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.

A couple sweet stories to share

I have been thinking a lot about cute little things that have happened in the past year and thought of this sweet story I wanted to share.

Caitlyn was in the nursery at church with my niece. Caitlyn had a fairly big seizure (big for her) and then was laying on the floor upset. (she gets upset when people freak out about them...Eric and I have learned to just be casual about it and then she doesn't get scared) So she is laying on the floor crying and banging her head and I am told that my niece Trinity (who is now almost 3) was quite concerned. She told the nursery gal, in a very concerned voice, "I think you better get Caitlyn's mommy." Caitlyn is so lucky to have such a wonderful cousin, who just this morning told her mom "mommy, Caitlyn talks...We all talk." Isn't the innocence of a young child the most wonderful thing. I am sure that they will grow up to have an amazing bond.

Another little story...Let me go back a couple of weeks first..Caitlyn was invited upstairs to play with the neighbor. She had a blast. The little girl took Caitlyn's hand and just towed her around the house showing Caitlyn all of her toys. Then the little girl came and played here while I was in Chicago. The girls had a blast running around together, and she doesn't see Caitlyn as being any different, except that she notices she can't talk. So today Caitlyn and I were coming home from our morning walk with my sister and her daughter, and the neighbor and her little girl were outside. I wasn't sure if Caitlyn would look up and see them, but she did. The mom said "hi Caitlyn," and Caitlyn didn't react much...But when that little girl said "hi caitlyn," Caitlyn started sputtering and babbling and dancing around...she had the hugest smile on her face....This is so cool to me, because I remember a day when Caitlyn loved adults but could care less about other kids. Now she loves being around other kids. My little social butterfly!!

We will be getting a new camera this summer, but Eric says I have to wait. For now, he promises to find the cord to my camera so I can get the swimming video off and take more pictures! Stay tuned for super cute pictures of my princess!!

She Drank IT!!!!!!!

I know what you're thinking, that's a strange title for a post. Soon you'll understand. Caitlyn hasn't been a huge milk drinker since she was 18 months old and we quit giving her bottles. (This was before we knew anything about Rett Syndrome. Had we known that 2 years later she would have lost her chubby cheeks and be just barely sitting at the line between underweight and ok I never would have taken those milk bottles away!) Anyway, so occasionally she'll take a few sips of milk, but mostly she just spits it out. I ready this funny cute little story on Brooklyn's blog the other day that got me thinking. We had at one point tried strawberry syrup, but it didn't make a huge difference. (that and with all the sinus issues and vomiting she was having, we had pink stains all over our carpet!) So last night while I was shopping I remembered Brooklyn's mommy saying she really liked her strawberry nestle quick. (4 scoops...the only way to go) So we tried it with lunch today. I was a little more conservative than Brooklyn's daddy...Caitlyn only got 3 scoops in about 5 ounces of milk. She drank the whole think without spitting it out!!!!! I had a feeling it would go over, because she likes the strawberry pediasure, but strawberry milk smells so much better! We are hoping we have a milk drinker back on our hands!!!!

On the thought of meals...We found Jimmy Dean breakfast bowls...They have sausage (or bacon), potato, egg and cheese in them. Full of yummy fat and protein and Caitlyn loved it! I'm all for quick and easy breakfast on school days!

My camera is having technical difficulties, so I'm not sure when I'll be able to get a new picture up. I think I might try and talk my wonderful husband into letting me buy one for my birthday..So be on the look out for cute pictures. And if you really need a cute kid picture fix, you can always head over to Brooklyn's blog...Her mom is great with the picture taking!

Thoughts to Ponder-a post on mobility and other Rett things

This got to be a little depressing and kind of a pity post...Now I'll have to take a super cute picture to make up for it...

Isn't it funny how no matter how you have it, it somehow looks better on the other side? I talk to my friends who have children with Autism about how their kids always run off. They stress about it and such. I say just once I'd like it if Caitlyn would walk to the front door on her own instead of having to hold my hand. Caitlyn is very very nervous and cautious with her walking outside. She panics if we step off of the sidewalk and onto the grass, and she wont take more than a couple of steps without hold someones hand. I am a mean mom somedays. I make her step over the threshold to go in or out on her own. We have stood for near 10 minutes at times waiting for her to take that step. Mind you this is like a 1 inch step. Sometimes she will get silly when she walks, and just stop and twist which then makes it look like I'm dragging her! We were outside today and she got stuck on a hill. She almost made it to the top, then she just stopped and sat down looking at me like "mommy, why didn't you help me?" It was the most pitiful look. There are days like today when I wish she was more independent with her walking. She leaked last night while she was sleeping, so we had to wash her blanket. Well it doesn't fit in our small 1/2 size washer so we took it down to the laundry room and payed the outrageous fee of $2.25 to wash it. Well, walking down there was a trick. It's always a trick when I have things to carry. She did think it was really funny to go out the front door and head the wrong way as fast as she could (which luckily isn't that fast) giggling while she went.

