Archive for the ‘Wildwood’ Category

I carry my camera almost everywhere I go, so it was on hand today when I went to check the mail and saw three tiny, miraculous patches of what I think are crocuses.  Here’s one of the patches, pushing out of the brown, dead, winter-packed ground.

According to the weatherman, by Friday night they’ll be buried beneath a blanket of snow of as-yet undetermined thickness.

I don’t mind.  It can’t beat us down now, can it?  At least not for long.

It might do those crocuses in, though.

Yesterday Andy picked me up at work and we went to the meeting at Jonah’s School with the people from Springbrook, who had evidently arrived an hour or so before us to observe Jonah in his classroom setting.  I guess he did pretty well while they were watching him and attended to whatever task he’d been given, with just a small swat thrown in for good measure.  We stopped at the nurse’s office to sign permission for them to give him ibuprofen for his leg (he’s been limping a little on and off lately, something else we have to get to the bottom of)…and in the hallway there lingered the unmistakable aroma of poop, courtesy of our beloved child.

At some point, evidently after the Springbrook people left the classroom, Jonah either needed or requested the safe room and then decided to shit, dig around in his pull-up, and retrieve some of his freshly-pressed play-doh to smear on the walls.  I’m not big into text-speak but WTF?

We got the big-time aggressor.  Can we at least not have the shit-smearer too?

So while they cleaned him up and kept him occupied, Andy and I met with Wildwood staff and the Springbrook folk in a small office and they asked us questions about Jonah and we asked them questions about Springbrook and at first they kept directing all their questions at me

funny how people automatically turn to the mother for the answers about a child

and I told them Jonah was living with his father, and Andy was articulate and honest in speaking to them, and I emphasized how hard this was for Andy, and they nodded a lot in empathy and understanding, and I told them we liked their place best, we think

and I asked if they would tell us if and how and when they would take our son to live and be educated and nurtured and please love him some hour and a half away from us because we can’t do this thing anymore

and we never thought this would happen to us

and we feel torn and confused as hell,  sometimes guilty and often frightened, usually stressed

and almost always anxious

but they have to go back and have a committee meeting and they’ll probably be contacting us by the end of the week to let us know

and then we all shook hands and smiled

and Andy and I got back in the car.  I asked him if Springbrook accepts him, is that where you want him to go? and he said yes and we were quiet mostly as he drove me back to work.

As I walked up the stairs to my office, they were just about to sing happy birthday and serve goodies to the two March birthday peeps.  I smiled and dug into my cake with the rest of them, allowing the worry to fall behind me.  It’s something I have learned how to choose, a defense mechanism in my brain keeping me sane and functioning.

I usually can shed intrusive thinking like a dead skin; I’ve been led to understand that all that matters- all that can matter – is right now.

The end of the week will come, and they will either take Jonah or they won’t, and if they don’t, he’s been accepted at Tradewinds, and it will all happen the way it is supposed to happen whether I worry about it or not

in this soon-to-be-snowy shit-smeared spring of ours.

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We had taken Jonah off all the meds completely and it lasted about two days before Andy decided to put him back on the Risperdal; I’m calling the psychiatrist today to advise him.  We were not exactly thrilled with the effect of Risperdal on Jonah but my God, keeping him entirely unmedicated is definitely not the answer.

Off all meds, Jonah turned back into the boy who drove us to the psychiatric center in October, constantly swatting, alternately laughing and crying, able to play and sing but also vicious in his ability to ramp up from 0 to 100 in 0.2 seconds with no antecedent whatsoever, hurting Andy, hitting and throwing things.

I think Andy was ready to go berserk, and maybe still is, but this weekend we were lucky enough to have my cousin D come to help us, 4 hours each day.  We we able to pay her well (thanks for a respite sitter grant from Catholic Charities)  and I came over too to help out.

Both days we mostly rode Jonah around while Andy rested, took walks, went grocery shopping…  We managed him okay, though he did try to attack us – but D knows how to hold kids with autism and other behavioral problems – she works with kids at the Center for Disability Services – so I felt safe and had an awesome person to hang out with while we were spending time with Jonah.

Lately Jonah’s been asking for waterfall and signing it too, so on Sunday…

(after we cleaned up the coffeepot and grounds from the kitchen floor that greeted us when we arrived; Andy had Jonah on a time-out in his room for throwing the whole works, so it gave us time to put things back in order – this is the point at which Andy decided to medicate him again and gave him a Risperdal pill)

…we drove him out to the Rensselaerville Falls even though there is still lots of snow there and we couldn’t walk all the way down to the falls.  He loved it!

