A few notes.

Did I mention that Edda lost a tooth the first night I was in Chicago? Of course, you get no warning that the tooth is going to fall out, we just got a call from Edda’s school that everything was fine, but the tooth was coming out. She’s a little young, just 4 years and 2 months, but I have consulted with 2 dentists (ha ha, last night, my great friend from high school, Sue, brought her cutie baby all the way from LA and had a dinner party at her sister’s house and there were 3 dentists in attendance) and they both said that it was OK, girls tend to lose their teeth earlier than boys. Vince hasn’t lost any teeth :).

(Look closely at her lower front teeth!)


Edda’s IEP meeting is this Friday and I spent some time today reading over the proposed draft. To recap, Edda’s in a special needs preschool with other kids who are non-verbal and believe that Edda’s going to be in the same school again next year, which I am happy about.

I have watched the class a few times in the past month and there are kids who are definitely getting the hang of talking and will say a few words, there is a kid in there who is really good at using the picture cards (the teacher laughed when I asked about his PECS skill, she explained that he’s really good at it, but points to the cookie picture all the time over all other choices. hee hee), Edda is the most physically disabled of the group, she may be the only one who actually needs to be fed and watched super closely when they are out in the playground.

I like the school, I think we are getting the best services that are available in the county for Edda right now, and all the folks who work with her are skilled, excellent professionals, but going through the proposed goals for next year is distressing to me. Day to day, I think of Edda as “just Edda”, no labels – she’s doing her own thing, learning at her own speed. It’s all good. IEP reading says it all in black and white, “significantly below age expectancy”, “Edda’s significant cognitive, social/emotional, speech and language, fine and gross motor, and self care delays impact her ability to participate with typically developing peers in preschool activities thoughout the day.” Yikes – sounds baaad. It’s hard for a parent to read, no question about it.

In the IEP proposal, there is nothing really what I consider to be leading to be learning how to read or how to do math. However, I don’t want to barge into the IEP meeting and tell them that Edda can learn to read, really she can! when I have no evidence of it myself except for a bunch of other Rett parents insisting that it can happen. So yes, I believe that she can do it, but we really have no eye gaze or choice making in place. The school has been working on the eye gaze and the choice making, but it’s inconsistent and I really think Edda is just not motivated enough to answer.

I feel over the past year, Edda has been getting better about “telling” us about her needs and wants – mainly about video choices and when she’s hungry, but it’s not formalized like using pictures and getting a clear answer via tapping using her hand or eye gaze. It’s something we really need to focus and work on. I feel like I need to work on it at home and once I get a consistent yes/no or choices, then I can press my case a little better with the school.

4 thoughts on “A few notes.”

  1. We can not read the blog in office now. It is too bad.

    Edda knows, I am sure. Just she could not tell you in normal ways.

    She is a happy girl.

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