Thursday, July 31, 2008

Last Day...

Today is the last day of Caitlyn's summer program. (actually it is tomorrow, but we are headed out early in the morning to go to our local Rett Syndrome conference.) She seems to have enjoyed her bus rides, and her time there. Do I think it made any difference in the over all scheme of things? No, not really. Would I do it again next summer? I'm not sure. One things is for sure, we were blessed with a wonderful teacher for the summer! And, it gave me a first impression of the school district, but we wont go there. Now, time to plan some fun activities. We have a month until school starts up again. I want to make it fun, but know that I will be pre-occupied with meetings and making arrangements for the fall.

Today is also my last day as Children's Program Lead at my job. I will work the next two Wednesday's and then I'm done, except for the occasional subbing. It is a little bitter sweet. I love the feeling working for a non-profit gives you. I have really enjoyed my time there, and it is hard to leave. But, I will no longer have to wonder where the money will come from for Caitlyn's medication. We are excited to get Caitlyn set up in some therapies outside of school. We also have Well Child Check scheduled for the 8th of August because my baby is going to be 5 on Tuesday! And we have a eye doctor appointment for September 15th. (We are also very excited about having our pull ups payed for again!) So, has I say goodbye to my job, I am saying hello to all of the doors that are once again opening for Caitlyn. Stay tuned as I fill you in on all of the exciting volunteer work I will be doing in the future!

Monday, July 21, 2008


I have no other title to write other than that. I feel like I should wear a sign when I walk into upcoming (unscheduled) school district meetings. My sign will read: "CAUTION: ANGRY MOM AHEAD." Now, I completely understand that things happen. It was out of my direct control that the IEP never got to Everett in time to get everything done before the end of the year. But the things that I'm hearing now are inexcusable!!!! So, back up a few weeks when I spoke to transportation they said something about already having transportation requests for fall, and they would mark the need for a harness. That struck me as odd, seeing as we don't know where she is going. Well, today I had to do some running around town, so I swung by and picked Caitlyn up after school. Apparently the head of special services came into the classroom to meet Caitlyn. Her teacher was told she was going to Mill Creek Elementary. This is NOT her home school, which means they are going to try sticking her in a self contained classroom. I am so angry that they told the teacher where she was going, when we haven't even met! I WILL NOT have my daughter in a mixed grade classroom! There is nothing peer about that! I am sooo tired of it! I am guessing that Caitlyn will not have a placement come September 4th when school starts. HOW DO THEY KNOW SHE CAN'T DO IT, IF THEY DON'T GIVE HER A CHANCE?!?!?!?!?!? The schools offices open on August 4th...I will be calling and getting a meeting set at that time. I am not going to just roll over while they stuff my daughter in the "Sock Sorting" class!

Thursday, July 10, 2008

FAT filled yogurt-250 calories and 14 grams of fat!

If your trying to get calories on your child (like most Rett mom's I know...) you MUST check out this yogurt. Someone had suggested it to me at one point, but I didn't ever look into it...My husband reports it is the consistency of cream cheese, but Caitlyn seems to enjoy it. The honey flavor has..are you ready for this...250 calories and 14 grams of fat for a 6 oz container! Bring on the fat, baby! Apparently no one buys it, because when I found it in the store there were only 4 in the display that weren't expired! I'll have to go back for more...Here is the link to the website where the other flavors and calories are listed.
I don't recall how much it cost, but for all those calories and fat in one little yogurt, I'm willing to pay quite a big! Just had to share...

Wednesday, July 09, 2008

New Scrapbooking page

Sometimes I do a page that is worthy of being posted on both sights, if I think it would be enjoyed by those who don't check the other blog...(you should...there are a lot of cute Caitlyn pictures!) Anyway, today's page is all about Caitlyn. It is what I imagine goes through her head as she struggles with her hand use. I'm sure the other Rett parents out there can relate...

My Hands

"They fell victim to Rett Syndrome beginning at age 2.

They don't hear my brain when it tells them what to do.

Don't bother trying, they wont listen to you either.

They do their own thing,

And make me so mad at times."

"Why don't they listen to me?"

"I tell them not to go in my mouth, but they must not hear me."

"Sometimes they hit...Please know I can't stop them."

Tuesday, July 08, 2008

Mother Daughter fun...typical style!

As a mom of a daughter with special needs, I sometimes get a little sad thinking about all of the mother-daughter fun we could be missing out on. Kelly posted on Brooklyn's blog about their "girl time" together, and it got me thinking about the stuff that Caitlyn and I do to try and make our time together as normal as possible! We did try the toe painting once, but let's just say it didn't end up very good. Back in April during spring break, my friend who works at a in home preschool brought her son and two little girls she was watching up to a place called Kids 'N' Clay. I took the risk of taking Caitlyn with, something that I never would have been able to do on my own if I had another 4 yr old with me! Can you imagine a Rett girl who can't control her hands and doesn't stop moving in a room full of breakable ceramics? We came prepared, with a brace on her non-dominate arm to keep it under the table. There were times that I wished I had a third arm. We put Caitlyn at the end of the table, so that in the event that she did break away, her painting was the only one she could reach...And thus we created....

We had such a blast painting this bank together! (Of course I did the name) There were so many colors to choose from, that I would bring down just a couple at a time for her to pick from. She picked all the colors, but mommy picked where they went. We also painted a little heart shaped trinket box for Grandma. (Well, I did most of that because she was feeling kind of done after the tiara bank.) I love that we can do things like this together! It required a lot of pre-thinking and was done almost fully with hand-over-hand to prevent her from eating the paints. But what a blast we had together!!!

Personal Plug: Since I'm feeling a little lost with summer and my baby girl being gone for 3 hours a day, I am scrapbooking away...I've challenged myself to a page a week, though this is only day two of her being gone, and I'll probably do a lot more than a page a week! Anyway, here is the link to my scrapbooking blog so you can check it out! Of course, you will find that Caitlyn is the subject of most pages!

Monday, July 07, 2008

Dental Scare

Wouldn't you just know, we are awaiting our medical coupon to arrive. In the mean time it appears Caitlyn has ground her teeth down to a possible exposed nerve on one front tooth. There appears to be a hole type crater. It is still white, so I don't think it's a cavity, but we are worried about infecting. I will call the dentist first thing in the morning and see what we should do. I'm thinking it just needs to be pulled...(it's a very front tooth, one of the first that would fall out anyway.) I will update when we know more about it. As of now, it doesn't seem to be bothering her too much. Let's hope it stays that way!

Time flies...

Caitlyn and mommy shortly before her 3rd birthday, July 2006

Caitlyn and Mommy October 2007

Caitlyn and Mommy July 2008

I just wanted to show these three shots for a trip down memory lane...Looking at it, I can't believe how much she grew between almost 3 and shortly after 4!!! And now look at her! She keeps getting bigger, and I keep getting smaller! (Sorry we didn't look at the camera in that last one...Daddy didn't get us looking before he snapped the picture!)

Saturday, July 05, 2008


I just wanted to share this picture of Caitlyn dancing with her grandpa at our BBQ on the 4th. (Yes Caitlyn is tall, but Grandpa is only 5'4...) I don't remember what they were dancing to, but she had a blast dancing with Grandpa. the picture isn't the best, because we often times resort to cellphone pictures because we always fail to take the camera with us! I hopefully will have a lot of pictures tomorrow! We are going to a picnic at the park (an ARC event) and this park has a petting zoo, and sprinkler park...Let's hope for nice weather!!

The Littlest Heroes Project

This is too cool not to share!!!! A friend of mine sent me this link, and of course the first thing I did after reading their website was send in our info, then come here to tell you all about it!!!! The Littlest Heroes Project does photo shoots for children with illness/disabilities and their families! I figure if Autism is on the list, then Rett Syndrome (and all the other crap she has because of Rett Syndrome) should qualify!!! Here is the link to the list of photographers. They say not to worry if there isn't one listed for your area, they'll find someone. (Kelly, there is a listing under OHIO for Tri-State area.) I'll be sure to post pictures and let you know when our photo shoot is, for now drop them an email and sign your angel up for a free photo shoot! (Didn't I mention it's free?!?!?)

Wednesday, July 02, 2008

Super cute Caitlyn stories!!

So, when you have a non-verbal child I think you run the risk of other kids taking advantage of your child. I am starting to see a little of this at Caitlyn's daycare. The gal says the older girls have sort of adopted Caitlyn as their own personal life size doll. She'll go where ever they want her to, and she doesn't talk back like the other kids! I guess it isn't really taking advantage of her, they truly seem happy to include her in what they do. One girl in particular loves Caitlyn to death. She is the same age as Caitlyn and about the same height, but probably has a good 5-10 pounds on Caitlyn. So yesterday when I dropped Caitlyn off this little girl came running to the door. She said "Caitlyn, we're playing Sorry. Caitlyn do you want to play Sorry?" She then looked at me and said "Can Caitlyn play Sorry?" I said "She can try, but she'll probably need help." So the girl says "Ok, let's go Caitlyn" and proceeded to take her by the hand and lead her into the kitchen. (Caitlyn went willingly...I think she thought the girl was going to feed her..) So Linda (the care provider) and I were talking about the mysterious finger shaped pinch mark on Caitlyn's arm. (my daughter with the alien like pain tolerance doesn't cry when she gets hurt, unless it scared her.) I look into the kitchen and see the other little girl trying to lift Caitlyn into the bar chair so she can play Sorry with them! Linda's helper got over there before anything terrible happened, and the other girl says "I just wanted to lift her up into the chair so she can play Sorry."

I can't tell you how pleased we are that Caitlyn is at Linda's house! When I finish working, I am going to keep sending her there one day a week. She has never been in a care situation where the adults tried so hard to educate the other children. Caitlyn is truly making friends! (And I'm a very proud momma)

So when I went to pick Caitlyn up, Linda told me another story. She said Caitlyn and this little girl were outside with a couple of other kids and Linda's helper. The little girl brought Caitlyn inside. Linda said they were both wet down the front, and Caitlyn was wet on her back. (She has a water table in her back yard) The other little girl proceeded to say "Caitlyn did it." I suppose you can blame it on the non-verbal kid, huh! It made me think of stories my mom tells of my brother blaming stuff on my sister when she was a baby in her crib! I love that my little girl is being accepted in this environment. This just goes to show you that she can have a blast in a general ed classroom!

Tuesday, July 01, 2008

Deeply Touching

All I can say is I once read this speech, but hadn't seen the video...The words speak for themselves. Take the 9 minutes, listen and spread the word..Let's end this countries hate. (after seeing a sibling panel in Chicago, I could imagine some siblings of Rett girls to deliver this speech...)