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Posts Tagged ‘Joseph Heller’

On Christmas Eve I went with M to return a fixed computer to a man’s apartment; the guy had autism and softhearted M had done the work for free.  The man had all these vinyl albums hung on the walls, and each album had a painting or design on it.  In another room he’d constructed 3-D sculptures from popsicle sticks and fuzzy dots and crafty pieces of all kinds of things.

It was all very cool.  He had so many books and so much music.  Joseph Heller and J. R. R. Tolkien, Mario Puzo and Thomas Hardy.  His music was eclectic:  Eric Clapton, The Beach Boys, Gordon Lightfoot, the Soundtrack to Grease.   And he was very happy to have his computer back in time for Christmas.

He would ask random questions of us, and he could make good conversation.  I asked him if he had brothers and sisters, and then he asked me.  M and he were both the youngest, they discovered.  I  asked him about his music and books, and the artwork all over.  “Oh, yeah,” he said enthusiastically.

“Were you born on July 30th?” he asked me.  “1969,” he added:  statement, not question.

I smiled.  “No, but close.  September 2nd.  The 1969 part is right.”  Then I asked, “When is your birthday?”

As if thinking weren’t you listening? – he said “July 30th, 1969!”

I liked him.

While we were there his mother called.  Then he said his counselor was due to come over soon, so I asked him directly, “are we all done or do you need any more help?”

“Oh, yeah,” he said in the same enthusiastic voice.  “We’re all done.”

Good thing I’ve read The Speed of Dark by Elizabeth Moon, because I don’t have a lot of experience with adults who have autism, and that book helped me see things through his eyes.  You have to be pretty direct; subtleties and metaphors get lost.

That sounds like a Paul Simon song:  Subtleties and Metaphors.

Andy brought Jonah up to my mom’s house on Christmas Day and then kept him for a long time after that.  Jonah was very good at my mom’s, even though he paced a lot and wanted sandwich and bath and car ride in rapid succession, caring nothing for the presents.  He is indifferent to everything related to Christmas except perhaps the lights and songs.

Definitely the lights and songs.

I am kind of okay, but for a while I couldn’t write because I was re-visiting the necessity, safety and camaraderie of last year mid-December, when everything changed forever.   I love those peeps, even if I did only know them (in person) for 8 days.

Thank you to everyone who has written.  I just don’t get to my e-mail as much as I want to.  I read them but then I can’t reply.  I hate bitching about shit, and I’m always bitching about shit.  Today my mom and I spent hours sorting through like 15 bags of clothing into donation and keep piles for Jonah.  I was agitated and tired.

I wanted to clean today.  I cleaned and cleaned and organized and cleaned.  There is still too much.  I keep thinking of the man who was born on July 30, 1969.

It occurs to me that we are equidistant from Woodstock.

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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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