I think as a parent of a child with any sort of disability it is important to try and see the brighter side...

• I will never have to worry about her running to the street


• We can be around a pool and even though she has the fearless love of water, she wont go in alone because she wont step down off of ANYTHING (lakes and oceans are another story)


• She stands right by the car while I unlock it (standing in fear of her surroundings, but standing still)


• I can go to the laundry room with her, and do my think with the clothes, and not worry about her running into the parking lot...again there is a step


• She loves to hold my hand and will reach for it...I'll never have to worry about her pulling away from mommy


• She loves sitting in her stroller(to the point that she almost nose dived off of Santa's lap this past Christmas because she wanted to get back in!)


• She makes me take my time-She doesn't walk very fast, and every time she holds her breath she has to stop going places takes awhile. And then she is such a people person that she stops and looks at everyone who passes!

I used to take for granted my ability to get where I wanted to go. I never even considered how I got that way, or what it might be like otherwise. I was always in a hurry, and never really noticed my surroundings. Caitlyn has made me appreciate mobility. I see the fear on her face when we walk down a hill, or when we walk onto the grass. She is literally terrified that she may fall. I hate seeing her go through that, because at home she is so comfortable and shows no fear. I never complain about the mobility that she does have. I don't complain for the same reason that parents of children who talk shouldn't complain about the things they say. Or the same reason that parents shouldn't complain about having options for their child. I don't complain because I know first hand that their are parents out there who are thinking or might even say "at least she walks."

Chicago was hard in a lot of ways. Ever since Caitlyn was diagnosed with Rett Syndrome, I have struggled with being around other families. The first time we met another family, we drove to their house for dinner. I left feeling like I didn't fit into this community her diagnosis had put me in. I hate that she has this Rett Syndrome monster, and sometimes I feel guilty that she has the abilities that she does, even though they are limited. I hate that two girls with the same diagnosis can have it so different. I struggle to find where we fit into the community. (of course I'm in tears as I write this) I'll never forget our transition meeting when Caitlyn was aging out of birth-3. The nurse said to us "I've seen girls with Rett Syndrome, are you sure this is what she has?" This was the same lady who said to us and the staff when the year started. "It's not a matter of if the seizures get worse, it's a matter of when. They will get stronger and they will get worse and eventually the medication wont work." These are things I'll never forget. I'm proud of Caitlyn for the things she does. I know she's worked very hard to be where she is. She's come along way from the 2 1/2 yr old that the doctors said would pretty much be 2 1/2 mentally forever. She continued to gain skill even after she came out of her regression. Being handed a diagnosis is scary and it leaves you feeling even more lost. You feel like you're doing it all alone. And when your child has a condition like Rett Syndrome with such a vast difference of how it effects people you still feel all alone. Caitlyn's Rett Syndrome has made it so I've made connections that I wouldn't have made otherwise. In Chicago I met people in person that I felt like I knew everything about. I know they have Rett Syndrome in their life, but even though we share that common diagnosis our girls are all sooo different.

On a happy ending, even though our girls are so very different, they all have one thing common. Each and every girl with Retty Syndrome that you will ever see have the most amazing eyes. Let's go back in time now and look at this picture. This is from September of 2006...I think more than any other picture this shows the beauty of Rett Syndrome. The Eyes of an Angel

The Eyes of an Angel

From the Angel's mouth,

No words are heard.

Yet all those around her

Know just what she says.

From the Angel's eyes,

We hear her story.

Through her eyes we learn

Her every want and desire.

Look into the Angel's eyes,

And a story you will be told...

A wordless story full of joy...

The story of a Rett Angel.

