Tuesday, August 10, 2010

Ups and Downs

Being Allison's mom, I am hypersensitive to so many things. As a result, I feel like I am constantly on this emotional roller coaster. We go for days, weeks, sometimes months where I am feeling really good about her. She seems to be doing really well and I am so happy with her progress. But that happiness is very delicate because it seems just one small thing can set me off and make me depressed and sad about her. I hate Rett Syndrome so much some days that I long for the days when I didn't know what Rett was.

This weekend I was on an upswing. Allison is finished with her VPK (pre-K) class now and is all set to begin kindergarten. We did some back to school shopping and I was feeling very excited about her going to real school. A big achievement for us actually happened while shopping at Tar.get. Allison is 5 now and getting too big to shove into the top of the shopping cart anymore. I have never felt comfortable with her riding in the main part of the cart, so up until recently I have been still pushing her legs through the holes and having her ride in the top. She is so hard to maneuver in and out, and she doesn't help by moving her legs. It is pretty much impossible to do alone. So, we have been trying to see how she would do just walking beside us in the store. That might not seem like much, but for us if she would do this consistently and without wondering off or grabbing at stuff on the shelves, this would be huge. Well, on Saturday, she did it. She followed my mom and I through the store and only had to be redirected a few times. It was great! No more shoving her into the cart. I can only hope that as she gets older it will get easier and easier.

So coming off of that, I was feeling very good! Then came school this week. Since Allison is done with her pre-K program, she is going to summer enrichment (day camp) for this week. It is a shorter day but I still wanted her to have something to do outside the home this week since she will be off all next week. When I got to her school today to drop her off, I find that she has been placed with the younger kids. She is in a room with 3-4 year olds, what the school calls older preschool, instead of with the other 5 year olds. She was just with the 5 year olds in her pre-K class, but now they have moved her down to be with the little kids. Honestly, being with the little kids might be the best place for her. However, I am really annoyed that no one at the school thought they should talk to me about this, especially since they are putting her in the mainstream kindergarten. I heard from another mom whose little boy likes Alli that they put her in with the little kids because she is needed more help than the other kids in the kindergarten class. That is probably true but I was really annoyed that I had to hear this from another mom! Why couldn't the school talk to me about this? Erg.

I guess part of it too is also my being worried that maybe she doesn't really belong in the mainstream kindergarten and I'm afraid that they are going to switch that at the last minute. I walked by the kindergarten day camp class today and it looked like the students were playing some kind of trivia game around the smart board. I know that Alli wouldn't have participated in that. So many emotions are competing in my head. I don't want to become one of those bossy moms who demand my special needs child be included in things that just aren't reasonable. I know what it's like to be on the school side of this and want to be understanding. I would just really have preferred some communication from the school rather than just feeling like she was singled out.


  1. we recently had a successful target trip as well. avery held my hand the entire time (i usually put her in the main basket b/c nolan rides in the front) we were in and out but still i was so proud.
    We will be facing kindergarten next year and Im already having funny feelings about it. You know they cant make decisions about her placement without your consent so at least there is that. I get the part about not wanting to place her in a room "just because I can" even if i know its not appropriate. its all so hard. luckily we have those triumphs every now and then!

  2. Yeah for a great shopping trip!! Hope things with Allison's school work out for the best!

  3. Oh can I relate with the shopping cart - Annie's the same, it takes 2 people to get her in and out of that seat and at 5 she's getting too big as well - unfortunatly she can't walk so she'll either need a sitter or it will be short trips where I can push her chair and just hold the couple of things I need to buy. Rett stinks! School is top of our list as well. Annie started a Kindergarten summer program - AWESOME teacher who read everything I gave her on Rett Syndrome - she became an expert! And then she decided to move to Japan! UGGGGG now we're back to the wondering and worrying and trying to "train" another teacher. Hang in there, it's got to get better right??