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!

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...)

Social Security meeting today-update

Just a quick note...If you see this post before 2:05 pacific standard time, please say a prayer! I have a meeting with the new SSI caseworker to see if we can get Caitlyn's benefits reinstated. If the meeting ends on a positive note, she should be fully insured by August 1! This will mean pull-ups payed for again, being able to get her therapy outside of school, no co-pays on meds or doctors appointments, no premiums, medicaid personal care hours, and a little bit of money. The money isn't as important to us as all of the other benefits. I will update later today or tomorrow morning with how things went.

Another benefit of moving...A new SSI caseworker. And she is much nicer than the old one! We got in with one day to spare...had we not been in until tomorrow, we would have had to start the whole application process over. So, we were approved!!! We qualified for the month of June and for July, but not for August. Every month that has 5 Friday's we wont get a check, but we should still get insurance, and that is by far more important! The funniest thing with this switch in caseworkers...Back to May of 2006, nothing has been verified on our account. Our last check was in July of 2007. Everything was just estimated. So, the gal said she is going to go through and verify everything. (poor thing...2 years worth of pay stubs she has to go through!) If it comes out that there were months in there we could have gotten money and didn't (I know there are a few) or didn't get what we could have, we will get more...also is true that if they gave us too much at any point, we will owe. Let's hope the first is true!!! Yippy for health insurance!!!

The Fork

Learning to use a fork is a slow process for Caitlyn. When we first started, she wasn't quite sure what to do. She would pick up the fork with her left hand, and then pull the food off of the fork with her right hand to eat it. The food made it in her mouth, and the fork became air born. We did some hand over hand until she realized the food stayed on the fork, and then started letting her do it again. Everything went smoothly, except the fork still became air born. Picking up the fork 20 times in one meal was enough to say "forget this." Well, that and the fact that it makes meal time take extra long. I'm all about her forming some sort of Independence, and we are trying hard to always make time for her to do stuff herself. So here is where we are today with the fork. This is a super quick video because I shot it with my cell phone. But as you can see she picks up the loaded fork, brings it to her mouth...and...ready for this...doesn't throw it!!!! Mostly we have her aide Kim from this past year to thank for this! They encouraged us to send in things that needed a fork for lunch just for this purpose. The short video doesn't show it, but she will sometimes put the fork on her lap because the routine with Kim was "eat the food, put down the fork, and put your hand back in your lap." They really stressed the waiting and having her hands in her lap because other wise she couldn't eat at the table with the other kids because she'd steal their food! So here is Caitlyn's Fork Process...Who knows if she'll ever be able to poke the food...but for now we'll take this...(we tried the spoon...We both ended up covered in yogurt, so for now it's all about The Fork)

I forgot to add that she got made there at the end because I was filming and not reloading her fork...I guess she doesn't think I have my priorities in the right order.

Chewlry, Neurology and school

We will of course start with Chewlry!!! I am in love with these stretchy plastic things! When I was in Chicago, I saw a girl chewing on a necklace, and I asked the dad to tell me all about it! They are called Chewlry. So that night Kelly (Brooklyn's mom and fellow Internet junky) and I looked it up on line. We found where they could be purchased, and I went home prepared!! Well, I finally got around to looking it up again a couple weeks ago. I of course had to get the mega chewlry because it said it was stronger! (well, they are also bigger and that is why it is twisted) The whole point was to give Caitlyn something to chew on other that her shirt. Let me tell you, this plastic necklace does so much more than that! We have 7 colors-blue, purple, green, red, orange, yellow and white. They haven't totally replaced the hand chewing, but they have helped. What they have done, is changed her hand pattern. She doesn't chew on her shirts (but darn it they are still wet a little because the necklace gets wet) and probably the big thing is the fact that she has almost completely eliminated the "crotch grab" from her hand patterns. I don't think I've ever talked about this, but there are days when she constantly looked as though she had wet herself because she would suck on her hands and then grab herself! (not a "i need to go potty" grab...that is a single finger point...this was a full on grab) These necklaces are a wonderful thing!!! And so worth the outrageous price I paid for them! And, no matter what color Caitlyn is wearing, she always gets to choose the color of her necklace...she wore orange one day with a brown shirt...

