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on a tear, and a triangle

Posted in autism, behavior, Uncategorized, Wildwood, tagged on March 3, 2011| 1 Comment »

There isn’t really any good news to report.  Jonah’s been “on a tear,” as Andy describes.

Andy’s had to hold him and give him rides to and from school randomly this week because Jonah tried to attack him, the bus driver, the bus aide, or went all hysterical crying and wouldn’t get on the bus.  The teachers at school write things in the log book that, as always, attempt to underscore things that went right during the day as opposed to focusing on his behaviors, but they of course also tell us about the aggressions and what they’re doing about them. Today they must have battled so many aggressions they lost count because instead of naming a number as usual, they simply wrote “several.”

I’ve got a freelance writing project to complete and just one week to do it, so I only stopped at the house briefly today to drop off some birthday presents my dad got Jonah for his birthday (he’ll be 9 on March 7th) and assemble some birthday goodie bags to send into school on Monday for the little party they’ll have for him.  For the few minutes I was there, Jonah walked around agitated, swatting the air with his hand and cocking his arm as if ready to hit, for no apparent reason, anyone who dared cross his path.

At one point Andy, in his dry manner, commented:  this is him being good.

So now here I am, trying to do my writing work as fast as possible so I can help Andy care for him this weekend, but the software system I’m using to submit the writing is so slow that I actually have time to create this blog post between the pages that are loading at a snail’s pace.  Grrrrrrr.

Yesterday I drove to Syracuse and then Ithaca for my day job to train some newspaper peeps.  On the way home I passed a town sign that made me laugh aloud, so I simply had to turn around, pull over, and take a picture of it.

If you don’t have my sense of humor, you’re going to ask why the hell I took this picture.

But if you “get it,” maybe you’ll laugh too.

God knows I needed a laugh.

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days are long; we carry on

Posted in autism, behavior, placement, singing, Uncategorized, tagged , , , , , on February 22, 2011| 1 Comment »

“If we fell inside a forest
Would it make a sound?
It doesn’t seem there’s anyone around;
Days are long, we carry on
But still don’t understand…”

~ Hang On, Guster

I won’t go so far as to say we “won the lottery” on Monday, driving Jonah to and back from Tradewinds, but it sure could have been worse.  For the most part Jonah was okay, except for two times when Andy rode in the back with him because he was hitting the window and acting squirrelly.  Plus he kept saying Simon?  Simon? Simon? at ritualistically annoying intervals (Simon is a friend’s little boy Jonah almost never encounters).  We’ve learned to just agree to whatever he’s going on about, in general, so there was a lot of either Andy or me saying Yeah, Simon! That’s right, buddy!

We’d brought lots of snacks and had fed Jonah breakfast, so the ride out was an odyssey of peanut butter crackers, cheetos, and Sun Chips with sips of Elmo juice boxes and lots of crumbs in the backseat.  When we arrived we were thankfully greeted quickly; Jonah was obviously confused, I’m sure hoping we weren’t at some new doctor’s office.  He attempted to go right back out the door, mumbling “home,” then tried to climb his dad, but we managed to get him to walk down the hall, out a door, down a path, and into one of the residences where several staff members were waiting to meet and observe him.

We weren’t there for long.  Jonah didn’t really want to explore and seemed nervous, though he didn’t attack and we managed to answer some of the staff’s questions while watching him.  Jonah briefly played with a bead runner and sat on a couch, then again asked for “car ride” and “home,” so we went back through the school building to the main entrance, said goodbye, and started home again.

Andy and I have a hard time discussing details about the residential educational places we tour.  It’s a surreal experience, touring and choosing a place to leave your child in others’ care…not for a few hours, or a day, or a weekend, but for some indeterminate amount of time – months?  Years?  We don’t even know.  So I just asked Andy what he thought of the place and he briefly responded in the positive; we drove away from Tradewinds with Jonah in the back innocently asking for swim pool?  swim pool?  train?, not knowing his very life and future are being decided by his two scared parents in the front seat.

This whole week is vacation for Jonah, so Andy’s got his hands very full.  It’s hard to describe an entire day of caring for Jonah, not to mention with the limited options imposed on them by the cold, the aggressions, and Jonah’s ever-increasing capricious nature about what he wants to do, where he wants to go, what he wants to eat…you name it.

