Are you ready for October? I am!!!

I am running my post through my head, and I may not have it ready tomorrow, but it's coming together! I'm sure I'll post more than one throughout the month, but for my first post I have decided to challenge myself. Before the end of the week I will post my third post for Rett Syndrome Awareness month...I am challenging myself to post about the POSITIVE influence Rett Syndrome has had on our lives. We constantly see the grim side of the diagnosis, and I know the positive takes more time to see, but it is there. Would you like to join me?

I hate Rett Syndrome--kind of deep, grab a tissue!

Let's face it, each and every one of us parents go through this from time to time. You think it's all going great, and you're dealing with stuff one day at a time...Then, all of the sudden it strikes. Something happens that digs up all of those feelings in you. All of those feelings that make you angry, that make you feel like you have failed your daughter, that make you wonder if you've done everything you can...Does it ever get easier? Sure it does! The "I hate Rett Syndrome" moments become fewer and farther between. It gets easier to pull through, but still they happen. All we can do is lean on each other and remember that we are all in this together. Although Rett Syndrome takes us all on separate journey's, it is still Rett Syndrome. It is still a change in our lives that we never expected.

Just when you think you've got it all under control, something happens and you lose it...That pretty much describes my day. Since Caitlyn is in Kindergarten now, she is bringing home the occasional homework. We had two things we had to do today. The first was decorating a box that would hold all of the books they are making at school, so that she can read them at home. This should have been a simple project, but it tore open old wounds. We have these cool pen adapters (I'll post a picture soon) that Eric made for Caitlyn so that she can't throw the markers. She has one at school, and one at home. So we went to the craft store and bought a cute box and some stickers. We sat down after a short nap to decorate our box...It ended up with her running off laughing and me crying. It was such a simple task...But sometimes it is the simplest of things that remind you of what you thought life would be like. I never in a million years thought the simple project of decorating a box would hurt so bad. I can't explain the pain...It hurts to see her not be able to do simple tasks. My logical thinking knows that it shouldn't hurt. I know she knows know different, and doesn't seem frustrated...but the pain persists. We did finish our box...I decided not to venture into the Jack and Jill assignment, thinking we would do that in the morning. (We have to count the words in each line, marking them on a little graph)

With everyone one of these feelings, questions come up in my mind. Today I find myself wondering...In those moments that the tears escape before I can be alone, what do I tell Caitlyn? How do I explain the pain I feel to her?

With every tough day, comes a good ending. On the hard days, I strive to make the ending enjoyable for both of us. Caitlyn had a very enjoyable bath, which left us both soaked. We then read the book that she brought home from the school library on Friday, by flashlight. She loved it! We curled up in her bed together, she turned the pages and I read the words. She was so excited to turn the pages and see what happened next. It is hard, but we try to find a drop of joy in everyday...

I feel like Caitlyn was just diagnosed with Rett Syndrome yesterday...

Life Goes On...Did you grow up with it to?

Many of us in my age range and older remember the days of family TV programing on Sunday nights. There are two shows I really remember. First it was Life Goes On. This show starred Chris Burke as Corky. Did you spend your Sunday evenings with the Thacher family? Today I dream of my daughter having a sister like Becca Thacher. (the other family show on Sunday nights when I was growing up was Touched By an Angel)

Anyway, the reason I am bringing you all down memory lane is because tomorrow I am leaving to go over to Yakima with 4 other moms of children with special needs. We are going to attend the Valued Lives Conference. Tomorrow night I will have the opportunity to hear Chris Burke speak. I'm thrilled to have this chance. I will be sure to fill everyone in on my experience after I get home on Friday.

This is just the first of some exciting opportunities I have in the next couple of months. Next month I will be attending a KIT training (KIT-Kids Included Together). This training will train me so that I can train others on KIT. This is so exciting for me to take part it these trainings. I look forward to a day when our children can go to the same fun kid places and not be turned away. A day when parents wont have to worry about what they are going to do with their children when they are forced to get a job...There will come a day when all childcare providers will be trained on including all kids together in their centers. Dream with me, and let's make the step to make a difference!

To All Blogging Rett Parents

Rett Parents:

As we all know, October is Rett Syndrome Awareness Month. It is right around the corner. My suggestion is that we all post on the same topic for our Awareness post. Our first October I did a quite long post on our journey to learning about Rett Syndrome, and what it has meant in our life. That was a little more than 6 months after our diagnosis. Last year I did a shorter post talking about what year 2 brought us in our journey. If other Rett blogger's would like to partake in a post topic for our Awareness posts, please leave a comment with any suggestions you might have, then we can have a vote. Imagine how therapeutic it would be for newly diagnosed families, or families who have their diagnosis for years to be able to spend some time reading several different views on one Rett related topic.


Also, if you are a regular reader of my blog, or just stopping by, and you would like your child's blog listed on my list, please leave a comment and let me know.

Lastly, it is a long time away, but let's start thinking about the IRSF conference 2009. If you think you might be attending, let us know! I will most likely be arriving on Thursday so that I can enjoy a little bit of time before the conference starts. (if nothing else, that's what I learned from Chicago. Spending that money to go, I need to arrive early or stay late so that I can enjoy some vacation!) Maybe we can plan a Rett Syndrome blogger get together at some point.

Take care everyone!

another update

I first want to apologize to those looking for pictures...I will work on that some this week.

Where to start...School first, I guess. Caitlyn's second week of school went much better than her first. She is getting the hang of things. She loves going to school. I drove her on Tuesday last week, and it was so cute! Her Kindergarten classroom is right next door to her life skills classroom. When we show up in the morning, she tries to break away and go into the K class. She knows that is where she enjoys being the most. We decided to try letting her buy lunch, thinking it would save some time and let her have more of a variety. There is a lot of choices, so we'll get to the point of letting her choose what she wants each day.