With big cousin D:

Then we took pictures of the falls, where a whirlpool spun these circles of ice in an ever-rotating pattern that amazed us!

Of course on the ride hom he threw his shoes, his drink box, and his peanut butter roll at us, but we got home safely and uninjured.  It was a better weekend, probably for all of us, than we’ve had in a long time.

Thank God.

Tomorrow Andy and I have a meeting at 2pm with the folks from Springbrook, who are coming to Wildwood to observe Jonah.   I am nervous about the appointment but also glad we are closer to figuring out a good, safe, hope-filled education plan for our little boo…

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Here’s the thing.

It’s not the one day of attacks, or the one incident of aggression; it’s the accumulation of day after day after day of the same thing, the same attempts to quell the behaviors that end in failure after falure, the same silence that falls on a situation we’re in – a cage, prison walls, something inescapable that has now become our “normal.”

Yesterday at school Jonah went to the safe room three times, and all three times he pooped and smeared it all over the walls and himself.  They cleaned him up as best they could while he fought them, then he cried and cried, and finally tried to run out of the building (a new trick for him).  The undoubtedly underpaid workers at Wildwood are angels and saints.   

Here’s one of his speech teachers, teaching Jonah about emotions and asking him to mock her facial expressions while they watch themselves in a mirror.  This is from June of 2010 – they are doing “excited” – I love this picture:

When I got out of work I went straight to the house and Jonah wanted a car ride.  As expensive as gas is, it is worth it to us when he is good on the rides (we have no idea why he was such a hellion in school and then was so much better for us at home)… Andy sat in the passenger seat and we drove over to the Voorheeesville Stewarts to get Jonah a peanut butter roll and visit the train tracks where we saw two trains, which this time neither excited nor annoyed him.  He was good, so we kept riding.  And riding.  We’d ride around forever if it meant our boy would be calm, and happy, sucking his thumb and looking around contentedly.  This kind of silence is welcome; we let Guster play on the CD player and drive along without speaking much.

We’d give anything to take away whatever anxiety or fear or confusion or pain that’s inside him.  It’s the accumulation of days, now, that piles on, swaying and unbalanced – and apt to fall at any time.

Thank you to my commenters, who always encourage and support, inform and try to help.  I appreciate you all more than you know!

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The night before Andy and I traveled to Oneonta to tour Springbrook,  I went with M to Proctor’s to see The Lion King; it was his Christmas present for me.   Oddly, at the last three concerts or shows I’ve gone to, I’ve sat very near or right next to disabled individuals.

At this show, I was seated next to a smiling lady and on her other side was a young man, maybe 20, who was rocking forward and backwards in his chair, obviously excited, obviously mentally disabled.  I said hello to her and asked if the young man had autism; I have a little boy with autism, I explained.  She said his name was Thai (not sure how to spell it – sounds like “tie”), she was his mother, and that no, he had (some other disability I don’t remember)– so we talked a little bit before the show started.

It was obvious that Thai was freaking out the lady sitting on his right – she was scrunched as far away from him as possible – so I suggested to his mom that she switch places with Thai; I told her his rocking and movements wouldn’t bother me.  Gratefully she agreed, and Thai amiably moved to sit next to me instead.

The musical began, the first song (The Circle of Life) building to its climax.  When Thai rocked toward me, I leaned against him; I could tell he liked the pressure because he stopped rocking and leaned right back into me.   I liked the contact, we two leaning into one another – it made me feel warm somehow, knowing this man could come to a musical and enjoy it – it gave me hope that my own boy might one day be able to sit through a show happily, hopefully next to someone who doesn’t mind his disability.  Sometimes during the show Thai would place his hand on my knee – and once I put my hand over his; we sat like that, watching the show, for a few minutes…a one-time connection of two strangers that made me feel more whole.

The show was fantastic…incredible how they did it all on Proctor’s little stage, transforming the place into a magical African jungle-world with innovative costumes, scenery, and fantastic actors and actresses performing in explosions of color and song.

It was a distractingly pleasant prelude for the next day.  Like the day we went to Tradewinds, Kathy (a social worker from Wildwood) picked Andy and me up as soon as we put Jonah on the bus and this time we headed to Oneonta, NY (where I went to college) to tour Springbrook.  Another specialist from Wildwood, Heather, met us there.  It is a pretty location for the school and resident homes, tucked in among the tree-lined hills of the area as if placed there gently by a giant.

