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.

Tuesday, August 3, 2010

Not blending in anymore

Wow, it's been a while since I have posted here. It's definitely not because things have been slow around here, but maybe more because we've had so much happening with Allison that I'm not sure where to start.

Allison is about three weeks away from starting kindergarten. Wow. I am blown away by the fact that she is already starting "real" school. It has also been pretty emotional for me because, in a lot of ways, I feel like once she is in real school she will start to fall behind more and more from her classmates. In preschool, it doesn't really matter if you need help eating, or still wear diapers, or like to sit on someone's lap during circle time. It also doesn't really matter how different you are because the other students don't really see you as different, or if they do they don't care. In kindergarten the other kids will start reading and doing simple math. They will write their names, draw pictures, and do science experiments. Allison will be exposed to all of that, which I know is good for her because I believe she is really in there learning, but she won't be participating the way the other kids do. She can't or won't hold a pencil or fork. She doesn't talk. She won't respond to math problems or science experiments. But she'll listen and learn.

Thankfully her school is wonderful in that she can be in a regularly paced kindergarten classroom with typical kids. They have a low enough teacher-student ratio so she doesn't have to be pulled out into the special class. It's bittersweet because I know she is in the best possible place but I had always dreamed of her going to my school, which is kindergarten through 8th grade. I was so looking forward to seeing her in the halls, lined up with her class. I wanted to peek in on her during art or pop over to help in her room during planning. Oh well. I will get over it.

Also new for Allison are leg braces. She walks wonderfully for a girl with Rett Syndrome, but she does walk on her toes a lot. Toe-walking puts her at risk for muscle shortening which could cause her to lose her mobility over time. Even though she currently has full range of motion in her ankles the doctors want her to come down onto her heels. Therefore, she is getting leg braces. Thus the title of this post. Once she gets leg braces she's not going to "blend" anymore. Maybe she hasn't been blending in for a while, but I can pretend sometimes that when we're in the store and she's walking by my side that maybe people think she is just like any other kid. With leg braces, it will be apparent that she isn't. I'm not even sure if this bothers me, but it's still something I have been thinking about.

Lastly, we are trying a new medicine for Allison. She has been on it almost a week. It is a medicine for ADHD. Since Alli is in constant motion, the thought is that the medicine will slow her down and allow her to focus more, learn more, and become more cooperative with her teachers and therapists. The first day I gave it to her I was a nervous wreck all day. I felt like I was giving her speed or something! I had to have a drink that night just to calm down and go to bed. Of course, Alli did fine with it despite a lower then normal appetite, which is expected on those type of meds. As the days have passed she seems to be doing better about eating and is even napping again at school. At this point I can't say that the medicine is even helping her at all as she still seems to be her usual bundle of energy and motion. We are going to keep with it though, at least through the next month, to see if it helps her in her big kindergarten transition.

So that's the news about Allison in a nutshell. I have pictures I want to share from our summer vacation, and several more posts brewing in my head.