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Posts Tagged ‘St. Colman’s’

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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St. Colman’s

Andy and I toured St. Colman’s on Friday.  I tried to keep it together but ended up crying several times as the very kind staff took us through the building, showing us the classrooms, living spaces, a huge domed gym, some of the special sensory rooms, and a nice cafeteria with a beautiful Christmas display that Sister Sr. Mary Louise constructs every year for the children. 

The pace looks like a huge old high school with wide, echoing hallways and a maze-like enormous feel to it.  The children all seemed happy and well taken care of, but I knew Andy and I were thinking the same thing: can they handle Jonah?  He’s so aggressive these days that I’m afraid he would hurt someone there – one of the other children, or a staff member. 

The people giving us the tour assured us that they accept children who are violent and those kids do very well with their structured schedule, individualized for each child.  But they send the children home every school vacation (except for a 6-week summer program; they have two pools, which is really nice) so we don’t know what we would do during those times.

Sister is going to visit Jonah at school this week to observe him and make a determination about whether or not he would be a good fit for the program.  Then, if we decided to go ahead with the application process, we would have to have another school district meeting to make the final arrangements.

I think there must be some other way we could fill in the vacation times, like the Western Avenue Respite Program we appplied to, but I didn’t go on that tour – it was during school vacation so Andy brought Jonah – and once again, I don’t think Andy believes they could handle him.

I don’t know what’s going to happen or what we’re going to do.  The residential schools that have 365 days-a-year care are out of the area.  We may have to tour them as well to compare them to St. Colman’s and see what’s the best placement for Jonah.

Yesterday Jonah had a very good day at school, his log book told us.  He laughed and sang and played and had no aggressions at all.  They are trying a new program with him where he gets 3 minutes of an activity and then earns a gold star and a “special choices” reward – he usually chooses a scooter ride. 

I want to believe that he can have more and more of these days, that the next time we take him to the psychiatrist we can adjust his meds perfectly, that combined with Wildwood’s new behavior plan he can just stay home with Andy, where I can see him as much as I want.  I want to believe that we can fix things, that we can keep all this from happening.  I want to still have hope, even as we investigate the residential placements. 

I want to still have hope.

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I’m told that someone once asked the Buddhist Monk Thich Nhat Hanh to explain Buddhism in one phrase, and he paused and answered:  “everything changes.”

Several things are changing now, actually.  Got very good news about my position changing at work (in a way that I am very appreciative of and happy about) and also have an appointment this morning to visit St. Colman’s residential educational placement school, which is only about 10 minutes from my home, as opposed to the 4 or 5 other residential schools we’re applying to, which are all at least an hour away.  It would be so much nicer to be able to see Jonah pretty much whenever I wanted, and I hope the tour goes well and they have a place for him.

When I was in the hospital, the nurse who handed out meds had seen my file and knew my story.  She told me that she doesn’t usually share personal information with patients, but that she had placed her son (who also had autism) at St. Colman’s when he was 7.  Now he is 21 and about to age-out into an adult home; she had nothing but wonderful things to say about the place, how far he had come, how wonderful the staff was, how much she appreciated everything they had done for her son.  I swear everything happens for a reason.  It is no mistake that I met this woman.

On Wednesday Jonah had 9 aggressions at school, and Andy picked him up early to take him to the doctor for something the nurse said was patiki eye…tiny dots on his left (bad) eye…the redness was traveling down his face and the nurse was concerned.  But they never made it to the doc; Jonah attacked in the car halfway up the Northway and Andy called me from his cell phone and told me to cancel the appointment; I could hear a struggle in the background and sighed.   When I went to the house after work, Andy wasn’t up to reliving the details – Jonah had fallen asleep by then and his face did look a little red but he didn’t seem to be in any pain, so Andy said he’d try to take him again tomorrow if he needed to.

Yesterday there was no call from the school nurse, but Andy’s car broke down on Colvin Avenue, which is about 3 miles from our house.   He called AAA (thanks, dad, who always gives us each a membership for Christmas) and then had the car towed to a nearby repair shop.  He called me to tell me what had happened.  I asked if he wanted me to come pick him up but he said he was going to go for a walk anyway that day, so he walked home.  Just one more thing to deal with.  The big property tax bill came too, and now a car repair.  Good thing neither Andy or I really mind not having much money.

Then Jonah’s log book said he’d had 10 aggressions that day- 9 at staff and one toward a peer.  This frequency is as bad as it was before we started him on medication, and I’ve become almost numb to this kind of news.  It only serves to make me feel sorry for Andy, for the people at Wildwood, and to underscore the necessity of placement.  It gives me an all over, bone-deep, constant anxiety that feels like a new kind of normalcy now.  I’m on anti-anxiety meds but I find myself wanting to mainline them straight into my veins – to sleep, perchance to wake with life as it was 8 years ago or so – a small but comfortable house, a sweet beautiful baby in my arms, a happy husband to come home to me each night after work.

But everything changes.  The wheel turns, and those squashed at the bottom will rise again.  I just wish the wheel would turn a little faster…

“The wheel is turning and you can’t slow down,
You can’t let go and you can’t hold on,
You can’t go back and you can’t stand still,
If the thunder don’t get you then the lightning will.

Small wheel turn by the fire and rod,
Big wheel turn by the grace of God,
Every time that wheel turn ’round,
Bound to cover just a little more ground.”

~ The Grateful Dead

For my peeps at the hospital, wherever you are — for everyone reading this, leaving comments, praying for us, thinking of us, calling me, sharing your own stories, expressing your compassion, wanting to help — I thank you.  It means more to me than you will ever know.

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