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Posts Tagged ‘Lenscrafters’

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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part one:  black wednesday – I’m very glad I posted my giving of thanks when I did, when I had a minute to type between leaving work early and my dad’s arrival, before the deep descent, before I forgot to be thankful for anything at all in the midst of this maelstrom.  When my father came, we went together to pick up Jonah at the Center for the Disabled’s afterschool program; I walked in and knew immediately from the caregiver’s faces there was bad news.  He’d attacked the whole time…children, too.  The director essentially told us Jonah is on the verge of being kicked out of the program.

Deflated again, (how many times can a balloon be deflated before it is limp and dead?) my father and I each took one of Jonah’s hands and led him out of the building.  My father wanted to sit in the backseat with Jonah; I warned him strongly against it, so he sat in the passenger seat.  I don’t remember what the plan was but I knew there wasn’t much food in the house so I suggested we ride to Burger King and get food at the drive-thru to take home.

We got all set up in the kicthen with the food, and Jonah seemed fine.  Then he made the hand-swat motion, and I knew he was probably ramping up for an attack, but this truly insane hope rises in me every time right along with the panic, and before I could think another thought, he attacked full-force at my father,  knocking the chair over, scattering pickles and french fries and drink everywhere, my dad frantically wrestling him to the floor while I did my best to hold Jonah’s head down so he couldn’t bite.  My dad was bitten anyway, several times, then kicked hard all over his torso – I heard his moans and desperate pleas for Jonah to get off him, awful sounds I never wanted to hear – helpless groans, like we were being attacked in a back alley somewhere.

Finally I gasped to my father that he should get up and run away from Jonah.  He did, and Jonah went straight for me.  I ran into his room, knowing he’d follow me there, and he did, mangling my glasses, ripping at my hair, kicking and hitting and biting me — my dad came back in to try to help and Jonah beat the shit out of us both.  Finally I shoved Jonah toward and onto his bed, and my father and I got the hell out of the room.  Jonah’s room has no lock so my dad and I took turns holding the door knob as hard as we could while we looked at each other with terrified, disbelieving eyes.  Then we heard Jonah fling himself at the window, and SMASH SMASH SMASH he pounded his feet against it – thank God we’d had the Plexiglas installed – I opened the door briefly to check and see if he was okay, and in a rage he flung himself at me again.  I shut his door again and tried hard not to sob, scream, punch the wall, wail to the universe that I CAN’T TAKE THIS ANYMORE.  My dad, in a broken voice, agreed that we should call 911.  We were afraid Jonah’d pull the dresser over on himself, that he’d get out of the room and hurt us more, that we couldn’t care for him and keep him (or us) safe.

It was the fourth 911 call I have made in 4 months.  Then I called Andy, who came home from work.  He got there first, but shortly after that 3 Albany Police Department cops arrived, 2 of whom were kind but helpless — a third, Officer W, was just plain mean – accusatory in his manner and voice, as though we’d called them over for nothing.  “Why are you so unkind?” I asked him at one point. He left the house eventually and I talked to the other 2 cops.  “We don’t have anything we can do in this situation,” explained one of them.  “We can’t very well arrest him.”  No shit, but can you help us? The answer was no.  Nope, they couldn’t help us.  So the kindest of the three officers made a phone call somewhere and found out they could get child psychiatric mobile crisis involved, but last time that happened we ended up in the CDPC crisis center for four days.  No thank you.  So they left us, not wanting to meet my pleading eyes.  The cops left, and I sat there thinking my son beat up my dad and me and we called 911 to keep everyone safe and they could not help us at all.

Jonah had worked himself into an exhaustion and fell asleep in his bed, so my shaken dad finally left.  I wrapped myself in a blanket on the couch and stared numbly into space.  911 is a last resort, right?  A way to get someone to do something, finally, to help us?  A way to hook us into emergency placement?  A way to save our crumbling, threadbare, intolerable situation?

Wrong.

part two:  black thursday – I brought M to my mom’s for Thanksgiving, and Andy went to his parents’ house.  It was just the four of us, mom, me, M, and Jonah, at the Thanksgiving table, and Jonah was happily eating a buttered roll, when BAM out of nowhere Jonah attacked, sending dishes flying and grabbing my glasses off my face.  M pinned him down on the kicthen floor, but it took him ten minutes or more to get Jonah to the point where we could let him up, my mom could clean and pack up some food for us to take with us, and we could leave. I mushed my glasses into a semblance of shape and we drove away.

Later I dropped Jonah off at the house and to Andy (along with a piece of pumpkin pie from my mom), where Jonah soon fell asleep –and M and I ate our Thanksgiving meal alone in his small apartment, the two of us drained, shaky, and quiet.

part three:  a big fat friday of black – On Black Friday Andy and I decided to start investigating placement for Jonah.  I called OD Heck (what I thought was a local residential placement center in Schenectady) and was told there were no more children’s residential services there; they transferred me to an Albany office, some developmental disability place, and they transferred me somewhere else.  Finally I spoke with a kind psychologist from DDSO  (developmental disability services office?) who sympathized but could do little else.  Nothing exists to help us.  He thought maybe we could try the ER.  Then Jonah attacked, viciously pulling my hair and mangling my glasses again.  Andy pulled him off me and subdued him in his room, then called the doc and got into a fight with him because the doc wouldn’t help us by adjusting Jonah’s meds or dosage.  “Take him to the Albany Med ER,” he said.  So, having heard the same advice twice from two different people, we did.

I packed up a bag and Jonah’s accordion file folder full of information, and we drove ourselves to Albany Medical Center emergency room where they set us up in a room, took Jonah’s blood pressure and temperature, and listened to our tale.  “So you think he needs to be admitted?”  asked one young doc.  “Yes,” I answered, envisioning a complete work-op with an MRI and whatever else they do to rule out medical causes of behavioral aggressions.  Soon Jonah showed signs of agitation, so we asked for a sedative for him.  The doc came in with 4 other nurses; they gave him a shot of Atavan in his leg. About 10 seconds later came the attack, not a surprise to us, but the meds took so long to work that they all had to keep a firm hold on him for 10 minutes or so.

Even though Jonah became groggy, they expressed surprise that he didn’t fall asleep.  I lie in the bed and tried to get Jonah to snuggle with me and watch Back to the Future on the TV, but he was agitated and kept moving around sluggishly.  The mobile crisis unit came and kindly spoke with us, and it started to look and feel a lot like the whole CDPC experience.  They made phone calls and tried to find a place for Jonah but to no avail.  Albany Med would not admit him.  The doctor there would not adjust his meds.  “I don’t feel comfortable doing that,” she said.  Nobody does, apparently. I asked a few different people what would happen if I were all alone and Jonah tipped a TV over on me and killed me.  No one had an answer for me.  They simply didn’t know.

A kind nurse made Jonah some turkey-balloons out of medical gloves and he crouched in the doorway, playing with the balloons and pleading every few seconds to be “all done?”

Finally the doc conceded and gave us a script for Atavan in pill form to get us through until our appointment to see the child psychiatrist.  So 8 hours and $100 later we left the hospital with what our family doc could have called in over the phone to the pharmacy.  I drove to Lenscrafters (at the mall, on Black Friday of all days) to get my glasses fixed but they were so broken this time they had to give me a whole other pair of frames.  About four hours later, at home, Jonah puked and shortly afterward, he fell asleep.

NOBODY WILL HELP US.

Oh, the terrible irony of finally coming to terms with the fact that we may have to place him and then find there is nowhere he can go, nothing we can do.  I am so angry at a system that gives us no help and no answers and is apparently willing to wait until someone is seriously injured or killed to step the fuck in and DO SOMETHING.

It’s a black Saturday too, folks, but I don’t have it in me to tell that half-completed tale.  

I’m done.

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It’s 7am and Jonah’s already attacked me – he asked for “train-a” (he’s been putting an “uh” sound on the end of a lot of his words lately) so I told him it was a school day but we could go to see the train after school.  This is a pretty standard conversation in our house so I didn’t expect it when he tore at my face, scratching me near the corner of my eye and mangling my glasses.  For the second time since I bought them on October 23rd, I’ll be at Lenscrafters today to get the glasses fixed.   I think I’m going to be their best customer.  Now the almost-brand-new glasses are really mangled – no matter how I try to push and pull them back into shape they sit crooked on my face.  I look and feel like a broken doll.

It’s “special persons day” at Jonah’s school which means both my mother and father will be there, and Jonah’s classroom is preparing a special Thanksgiving feast; I pray to God and little baby Jason that Jonah’s a good boy, at least for most of the time.

This past weekend Andy took care of Jonah (with help from my mom) while I went to NYC for an adoption conference for work.  Because I am adopted I especially enjoy talking to the prospective adoptive parents, agencies, and attorneys – I was an exhibitor at the conference because we facilitate adoption advertising, and because I did not have Jonah for a day and a half I enjoyed the guilty pleasure of freedom.  In addition to manning an exhibitor table, I was on a panel of parents who spoke about “raising a challenging child.”

All the other parents on the panel had adopted special needs kids – the kids had separation trauma, fetal alcohol syndrome, bipolar disorder, you name it.  One couple had actually adopted 15 kids (!), 3 of which they had to place in a home because of violent or out of control behaviors.  Jonah’s all I’ve got, and to place him is something so hard to comprehend that I’m wild to try everything/anything else we can, as quickly as we can, to seek another way.

Would I have deliberately adopted a special needs child?  My first reaction is to say hell no, but when I was pregnant I told God (naive little big-bellied me) that He could give me a disabled child or a gay child, that I would be okay with either.

My running joke now is that Jonah is probably both disabled and gay.

Someone I met on an autism group on Linked In sent me an obviously self-published book they wrote about their “journey home from autism” – and a children’s book they’d written as well.  Very kind, to send me the books for free, and I haven’t read them yet, but I’m going to use this as an opportunity to bitch that I’m tired of the whole Jenny McCarthy “you too can rescue your child from autism” schtick.    Most of the time I think these “rescued” children were mis-diagnosed in the first place.  I believe that 50 years from now it will be apparent that what we now call “the autism spectrum” is actually about 10 different things.  Jonah was unquestionably born with autism- our family physician noticed issues before he’d even had his first immunization, and in hindsight I can easily see how he was very different from neurotypical babies.  How can that be the same thing as the child who develops normally for however many months, gets a shot, and suddenly “falls off the planet,” losing all his or her social, verbal, and other developmental accomplishments?  It can’t. The symptoms might mimic each other but the underlying cause and condition isn’t the same.

If anyone had figured out a real, viable way to “rescue” these kids from autism, we’d all be on that fucking bandwagon, trust me.  But what works for one child doesn’t work for another, and the “here’s our amazing story of how we  pulled our precious child out of the bowels of the hell that is autism” books are a dime a dozen nowadays.  You can’t throw a stone at a bookstore without hitting something written by people who want to share the inspirational tale of tirelessly helping their child become “normal” again.

The parents of kids with autism don’t need to feel guilty about what the Superparents accomplished that for some unknown reason the rest of us haven’t been able to.  Since the market is flooded with these Superparent success stories, I think what parents need is for someone to write: this sucks, and I don’t know what to do either, and I’m trying hard, and I’m afraid, and I understand, and I’m in the same boat, in the same perfect stormI’m drowning too.

I understand.  I’m drowning too.

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