I was glad to learn that construction was going on for a brand new gymnasium, cafeteria, and two new residences.  We were very happy to be able to look in at their shallow (2-4 foot, yet large) indoor pool and learn that some of the homes had bathtubs.  Funny what we cared about – of course other things are important too but we want our little water-boy to be able to do the things he most enjoys.  Plus they have equine therapy, yoga, and other activities, they take the kids on trips and outings, and all the kids we saw there looked happy, which is perhaps the best testimony of all.  It is the closest facility to our home (about an hour and 15 minutes away) and I think our favorite, though we’d be happy with Tradewinds as well.  They were having a tie-dye sale so I bought a shirt for Jonah.

Just like last time, though, I broke down when we toured one of the actual residence homes.  I asked the guide how the transition happens – what it’s like when you cannot explain what is happening, for the kids who probably won’t comprehend or understand.  She saw my anguish and kindly explained that there are counselors there who can talk to us.  Tears streamed down my face as she explained, gently but honestly, that the transition is usually not easy for the child in the beginning – that sometimes a parent might choose to stay at a local hotel for a night or two and visit their child, but after that they ask for a full two weeks where you do not visit, so he is not confused and can become acclimated.

Two weeks.

Andy didn’t see the point of staying at a hotel and said so – I think he thought it would only make it harder, and I see that too – but just like last time, I sat in the back of Kathy’s van and cried when we left.

I don’t think we have to bring Jonah back there to be assessed because they are coming to Wildwood to observe him and then meet with Andy and me, on March 29th.  If they accept him I think they will have openings at the end of the school year – and those new residences will be completed in September or October.

I can type forever about the details of this place or that place.  I can understand the necessity of what we are doing and I can feel like I have accepted that necessity intellectually, more and more as its inevitability draws closer, but then my heart sinks into a sickening darkness and I think oh my God how in hell are we going to pack all Jonah’s things up and drive him to this place and then leave?  I think of weird details like which one of us is going to be able to drive back?  Will we have to take turns so one of us can sob while the other navigates us farther and farther away from our son?

What am I going to say to my mother?  How can I go back to work?  Go to the store?  How can I sleep, eat, breathe, knowing Jonah might be crying for daddy or mama or grandma, knowing he is probably confused and scared?

I feel like we’re planing to commit a crime.  There is an uncomfortable ‘karmic-slap‘ shame in me.  I remember when Jonah was 3 or 4, asking myself what does it take for people to give up guardianship of their children and put them in one of these places?  Who does these things?

Now I understand why.  Now I know who.

Andy told me he doesn’t know how he is going to live through this, and I understood exactly what he meant.

It is all he said.  We don’t talk about it.  We just can’t.

But I think about it all the time now.

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My little Jonah Russell turned nine years old today.  Here he is as a baby:

Here he is at two; happy boy:

And at three, on his birthday:

I can’t believe how fast he has grown; I can’t wrap my mind around everything that has changed in his lifetime.

Last night I asked M to pray for me; he’s more traditionally religious than I, so I figured he might be a little closer to “The Source,” if you will.   I asked him to please pray that Jonah is good at school today, for his birthday, his little party with cupcakes and goodie bags Andy sent in with his backpack.

Nine years ago this minute I was in a hospital bed after having requested pillow after pillow because I couldn’t get comfortable and I wanted to create a soft nest for my new sweet little peanut and me.

I remember I wouldn’t let them take him away from me, not to the nursery, not anywhere.  When they told me they had to  bring him to the nursery to weigh him or whatever, I walked along next to the little rolling bin they used and stood there over the people until they handed him back to me.

I am not saying I was right or wrong to do this, or that all the mothers who let their newborns sleep in the nursery are right or wrong – it’s just what I did.  I didn’t want to be away from him.  Not for the night; not for a minute.  I just wanted to hold him and nurse him and watch  him and marvel at him.

And so I did.

Almost all the schools in the Capital District were closed today, but not Wildwood, Jonah’s school.  Kids are bussed in from so many different school districts that sometimes the school stays open and just takes whatever kids make it in.  The Albany City School District was closed, so the busses didn’t come, but Andy drove him in, cupcakes, goodie bags, and all.  I think my son was literally one of a handful of students in the whole place today.

And just like M prayed for me, Jonah had a very good day at school.  I’m sure there wasn’t much of a party, and he was tough to handle both before and after school, but what I asked for was that he have a good day at school, and that’s exactly what I got.  He had zero aggressions.  Thanks, M, for praying it into reality.