I couldn't find if I had posted about Caitlyn's neurology visit or not, so here is a little update. I had to work, so my wonderful loving husband Eric took her. Don't get me wrong, I love him like crazy and appreciate so much that he is an active father...but he's not the best at telling the story after the appointment...He says it went fine...next appointment is December 1st. Yippy! We have control, and are being bumped to every 6 months instead of every 3. Cross your fingers that we can keep this control...She is so much more happy seizure free! So last week the report from the doctor came...There was all this stuff about weight and follow up with nutritionist...(momma freaked out!!) Yes Caitlyn is skinny...her weight percentage is 50% for her age, but her BMI is right at 5%. Under 5% for a BMI is considered underweight. I have the BMI calculator listed on my favorites, and I run it every time we have a growth spurt! So I got all nervous wondering if the doctor was expressing concern with her weight. She has been 37 lbs since about October I think, but she grew again...she is 3'8" now. So I said something to Eric about the doctors notes...Apparently he expressed the concern to the doctor, and he said it wouldn't be a bad idea to have the nutritionist follow her...I want to live in a world where I don't have to worry about every single calorie that goes in my daughters mouth...some mom's say "please don't feed my child the high calorie juices and whole milk..." I say "please don't give my child fat free foods...she needs her fat!!!"

Another thing that through me off from the report was that they wanted another EEG before her next appointment...So I will have to call and see if they really do because Eric couldn't remember anything being said about that. I am really not looking forward to another 24 hours in the beautiful hospital...but if it really needed, we'll make it work! hmm...Maybe it is Eric's turn to stay over night!

Well, that's about it for today. I think Caitlyn and I are going to take a picnic to the river tomorrow for lunch since it is suppose to be so beautiful, so hopefully I'll come back with a lot of pictures to post!

In My Daughter's Eyes

It occurs to me that not everyone in the world has the same love for country music that I do. That being said, if you love someone with Rett Syndrome, you absolutely must hear this song!!! Even my manly husband will admitt that this song brings slight tears (never full on tears) to his eyes. Every time I am in the store or at the park and some stranger comments on how beautiful my daughters eyes are, I just have to smile. It is then more than ever that I stop and think of every other Rett child in the world. Our daughter's eyes are amazing, and they show everything...Enjoy

A quick school update

Wow, I think this counts as twice in one day since last nights post was after midnight! Anyway, I spoke with some nice man from the school district today. Caitlyn will attend school July 7th-August 1 for 1 1/2 hours a day Monday-Friday. I guess this is better than nothing. It will give me the ability to breath for a couple of hours, since she will ride the bus. Well one thing is figured out...Still no idea what September will bring...hmm..Should I test them and see if they read EVERYTHING in the IEP, or let them know that she will indeed need an aide? I think they'll figure it out...I'll just send a note in that says "Please don't let my daughter eat the Lego's." It will take them about 5 seconds to see that she needs someone there to help her direct herself...We shall see how the month goes, and then we can decide for next year if it was worth it or not.

Blog Worthy Things

I think I posted too much for a few days, because now that I haven't for awhile, people are asking what's up! I wish I had a ton of pictures to show you, but I don't...I will soon, hopefully.

Thursday June 12th was Caitlyn's end of the year party. I went and it was a blast. She has a total of 10 kids in her class, and she is one of just 2 girls. One little boy (whose mom I know well) took Caitlyn's hand and lead her to go line up to go inside. (I have a picture of this...but they are old fashion and I don't have them developed yet.) And the highlight of the whole day...I have pictures from this, but I truly wish I would have been able to capture it on video...They always do musical chairs for their parties. (no chairs go away, everybody wins) Well, Caitlyn had had enough of walking in circles, so she broke away from her aide and started dancing on her own. The other little girl (who is almost a full head shorter than Caitlyn) came up and said to Caitlyn's aide "I want to dance with Caitlyn." So the aide held out Caitlyn's hands for her to grab. The danced together, and then (ok...mommy eyes tearing up as I type) the little girl put Caitlyn's hand up in the air and turned, so it looked as if Caitlyn was spinning her. I got teary standing there in the classroom seeing how much each of those kids really cared about my Caitlyn. (until I get my act together and develop the pictures, I hope you can picture in your mind this Kodak moment)