Kindergarten Update

I know everyone is probably waiting for an update from the conference, but Kindergarten is on my mind so that is going to be first. (I'm sure this will have reference to the conference)

Earlier in the year when we discussed kindergarten with Caitlyn's preschool teacher, he gave us our three options (dk, self contained, or general ed with an aide) and we chose general ed with an aide. He said he would support us in what ever decisions we made. Fast forward to May 20th. (IEP day) He makes no reference in the IEP to this placement decision, and he left the meeting before we were done! (why do they schedule them so close together?) Luckly the placement that is in there is for the current year. It was overall a very stressful meeting. He told us that he couldn't give Caitlyn credit for the things [we know she knows] because she isn't consistant. (A friend of mine said that is the most consistant thing about our girls..that they're not consistant!) So I left that meeting feeling pretty down about everything. The conference really helped me realize that even though her teachers may say things like this, she really is learning. She really really is!!!

Jump back a couple weeks before this, and let me tell you about our brief [unofficial] meeting we had with the school psychologist at the new school. I told her what we wanted to see happen, and she said that an aide in the classroom made the environment no longer the least restrictive. We told her that we wanted Caitlyn at our home school and she said (with a bit of attitude) that she wouldn't necessarily go there, it depended on where the program was she needed. I told her we wanted her in general ed. She then went into this big schpeel trying to 'sell' the idea of self contained to us, because that's not what they call it. It's academic support and the kids spend their non-academic times in the general ed classroom. I walked out of that meeting reminding myself that academics can be adapted within the general classroom. I know we will have a fight on our hands, and this is just the beginning. I'm sure by the time September comes around that psychologist wont want to see me...ever...

So that brings us to today. I think that the conference really gave me the strength to make this fight. My daughter deserves an education equal to that of any other child in the district. So today I called the psychologist and told her we needed to meet to discuss the placement. and my exact words were "It is our intention that she will be educated at her home school in a general ed classroom as the least restrictive environment per IDEA." I'm sure she'll be super eager to call me back....

I will continue to update when something new happens...But for now that's everything on the education front...

Something exciting I learned at the conference is that my daughter is all there. I have a new found energy to communicate with her. She picks her shirts in the morning (from 2-3 pre-approved by mommy), what flavor oatmeal she wants, what she wants with the oatmeal and what kind of sandwhich I should make for her lunch. She seems to have such joy from making these choices...momma and daddy are finally starting to figure her out, and she loves it!

Chicago was wonderful

I had a wonderful weekend and it was so neat to meet so many different families! I'm so happy I got to meet all of the wonderful mom's who's blogs I read. (I will update my list of Rett girls soon, I promise!) The weekend was full of information, but I'm not quite done processing it all...So until this tired momma gets it all processed in her head, I'm going to leave you with a picture that my wonderful husband sent me while I was in Chicago. This is now my favorite picture of Caitlyn. She is such an angel, and apparently she wouldn't sleep last night because daddy told her they were going to pick mommy up the next day! It gives a momma a sense of pleasure to know their daughters truly show they missed them, or show excitement to see them. (You rett momma's know what I mean...They are aware....so very aware)

Chicago is here!!!!!

I leave for the airport in about 20 minutes!!!!

This is HUGE!!!!!

I decided this time the Chicago Count Down needed a new post.

5 DAYS UNTIL CHICAGO!!!!


I should find out what the weather will be like so I can pack!

Chicago Countdown!!! (We're in Single digits now!!!)

To all those other moms and dads(and grandma's) that I'm so excited to meet in Chicago.......



7 DAYS (not counting current day) or

1 WEEK

A common bond

I saw this on another blog...We are bonded together no matter what the special needs are our child may have.

To You, My Sisters (and Brothers!)
by Maureen K. Higgins


Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.We have our own personal copies of Emily Peri Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent.And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Our Rett Syndrome Clinic visit

Here is the overview of our appointment...I have to add that I bought Caitlyn 4 of these talking picture frames to use as simple communicators throughout the house. If you are interested, here are the instructions on how to adapt them into communicators.

There is an amazing doctor at Legacy Emmanuel Children's hospital that is very familiar with Rett Syndrome. We went down this week to see her, a speech therapist and a physical therapist. They all said she looks great.
Speech therapist report: Caitlyn seems very eager to communicate. She had the opportunity to try out a computer that had a touch screen on it. There were two different colored boxes on the screen and one had a sunshine hiding behind it (you could see a little bit of it). Eric asked Caitlyn to touch the sunshine. She touched the box it was behind. the sunshine rose and then set behind the other box. Again Eric asked her to find the sunshine. and she did again!!! She used a little mac switch to ask for more crackers. It is just amazing! The therapist said she sat in front of that computer and used it like she had always used it! Then we were able to try out a TANGO communicator but Caitlyn was too tired to do anything with it. But I sure liked it! Here are a couple of links to it. http://www.blink-twice.com/tango/u_videos.html?all=1# This link has some videos. If you scroll down to the bottom, there is actually a video of a girl with Rett Syndrome using it. http://www.spectronicsinoz.com/product.asp?product=24191 this link tells more about it. The therapist is going to talk to a vendor so that when we go back in October, we can have more things to try.

