rettsyndrome.org

Image Map

Friday, April 22, 2011


just two short weeks ago we were in paradise, wrapping up a week away from real life. two weeks. why does it seem like its been months?

probably because the last two weeks have been good. aside from seeing the tax bill and paying the tax bill, it's been good.

it was my turn to host book club-we really should change the name because we haven't discussed an actual book in years. but book club just stuck, and it's always fun to answer the question you inevitably get asked when you say you are headed to book club: "Oh! What book are you reading?" with "oh, we don't read books" hmm.

of course we all read, just not the same book at the same time. we have tried other things like discussing pop culture, doing book swaps and pick your own topic nights. but it always ends up just being a great group of girls talking about life. we rotate homes and the host makes dinner. we drink a lot of wine and always end with "it's MIDNIGHT??, shoot I gotta go!" Thats how good it is. We can talk for 5 hours like its 5 minutes. We laugh a lot. and, sometimes cry. i love it. i love my book club girls.

the day after book club I took Nolan to our play group. its made up of moms who either went to high school with red, or married someone who went to high school with him. we have been doing it once a month, give or take, for gosh, a really long time. it's another very special group of ladies-we get in snippets of conversation between breast feeding, breaking up toddler "disagreements" and tending to boo-boo's. I try not to miss it-it always blows me away to see the handful of moms that have known one another since preschool chasing after their own preschoolers. it is so so special to see and i feel really lucky to be a part of that.

last saturday I traded in my 2007 highlander for a 2011 highlander. its another lease and it cost me nothing out of pocket and only $25 more a month. no brainer. my big brother helped me every step of the way. he helped me play hardball and got my payment down and my trade in up. it was awesome. new car smell, yes please.

this week has been a little nutty. monday Avery had a trial with a speech device (Tobii C15) here at home. pretty fancy. but the timing wasn't the best. she got off the bus and came home to find 3 people she didnt know in her room sitting around this computer. she did well though. even though she was hungry. these devices are all touch screen and eye gaze enabled. Avery does both-it was cute when we were trying to get her just to use her eyes (and when she did she would get her snack), she wouldn't wait quite long enough for the selection to be made and then would stand up and just touch it! the next step is getting our hands on a district owned device (Tobii, just an older version) and let Avery do an extended trial. this will give the insurance company more information and it should be easier to get it. yes, this will take more time, but i think its the right thing to do at this point.

we had Avery's last preschool IEP yesterday. it was a tear jerker. her teacher cried while reading about Avery's "happy noises". her happy noises are that special. then i cried trying to explain that I want Avery to be in a kindergarten class that mostly resembles kindergarten for typical kids. it was the ugly cry. my first child is going to kindergarten. that's kind of a big deal. but then add on top of that that this child cannot speak and still wears diapers. it's weird. it wasn't the plan. IEP's can serve as a major reminder of that plan being changed without your consent. her teacher cried again because she is amazing and feels like she hasn't made much a dent in Avery in the last 2 years. that made me cry again. sounds fun, right? It ended well. Im happy with what we have set up for her and Im ready to go see two classrooms that are available to her. im scared of the change; the new people that will be in our lives and on her team-the new routine-the new school. but i think back to this time 2 years ago when we were transitioning from early intervention to the school district. i was scared to leave. i didnt want Avery to go to this preschool-this segregated special education preschool-in a severely handicapped class. now, i dont want to leave it. we jokingly asked if she could just stay one more year?-their answer: "she's too tall". we laughed over that. I hugged the principal. then hugged teacher Diane. I said this better not be the last time we see you. and she said "oh no, I want to know who Avery is when she is 8." how awesome is that?

I rushed home because i had plans to take the kids for pizza at another rett mommy's house. i was so late and then there was traffic and I dont do the kids by myself too often so I almost just chickened out, turned around and went home. but i didnt. i went. and it was great. there was another rett family there too. so three girls with rett and their siblings-total kids: 9. Nolan loved being the pesky little brother to all the girls.

now i'm going to fill easter eggs for the egg hunt tomorrow. a tradition that was started in 2007. I feel another good week coming on.



No comments: