It's today, in less then an hour. The CPSE meeting is first, then the CSE.
Hopefully he will get an aide assigned ASAP, because I am home with him due to the bowel thing. I really do need to get back to work. I've been doing some things from home, but I can't do it all here.
I traveled a long way to the neuro appointment yesterday. She said the my little guy also has flat feet (who knew), and recommends that he get a whole lot more therapy then he is getting now, as well as all the blood work for genetic testing and a sleep-deprived EKG. Anyone every have one of those done? Doesn't sound like very much fun.
I'm feeling very burnt out, extremely overwhelmed and totally exhausted. The neuro was over 3.5 hours away, so I didn't get home until 9 last night. Thank goodness a had a friend available to watch my other 2, and thank goodness my boss has been very understanding, or I would have lost it a while back.
The neuro wanted to know why he was only recently diagnosed, and wanted to know whose head has been in the sand? I had to answer that person was, unfortunately, me. His mother that should have known better.
I'm so sorry it went that way. I think getting an advocate sounds like a great idea if that is possible. Hugs!
Well, I'm really not knowing what to do at this point, as the IEP I got in the mail is basically getting tossed as we are getting a new one based on the meeting we had today.
I am going to call the woman in the area that is huge in the autism community, and was the one that headed up the CPSE/CSE meeting I recently went to. She had offered me a parent support to talk to a week ago and I should have called, but things have just been so crazy, and I was feeling confident that things were going ok.
There are so many things wrong with the IEP that I did get from the last meeting, that I am going to sit down with it and write a letter about it.
BEFORE you write that letter, go to www.wrightslaw.com for advice or, if you have From Emotions to Advocacy, check there for advice. In fact, if it were ME, I wouldn't write them anything except "I disagree with this IEP" until you get the advice of an advocate or at least an experienced parent. PLEASE DO NOT PUT SOMETHING IN WRITING THAT THEY WILL BE ABLE TO USE AGAINST YOU. And that's nearly everything.
Disorders aren't parent caused. A Np says our son is adhd/bp mix still think she is wrong. Those things don't cause a loss os speech at 1 year old.
RN
Excuse me? I want to KICK that neurologist! Who the heck does he think he is blaming the mother again? A disciple of Bruno Bettleheim? Get real, MR. Doctor. We moms have SO much to do and are being told ALL the time, "oh, he's a boy...boys talk late... boys toilet train late...boys will be boys. PULEEZE!!! I certainly hope he wrote a really, really good written report to have made it worth your long trip and the insult.
How did the CPSE/CSE go? Did the Parent Member provide any help?
FIrst of all, if someone in a meeting EVER tells you "the law says..." ask them to cite you the law. Take out a pen and paper and write down what they say. Tell them you want to see it with your own eyes before you agree to it. Secondly, PDD-NOS DOES qualify as Autism in New York (and everywhere, actually). But in New York, they don't WANT to classify kids under Autism because it's the only state that offers certain guarantees to kids with autism that are not available to kids with other classifications. You really need to print out the Part 200 and read it. It's in plain English and the different sections are pretty clear. Here's the link: http://www.vesid.nysed.gov/specialed/publications/lawsandreg s/part200.htmAlso, go to www.cqcapd.state.ny.us/ and search your area of your state to find advocacy organizations that might help or call the Commission. There are free advocates here, though I'm not sure if you'll get the fastest help waiting for a free one. Below is a list of the advocates available in NY:
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I feel railroaded, I'll tell you what. Everything that you are warned about going into a CSE meeting, that's how I feel.
First off, this meeting was to redo the IEP that was written up from the meeting a few weeks ago, as since the psychologist's recommendations weren't written in, as she submitted her evaluation too late (
I never got the copy of the IEP, but when I asked where mine was, that I had not gotten it, I was told it went in the mail yesterday. No one offered me a copy today.
The neurologist got her report in on time ... 15 minutes before the meeting. It classified him autistic. Now, I thought PDD-NOS was also an autistic classification, so I'm confused why they said "oh - well now he is classified autistic, this changes everything."
Because of his bowel issues, he needs a full time aide. Since the neurologist said he needs to be in a autism classroom/special ed, and since NY is only required to offer autistic services for a 1/2 day classroom, he won't get the help in his regular pre-k, but get all this extra help in his Head Start class. So, if I choose to continue to send him to NT pre-k, it is my choice, but he won't get any extra help.
In head start, he will be getting speech every day, OT 2x a week, a f/t special ed teacher and a f/t aide for his bowel issues. There is a recommendation for a PT evaluation.
He's been recommended into a summer program, but NOT the one I wanted him in, because he is "technically" still a pre-k kid until August 30. They will put him on the list for the school I want him in for kindergarten. Maybe he'll get a place ... maybe he won't. But he will be in an autistic classroom, just don't know where yet. He will be in a summer program as well. Where? Don't know.
The IEP that was written up, that I finally found in my mailbox when I got home from the meeting today, baffled me. It completely minimizes the issues that were discussed at the last meeting. It makes him seem much more advanced then he is, and I am wondering if they are talking about the wrong kid! Seriously, I am flabbergasted! I think that is why, after getting the neuro report, the realized they had to make big changes to this IEP. It just doesn't wash. And even after all the aggravation I went through to get to that appointment, I am so glad I did and the neurologist made it a point to get it in. I found out she personally called the CSE office and discussed her report with the director, so there was no way they could say they didn't have it or didn't understand his diagnosis.
I'm feeling a bit shell-shocked by all this.
I hear now that all the recommendations now have to go before a review board meeting (some time in February), before the new IEP gets written and he actually receives the recommended services.
I'm going to call the Family Resource Network tomorrow and talk to someone about what happened. It seems like it is all about the bottom $ line, and how cheaply they can get off to get him what he needs, but not a damn thing more.
We did the EEG also. I remember being at Denny's at like 3 in the morning. The only thing I could think of to keep him awake. The electrodes were not fun, but he did fall asleep. Then so did I. lol....
Good luck. Let us know how the meeting went.
We did the sleep deprived EEG with Anthony. I think we had to put him to bed 3 hours after his normal bed time and wake him 3 hours before normal wake time. Which meant he went to bed at 11 pm and got up at 5 a.m. He actually did quite well. He was very good with having he things put on his head and he fell asleep when he was supposed to.
Good luck with the meetings today! I hope it all goes well.
My ds had a sleep deprived EEG before he was 2. Boy was that exhausting. They told us to keep him up all night so that when we brought him in he would sleep through it. What we did and it worked well was to put him to bed at normal time (around 7pm) and then we woke him up at 1am. We turned on all the lights, the tv, and kept him physically active. The hardest part for us was keeping him awake on the way to the hospital since it was 45 minutes away. My dh was the one that actually took him for the test and I stayed at home with the twins. But my dh said it was AWFUL when they had to put the electrodes on him - he screamed and wailed until they were through. The good thing - as soon as they were done, he fell asleep and they got lots of sleeping time from him.