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An Update on Rett

November 1, 2012



I haven’t been in the mood to blog lately.   We are at a really uncertain time and the more uncertain my life feels, the more stressed and depressed I get.   It doesn’t really matter what the outcome is (to a certain point), its just the knowledge of what it IS.   Right now there’s a lot up in the air.


First off with Rett. I took him to our fourth and final meeting with the school psychologist.  They sort of surprised me with him getting an IQ test. I’m still not sure I made the right choice to go ahead with it, but what’s done is done.   She said ‘oh this usually doesn’t take very long’. I think she was surprised by how much he did know.  He couldn’t copy her block designs so I think that really hindered him. Of course right after this, he started doing block designs in ABA and is awesome at them. He just has to be directly taught something and then he’s got it.  So he did that and some other things for her.  Our IEP and eligibility meeting is the 9th of November.  Still trying to talk to Dr. Coby about getting the school to fund ABA hours. We’ll see how that works out. Right now, if they won’ t give me what I want, I’m just not signing the IEP.


I got our Deeming Waiver rejection letter the other day.  Government agencies aren’t high on my list of favorite people right now.  I have a case worker who I’ve talked to before.  I got a letter requesting therapy notes (which I didn’t have but I got) and a copy of our IEP (which doesn’t exist). I explained to her that Rett does not have an IEP.  She said that’s fine you can only send what you have.  Then I got another letter asking for the IEP again.  Silly me thought we had something crossed in the mail and she had made a note of what we discussed.  Miss Amanda told me to send in a letter stating he did not have an IEP but I ignored her. Even when the small voice told me that I should indeed do that.  So I got a rejection letter for not sending in an IEP that doesn’t exist.  So I called them up and they’ve reopened our case but I could tell that we are probably going to be rejected for not having an IEP.  Hopefully I can get copies of all my stuff and just refile after our November 9th meeting.  Its just crazy.  They think that without all these multitude of forms, I could somehow be making it up.  Me, a psychologist, a speech teacher and my pediatrician.  Apparently if they have it in writing from the school, its gold.  Our government has so many issues.  We should hear results back concerning our waiver in 20-30 days.


Rett has been doing really well for Miss Amanda.  He and Evie have once a week sessions. Right now he goes for an hour and she goes for 30 minutes.  Really wish our deeming waiver would kick in so I could get him to twice a week.   They are working on not just asking for help but being more specific.  So he has to say open it, put it on, take it off, give it to me, etc.   He’s asking ‘How turn it on?’  and the other day he told me he wanted to wash his hands, I told him not right now and he asked ‘why not?’ I about passed out.  Then promptly took him to wash his hands of course.   I know this is Rett’s update, but I’ll throw in some about Evie also.   Evie is  doing really well.  Miss Amanda still doesn’t feel like its autism because she’s ‘too social’.  Although I think Rett is more social then her so how does this work exactly?  She is talking in full sentences for the most part though. She just gets stuck in ‘script language’ a lot and over generalizing phrases a bit.   She’s been doing all the things Rett’s working on since she hears us working on it. She asks ‘what happened’ appropriately.  If you ask her what her name is, she can’t answer you. But she will say ‘Hi, what’s your name, I’m Sissy!’   Really not all that concerned with her speech. Whatever issues she does have, I’m sure we can work with. Miss Amanda says she has a 6 month delay at most.


ABA is interesting right now. Rett has been doing VERY well.  He masters things rapidly once he has been directly taught.  Starr (the therapist I liked less then Kristi) quit to go work for the app program the company created so right now I just have Kristi.  The program is set up that he has to perform the task for both therapist before it masters him out, of course we only have one therapist right now so nothing is getting mastered out.   So for about a week and a half he’s been doing the stuff that he already knows.  What a waste. My #1 complaint about this program.  I’m not sure how to fix it though.  Starr was inputting programs for us and now she’s gone so its probably just going to get worse.   It would be amazing to see what this program could do if we actually could get it to work like it was supposed to.


In ABA we are currently working on Rett giving a certain number of objects to the therapist, recognizing the numerals 1-5, showing numbers on his fingers (holding up 3 fingers for his age) and a ton of other stuff.   Our team meeting is tonight and hopefully a bunch of new programs will be added.


Rett has had a minor regression. He’s doing a lot of tv talk and jabbering. I hate when this happens. It feels like he goes away for awhile.  I don’t know if its just all the excitement from Halloween or what.  Hopefully he’ll snap out of it.  Its been about a week or two now already.  He’s still picking up new skills though so that’s good at least.


We had a wonderful Halloween. It was our first to go door to door trick or treating. In the past we just hit some community events and the kids really went to bed before Halloween started.  They had a great time. Rett really ‘got’ Halloween this year and went up pretty much independently, said trick or treat and got candy. Or just talked about their decorations and chatted.  The candy wasn’t high on his important list.   It feels surreal to be in our first holiday season here in Atlanta.


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