Tuesday night was curriculum night. Eric and I seem to be on the young side of K parents in her class. We enjoyed the evening. We had the opportunity to speak with her K teacher for a couple minutes. Turns out no one thought to tell her that Caitlyn's placement was only until the end of October. This is huge for us because she really seems to enjoy having Caitlyn in the class. The other kids are really warming up to her. It's great to hear about!

On the Benecalorie front, we are doing ok. We don't know yet if she is gaining, but we are able to get one container in her each day. We mix it in her propel flavored water, oatmeal, mac and cheese, pudding. I also put it in her scrambled egg mixture, or in the mixture of french toast. She is handling it pretty good. It does make her a little less constipated, but all of you other Rett parent's know that's not a bad thing! The real test will be if it is putting on any pounds...I struggle with this decision. I know she is healthy, but I also know that she is too skinny. What I struggle with is what do I do when she gains 5 pounds? Will I still be able to take care of her as easy? Will it get too hard if she gains?

Caitlyn had a great eye doctor appointment on Monday. She will be getting glasses, but first we have to find a place that will take our insurance for frames. Hopefully it will improve things over all for her.

I promise next time I post I will try and get some pictures up...

We're BACK!!!!

Today finishes off Caitlyn's first week of Kindergarten. She has about 7 more weeks of "proving" herself to go. The week started off strong, followed by two not so strong days. Caitlyn wasn't getting enough sleep at night! She was waking early. Wednesday night she was asleep by 6:15 and woke up about 7:15 am! We were sure this would help! She is still struggling with what they say is being tired. She gets pulled from her Kindergarten class to take walks and calm down. We are suspicious that there is more frusteration that being tired. Yesterday was a better day, but still rough...We are hoping she will finish off the week with a bang! We are trying to teach her staff to read her ques, and head off the melt downs before they start. I am discouraged, but keep telling myself that it is only the end of the first week. Being away from home for 7 hours a day (counting bus time) is a lot to get used to. (for mommy too.) In feeling discouraged, I sometimes find myself wondering if we are doing the right thing...

In other news, starting Monday we will be using Benecalorie. Here is the description: There are two reasons why BENECALORIE® is the ultimate solution for fighting fatigue; a formula that packs 7 grams of high-quality protein and 330 calories into a single 1.5-oz serving, and its ability to blend easily into liquids and most foods. Maximum nutrition, maximum flexibility, maximum variety, with a minimum serving size.

We got this as a prescription from our doctor, so it is being payed for by our insurance! We can mix it in Caitlyn's food and drinks throughout the day. That's an extra 330 calories a day! I know Caitlyn isn't all that small at first sight, but her weight for hight puts her right at or just below the 5th percent. We are being proactive and trying to avoid the possibilities of weight loss if Caitlyn gets sick this winter! I'll let everyone know how it goes, but I encourage you to check out this product!

Caitlyn has an eye doctor appointment on the 15th, and then we have another meeting on Thursday at the schools to discuss assessment. I promise to update soon, and also get a picture up!

You Win some You Lose some...we sorta won

I'm sure everyone is sitting on the edge of their seats waiting to see how it went.....Caitlyn will attend the Life Skills classroom in the morning, and then attend a General Ed pm Kindergarten class with an aide. She will do this until the end of October while they observe her and we do assessments. Then we will meet again. I'm really hoping she shows her stuff in the next 2 months...

What an emotional proccess. It took us 3 hours to get to this...It was 2 1/2 before they even offered it! A piece of advice to all of those out there...When writing IEP goals, think of things that can only be met in a general ed environment. And make sure every conversation you have with teachers are in writing!!! We are happy with this for now. Caitlyn and I will go meet her teachers tomorrow morning, then she will start school on Monday. We faught for her...and we won this round...Now on to round 2...Thanks for everyone's support...it means the world!

We are ready...please pray for us on Thursday

Thursday September 4th, Eric, my mom (our note taker) and Linda (Caitlyn's childcare provider and our advocate) will join me in being Caitlyn's voice for our IEP meeting. We hope for a smooth successful process, that ends in Caitlyn's best interests being served. I will update everyone after that meeting to give you all an update. We could really use everyone's thoughts...The meeting is at 8:30 am. Thankyou.

Life Skills...

If you have a child with special needs, you understand the pain of these two words. We will fight with all we have...If we can not get an IEP appointment on Sept 2, Caitlyn will not be starting the school year. I made it very clear today that I will not be sending her into a life skills program. I will not give up on my daughter. Do you have any idea how much doubt the school district will try and put in your head? I am so sure about what we are doing, but I still got off the phone and was in tears. I felt like I was some how letting my daughter down. Why do I let them get to me...I feel so defeated. But we will stay strong.

I am still without internet at home...Hopefully soon! I'm wondering if anyone would like to have a blog set up so we can all share calorie boosting ideas? I'm willing to set something up in my free time if anyone is interested!

Thank you everyone for your support.

We Haven't Completely Gone Away

Just a quick update for all of our regular readers. We are without Internet at home for another couple of weeks as we work through some things. I try to get the free WiFi around town when I have time alone. Caitlyn celebrated her 5th birthday last Tuesday. We haven't had a party yet, because I want to be able to invite friends from school. She had her well child check on Friday and is 3 feet 10 1/2 inches!!! She gained 1 1/2 lbs, and is at 39 now, but we can't really count it since she grew 2 1/2 inches!! We have put the weight issue on watch for now, but not really doing a lot of different stuff...Just crossing our fingers that she doesn't get sick! That's it for now!

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!

BLAH

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!

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...

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."

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!

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!)

Dancing

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?!?!?)

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!