Physical Therapist report: She is doing great! We need to make her wear her braces more often. They said her heels can get tighter, so we have to be proactive with it all. We also need to find a therapist outside of school that will follow her and check her spine (she is at high risk for scoliosis) and hips.

Medically Speaking: They agree that it seems as though Caitlyn's repeated sinus infections is in fact Reflux. During the night it seems that she was refluxing into her sinus cavity and causing infections. So she will remain on Prevacid for now. She weighed 37lbs and was nearly 43 1/2 inches tall! We are in the process of evaluating if we want to try a low dose ADHD medication for school. We will talk more about that with her normal ped.

I think that is about it. Overall it was a great appointment! Well worth driving 200 miles and staying in a hotel! It is nice to have doctors who know what Rett Syndrome is before we even get there! I hate educating doctors...I don't feel it is my job!

Chicago Countdown: 21 days until takeoff!!

Warning: Angry mom of child with a disability

I feel the need to get this out there today. To spread the word and hopefully make other parents aware and help them let go of their ignorance. As you know, we recently moved into a new school district. Our original plan for next year was that Caitlyn would attend a general education kindergarten classroom with an aide. We were excited about this, but going into our future talks with the new school district we were willing to be flexible. The reason we were willing to be flexible was because the new district had a development kindergarten option that the old district didn't. They had integrated classrooms with 8 typically developing students and 8 developmentally delayed (IEP) students. Now all those parents out there with children who are disabled, you know how exciting of a program this would be. Now I hope you are sitting and prepared for some shocking news...I found out from a friend who works for the district that this program would not be happening next year. I had assumed it was a funding thing, until I asked her why. Her answer: The parents of the typically developing children were fighting the program and didn't want their child in the class! Instead they want to turn our children into some sort of toy that the other kids get to play with for a few minutes each day. Somehow my child is supposed to enter society in the future being treated like an equal. Her peers are the children her age. These children are being taught by their PARENTS that my child is different and is not an equal. These PARENTS are depriving their children of the opportunity to learn some tolerance and acceptance. These PARENTS are depriving MY child of the opportunity to have THEIR child as a role model. I am angry and disgusted that the parents of the typically developing children want their child to live in a world that continues to be ignorant and excluding of people with disabilities.

My child does not talk and she may have trouble with her hands, but my God she is learning! Her brain is all there, and she hears the things you say and she understands. If anyone from the new school district is reading this (probably not because I'm not so bold as to name the district) know that I will take this fight clear to mediation and due process to have my daughter receive the same education as the precious typical children in your district. She will be fully included. It is no longer my hope...It is my job to get her the education she deserves...

-Mom on a mission...beware

Moving, IEP's, Rett Clinics Oh My (and more)

Hello. It has been awhile, but I am here to update now. We have been quite busy with our lives. First of all, we moved into our new apartment on April 12th. We are desperately hoping this is our last rental and we will be able to purchase a house in a couple of years. Although moving is a pain, let me just explain to you how much easier this move has made my life. At our old apartment, we were on the second floor. In the mornings, I would carry Caitlyns bag and my stuff in one hand, and pick her up under my other arm to go down the stairs. When we came home, as long as my bladder wasn't killing me (have you ever tried using a public restroom with a child who licks/chews on everything? Or tried to maneuver a special needs stroller through a non-handicap stall because some lady all by herself took the handicap one? nah, I'm better off just holding it!) Anyway, if I had the time, I'd make her do the stairs to save my back. And when I say, if I had the time I mean it would take her sometimes 10 minutes to go up. I guess it's hard to coordinate steps when you are holding your breath...have you ever tried? I'm sooo happy to say we now live on the bottom floor!!!! I don't have to carry her!!! (Except the past two days because she fell asleep in the car, which she never does anymore!) Another wonderful thing about our new home is that it is a disability accessible apartment!!! We have wheelchair width hallways and door ways and most cool of all is the HUGE bathroom!!! I can move around when I go in to help Caitlyn! It is incredible! I am already feeling the relief of no stairs on my back.

