Month: June 2008

Jeremy is out of town again at a work retreat. Yvonne and I were laughing this morning about what a good gig Jeremy has, go to some beautiful place and have some beers and talk about saving the world. He just called from CA, he’s still sick and it’s 4 people to a room and he forgot to pack his pajamas.

Edda lost her 2nd tooth today. Yvonne thinks she lost it somewhere in the living room. We are never going to find it, I bet a dog ate it.

Vince helping out with a little feeding.

And also some carrot cutting.

Vince’s first day of summer camp was canceled because a water main broke in the neighborhood. We are under strict orders to boil our water, which (because we don’t have cable TV) no one really took seriously until I was on my way home from work and mentioned it to Jeremy.

Jeremy has been sick the past two days with a fever of 104. He has alternated between being too cold and being a “sweatball”. He went to the doctor today who laughed and told him he wasn’t taking enough Motrin.

After I spent the day telling my coworkers how wonderful the Metro is and how I haven’t had more than 5 days in the past 9 months with major delays, I spent the evening wedged into both platform and the train because the train I was on was too crowded and one overeager transit rider has his rear end leaning against a door and then the doors failed to close and we had to de-train and then I had to wait until 4 full trains passed until I could get myself back on track towards home.

Doesn’t hippotherapy sound just like a asking a hippo, “Yes, but how how do you really feel?”

After 8 months on a waiting list, we finally had our first session/evaluation today even though it was really, really hot.

Gong gong and pua pua were there:

Here we are on Monty, the fake horse:

And here is Shamrock, our therapy horse which we did not get to ride on, but at least we got to pet.

We were 30 minutes late for Edda’s IEP meeting on Friday because a train broke down on the Metro and we had to single track it for a while, which means that you have to let one train run the whole length one direction and then the other train gets to go in the opposite direction – quite a waiting ordeal.

I think that this IEP meeting is kind of funny. We love Edda’s teacher, Ms. Sarah, and she knows Edda as well as we do and I feel like I can call Ms. Sarah up and say, hey! can we try this out? and she’ll think about it for a while and then we’ll work on it. So at the IEP meeting is – Ms. Sarah, Ms. Tanya (the principal of the school, who we also have a nice relationship with) and then 2 people from the county who talk about Edda but don’t really know her. And these other folks who don’t see Edda on a daily basis, they like to talk a lot. (Hands? What’s the deal with her hands?) Yes, so it was non-confrontational and just fine. We changed a few things about her IEP to tie less of her early literacy skills and early math skills to actually physically having to do something with her hands to more eye gaze and tapping.

I spent the afternoon at the local community pool for one of Vincent’s friend’s birthday party. (I got to hold a 6 month old baby! Sigh, such babyness.) This is the first hot/humid day of the season, it was packed and Vince had a great time. This photo does not begin to tell you how crowded it was, I felt like I had one square foot of pool to myself.

Now there are 3 drivers in the house, Yvonne, Jeremy and me. We have only 2 cars, so Jeremy started taking the bus to work today. The plan is for me to drive to the Metro in the morning, then Jeremy takes the bus to the Metro and heads to work and then we coordinate and go home together. Yvonne then has the car during the day to drive the kids to their various appointments and activities and also so she can do some stuff during the day while the kids are at school.

Trying to help Yvonne find her way around has been a bit crazy and unpredictable, it makes me want to buy a GPS!

Our offices move again. On Monday, Mom & Dad are going to move into an office room where sits two people with one door and no window 🙂

Yes, it’s going to be summer soon, the kids are out of school next week. My favorite seasons are usually the transitional seasons, spring and fall. This has been a nice long spring, lots of rain, lots of flowers. I think this week marks our 1 year anniversary since we’ve moved to Maryland. A year ago, neither of us had jobs, none of the kids were in school and we were kind of adrift, not knowing how it would all turn out. It has been a lucky year for us!

There is an article in the NY Times about how science should be more of a part of everyday life. Sometime soon, I’d like to do some writing about science, most likely it will be on this blog about the advances in Rett Syndrome research. There are so many interesting things happening in the world of gene therapy in general and Rett Syndrome research in particular and I think I may be able to understand a lot of it, but I don’t have the time to really sit down and go through pages and pages of dense scientific stuff. It’s been a long time since I’ve sat down with a biology book (they are always the heaviest ones, dense with vocabulary and pictures and drawings).

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.

We graduated from the “training” part of my job last week. These are the coworkers who started with me. We all work with patents that deal with chemical engineering issues. We are all nerds.

I did make the phone calls to the senators and congressmen that I mentioned a few days ago to ask for support for Rett Syndrome advocacy. I made three phone calls and someone (who sounds like they are 21) answers the phone. I make my request, “Hello, I’m Doris, I wanted to make an appointment with (so-and-so) to talk about an issue for the FY2009 Appropriations bill and ask for his/her support on this issue.” Then they redirected me to the office scheduler who I need to email/fax to request an appointment. So I sent out some emails Friday night, we’ll see what happens.