We don’t know if his latest med change has caused him to act more unsettled, but Andy tried the klonopin with Jonah a few times as needed and it only seemed to make Jonah even less able to focus and function – so he stopped using it.  Tomorrow I’m going to call the psychiatrist who prescribed the meds and see what he thinks.

All this week I’m going straight from work to the house to spend some time with Jonah so Andy can have a little break.  Of course they are also going to my mom’s every day, but she hasn’t been feeling well and Jonah doesn’t want to stay that long lately.

When I arrived today Andy told me Jonah had barfed three or four times but didn’t seem sick.  One of the bummers of Jonah’s level of autism is he doesn’t know enough to run to the bathroom and puke in the toilet.  He just lets go wherever he is, and the best you can do if you suspect it’s coming is to chase him around with a bag or a bucket.  If you’re alone with him, you’re cleaning in one spot while he throws up in another.  It gets old quickly.  And besides being sick all over the house, Jonah also was aggressive all day.

When I got there around 5:15, Jonah was in his room on a time-out.   He was glad I came, so when he’d served his time, we started playing in the bedroom, his recent choice for a fun place to play.  He seemed fine, jumping on the bed and singing along when I invented songs, tickled him, and took his picture with the camera.  I’d brought him some colored straws with sparkly strands hanging off them and he clutched them happily, waving them around.

Andy said he’d been saying mama’s comin’ all day, so I was glad he was a good boy for me and enjoying himself so Andy could have a break, albeit a short one.

I’m sure Andy’s looking forward to Monday like never before; in the meantime, I’ll help as much as I can.

Next month, it’s on to Springbrook.  Until then, we, especially Andy, will be getting through the long days, carrying on, one minute at a time.

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dr. jonah and mr. rain man

Posted in autism, behavior, placement, Uncategorized, tagged , , , , on February 20, 2011| 1 Comment »

Roger Ebert, the famous film critic with whom I sometimes disagree but almost always respect for his reviewing and writing skills, says the following in this excerpt of his review of Rain Man (1988), which he gave 3 1/2 stars (out of 4):

“Rain Man” is a project that Hoffman and Cruise have been determined to bring to the screen for a long time. Barry Levinson came on board after three previous directors signed off on this material.

The problem, of course, was Raymond. If fiction is about change, then how can you make a movie about a man who cannot change, whose whole life is anchored and defended by routine? Few actors could get anywhere with this challenge, and fewer still could absorb and even entertain us with their performance, but Hoffman proves again that he almost seems to thrive on impossible acting challenges. “You want taller?” he asks in the audition scene in “Tootsie.” “I can play taller. You want shorter? I can play shorter. You want a tomato?” And he can play autistic.

At the end of “Rain Man,” I felt a certain love for Raymond, the Hoffman character. I don’t know quite how Hoffman got me to do it.

He does not play cute, or lovable, or pathetic. He is matter-of-fact, straight down the middle, uninflected, unmoved, and uncomprehending in all of his scenes – except when his routine is disrupted, when he grows disturbed until it is restored. And yet I could believe that the Cruise character was beginning to love him, because that was how I felt, too.

I loved him for what he was, not for what he was not, or could not be.

That last sentence moved me, and I admire Ebert for coming to that insightful conclusion.  I remember seeing the movie when it was released (I was only 19 or so) and being impressed with it, but until I had a son with autism and watched it again, I had no idea (a) how much greater an impact the film would have on me or (b) what an amazing acting job Dustin Hoffman did in somehow almost actually becoming a person with autism.

I do love my son for what he is – not for what he is not, or cannot be.

Even when he is alternately a fun-loving, happy kid and next minute a scratching, biting aggressor.

Yesterday was not a good day for Jonah.  Twice I went to the house – the first time to give Andy a break because Jonah’s behaviors had been ramping up and he’d attacked Andy – he ended up attacking me too toward the end of my visit; I have three rake-like scratches on the side of my cheek to show for it.

Just minutes before, we were playing and singing on the bed and he was asking for “black camwa,” which usually means he wants me to take some pictures.  (Sometimes he insists on “no camwa” or will ask for “grey camwa” which is an older camera I let him use)…


The second time I went to the house was when Andy called me to say that Jonah had broken his glasses and he needed me to ride with them to LensCrafters to get them fixed.  So we drove to the mall and I waited with Jonah in the car while LensCrafters, with their usual speedy service, fixed the glasses in no time.  Andy didn’t tell me exactly what had happened and I didn’t ask, but when we returned and I left the house, I told him to call me if he needed me.

