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Archive for the ‘escalators’ Category

My car’s thermometer tells me it is -3 degrees outside today, but at least I got the hell out of the driveway and to work.  I have so much to do it is overwhelming, but maybe that’s for the best.  I can focus on something else besides residential schools and my son’s attacks and how to navigate it all. 

This was a good weekend for Jonah-boo.  I came over to the house both Saturday and Sunday; of course we go to grandma’s nearly every day and sometimes (on the weekends) more than once. 

He loves to enjoy a snack on her counter, with his favorite butt-in-the-air position, and though we usually make him sit in a chair, he gets special privileges at his precious grandma’s. 

Saturday I brought him over to the apartment with M where he enjoyed playing with the bead necklaces I make constantly/therapeutically:

….and playing with M’s dog, Jack:

who is a big 90-pound 2-year old galoot of a mutt-pup and evidently wishes to lick humans to death.

At first Jonah was intimidated by Jack, and he still is a little skittish every time he first sees Jack because Jack gets very excited when anyone comes over, but the dog quiets down soon and then Jonah is interested, petting him gently and throwing him treats.

Andy took Jonah sledding on Saturday too, so our boy had lots of fun – he got to go to grandma’s, take 15 or so baths, visit his favorite mall and traverse the circuit throughout it he’s invented, go to the grocery store a few times, and play more with his mama when I visited again yesterday for a few hours.  We played “ring around the rosy,” did slinky on the stairs, and repeatedly filled a yellow bucket with colored straws, flash cards, and moneycoin, then tossed it gleefully into the air and sang “clean up, clean up, everybody everywhere” while we picked it all up, only to transport it to another area of the house and start all over again.

So all in all it was a good weekend for boo.  I am afraid of falling into the negative, both temperature-wise, depression-wise, and Jonah’s behavior-wise.   I’m so scrawny I freeze to death in even the 30-40 degree weather, and I am bone-frozen and bone-tired…fighting apprehension, wearing long jonhs on under my work clothes…pushing back at the worry…that kind of thing.

I’m having some social anxiety, sometimes feeling unable to go places or do things – like the mall, or a restaurant.  It comes and goes.  I missed my Uncle John’s birthday party yesterday because I didn’t want to show up and see all my family and make small talk and all the while feeling surreal, trying not to cry.  Who wants the crazy member of the family to ruin all the fun? And even though I know they wouldn’t treat me any differently (I love my family), I might say or do something stupid, or get all paranoid, or witness the normalcy of everyone around me, the “regular” kids, feeling the resentment rise, wishing I were someone else, somewhere else, like I tend to do sometimes.  I will send him a card with some scratch-offs and a big apology and hope nobody thinks the worse of me for it.

And when I called my mom to tell her about my conversation with that one mom whose son is doing so well at Springbrook, I caught her at a bad, weepy, worrying time.  She seemed almost angry that I was continuing my investigations of these places.  “He’s doing so much better lately,” she claimed desperately, her voice cracking with anguish.  “You don’t need to send him to an institution.”  When I explained that I would rather be super-informed before making a decision that may or may not be imminent, she didn’t seem to hear me. 

I would rather be dead than see him in an institution,” she cried bitterly.  I told her I would stop talking about it – that it would be a last resort – that Andy and I would do everything we could to keep him at home.

We are taking Jonah to see the child psychiatrist again on February 2nd.  Maybe he has some ideas for tweaking his meds. Maybe Wildwood’s new behavior plan will begin to take hold.  Maybe the new stability in the house with Andy will improve his overall ability to adapt to changes and triggers and fears. 

In the meantime, I will continue my investigations – I see no point in remaining uninformed; if not for Jonah, than for other parents who may be facing these decisions.  I just won’t be telling my mother about it.

Ignorance may not be bliss in this case, but hopefully it’ll at least allow her to sleep at night.

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So last weekend Andy and I decide to go to the Capital Region’s deadest mall, knowing one of their last remaining open stores is a haircut place and seeing it is obvious Jonah looks kinda sheepdog-ish and definitely needs a cut:

Here he is, pre-haircut, eating egg & toast (one of his new favorite food requests) at grandma’s house. 

So we tell him we’re going to the mall.  When we arrive, the escalator isn’t working and they’ve blocked off the mall entrance to one of the two last remaining magnet stores because the mall proper is kept so cold that the employees of the store can’t stand it, and I’m thinking how much longer before this place goes under?  Is it just a mafia money-laundering machine? 

I certainly can’t envision any way in hell the mall is operating in the black, but our mission is to get our kid a haircut, so I cease my mafia fantasies and we proceed past the freezing cold mall-walkers and into the haircut place, which is the most crowded area in the entire mall.  M and I took Jonah here once before and Jonah remembers everything – he plunks himself right down in the same chair he sat in last time, and straightaway eyes the candy machine where we’d fed quarters into it to procure handfuls of colorful stale skittles with which to distract him. 

