Posts Tagged ‘Colonie Center’

Oh, the irony.

I write a monthly column (also named Normal is a Dryer Setting) for the Capital District Parent Pages, which is distributed for free on the first of the month at several locations in and around Albany.  This means I have to write the columns nearly a month ahead of time.  My column for the February issue was devoted exclusively to how much Jonah loves one of the big malls here in Albany and how he has developed a specific route through the halls and stores.  For those of you who don’t read the Parent Pages, here it is:

Normal is a Dryer Setting – February 2011

Jonah’s been asking for “mall” a lot lately.  As I’ve mentioned before, we used to visit a lifeless mall with the singular purpose of escalator riding.  But now his version of “going to the mall” involves a different, specific shopping center and a highly specialized course that cannot under any circumstances be altered in even the slightest way. 

I think he has lain awake nights craftily planning this path, for it is a winding trail through stores and hallways that’s as random as it is precise.  Yes, the escalator is still a huge piece of the puzzle.  However, unlike most children for whom a toy or music store is the desired goal, Jonah’s all about the expedition.  In his little Zen-like brain of autism, the journey is the destination.  The upswing is that he doesn’t want anything that costs money; the downside is that if I want something that costs money, I’m out of luck, for there is no stopping – it’s a one-way express trip paced by Jonah’s caprice.

The trip to this mall means we must park near the side of a certain magnet store and go in through an exact entrance.  We have to pass certain racks of clothing so he can reach out and touch the soft sweaters and scarves, then walk behind a checkout station, around a store mannequin, and make a sharp left toward the venerated escalator.  Up we go, Jonah’s attention divided between the store lights and the sensory input from the movement of the ride;  at no point does he look down or pay any attention to where he is in the progression of the ride, yet he never fails to step off the escalator with perfect timing.  At the top is a vast array of huge-screen TVs, something I always expect to capture his attention, but no – he is already seeking the down escalator, leading us with confidence toward its return trip to the first floor.

Here we travel along another wall and enter the mall itself, where he skirts closely by a play area, mildly interested but not curious enough to enter, for there is another escalator at hand and that’s far more compelling.  We journey once again to the second floor, and here Jonah travels along the railing, up on its little step, holding onto it and sliding his hand along its smoothness.  God forbid someone is leaning on the railing or has paused to rest; there was a time he considered people mere obstacles to try to walk right through, but we’ve taught him to “go around,” so now he’ll let go of the railing just long enough to skirt by the bystander and grab hold of it again on the other side. 

After this, we reach his favorite store where, to reach its escalator, we have to evade such obstacles as cosmetics counters and perfume displays.  At the top, the path to the down escalator is tricky, involving an ungainly passageway of pushing through racks of coats, moving around men’s suits, and a risky bull-in-a-china-shop course past an exhibit of crystal wine glasses and dinnerware.  Unfortunately, and for some reason known only to Jonah, the intricate trail from this particular up escalator to down escalator is the one he desires to tour repeatedly, so we usually allow him three or four trips before store clerks begin to regard us suspiciously and we declare an end to this particular bit of fun.

Having survived the most challenging portion of our route, the rest is comparatively easy.  One more trip up the mall’s main escalator leads us right past a large toy store (something most kids would be unable to resist) and into another large magnet store – this one, though, possessing not one but two sets of escalators, allowing for three full floors of up and down excitement.  We inevitably exit the store on the second floor, where Jonah leads us directly past all the previously enjoyed meanderings, down one last escalator, and back into the original store, lovingly giving the same sweaters and scarves one last caress before heading unswervingly back to the original door where we entered perhaps 45 minutes ago.

It is a journey fraught with meaninglessness, but no more so, I think to myself, than your average shopping trip.  So off we go, having done nothing more than seeing the mall through Jonah’s unique eyes…which turns out to be doing quite a bit, if you think about it, after all.

I share this particular column for a reason.  There’s not a whole lot Andy or I can do with Jonah anymore that he enjoys, especially in winter (unless you include sledding, and even that has its bad days, like last time Andy took Jonah and he only went down the hill one time because some people with an unleashed dog were there, and the dog scared Jonah so he wanted to leave).  Jonah’s list of requests for “outside” activities have been narrowed down to car rides/train, the grocery store, going to see grandma, and the mall.  That’s about it. 

And now the activities have been further limited. 

Sunday afternoon, after I came over to play with Jonah for a while, Andy took him to the mall.  Nothing seemed different and Jonah was enjoying his route as usual, until they approached the children’s play area — and like a striking snake Jonah shot away from Andy and launched himself at a toddler, attacking for no reason, going right for the kid’s face.  Andy had no time to stop him; he could only intervene.  Thankfully the parents were calm and relatively understanding, saying their child wasn’t hurt, while Andy had no chance to even explain because he was busy wrestling Jonah to the ground and restraining him, then doing an about-face and getting the hell out of the mall as fast as he could.

When I stopped by yesterday after work, Jonah was just getting out of time in his room for attacking Andy. 

“We can’t take him to public places anymore,” Andy said to me with a look of defeat that hasn’t left his face in months.  I asked if there was anything I could do, but really all I can do is visit my boy as much as possible, play with him “downstairs” (our heated basement which he requests quite a bit), and soak up the time I have left to see him at a moment’s notice before he lives full time two hours or so away.

The child psychiatrist’s appointment we’d scheduled for the 2nd of February was canceled (due to that “huge storm” that never really materialized), so we’re going back this coming Monday to see if we can adjust his meds or whatever.  Then Andy and I have an appointment to tour Tradewinds in Rome on the 17th – if we like it, we’ll bring Jonah back so they can assess him.  Still waiting to hear from Springbrook

Last week we toured a respite home (Heldeberg House) on Western Avenue in Guilderland – they provide between 30 and 40 days a year for day or overnight care – but Andy has so little confidence in their ability to handle Jonah that we’re not even going to try it. 

The car, too, has become increasingly unsafe because Jonah can (relatively easily) unhook himself from that expensive 5-point harness I bought.  We’re looking into buying the harness that he uses everyday on the bus.  We need something he can’t get out of before he hurts one of us or makes us crash the damn car.

If I were the type of person who believed in a God with human-like attributes, a God who gives and takes and picks and chooses who to mess with, I’d yell at Him/Her:  What the living hell?  Why do you have to take everything away from our little boy?  Why do you have to keep piling on the shit?   When will we have had enough?

But I’m not that type.  I think Divinity is uncomprehensible and inconceivable by mere humans, and I like it better that way.  It’s the only way I can continue to believe in any kind of Divinity at all.  Not to mention there are hundreds of thousands of people on this planet in worse shape than we are.

And yet I feel the resentment rise again, the familiar angry frustration, the envy, the anguish. 


I am, at least, thankful that Jonah has a wonderful father who takes care of him with unwavering strength, determination, love, and patience. 

Silver linings and all that.  Thank you, Andy.

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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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