One of my best friends, K, was celebrating her 40th birthday with a party at a local restaurant last night, and Andy didn’t call, so I can only hope Jonah was better for him for the rest of the evening.


You can’t see the scratches Jonah made on my face in this picture, but someone at the party thought I had lipstick on the far side of my right cheek, then looked more carefully and asked me what happened.  I explained very briefly and then un-tucked my hair from behind my ears so it would hide the scratches.  It was a fun party and I didn’t want to start talking about Jonah; when I do, I usually try to add some humor because otherwise I’ll likely cry.

In a few minutes I’ll call Andy to see if he’d like a break for an hour or two today.  I’ve taken on a lot of freelance writing work lately, which is great, but now I’m extra busy when I’m not at “real” work.  I’m grateful I’ve got tomorrow off so I don’t have to take the day off –  in the morning Andy and I are driving Jonah to Tradewinds to be assessed; I’m sure the trip will provide plenty of blog fodder.

Plus there’s supposed to be snow today and tomorrow – not a whole lot, but enough to make the trip an extra special pain in the ass, I’m sure.  Maybe Jonah will be fine and everything will go swimmingly.

Like the lottery commercial says:  Hey, you never know.

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Tradewinds

Posted in autism, behavior, placement, singing, Uncategorized, tagged , , , , on February 18, 2011| 3 Comments »

Yesterday, Kathy (a social worker from Wildwood) picked Andy and me up as soon as we put Jonah on the bus and we headed to Rome, NY to tour Tradewinds, a residential facility for disabled children.

I sat in front and babbled like a Chatty Cathy doll the entire trip there – partly to avoid thinking or talking about what we were doing, partly because I’m just kind of a blabbermouth sometimes.

The facility is very nice – a series of 6 houses with 6 kids in each house; every child has his/her own bedroom.  No tubs, though, just like St. Colman’s – only showers.  I wonder if that’s a drowning danger thing.  You couldn’t drown Jonah if you wanted to; I think he has gills. 

At any rate the people were nice and informative and they asked us a million questions about Jonah and then showed us the house and the school building, then explained how they take the kids to the pool on Tuesdays and Thursdays at the Y, and on various outings and trips whenever possible.  They don’t, however, have any openings until at least June.  We’re touring Springbrook in early March and The Center for Discovery in late March.

When the tour was over I asked to sit in the back of the Kathy’s van.  Andy thought I was just being nice because I’d sat in front on the way there, but really I just wanted to sit back there and cry.  As a result it was a much quieter trip back; Andy’s not the talker I am, and aside from my blowing my nose as quietly as possible, most of the sounds in the car were in my head:

How can we do this?  How can I live this far from my child?  Will he be scared and freaked out and panicked when we drop him off that inevitable day and then leave him there like some abandoned dog? 

It’s not like he will understand if I say “mama and daddy will be back in a few days, sweetheart.  Mama promises.”

Andy and I are going back on Monday to bring Jonah so they can assess him.  I have the day off from work and Jonah has the week off from school, so it’s a good day to go.  It may be a nightmare getting him to stay calm for the car ride, but we bought one of those bus harnesses for the car so it should at least keep him safe for the trip.

When we returned from Tradewinds and got Jonah off the bus, I grabbed his bag to see what they’d written in his log book:  4 aggressions that day, and he seemed unsettled.  I hate the log book.  I know it’s necessary and they always include something positive, but I hate it nonetheless.  And yet I want to read it right away.  I don’t know what I expect them to tell us one day:  Amazing news to report!  Jonah was perfect all day; he started a whole conversation on a new theory he’s postulating on astrophysics, sat still and solved college-level calculus problems on his own, sang an aria from Mozart’s Marriage of Figaro, prepared a 4-course gourmet meal for lunch, and counted 246 toothpicks when the box fell on the floor; we now think he’s a savant and should be transferred to a school for geniuses.

Okay, so I’m being just a little facetious.

Lately I have been spending more and more time with Jonah, inventing games and running around and just spending time with him. 

He loves his slinky (he has several) and those bouncy balls you can buy for a quarter on the way out of the grocery store.  And Wednesday evening we played on the bed, jumping and hiding under the covers and singing.

We do so love our little boy.

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nobody wins

Posted in autism, behavior, grandma, placement, Uncategorized, tagged , , , , on February 15, 2011| 3 Comments »

Yesterday Jonah had another appointment at the child psychiatrist.  Andy and I tried to time it so I’d get there first to check him in, meet the social worker from Wildwood, and then Andy and Jonah would meet us there so Jonah wouldn’t have to wait (thus hopefully decreasing the chances of him flipping out).  It worked out pretty well.  Jonah did a very good job of staying relatively calm for the small amount of time the doc and a med student observed him- then Jonah and Andy left and I stayed behind with the social worker to talk to the doc. 

Doc wanted to change Jonah’s meds a bit – increase the risperdal by a little and remove the atavan PRN (as needed) and replace it with klonopin PRN.  When Andy and Jonah left, he wrote the scripts up and I explained that we were going on a tour of Tradewinds on Thursday.  Then I asked a “what if” question I’d been thinking about:

“What if we find the magical mix of meds and the aggression goes away?  Do we still place him?  Does he still need residential care?  Do you ever hit upon the right cocktail of meds and fix the problem?”

“Occasionally,” he answered, “but I wouldn’t get your hopes up.  Usually we can mitigate the symptoms for a short time.  But the decision is up to you.  Remember, the choice is yours.  If you place him, you can always take him back home.” 

Sigh.

I don’t like this kind of decision-making.  This ‘playing around’ with the course of my child’s whole life.  When I dropped the scripts off at the pharmacy and stopped at the house, I talked to Andy about this.

“He definitely needs to be placed,” Andy asserted. “I can’t even handle him anymore.”  At least he isn’t arguing with me – we are on the same page about doing the best for our son.  But how can we really know what that is?

Jonah’s log book from school reads like a roller coaster.  On Monday he had 6 aggressions.  On Tuesday he had only one.  Wednesday he scratched a peer.  Thursday he threw a toy at a teacher.  Friday he tried to throw a computer. 

I hate the inscrutability of it all. 

I hate the way my mother is falling apart over this; she doesn’t eat right, isn’t sleeping, and some days she just cries all the time.  She refuses my help to find her a therapist or get on some medication.  I can’t help her accept this and I feel like I have become her scapegoat and I hate that too.

Both she and Andy have indicated that they want to pack up and move to wherever Jonah is placed, when it happens.  I don’t know if they just said that, if they really meant it, but I must stay here.  I have a good job that pays well – much more than I could ever make in Oneonta or Utica.  I carry the health insurance for all of us.  I am the one who has the means to set up a special needs trust for our son, to draft a will, to set up life insurance, to afford a mediator for our separation, to maintain a home Jonah can come back to if and when he is able to do so. 

It all makes me feel abandoned.  I lose my child, my mother, my child’s father. 

I lose.  (Not that there are any winners).

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the speed of dark

Posted in autism, behavior, language, singing, swimming, Uncategorized, tagged , on February 13, 2011| Leave a Comment »

“I do not think God makes bad things happen just so that people can grow spiritually.  Bad parents do that, my mother said.  Bad parents make things hard and painful for their children and then say it was to help them grow.  Growing and living are hard enough already; children do not need things to be harder.  I think this is true even for normal children.  I have watched little children learning to walk; they all struggle and fall down many times.  Their faces show that it is not easy.  It would be stupid to tie bricks on them to make it harder.  If that is true for learning to walk, then I think it is true for other growing and learning as well.

God is supposed to be the good parent, the Father.  So I think God would not make things harder than they are.  I do not think I am autistic because God thought my parents needed a challenge or I needed a challenge.  I think it is like if I were a baby and a rock fell on me and broke my leg.  Whatever caused it was an accident.  God did not prevent the accident, but He did not cause it, either…. I think my autism is an accident, but what I do with it is me.”

~ Lou Arrendale in The Speed of Dark by Elizabeth Moon

The Speed of Dark is the only book I can think of that, when I got to the end, I was so disappointed there was no more to read that I just turned back to the beginning and started reading it again.  I’ve re-read it a bunch of times since; it takes place in 2030 or so and its protagonist is Lou, a man with high-functioning autism who must decide whether or not to undergo a new procedure which can make him “normal.”  I got the title of this blog from that book.  I’ve thought a lot about what it is to be “normal,” and what that choice must have been like for Lou.

Sometimes I wonder what Andy and I would do if there was a procedure like that available right now – something that could make Jonah “normal.”  I suppose most people would be surprised that I really don’t know…that it would not be an easy choice…that although I can’t answer for Andy, I actually might not be able to choose to make him “normal.”  And I don’t really even know why.   Maybe it’s because I’ve never had a “normal” child and don’t quite know what kind of mother I’d be to one.

