah’s also at his heaviest weight ever in this clip. Last year we had him on steroids to combat an eye problem which later required surgery, and it caused weight gain – you can see his “moon face” and chunky build).

Nowadays he’s lean, and brown, and has close-cropped almost-blonde hair…

waiting for the bus to summer camp

…but swimming is still on his favorites list.  Our next door neighbor has a disabled child of her own and a small pool in her backyard donated by Make-A-Wish, and she lets Jonah come over and swim any time he wants – which is pretty much any time and all the time.

We’ve tried to take Jonah to local public pools, often with disastrous results. Jonah loves to run around and is admonished frequently by the lifeguards, who are ignorant to the fact that he doesn’t care one iota about silly whistle-blowing authority figures trying to ruin a good time.  And oh, the joy of him deciding to wait until he’s swimming to push out some poopy!  Although we use swimmy diapers (and lately special non-disposable gathered swim pants), it is nonetheless necessary to be hyper-vigilant.   Usually we catch his tell-tale facial expression betraying the impending arrival of a poop; this requires the swiftest and most well-executed plan of action:  swoop in and scoop him out of the pool, hoping he’s not already dripping discolored water, and secret him away to the restroom or some other non-populated area where we can change him.

This is never easy.

Jonah, of course, does not want to get out of the pool under any circumstances.  He squawks, he screeches, and he sometimes cries, all the while fighting us as we dig around in the swim-bag for wipes, a plastic bag, and clean swim diapers & suit.  Then, more often than not, we’ll have him all cleaned up nicey-nice and send him back in to swim, and he’ll do it again.  And again.   Probably it’s the same poop, and he’s pooping that one poop in fun-filled stages.

My heroic husband has singlehandedly taken Jonah to public pools all over Albany, something I have never dared to attempt.  I much prefer the ocean …

Jonah in the ocean

or the falls …

He's a woodland creature

…where, I theorize, if poopy should arrive, I might be able to just let it.   But of course he’s never, ever, even one time, pooped at any natural water source.  Probably he’s just messing with our heads, planning to poop at the most inconvenient times on the most inappropriate occasions.

When we arrive home from swimming anywhere, Jonah will often request a bath.  Really, kid?  More water? On Cape Cod last year, our vacation consisted almost entirely of eating, drinking, sleeping, and immersing in either (a) the ocean (b) the pool, or (c) a bath.   We’d cycle continually from one to the next, like some family who’d spent so long crying agua in wasteland deserts that an abundance of water had become addictively compelling.

I’ve pondered the wisdom of turning his room into a big fish tank and simply tossing him in, but I’ll bet conventional society would frown upon this idea.

Besides, come poopy time, it would be absolute hell to clean.

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wan go see train?

Posted in trains, tagged , , , on August 14, 2010| 1 Comment »

Every weekend morning, the first thing out of Jonah’s mouth is wan go see train?

Of course I want to go see the train, bunny. I am waiting with bated breath to see the train.

Thus begins our day, nearly always around 7:30am…bathing,  dressing, driving to Stewart’s or Dunkin’ Donuts for a coffee & usually something to eat (the coffee’s for me but Jonah’d drink it if I let him), then heading to Voorheesville where we pull over by a  randomly-open cash-only diner next to the train tracks and sit to wait for the inevitable train (there isn’t a schedule but there are plenty of early trains on the weekends).

I’m usually still pretty sleepy, whereas Jonah springs out of bed with the energy of noontime.  By the time I get him buckled in his booster seat, he’ll have worked himself up to a fever pitch, sucking his thumb in eager anticipation, humming urgently, and carefully tracking our turns to ensure I do not deviate from the accustomed route.  It was a bitch when they closed Krumkill Road for a few weeks and we had to take an alternate path to go-see-train. 

That Way!  That Way! Jonah would shout, pointing to the ROAD CLOSED sign. 

Jonah, That Way is CLOSED! I’d answer, cursing the construction, putting a Guster CD in to distract him, trying not to cave in to complete exasperation with the weekend only a few hours old.

God help us if I need gas, for that requires deviation from the route as well.   I can almost hear the gears of anxiety cranking into motion in Jonah’s brain.  Wait! Will there not be donut?

On these days, as I head toward the gas station, his voice from the backseat calls out every three seconds or so, with increasing urgency:  donut?

donut?

donut?

donut?

“Yes, yes, bunny, okay, donut.  Donut is open for business!  Train is open for business! Five minutes.”

Five mitt-ens, he confirms, deep suspicion in his voice.  Sometimes there is a breakdown at this point: me pumping gas and muttering to myself (why didn’t I do this yesterday?) – Jonah screeching, twisting in his car seat, trying to kick the window.  If the breakdown is bad, I’ll take him home for quiet time – but this is rare, as he is careful, even in his most anxious moments, not to compromise a chance at witnessing that glorious, graffiti-painted cargo train whiz by.

Some days when we arrive at the pull off area by the tracks, we see other train people.  Because Jonah has adored trains for two years or so now, I’ve learned a thing or two about these colorful characters.   They’re called railfanners, and they seek out the train-watching experience with an enthusiasm remarkably akin to Jonah’s.

a railfanner!

These railfanners, some with out-of-state plates, pull over and set up tripods to capture it all on video – from the moment the train enters sight around the bend to the time it disappears in a shrinking pinpoint down the straight track at the other end.   I want to ask the railfanners from Vermont and Massachusetts if they have trains in their own states, and if so, why they drive all this way to see ours.  Is Voorheesville a famous hotspot among railfanner elite?

We see one teenage boy a lot who rides over on his bike; he is outfitted with a neon green volunteer safety patrol vest, cell phone, and walkie-talkie.

he knows a lot about trains!

I ask him when the next train is coming, and he answers there’s a train leaving the Selkirk station in five minutes and another should be coming from the other direction in three minutes. I wonder if he has Asperger’s.  He knows so ridiculously much about the trains – where they’ve come from, where they’re going, which ones are owned by what companies, why some trains have three engines, what the trains are carrying – and more – that my mind is blown.

Armed with this new information concerning the arrival of the next train, Jonah waits in eager anticipation, cupping his hand behind his ear as I roll down all the windows.  He almost always offers running commentary.  Hear it?  Comin?  I hear it!  Hear it?  Train com-in?  Hear it?  I hear it!  Comin?

By the time the clang of the railroad crossing begins and the lights flash with the lowering of the gate, Jonah is beside himself with excitement.  Sometimes he’s cool about it, betraying his eagerness only by sucking his thumb with vigor and widening his eyes, and other times he shouts yaaaaaaaaay! and bounces in the seat, grunting and humming expectantly.  The train horn is always very loud, and Jonah covers his ears for that part, keen to catch the visual of the cars blurring as they pass, tilting his head to watch glinting sun reflections off shiny surfaces.  Then he sucks his thumb again, rocking in time to the rhythmic lurchings and mechanical tempos of the amazing, oft-sought-after train.

the train is loud!

Sometimes we’re lucky; I’ll drive around a bit after the train comes, and on the way back we’ll have perfect timing to see another one.   When we arrive home on those extra special days, he’ll declare to his dad, in rare full sentence style,  We saw two trains!

For Jonah, life doesn’t get much better than that.

For maybe five mitt-ens.

Then it’s on to the next thing on his favorites list.  He scrolls through verbally until we capitulate on something.

Grandma?  Swim-pool?  Number one park? Bath?  Black soda?

And sometimes, even, again:

Wan go see train?

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