Father's day was fun! We drove to the top of the pass to meet my husbands aunt and pick up my brother-in-law. He is home on leave after 11 months in Iraq. We are all very thankful that he came home safely. On our way down the mountain, we stopped in Snoqualmie to go to the railway museum. (my husband is a bit of a train person) They do train rides throughout the day, and since it was Father's day, dad's road free! We took the short ride (about 25 minutes) that goes down to the falls and back. Here is a picture of the falls...They are just beautiful. Just on the other side is where the track runs. (I love Washington landscapes) We did this train ride when Caitlyn was about 2 weeks old. It was neat to do again, and Caitlyn loved it.

I wish I could say I had an update on the educational front, but really I have no clue. We still don't have a clue what is going to happen next year, right now we are trying to get answers on what will happen for the summer. I hope by the end of the week I will know a little more.

I quit my job because apparently not working is the only way to afford health insurance! Hopefully by the end of the summer we will have SSI up and running, and also have some Medicaid Personal Care hours to give me a break...

I promise to update again soon. Thanks for reading about my princess and her crew...(yes, she runs the show around here.)

A fun long weekend-and a book

Well, since Eric headed over the mountains to spend time with his family this weekend, Caitlyn and I have been enjoying some mother-daughter time. Since Caitlyn's diagnosis, I have become active in the ARC. On Friday they had a Special Connections Carnival. There is nothing more exciting than being around other parents who "get it" while our children have fun. As you can see, Caitlyn had a blast with the bubbles. I kept moving her back to the bubbles so she wouldn't be so irritated that mommy wouldn't let her go in the bouncy house. She saw all the kids having such fun, and wanted to go in...But mommy knew she'd be terrified, so we stayed on solid ground. They had a petting zoo which consisted of some poodles dressed up in costumes, and a couple of quite large golden retrievers. Of course Caitlyn loved the doggies!!! Yesterday was a little big more low key. And then today I felt brave and took Caitlyn and her friend Jaymes to church. (what was I thinking?) They had fun, but Caitlyn was obviously tired. I decided it was time to go after she sunk her teeth into my arm fairly hard in front of everyone! Luckily we had made it through the service and I got my 30 minutes alone...Now both kids are napping for another 20 minutes or so and then I will drive Jaymes to his mom. I hope Caitlyn will put up with a little bit of shopping after that...

A few months ago I bought a book called "Writing to Heal the Soul: Transforming Grief and Loss Through Writing." It is written by Susan Zimmerman. She also had a book called "Grief Dancers: A Journey into the Depths of the Soul" (or called "Keeping Katherine.") "Keeping Katherine" was the first book I read having to do with Rett Syndrome, even before I ventured into the great big "Rett Bible." Some days I think I read it too soon, and then I think about how much I related to the feelings that Susan had. I was able to relate to the anger and the wanting to be away from it all. In "Writing to Heal the Soul," she says about "Grief Dancers/Keeping Katherine": "I had always sought the miracle of a cure for Katherine. I wanted her to wake up one morning and start walking and talking. I wanted to be one of the lucky ones who beat the odds. By the time the book was finished, a different type of miracle had occurred: I'd stopped hurting." She also says "How do I let people know that only through writing was I able to let go of my dreams for Katherine and love her as she is, and my life as it is?" Susan's daughter is older, born in the 70's. It wasn't until Katherine was 7 that they realized what it was that she had. As a mom of a young girl with Rett Syndrome, I feel very fortunate to be raising her in a time where there is a real possibility of a cure. Even though that is a real possibility, I still know that I need to let go of the dreams I have for Caitlyn. The dreams that every mom has for their daughters when they are born. So, I have decided that after over 2 years I am going to take the grief head on and deal with it. I will start making my way through "Writing to Heal the Soul," in hopes that I can begin to reach a sense of acceptance for everything that we have been dealt. It helps going through a grief acceptance book that is written by the mother of a daughter with Rett Syndrome. As I go through the book, I may share some of my writings, as I know from experience that it helps to know others are in the same place you are. I will for sure let everyone know what I think when I am done.

In case you are wondering, we still have no clue what is happening for Kindergarten. It is crunch time with only 2 weeks before school is out.