Posts Tagged ‘The Center for Discovery’

Yesterday we found out that Jonah was accepted into Tradewinds – but they don’t have any openings until at least June.  We’re glad he’s been accepted and are going to tour Springbrook on the 9th, which was my favorite place (on paper, anyway)…then we will visit The Center for Discovery (the farthest away from our town) later this month. 

Jonah has just gone back to school after a week’s vacation – it was tough on Andy, the vacation, and I tried to help a little each day though it was not much help, considering I work full time.  Andy was stuck with the aggressions and the endless requests, the poops and the thousand baths a day and the attempts to get Jonah to eat healty foods, the cleaning and the playing and the getting him to bed. 

Yesterday, right out the box Jonah had 4 aggressions at school and one on the way home on the bus.  He’s been swatting a lot again lately while saying the word “swat,” something he’d stopped doing for a while.  We got the dosage of Risperdal lowered again and quit using the Klonopin – it’s this constant guessing game of drug combinations. 

It reminds me of that movie Awakenings.  From Wikipedia:  

It tells the true story of British neurologist Oliver Sacks, fictionalized as American Malcolm Sayer and portrayed by Robin Williams who, in 1969, discovers beneficial effects of the then-new drug L-Dopa. He administered it to catatonic patients who survived the 1917–28 epidemic of encephalitis lethargica. Leonard Lowe (played by Robert De Niro) and the rest of the patients were awakened after decades of catatonic state and have to deal with a new life in a new time.

The problem is, the drug didn’t work consistently and the patients began regressing back into their lethargia.  The Robin Williams character desperately tries all different combinations of the drug he’s using, first less of it, then more of it, and all the while his patients are slipping away, eventually back into their catatonic states.

Working with Jonah’s meds has the same flavor of frustation.

Yet, in the midst of the frustration and aggression, Jonah still has all his smiles:


And I do so love the smiles!

I’m doing a lot of freelance writing lately, so my posts may be few and far between for a month or so…but I’ll try to keep you all posted on everything that’s going on.  Happy March!

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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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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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