Unfortunately we weren't able to remain in the same school district. We are nervous and excited all at the same time. Our wonderful teacher this year has agreed to pretend he doesn't know we moved. We will continue driving Caitlyn to school until the end of the year. I went to start registration for her knew district. We don't know yet what sort of class Caitlyn will be in. We are hopeful that we can still get her in a general ed classroom with a 1:1 aide. Her IEP will be done in our current district before the end of the year, so luckily it will hold documentation and recommendations for placement in Kindergarten. If we end up having a fight for general ed, we are willing to settle for a Developmental Kindergarten class that is integrated at a rate of 8:8. There is a huge exciting factor to the new school district!!! They have an Assisted Technology Team!!! This is the team that would handle all of the things like communication and switches and such...We are just so excited that we will have that support. The old district has always been a little scared of technology...I just can't wait to have support in find a "voice" for my daughter!

Next week we have a very exciting appointment!!! We are going to meet a team of doctors that we don't have to spend the first 15 minutes explaining what Rett Syndrome is!! They already know what Rett Syndrome is!!! We will be able to ask them all of our questions, and get the answers we need from people who really know Rett Syndrome. Our appointment is Thursday morning, and the lady from the office told me this week that there is no appointment after ours, so we have 2-3 hours to ask everything we need to and have Caitlyn fully evaluated! I will be sure the update everyone when we get back.

As soon as I find which box my camera is in, I will be sure to get some new pictures of Caitlyn.

And my most exciting news is that I leave for Chicago in 29 days!!! I am going all by myself to attend the International Rett Syndrome Foundations Conference!! I'm sooooo excited!!!

Now What...

This picture really doesn't do the "rash" justice. But I wanted to put it out here for other families incase they see something similar on the faces of their daughters with Rett Syndrome. The school made us take Caitlyn to the doctor to see if the rash on her face was Chicken pox. The doctor said no it was not, but diagnosed her with Folliculitis. The way her Ped. described it was what usually in children it is seen in the diaper area caused by moisture build up and friction. Well, when your daughter has Rett Syndrome and never has dry hands, and chronically rubs her face, you end up with this condition on the face! And once you have a few spots it spreads. Caitlyn looks like a poor teenager going through puberty. Because of the widespread of it all over her face, she is being treated orally. Hopefully it will clear up. It is very possible that this is what she had last June when we thought she had the chicken pox. I just wanted to let others know about this condition in case you see it too. It isn't chicken pox and it IS treatable!

[what you can't see in the picture is that Caitlyn and mommy are also fighting Strep throat.]

NEW WHEELS

We are sooo happy to report that Caitlyn received her new wheels today. Thank you so much to Kaitlin's Mobility Foundation for giving us the grant to buy this wonderful stroller. She is so comfortable in it! We will head out to the mall over the weekend to try it out! We are preparing to move, and I'll update more about that later. Our next big purchase will be a new car seat...We are looking at this one or this one. We are also starting to look at some different hi-tech communication options. All I can say is, never take for granted that your child got their voice for free...When you start adding up the system and the software you get beyond $4,000. It is probably a couple years off. One step at a time. For now we are sitting pretty in our MacLaren Major Special Needs stroller

Inside the mind of a Young Women with Rett Syndrome

Hello friends and family. I hope that everyone had a wonderful Easter. Ours was relaxing and enjoyable. Caitlyn and I are enjoying our week together, as she is on Spring break this week.

I am writing to tell you about an amazing blog I came across through a link on Brooklyn's. Karly is a young women with Rett Syndrome. She has her very own blog. She has the ability to type (haven't found out the hows yet) and she writes about some of her feelings. A quote off of her recent post says "When I was in elementary school the therapists and teachers were convinced I was functioning at an infantile level. It was painful to hear what they were presuming about me. I was so sad that none of them tried to give me a way to communicate with them." -Karly (click quote to access Karly's website)

Please take a minute to read more about what Karly shares with us. As we come in contact with Caitlyn, (and any other girls with Rett Syndrome) let's keep in mind that she hears everything we say. Let us all work at finding a successful way to communicate with our Rett Angels.

Another update

So it was brought to my attention that I didn't update about Caitlyn after Sunday (thanks Kelly.) Caitlyn is doing much better. She is sleeping quite a bit but that may be due to the recent increase of her Seizure meds. We are just feeling so relieved that she was able to beat this on her own. We took her to the ER on Sunday after several episodes of her lips turning blue when she coughed. They checked her over, and said everything seemed fine. We were prepared to treat yet another sinus infection, and the doctor gave us the prescription but advised us to wait a few days. She said if it was bacteria the fever would not break on its own. Well, the fever broke and she continues to get a little better every day. I do believe this is the first time she has had just a cold!

A very Happy Easter to everyone.