A longer note.

We’ve been busy and I’m trying to make a concerted effort to stay off the computer while everyone is awake, which has led to shorter blog posts. However, I have a moment now – the kids are asleep and Jeremy’s at some sort of dinner where you sit down and talk for hours – so I’m here alone in the kitchen.

I just got home from a meeting at Edda’s school. It was a little social get-together for parents to get to know one another and also there was a speaker to talk about some of the services the county offers. Edda school is a special-needs school for kids mainly on the autism spectrum, although there are also kids in the program with various other disablilities.

The meeting reminds me that although the diagnosis of Rett Syndrome is terrifying and isolating, in some ways I would rather have a diagnosis where I know the exact genetic reason Edda is the way she is. It is something to hang a hat on, something to work on and something that focuses me. With a diagnosis of PDD, it’s so vague and I see parents really struggle to find out what exactly is wrong with their child. Some parents are very proactive and aggressively seek out treatments from all sorts of doctors (homeopathic, acupuncturist, herbal medication, the most accurate brain scan (better than a CAT scan, is there such a thing?) – someone told me they did a complete genetic map – but I almost can’t believe this because I didn’t think it was available to the general public, but maybe I guess, they mapped Venter’s genome, I guess they could do yours), others seem incredibly overwhelmed.

It often depends on my mood how I take these interactions with other parents of special needs kids. Sometimes, I think, OMG! I’m totally not doing enough for Edda and I call Jeremy and I ask him are we doing enough? We need to sign up for more stuff, we need to get on the ball and I feel all energized and optimistic. Other times I feel blue because of all the kids, I irrationally think Edda is the most disabled of the bunch and I get into this no one else understands me mood. These mood change with the day and the season. Tonight I was in a pretty good mood, these feelings did not overwhelm me – I’m happy sitting here typing away.

I wanted to also talk about Edda’s IEP meeting – it’s a meeting that is held twice a year with the school system to see if we are meeting our goals and what our goals in the future will be. They (not me personally, but from many, many stories) have a reputation from being contentious and antagonistic, usually because the parents want something and the school system doesn’t see the need.

(I find it hilarious that amalah, a popular mom blogger who lives in the same school system we do and has a son who has speech delays which are mild enough that the school system wants him mainstreamed and now is fighting for extra services and on the other hand, I have Edda, who has a speech delay and we’d like to see a little more mainstreaming.)

Anyways, Edda IEP meeting was fine, I love Edda’s school, they are wonderful, caring and are dedicated to the kids. I’m working far away, I can not micromanage Edda’s educational experience, but I talk to Edda’s teacher often and I like her. It’s just that at IEP meeting there were three other people from the county who have spent very little with Edda who were doing most of the talking. It’s a little bit upsetting to have people who have spent very little time with your child headlining the meeting.

I guess that Edda is up for some type of psychological evaluation and they were explaining how the testing was done and how they would use toys to note their cognitive abilities and I was like – dudes! she has Rett Syndrome, so she can’t use her hands! So those toy tests aren’t really going to work that well… The reply – you mean she can’t use her hands at all? Hmmm…. well there you go.


2 thoughts on “A longer note.”

  1. Your last line made me laugh so hard – but then at the same time made me want to cry – “these people” can be so far out there and they are in charge of our girls educational future.

    I love the picture in your post….beautiful!

  2. One always thinks whether “I have not done enough” or “whether I have done too much” when things are up in the air or its outcome is not in line with one’s expection or wishes.

    In Edda’s case, I think we all have done what we know how. Of course, more can be introduced to her at any time. But, it may not help too much. She is happy and everytime She smiles at me (I think) I feel great. I hope she feels great too.

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