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Archive for January, 2011

Thanks to everyone who left such valuable comments on garnering the information I want about residential facilities. I really appreciate it!

On Saturday I came over to the house in the morning to spend some time with Jonah Russell and give Andy a bit of a break.  At first Andy and I took him places together:  the usual litany of train and mall and grandma’s house, though Jonah no longer really cares whether the train comes or not (and sometimes declares “all done train” as soon as it does come), and Jonah has changed up the route through the mall (oftentimes not even making it all the way to the other end before deciding to turn around and start back, and – most surprisingly – declaring “no coin” at the wonderful brand-spanking new coin-funnel spin-down-the-drain structure; three months ago he would have begged for every coin on my person to throw down to whatever-good-cause)…

…but he never wavers from his desire to see grandma.  Our cat Sugarpuss now lives at grandma’s house because Jonah was attacking her, picking her up by her fur and once trying to grab her collar, nearly choking her. 

Sweet little sugarpuss, who we rescued from a back Albany alley in 1999 and who wants nothing more than to love and be loved, purring and meowing and mushing her face into your face.  My mom likes to read at night and Sugarpuss actually crams herself between my mom and her book, then tries to sleep on her head.  My mom’s other cat, Bootsie, doesn’t seem to mind Sugarpuss so much but Bootsie’s definitely been displaced somewhat.  When Jonah is at her house we watch him extra carefully around the cats, lest he produce his best imitation of a hiss and chase them.

One thing that’s definitely increased by leaps and bounds is the amount of baths Jonah wants every day.  We can bathe him in our house and arrive at grandma’s with his hair barely dry, yet he’ll enter her house, run up the stairs, and immediately declare his desire:  bath!

It is no hyperbole to tell you some days he takes 6-10 baths a day.  And here we have certain rules and games and necessities as well – usually only one of us can be sitting in there with him, and sometimes we are all banned:  no grandma!  no daddy!  no mama! or, if he decides he wants one of us, hey daddy?! 

Then there are the bubbles.  There must be bubbles, lots of them, and water (pretty hot water)  as far up to the top of the tub as we’ll let him have it – so he can go underwater completely, take mouthfuls of soapy water and spit them in perfect whale-spouts into the air, and cavort about, making waves, always requiring a towel or two on the floor.

He loves the colorful Spongebob Squarepants container the bubbles come in, but they’re expensive so my mom secretly refills the bottle with something else every time he empties the whole damn thing into the tub, pouring water from the bottle to the cap and from the cap onto his head and then requesting various cups and containers into which he can continue the pouring extravanganza.

Sometimes he’ll stay in there for an hour, sometimes 5 minutes, and there’s no telling which it’ll be.  All done bath, he’ll declare, and then one of us has to hurry to grab up the towel while he runs into my mom’s room and jumps all over the bed, naked and dripping as we try to catch him.

Jump!  Jump!  ‘Errybody’ jump!  he sings and laughs, bouncing from one spot to the next like a jumping bean, until I catch him up in the towel and dry him as vigorously and quickly as possible before he can escape.  Once dressed he stomps Olympic-quick down the steps to ask grandma for ‘tune-fish samwich’ and black soda, which we usually let him have because he’s getting much better at going pee and poopy on the potty.

He did have an incident/attack where he lightning-fast shot out at his grandma, but Andy and I got to him before he did her any harm and then held him down on the living room floor until he calmed down again and we could go.

When we got back home on Saturday I gave Andy a much-needed break by playing endless silly games with Jonah in the heated basement – catch the beanbag (what color is it?), roll the pretend shopping cart, put the slinky down the stairs, stack the blocks (what color are they?) chase each other around – up and down the stairs – around the craft table – that kind of thing. 

It was fun and I snatched him up and hugged him tight, my sweet little boo.  Yesterday I didn’t go over; I felt stuffy and sickly.  When I called Andy he told me that Jonah had taken his radiator cover off and threw it into the hallway at 4am, which scared the bejeezus out of Andy, but I guess there was no fight or agression afterwards; Jonah just felt like kicking up the nighttime scene a notch, I guess. 

We’ll see how he does this week.  Another psychiatrist appointment on Wednesday for some further med adjustment, maybe, and I’m supposed to be hearing from Springbrook soon, once they get Jonah’s paperwork. 

I sure hope they have bathtubs.

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Talk about Catch-22

FOILing information from government agencies is like pulling teeth.  There are laws in the way of the core information I want and need – Mental Hygiene Law 33.13, Education Law 29.29, and of course dear ol’  HIPAA.  I can write to request “statements of deficienies” and the course of corrected action taken, but will the statement refer to the nature of the kind of problem(s) I’m looking for (abuse/neglect)?

Not to mention that every page provided to me costs 25 cents, which could end up costing me a small fortune if I’m FOILing 1500 pages of “statements of deficiencies” to sift through.

I thought they could redact (black out or edit) identifying information, but that takes time, first of all, and the records keeper at OPWDD tells me she cannot disclose allegations/complaints/findings of misconduct or convictions – and would never be able to disclose cases of abuse and/or neglect, no matter what – because of those 3 laws I mentioned above. 

I tried to research the laws but I’m like someone in 8th grade science class trying to study quantum physics.  It all reads in legal-ese and makes no sense to me. 

The records keeper was kind enough to send me a 5-page document called “Access to Mental Hygiene Records” but according to that information, I am not a “qualified person” (either the abused person or a family member of the abused) and thus would be denied access to records and documents pertaining to allegations and investigations into any abuse.  Really?

I have to read the whole document more carefully, but to be honest I am getting better (and more) information from simply speaking to other parents who’ve had to make the decision Andy and I are facing.  If that means I’m not intelligent enough because I have failed to acquire a law degree, so be it.

I’ll find out what I can, how I can.

So far Jonah’s been denied admission at both St. Colman’s (they sent me an e-mail explaining “we feel that Jonah needs a more consistant (sic) program and one that does not include the vacation periods that we have.  Our thought is to move him to the most restrictive environment and then move him after a couple of years to an environment like our program.”) and Devereux (because of Jonah’s eye problems), so we’re on to looking at Springbrook, Tradewinds, and maybe a place I hadn’t heard of called The Center for Discovery – a mom told me her son is doing wonderfully there. 

And I think I might re-read Heller’s Catch-22 again. 

There was only one catch and that was Catch-22, which specified that a concern for one’s safety in the face of dangers that were real and immediate was the process of a rational mind. Orr was crazy and could be grounded. All he had to do was ask; and as soon as he did, he would no longer be crazy and would have to fly more missions. Orr would be crazy to fly more missions and sane if he didn’t, but if he were sane he had to fly them. If he flew them he was crazy and didn’t have to; but if he didn’t want to he was sane and had to. Yossarian was moved very deeply by the absolute simplicity of this clause of Catch-22 and let out a respectful whistle.

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

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

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

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

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

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

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

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

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

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

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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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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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