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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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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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go ‘head!

Posted in Uncategorized, tagged , , , , on August 29, 2010| Leave a Comment »

Jonah is the lord of self-admonishment.  By this I mean he will do things like shout “NO SHOUTING!”(particularly fun in crowds), repeat recently-declared edicts: “no hitting mama,” or even dole out such specific pretend punishments as “two minutes in your room!”

…but he is also the prince of self-permission.  Gazing longingly at my black soda, he’ll widen smiling eyes and say: “go ‘head!” — as if he’s simultaneously both the one who wants the soda and the one who may bequeath it.  He knows that in the real world he can only have black soda when he does poopy on the potty (which he is getting better at, though he still squats with both his hands and feet on the toilet seat, knees doubled up to his chin, skinny little butt poised over the water – and more often than not he’ll still just poop whenever and wherever he wants, black soda temptation notwithstanding)…

…but when you don’t give him what he has just given himself permission to have/or say/or do, he follows up with the most annoying sound in the world – this screechy, whiny, bitch-boy noise that grates on you in milliseconds, usually resulting in a time-out in his room where he’ll retreat to admonish himself once more:  “Time OUT!  Be QUIET!” — and, as Kurt Vonnegut liked to say, so it goes.

Therefore, it’s especially nice when what Jonah wants is what he’s about to get anyway.

“Go see Barkley?” he asked this morning; it just so happens we go see Barkley, Andy’s parents’ dog, most Sundays.

We are next to one another on the couch and I look up at him.  Before I can even answer, Jonah is nodding and smiling, eyes big with anticipation of Barkley-fun.  “Go ‘head!”  he says brightly. “Uh-huh!”

“Yay!  That’s right!  We’re going to see Barkley!” I answer with all the cheerfulness I can muster for 8am Sunday morning.

“Yup!”  he agrees, grinning around the thumb in his mouth.

Punk-ass.

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mississippi, one boobie, & the hospital, revisited

Posted in Uncategorized on August 24, 2010| 1 Comment »

This morning I got out of the shower and heard Jonah stirring in his room (newly adorned with blood-free blue-striped bedding and clear Plexiglas panels screwed into the frames over all the windows).  Then, inexplicably, he called:  Mississippi!

I laughed softly and shook my head.  Jonah is a word-generator, emitting jabberwocky, fun-filled phrases, and other random silly stuff.  Ten minutes ago he snuggled into Andy on the couch, patted his chest, and said:  one boobie.

Yup.  One boobie.  Probably in Mississippi.

Andy spent the day with Jonah, at the hospital again – this time a scheduled visit.   Jonah needed one tooth pulled, a cleaning, and some cavities filled; when he was under general anesthesia, the dental surgeon went to town.  One might think this kind of thing could be accomplished with a visit to our local kid-friendly dentist, but that didn’t work out so well last time, even though they’d prescribed him medicine to make him groggy  (which didn’t work at all).  If anything it keyed him up even more – like that small percentage of children who, instead of becoming sleepy on Benadryl, get all ape shit hyper.

They’d had to papoose him in this horrible straight-jacket device; I held his head, Andy held his feet, and Jonah just screamed and screamed, tears in a constant course down his bright red face of fear, the dentist doing the best she could as he fought her every second – all for a teeth cleaning.  We said fuck this.  Never again.

So today they knocked him out for all the dental fun.  He’s a little swollen, the poor boo, and tired – and he puked in the car on the way home from the hospital.  But at least he wasn’t (as) traumatized as that day he unwittingly starred in One Flew Over the Cuckoo’s Nest.

I don’t know how often we’re going to be able to bring ourselves to go through this so he can have good teeth.  We brush his teeth twice or three times a day and try to teach him how to do it himself, brushing right along with him, facing him, aping and exaggerating all the motions, singing this is the way we brush our teeth, brush our teeth, brush our teeth…but he’s just not on board with the whole oral hygiene program, no matter how much we attempt to turn it into musical theatre.  Despite our best efforts, he’s not really getting super-clean teeth with our lame brushings.

Healthy teeth I care about; perfect, not so much.   But no wonder a lot of disabled and mentally ill folk have bad teeth.

It’s not worth a straight smile if they’ve scared all the smiles out of you.

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no, no, and no

Posted in Uncategorized, tagged , , on August 17, 2010| 1 Comment »

Andy is tired.  Jonah is home until school starts again, and I know it’s not easy to watch him for hours on end with very few breaks.  I’m tired too, so going to work today was almost respite…something I felt a little guilty about, like my office is a sweet tropical escape Andy’s missing out on.

I had a doc appointment right after work today, too, so I was home even later than usual.  When I walked in the door around 7, Jonah ran up to me.

Without preamble or hesitation, in rapid succession, he fired:

“Wan go see train?”

train!

“Wan go see grandma?”

“Wan go number one park?”

I laughed weakly and silently responded:  No, no, and no.

By way of apology, I leaned down to hug him tight; we went downstairs and sang Guster songs in the basement instead.