That time he was first in line, however, and this time we’re third in line.  It’s not a long wait but any wait starts the time-bomb ticking for Jonah Russ.  So when we’re called in it’s to a different chair, and Andy immediately announces to the stylist that she’s got 5 minutes and only 5 minutes.  I explain Jonah has autism, and she does her best, quickly fastening the bright-red cape over his head and getting down to business.  But soon it’s apparent Jonah’s not having it.  We’ve fed him all the candy I bought from the machine and Andy positions himself in front of Jonah, holding his arms, while I promise a lollipop and we start a 5-mnute countdown.

“Five more minutes, boo,” we tell him, and then we continue to count as the stylist clips and shaves his sideburns and Jonah starts to intone “all done” over and over with increasing urgency.  I can hear the time bomb begin its final loud ticking and sure enough, just as we announce “one minute, almost done,” Jonah launches himself at Andy and out of the chair.  Andy rips the cape off his neck and leads him to the entranceway, where they start to struggle. 

I quickly hand the stylist a twenty dollar bill for the twelve dollar haircut and she disappears, presumably to get me change, and I can feel other clients and stylist’s stares burning holes in my back, but it’s funny how you learn how not to care – so I turn and follow Andy and Jonah out of the store and into the hallway, where the struggle/attack continues and we finally settle Jonah on the bench right outside the glass windows of the haircut place (free show, everyone!) , his head 3/4 cut and 1/4 sheepdog.  Later we snipped at his head in the bathtub and now he looks at least passable. 

So now Andy’s on his 4th day with Jonah – no school Monday because of the holiday and no school today because of the snow/sleet.  I’m talking with all different people at these residential schools, trying to balance my emotion with reason, attempting to gather information and keep my anger/frustration under control as I go up against what my latest commentor has called “a brick wall.” 

I know I am dealing with a system that’s so broken it’s seeing itself in a hundred million smashed mirror pieces, no longer able to glimpse in any whole way how damaged it has become.

But I can see it and I know there are others who can too, and I must at least try to do something.

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Happy 1-1-11 everyone!  (I love when dates line up in cool ways like that).

So yesterday Andy was giving Jonah his morning ride to the train and then Johan wanted more car ride, so they’re going down New Scotland Ave and right in front of him this big pickup truck veers off the road and smashes into a giant oak tree.  Just keep going, Andy thought, worried that if he stopped the car Jonah would freak out.  Just call 911…someone else will stop. But like the nice guy he is, he just couldn’t do it.  So he pulls a little past the truck and runs back to see what’s going on.  Turns out the guy driving must have had a heart attack or a seizure or something; he’s about 50 or so, Andy thinks, and all slumped over with his eyes rolled back in his head, only the whites showing.  Andy calls 911 and tells them where the accident is, and a teenager runs across the street to see what’s going on; Andy hears the driver breathing but his breaths are all raggedy and raspy.  “If he stops breathing we have to get him out of the truck,” Andy tells the kid, “and I’ll give him CPR.”

By this point another car has stopped and Andy asks one of the two people if they can go check on Jonah in the car.  But there’s some confusion as to which car is Andy’s, and now the driver’s all slumped over into Andy, moaning and trying to move.  “Just stay still,” Andy tells him, and the firetruck arrives.  Andy gives a quick description to the emergency personnel of what happened and how the driver is doing, and then he runs quickly back to the car.

Jonah’s gotten himself out of his car restraint completely and is wreaking havoc in the car – banging Andy’s coffee cup on the console, screaming and kicking.  He tore the knob off the radio and is going ape-shit.  So Andy opens the door and Jonah and he are struggling in the car and then out on the street, just 50 yards or so ahead of the car accident scene.   By this time Jonah’s got Andy’s hands all scratched and bleeding and he’s bitten one of Andy’s hands twice, pretty bad.  Now Andy’s worried that someone’s going to notice his scene and wonder what the hell he’s doing to his kid, so he wrestles Jonah back into the car restraint and hightails it outta there.

He decides next time he’ll just call 911, at least if Jonah’s in the car.  I think this makes the 5th or 6th time one of us has dialed 911 since the August day when Jonah put his leg through his bedroom window.  Too much 911 for us, man.  Let’s have a 911-free 2011.  Please.

All in all, though, Jonah’s been doing really well.  So well that we’re reconsidering placement and hoping he’ll get nicely back into the school routine come Monday.  Jonah probably just got all freaked out being left alone in the car for the 7 or 8 minutes Andy was gone, so Andy didn’t take any punitive action.  He called me and we ended up taking Jonah to Colonie Center, where he could go through his highly customized routine of visiting stores he likes and their escalators.  I tried to stop by LensCrafters to say hello to my peep Sue, but she was busy with a customer.  She saw me, though, and we waved to each other, and then Jonah pulled the three of us back into his preferred mall route.  He does not enjoy varying from this route and we sure as hell weren’t going to press the point.  Not this day.

Can the strange, unusual, stressful, crazy events please stop haunting us this year?

We’d really appreciate it!!!

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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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