My name is Caitlyn. I am 10 years old. I have Asperger's, (Autism) OCD, ADHD, and generalized anxiety disorder.

Wednesday, February 24, 2010

Duh duh duh...the ARD.

Bleh. I'll try not to ramble, but I'm really burnt out tonight but I want to get it down before I forget even more stuff kwim.

First, some of the mistakes were mine in some of the forms we filled out. I'm bothered by the fact that she just rote-copied them instead of asking me "you checked both of these for a strength and a weakness, was that a mistake?" months ago. That just boggles me, it would have been easy to ask at any time during the TWELVE meetings I've had where she was present. Submitted my corrections now, anyway. She offered no apology or explanation for the school information being completely wrong (it said none of her previous schools were accredited, all are; that she had 1 "maybe 2 years" at preschool, she had 3 including kindergarten; and that she first attended THIS school in third grade O.o - um, no, fourth - this current year. That's a pretty blatant records mistake and shows shoddiness IMO).

Second, when I asked why certain statements were made in the report that were untrue, she said "that's what your test results showed". Period end of story. This is important to me because we were really strict in the questioning - if it happened even once, we answered "sometimes" or "rarely" as applicable instead of "never". To me, "never" means exactly that, "never". Apparently that REALLY masked some of what we're concerned about like social skills. But we were not asked to elaborate or explain any of our scaling answers to be filed with that report - this becomes important on a later point.

The speech therapist was not present and had to be called at the other campus she was at. There were 2 particular tests done. The CASL (examiner with dd) showed she scored VERY high on pragmatic language (understanding sarcasm, literalness vs figurativeness, etc) but the CCC2 that her teacher filled out scored her at the 1st and 2nd percentiles on pragmatics. I always expect SOME discrepancy on different tests, right, but they shouldn't be completely different ends of the scale, no?

All we were told was "well, they were 2 different tests". And then her teacher apparently had turned in some notes of explanation and other stuff WITH the CCC2 that the psychologist considered in the findings! We had NO CLUE we could have done that with the AQ we filled out ugh.

It took 15 minutes of us going back and forth to get nowhere on that. Either the CCC2 is wrong (her previous evaluation using it she scored VERY LOW on pragmatics), or she tests well but can't use those skills in the actual social situations for some reason. We got nonresponse on that.

We asked about the ADOS - the actual observation by the "Autism Team". Turns out the vast majority of that isn't them observing her in her normal surroundings - they pull her out of class, then ASK HER how she would react in certain situations and for them to show her stuff. When I asked what peer interaction was observed, we were totally brushed off by the psych, though the teacher later mentioned in passing that she apparently WAS observed on the playground? We already KNOW she does well with adults and much younger children, we do NOT understand the peer difficulties. I don't get it??

On the OT - who also was not present - we asked why there were some things mentioned that needed addressed without suggested therapies, accomodations, tools, or goals. She grips things too tightly till they break, there are gross motor concerns in PE, etc. Didn't get anything from that beyond her afternoon teacher stating she had a pencil grip she could give her O.O They mentioned she does better on the computer speed and confidence wise than handwriting and that could be used as a classroom tool, but she makes many more errors on the computer. A keyboarding class being provided was never mentioned though (wouldn't that then allow her to use that tool most effectively??)

Some other things that came up - the psychologist leaned heavily on the inpatient stuff from 2 years ago, showing she has a "history" of anxiety and depression. We NEVER agreed with that when it was going on and was why we kept seeking help! AUGH. I'm so pissed that 2 years later that is still biting us in the ass.

The psychologist said that even though the tests showed she was NOT depressed OR anxious (2 different tests, she scored right in the middle of average/normal) that her findings were based on what she SAID outside of the test during taking it? And that she thought she was giving the answers she thought they wanted as opposed to the real ones.

I am just WTF at this point. So she pretty much admits that C manipulated test results in her opinion, but I notice she doesn't consider that C manipulated all the adults in her ADOS examination/observation... and CANNOT do it with her peers. This is the crux of the entire issue and this lady won't even address it!

No mention was in the report and at this point I didn't want to bring it up because the meeting was disintegrating at this point - I'm half proud and half depresssed about it. We've been super successful in coaching DD1 to social situations SHORT TERM - she knows how to fake eye contact, how to respond to specific phrases (lots of them), manners, etc. If she WANTS to impress you, she will bowl you over. She CANNOT keep it up though - hence why she can't do it routinely to the kids in class or her teacher, or with her siblings or other family members. We see her too often. They only saw her for a couple of hours total, split up at that. She makes a GREAT first impression, so to speak, and then it all falls apart.

When I asked the psychologist how many girls WITH autism she has seen, she refused to answer for several back and forths and she said ultimately "within the population ratios". Nice non-answer eh?

I do not deal well with authority figures or confrontation unless I "have nothing left to lose" in person. So this was really hard on DH and I. We tried not to be adversarial, and signed that we formally disagreed with the ED label and wanting more time to consider the proposed IEP. We will meet again in a week which is going to be really busy for me as I try to get more info to present/get the advocate at the meeting/etc etc etc. I'm hoping to have SOMETHING from the dev ped by then. If not I'm not sure where we go past there. I'm talking with DH about how far we are willing to fight this/sink $ into it etc.

I guess that's about it?

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