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fizzy lifting drinks

Posted in Uncategorized, tagged , on August 11, 2010| 1 Comment »

When Andy went to pick up Jonah from after-school care today, Jonah was hysterically crying.  The dreaded log book told us he’d done pretty well in camp today, and he did okay at the after-school program too, at first, but then there was a rapid deterioration; the staff told Andy they think Jonah has a headache.

Funny how I was just blogging yesterday about how sometimes I wonder if he’s sick or hurting and can’t tell us.

So when they got home, I gathered Jonah in my arms on the couch for some snuggle time, and immediately he tried to cop a feel (one of his favorite things to attempt; did I nurse him too long?  I didn’t think 15 months was excessive) which I brushed off with a firm no.  “No boobie,” he announced, evidently in agreement, placing his arm instead around my neck.

I decided to distract him with his all-time favorite scene from one of his all-time favorite movies, Willie Wonka and the Chocolate Factory, which we just happen to have recorded on the DVR back around Christmastime.  For some reason Jonah adores when, near the end of the movie, Grandpa Joe gets all up in Mr. Wonka’s grille, challenging him to give over the lifetime supply of chocolate for Charlie, and Mr. Wonka, not to be outdone by an old man who has spent the last 20 years in bed, becomes equally enraged.  Jonah knows (and can recite) this screaming-match of a scene by heart, and usually it makes him laugh hysterically.

Mr. Wonka: You STOLE fizzy lifting drinks!  You bumped into the ceiling, which now has to be washed, and sterilized, so you get NOTHING!  You lose! Good day, sir!

Grandpa Joe: You’re a crook!  You’re a cheat, and a swindler – that’s what you are!  How could you do a thing like this?  Build up a little boy’s hopes and then smash all his dreams to pieces?!!  YOU’RE AN INHUMAN MONSTER!

Mr. Wonka: I SAID GOOD DAY!!

Usually Jonah would say more until I’d rewound & played that scene at least ten times or so…but today it didn’t do the trick at all.

After a few minutes of cuddling and TV, I asked him if his head hurt.  “You need head medicine?”  I said, walking into the kitchen to look for the liquid Children’s Tylenol.  Jonah followed me.  I had just poured myself a cup of water with ice and put it on the kitchen counter, when he walked over and picked it up.

“Head meh-sin?”  he asked.  Before I could answer him he took the water, walked to the sink, leaned his head over, and poured the whole icy cupful on his head.

I couldn’t help but laugh at the poor boo.  He got his head meh-sin (and some Tylenol too) at any rate, and doesn’t seem too much worse for the wear.

As long as he stays away from the fizzy lifting drinks, I think he’ll survive.

P.S.  After I finished this post, I checked the news online. The guy who produced Roots and Willy Wonka died today.  Weird.

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the dreaded log book

Posted in echolalia, Uncategorized, tagged , , , , on August 10, 2010| 1 Comment »

Bad day for the J-Dog at Wildwood’s Altamont summer camp.   He hit, he whined, he needed to be restrained, and he incurred “several” time outs, according to his log book in which the staff communicates these things to us.

I have a secret:  I hate opening his log book. I hate the hope I feel that they will tell me he was so very well behaved and did or said or accomplished something really cool…and I hate knowing those kind of log book entries are exceedingly rare.

Every morning, I kiss Jonah goodbye and say “you be a good boy today, okay?” and he usually parrots “good boy?” like it’s a question he’s asking me: who and what, exactly, is a good boy?

I know there’s a better than even chance he won’t be a “good boy,” and I feel helpless to change it.  When he’s home, Andy and I can banish him to his room for “quiet time” for as long as necessary.  We feel more in control because we can offer immediate consequences and positive reinforcements too.  Without being right at camp (or school) with him, it’s hard to really get to the bottom of what’s going on when he has a “bad day.”

I often worry he might be hurting or sick and unable to articulate that, so he acts out as a result.  (I’ve never heard him verbalize a physical ailment, whether it be a tummy ache, a head ache, or anything else, aside from him whimpering “eye hurt” after his eye surgery in the spring).

Then I worry that I am making excuses for him.  Then I worry that he’ll just get bigger, and stronger, and more aggressive, and we’ll be bruised and broken by the time he’s a teenager.  I don’t like to think about it, so then I worry that I’ve just got the ostrich-mom-with-her-head-in-the-sand syndrome.  I just really don’t know, and then I worry that I’m too uninvolved in changing that, in figuring something out, in knowing something about what is going on and what to do about it.

After this week, Jonah has 3 weeks of break between summer camp and school.  It is without a doubt the most difficult 3 weeks of the calendar year for us, especially for Andy, who will take the time off from his part-time construction work to care for Jonah during the days while I work.  I used to be the stay at home mom, but Andy and I switched roles in the fall of 2007, so now I earn most of the moneycoin, and Andy is Jonah’s primary caregiver.  I admit Andy is better at it than me.   He’s more patient and a stronger disciplinarian too, hands down.  They won’t be handing me the Mother of the Year award any time soon.

