Friday, October 15, 2010

I need some advice

On October 30, we are participating in the First Annual Stroll.athon for Rett Syndrome in South Florida. This is the first fundraising event that we have taken part in.

When you have a child with Rett Syndrome (or any type of incurable special need) you feel very, very helpless. I take her to therapies, give her medicines, subject her to medical tests, and advocate for her at school but there is still only a small return on all of that investment. My child still doesn't always acknowledge me when I walk into the room. She refuses to play with me or allow me to help her. She needs help with every activity of daily life- eating, dressing, toileting, and even communicating. It's a labor of love and I do it every day, all day, because I love my girl so much.

This helpless feeling leads to advocacy. Raising awareness and fundraising for Rett Syndrome research is all I can do. Especially at this point in my life, where I am dealing with secondary infertility and wondering if I will ever have another child. Allison is it for me and I am going to do everything I can to give her the best life imaginable.

So, we are walking and raising funds for this event in two weeks.

This is what I need advice on. Our fundraising goal is $2,000. We have been working since August toward this goal. We have sent out messages and actually made a lot of progress. We have raised over $1,600 at this point. That is amazing and I am so grateful to all of our donors. What I am angry about, furious in fact about, is that only $300 have come from our family members.

Yes, that's right. And actually, $200 of those $300 have come from Allison's grandparents. So, from all of my aunts, uncles, cousins, my stepmother and stepsister, and all of Jason's aunts, uncles, and cousins (a combined total of approximately 70 family members) they have donated a grand total of $100. That was two donations.

I am so incredibly pissed off about this. These folks are not poor people. They have received messages from me via email and/or facebook. They say things like "Let me know if there is anything I can do to help..." or "I could never do what you do..." They are people who have never been solicited by me for money for Rett Syndrome.

These people, who are supposed to love and care for us and Allison, can't even donate $5 or $10. These folks don't even reply to my emails or posts with a "Good luck" or a "We'll be thinking about you on the 30th".

Gee.. I don't know why this makes me so upset, other than I guess I feel like they just don't care. I am feeling so helpless, and all I want is to feel like Allison's family supports her.

Can I do anything? Send another email? Post something snarky on Facebook? I feel like telling them all to go to hell, but I'm sure that's not very productive.

What would you do? Should I just calm down and let it be?

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.

Thursday, April 8, 2010

Swimming fun

Getting a pool was the best purchase we have ever made. We bought an above-ground pool, which however redneck it felt to us at first has been amazing. It was such an impulse buy, too. We bought it based on cost, but now that we have it, I realized that it is the best choice for us because of Allison. With an above ground pool, I never have to worry about Allison falling in. She darts right to water if she sees it. So in the end, our little redneck pool has been perfect for us!

I posted before about how much Allison loves to swim. We decided tonight that since our pool was finally a decent swimming temperature (81 degrees) that J would take Alli in after dinner. She LOVED it. She jumped around and splashed, laughing the entire time. It was so great to watch her enjoy herself.

Here is a video I took tonight of her in the pool. Do you think she liked it?

Sunday, April 4, 2010

Spring Break

Allison and I just finished our week long spring break. Every time I am going to be home with Allison for extended periods, I must admit, I get a bit nervous. I wonder how I am going to fill the time in a meaningful way for her. I feel like when she is at school she is stimulated in a positive way for most of the day. She sees her therapists and she is learning new things.

At home, Allison's primary interest is television. She is totally fixated on it and pretty much watches it for most waking hours at home. This has been a big source of frustration for me. I never wanted to have my kids watch TV much at all and she would watch it for hours a day if I let her. She will not play with me, or tolerate me playing and her watching. She refuses help, runs away and whines if I try to read to her, pulls her hands away if I try to help her color or finger paint. After years of trying everything I could think of I have grown weary. I still try new things with her every so often, but for the most part, she has won. She watches TV a lot. J doesn't think it's a big deal saying that she works hard at school all day long with no TV. He thinks she deserves a break. He is right, but it still feels so wrong letting her veg out.

So when we are off together I go out of my way to plan things outside of the house to get her away from the TV. It might just be a trip to the mall or grocery store but for that time she is looking around and seemingly interested in other things. I talk to her and feel like we interact more than when we're at home. We actually had two really good days this break- a beach trip and a trip to a hotel with a heated pool. Swimming and the beach are two things that Allison adores. I took probably 150 pictures of her trying to get some good shots from the past week. Here are the best ones:

At the beach (looking quite grown up...)

Playing at the hotel pool

On Easter, looking thoughtful..

In the car (I would kill for eyes like hers)..

Completely passed out on a deck chair after swimming..

Here, at the end of my week, I feel silly for having so much anxiety about being off with her for a week. We really did a lot and had a good time. I had fun with her! It was easy to keep her busy and our TV time was somewhat limited. I don't know what I was so worried about!

Monday, March 22, 2010

School pictures are here!

My little girl looks so grown up! Sniff. I really look forward to school pictures every year. It's the one time when I'm sure to have a photo of Alli where she is actually looking at the camera. I also have another adorable picture of her in her cap and gown (for pre-K graduation). I would love to share that one but it is a class composite and I don't think it's fair for me to show the other kids.

(I have been a terrible blogger but I will definitely update soon. I have lots of Allison related news to share!)

Friday, February 5, 2010

Just a few pictures I wanted to share..

This is Allison in her shower cap. It's the cutest thing ever. I started making her wear it so I didn't have to wash her hair every night. She gets so excited in the tub that her splashes make a big mess!

Alli got a new booster seat a few weeks ago. This one is rated up to 50 lbs with the chest harness which makes me happy. I wasn't ready to let her go to just a seat belt. She is way to wiggly!

Today was picture day at school. She wore her hair in pig tails and a pretty flowered shirt I bought her with her Christmas gift cards. They do such a good job with her every year that her pictures turn out great. Here is last year's...

I am really hopeful that this year's turns out as good! I have to wait until the middle of March for them to be delivered, and since I spent $50 on them I'm hoping that they are worth it!