Jonah — the way he is and all that he is —  is all I know.  I suppose if I could have every bit of him except the violence and aggression, that’s what I’d choose.  I don’t know if I want to eliminate the part of him that has autism.  There is something magic in that.  Something pure.  Unassuming.  Uninhibited, nonjudgmental, and innocent.  I’d want to keep all that.

This weekend M has his kids, one boy (N, age 11) and one girl (J, age 6), Jonah aged right in the middle of the two.  I get along fine with both kids but am continually amazed at what they know- how they act – what they say and think and do.   I try to imagine what it would be like if Jonah could be here too…if he were like the other kids.  Would he play with N, since they’re close in age?

What kinds of things would Jonah like to do?  Would he still want to swim and sled and sing?  Would he still like the same things to eat?  What would he be able to say to me?  What subjects would he be best at in school?

I’d have a million questions and no answers.  Nothing new about that…


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taking it all away

Posted in autism, behavior, grandma, placement, trains, Uncategorized, Wildwood, tagged , , , , , , on February 8, 2011| 2 Comments »

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. 

Fuck.

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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in the negative

Posted in behavior, escalators, Uncategorized, tagged , , , , , on January 24, 2011| 5 Comments »

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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nightmares and red tape

Posted in behavior, placement, Uncategorized, Wildwood, tagged , , , , , , , , on January 15, 2011| 6 Comments »

Because I am familiar with the story of Jonathan Carey (be warned:  this is a YouTube video and a true story that will make you cry; I couldn’t even get all the way through it),  I have been attempting to investigate recorded cases of abuse and neglect at residential educational placement schools.  This has proven much more difficult than I ever would have believed.  I started by writing an e-mail to Michael and Lisa Carey, Jonathan’s parents (I had actually spoken on the phone once before to Michael Carey, but he was days away from the election in which he was running for the NYS Senate and our conversation was brief).

Shortly after receiving my e-mail, Lisa Carey called me and we spoke on the phone for a while; she is more than willing to help me in any way she can.  We listened to one another’s stories and she said she was shocked at how similar our experiences were – her son attended Wildwood School as well before being placed in a facility, and they went through similar nightmares as what happened to us in October.  Lisa was very kind.  She gave me her phone numbers and even offered to meet me sometime in person.  I now know a lot more about specific facilities in this state and the possibility and likelihood of abuse, particularly toward non-verbal children, and it scares the living hell out of me.  That being said, I know I am listening to the worst case scenario when I speak with Lisa so I am trying to stay calm and objective and research accordingly.

So I called Bob Freeman, the executive director of the Committee on Open Government, someone I know from working at a press association and meeting him at several of our conventions.  He suggested I speak with the records access officer at OPWDD to learn more about FOILing records from their office regarding recorded cases of abuse and/or neglect from specific facilities across the state during specific time periods.  He said if I did not get anywhere or needed more help that I should feel free to call him back.  This man is a wealth of information and is also extremely helpful.

So I called the records access officer at OPWDD, who basically told me my request would be for a statement of deficiency and plan of corrective actions, which would be a tremendous amount of information (including citations for such minor offenses as a bedroom not being swept regularly) and would likely not contain the records I was looking for).  She told me I was welcome to make the FOIL request, but that it could take a long time and be expensive as well; the records are not provided for free and only go back 6 years.  She was kind as well, telling me she would look into it some more on her end and that I was welcome to call and speak with her on Tuesday.  She then suggested I call the local DDSO and speak with them.

As soon as I hung up, I happened to get a phone call from the director of admissions of another facility we are considering, who had recently received Jonah’s paperwork from the school district and had some questions for me.  I answered his questions and then flat-out asked him about cases of abuse and neglect at these facilities, and whether I could request these records directly from each facility.  He told me that the facility itself would be unable to release such information to me; he cited a mental health law (I forget exactly which one now but am going to investigate) that protects privacy or some such shit.  What the living hell?  A law that protects the privacy of facilities that abuse and neglect developmentally disabled children?

Good God.  Looks like I’ve got a lot of digging to do, and a lot of educating myself about the law.

I imagine I can, in the meantime, request referrals from these facilities – names of other parents of children who are living there.  In fact I’ve been able to obtain a few with the help of Laurie, my favorite social worker at Wildwood (with the parents’ permission).  I will be speaking to as many people as I can about all of these places.

This past week, two staff members from St. Colman’s came to visit and observe Jonah at school; evidently they were able to witness him both working (I think he was doing math) and attacking (he launched himself at the teacher and bit him, from what I understand), so now they know what they would be dealing with.  We haven’t heard anything yet from them.  Maybe they ran away and never looked back.  <– sad attempt at humor.

Oh, and one of our cars is still in the shop with a blown transmission – evidently one came in but it was cracked so we have to wait some more – joy.  I am going to help with Jonah this weekend as much as I can – I will likely take him to grandma’s or on a trip through his favorite mall (which was the sole topic of my February article for the Capital District Parent Pages, where I have a monthly column).

If and when and however I come out the other side of all of this, I intend to speak with every publisher and press connection I know, every government official I can find to listen, every bit of writing skill I have, to SHOUT and SCREAM and bitch and advocate for something MUCH better for all of the developmentally disabled.

The budgets are being cut on all their programs  – the programs and services are shrinking – the pay for the hardworking caregivers is disgustingly low – the availability of help is disappearing…and just the opposite should be happening in all of these cases.  I am going to do something about all of this ridiculousness or die trying.

Watch me.

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our other options

Posted in autism, behavior, placement, Uncategorized, Wildwood, tagged , , , , , on January 12, 2011| 4 Comments »

Yesterday was day two of Jonah having zero aggressions at school – not sure how long it’s been since we’ve had two days in a row, and once again the hope rises in me.  The people at Wildwood are determined, wonderful social workers, teachers and staff…they do not give up but rather continually change and tweak and modify each child’s individual program, tenaciously working toward an answer, resolute in their skillful, caring methods to lead every child to his or her best self.  I am so grateful to have them.

Yesterday after work M and I came over to the house to watch Jonah for a while.  Andy went to the library and to pick up Jonah’s pull-ups, and I played with Jonah (he loves to jump on the bed, yelling “Jump!  jump!  everybody jump!”), fed him his dinner, and put him to bed.  It was so nice to spend a little time with him, brief as it was, even though I had a nagging fear in the back of my head the whole time that we was going to attack me.  On Saturday M and I took Jonah for a few hours but when I brought him back inside the house and asked him for a kiss, he tipped his little head up toward me and as I bent down to give him a kiss, he grabbed my glasses with one hand and pulled a chunk of my hair in the other.  Andy quickly intervened, leading him away, and I just left, saddened by the end of what was, all in all, a nice visit.

Today it’s snowing hard – we’re expecting 7 to 12″ before the storm’s over, so there’s no school.  Andy is taking Jonah to an early morning eye doctor appointment in this mess, and then maybe Jonah will want to play in the snow or go sledding.  I hope Jonah is good for Andy today.

Yesterday I did some research on four more schools, all of which have 365-day-a-year residential programs for children with autism:

The Anderson Center for Autism (near Kingston/Rhinebrook) will be conacting us in a day or two to set up a tour.  http://andersoncenterforautism.com 

Devereux (Red Hook) Campus – 1:1 ratio – I left a message with them so I don’t know what our status is – supposedly all these schools have been sent admission packets about Jonah.  http://www.devereuxny.org

Tradewinds Education Center at the foothills of the Adirondacks – Utica/Rome (serves cerebral palsy and autism kids) – they have a 12-month residential school program but have not yet received paperwork on Jonah.  They have no current openings but there should be 7 or 8 this year.  http://www.upstatecerebralpalsy.org 

Springbrook (near Oneonta) – spoke with admissions coordinator Cheryl DeDecker; she did not receive any paperwork on Jonah yet.  They are a 365-day-a-year program, and currently there are no beds available.  There should be beds in April and May, and in September they are starting a brand new autism program which can handle 24 more students.  www.springbrookny.org

There is another one in Massachusetts that I forget the name of, and our caseworker from Catholic Charities told us about a place in Baltimore, MD (I forget the name of that one too) that takes kids w/autism who have severe behavioral problems, puts them through an intensive ABA program for 3-6 months, and then sends them home again.  We’ll be looking into that too.

If anyone knows anything about any of these programs or places, or knows of any other ones (the closer to Albany, NY the better), please share whatever you know.  The more informed we are, the better.

The snow is so pretty outside my window at work right now.  I’m going to just stare at it for a while and try to forget that I’m searching for a place to send my precious boy away.

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