Now that we are placing Jonah in a residential educational school, I think maybe there was a reason I clung to him like a burr when he was first born.  I think maybe it was because something deep inside my heart was telling me I wouldn’t be able to hold on to him for long – that we would lose him, in a sense…that he would have to go away.

Jonah doesn’t know it’s his birthday,  but for the first time ever there was no family birthday party, like every other year in our finished basement, Aunt T’s unfailingly delicious homemade chocolate cake the centerpiece of each celebration, its recipe passed down from her grandmother, always iced in chocolate too — a hand-decorated Happy Birthday Jonah squeezed in sweet blue icing next to a questionably identifiable drawing of a whale (Jonah’s home for three days in the Bible).

This site is one of many that tells the Story of Jonah.

“As Jonah is sinking into the sea, a big fish (whale) swallows him. (Jonah 1:17) Here we see God’s great mercy. He could have let Jonah suffer the consequences of his actions and drown. Yet, God intervenes and spares Jonah’s life. We often complain to God about the consequences of our sins but do we ever wonder how often He has spared us from consequences? I rarely ever think about that.”

I know I have been spared from many, many consequences.  But for the first time ever there isn’t a celebration around this day.  There’s too much behind it.  Around it.

And, just like the day he was born, I don’t want to let go of my little baby boy.

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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 a 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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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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The bus was late yesterday because of the beginning of the snowstorm, and it was a half day of school besides, and Jonah’s got a bit of a cold, so Andy just kept Jonah home.  The snow got worse and I don’t think Andy felt the roads were safe enough to drive on, so it must have been a very long day.

Probably lots of baths.

Today we’re inundated with sugar-sifty snow and sleet, supposedly to be followed by even more snow.  The Albany city government offices are shut down and of course all the schools are closed.  After work I’m going to go to the house and watch monkey-boo until he goes to sleep to give Andy an escape from what must, at this point, feel something akin to insanity. 

Punxsutawney Phil predicted an early spring this Groundhog Day – a very rare predication , I hear – but spring seems light-years away as I look out my window at all the piling white…

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President Obama is coming to our area today, weather permitting (snowing again).  Aside from the fact that I’ve always wanted to see Air Force One land or take off, I half want to intercept him somehow — I even have visions of getting Michelle’s attention (I don’t even know if she’s going to be with him) — tugging on her skirt like a little girl, begging her to help all the frustrated parents who can’t get help, or must wait months for help for their disabled kids. 

Realistically of course I’d get nowhere near either of them, but I can write and I may just send off a couple of letters to each of them – to everyone I can think of – in a desperate, articulate plea to fix this shitty system.

Spoke at length to a mom of twins yesterday – one of the twins attends Widwood and the other is placed in one of the residential education schools we’re looking into.  We spoke at length about how she came to her decision to send him there, and how she liked the place very much.  She also confirmed my fears about one of the other places we’d been considering (I wish I could name names here but I’m kind of afraid of being sued for libel – not that I’m anyone important or particularly credible, but you never know – the last thing I need is a fucking lawsuit because I said something negative about a particular institution)…

Anyway, this mother said my situation sounded a lot like hers – though her son was placed when he was a little bit older, after smashing through several windows and walls and had become very strong and almost unstoppable in his aggressions.  She understood my frustrations and said she was willing to talk to me anytime.  From what she told me, I now am seriously considering this place where her son resides; evidently it’s set up in a series of ranch-like homes, has a Temple Grandin-designed hug machine, an indoor pool (which Jonah would LOVE), and has private rooms for students who need them.  I definitely want to set up a tour, though they won’t have rooms until spring at least. 

I’m grateful to be able to speak to parents in the same situations as ours (or in situations even worse than ours) – it only confirms my desire and conviction to effect some sort of change in the system, despite my miniscule chances of doing so.  In the meantime I will be researching, collecting information about HIPAA and other laws, speaking with autism organizations, learning and digging and thinking.

Yesterday Andy kindly picked me up from work; my car had gotten stuck spinning in the snow that morning, and I’d gotten a ride in but had no ride home.  Jonah of course was in the car and had requested “train,” so we headed over to the tracks in Voorheesville.  We had perfect timing, arriving just as the red lights began flashing and the striped gates were lowering.  I turned around in my seat and said “Yay, Jonah!  Train!” 

After a few train cars had passed, he looked at me with this completely bland expression and announced “all done train!” 

I guess we’ve entered a new era of train apathy.  Fickle kid.

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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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