So Jonah carried his behavior home today, bringing a whole new definition to the word obnoxious.  The respite sitter was here tonight (thank you to both the sitter and our local Catholic Charities for providing the respite) but Andy and I still have to shadow her, intervening when Jonah gets angry or loud, guiding her in how and when to give “time outs,” and, tonight, changing the 4 or 5 poops he did in rapid succession (none on the toilet, though we sure did try), so by the time the sitter left, our whole house stank to high hell, and now we’re very tired, and neither of us feels well, and we are collectively very cranky.

Bedtime is fantastic. After we put Jonah to bed (and thankfully he goes to bed well), I get myself settled with a book and a black soda, and I can relax for what seems, many days, like the first time I’ve had the opportunity all day.

Then I get to sleep.

Bliss.

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moneycoin

Posted in Uncategorized, tagged , on August 9, 2010| Leave a Comment »

Charlie Babbitt: Does Raymond know how much money he’s inherited?

Dr. Bruner: No, he doesn’t understand the concept of money.

Charlie Babbitt: He doesn’t understand the concept of money?  He just inherited three million dollars and he doesn’t understand the concept of money? Wow, good work, Dad. I’m getting fucking poetic here.

~ Rainman, 1988

– – –

Like Rainman, Jonah doesn’t understand the concept of money.

But boy does he love a good handful of change.  It’s one of his favorite playthings.

“Moneycoin?”  he pleads, standing on our bed and trying to reach over to the dresser to retrieve whatever assorted pennies and quarters have accumulated on top.

“Moneycoin is…open for business!”  I shout, giving him a handful of assorted coinage.  He drops his precious moneycoin in a small Tupperware container and shakes it, then gleefully tosses the whole works into the air; like game show prize money it rains down on us.

Jonah rolls moneycoin along the wooden floor in the hallway.  He spins moneycoin on the living room coffee table.  He clutches moneycoin greedily in tight fists: a miser gone berserk.

At any given time in our house you could probably collect twenty dollars of moneycoin from behind furniture, between couch cushions, and under beds.

Here moneycoin is ubiquitous, much to Jonah’s supreme satisfaction!

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open for business

Posted in Uncategorized, tagged , , , , , on August 8, 2010| 3 Comments »

“Grandma is open for business!”  Andy tells our son in the fake-bright voice of exasperation.

He is telling Jonah that yes, we can go see grandma now.  Jonah understands that when something is open for business, he can have it.  When it’s closed, he can’t.

Anything can be open for business or closed – including people (like Grandma), cookies, his scooter, cranberry soda, the TV, the Rensselaerville Falls, or even something that really is either open or closed, like an actual store.

Jonah loves his grandma almost as much as she believes the sun rises and sets on her only grandchild.  Only two things stand a chance at trumping her on Jonah’s request list:  go-see-train and swimming, and even among those prized temptations, grandma usually wins out.

Jonah is eight and a half.  He has autism, and for him, and our family, that means he speaks only in small phrases yet can somehow sing entire songs (usually by Guster) verbatim.

It means children are largely obstacles to Jonah, things to move past or get around, and adults are providers of hot dogs, car rides, games of chase, and “mem-a-made” (lemonade).

It means he will pee pee on the potty when bribed, and will (only very recently) squat and squirt out a tiny poopy on the potty when promised a coveted “black soda” (any kind of cola).  At all other times he wears pull-ups, requiring frequent and oft-stinky changes.

It means he drives us to distraction with his repetitive requests (“Outside?  Outside?  Outside?  Wanna-go-see-train?  Grandma?  Outside?”), but he endears himself just as repeatedly every time he nestles in for a big huge “huck.” (hug).

It means that until he was eighteen months old or so, we had very little idea what the hell was wrong with our kid but we knew that something strange was definitely afoot at the Circle K …yet we kind of dismissed autism as a possibility because “those kids just sit in the corner and bang their heads against the wall” — and, well, our son was so bright, loving, and engaged.  Couldn’t be autism.

It means sometimes there are Saturdays when by 10am I am already “all done” with the weekend and wishing I could go back to work instead of pulling my son away from a crowded playground because he won’t stop shouting “penis!” and all the parents are glaring.

It means I have been drawn inexplicably and unwillingly into a world where surreal is the norm and life is sometimes simply pushing through one minute at a time – sometimes excruciatingly, sometimes hilariously.  Sometimes both.

It means all of this and more, and for this writer, it is high time to write about it.  I was supposed to maybe have a blog on our local daily newspaper’s website, and the editor over there seemed initially interested in my proposal to do so, but now after weeks have gone by, he has yet to answer either (A) my follow-up voice mail or (B) my follow-up-e-mail-regarding-the-follow-up-voice-mail, and I don’t feel like begging the dude.  Plus they’d probably censor me, and fuck that.

This blog, then, about and in honor of Jonah Russell, is “Open for Business!”

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