October is Rett Syndrome Awareness month!!!

One of the Rett's in our lives...Caitlyn's stuffed dog. We went down for our appointment on January 27, but forgot to bring some toys for Caitlyn. We stopped at the Safeway, and had a lot to choose from because Valentines Day was just around the corner. In an attempt to make something positive with the word Rett, I named Caitlyn's stuffed dog Rett.

I know when everyone thinks of October in terms of medical awareness, you think if Breast Cancer, and the pink ribbons. Before January it was the same for us. October was the time when all of the pink ribbons showed up in the stores, and the check-out clerks at the grocery stores wanted you to donate. This year I am not thinking about the pink ribbons. I respectfully decline when I am asked to donate to Breast Cancer research.

Yes, I am a woman, and I have breasts. But the cause you donate to is so much more than that to me. (there's also the issue that we just don't have money to donate this year.) You see, October is Rett Syndrome Awareness month and that is our choice cause to donate for. Not just in October, but all year around. Yes I know people that have had breast cancer, and I pray for them and hope for success in their treatments. The thing is, my daughter has Rett Syndrome and if my money can make the hope and prayer for a cure more real, then that is where it will go! In honor of Rett Syndrome Awareness month, I wanted to write a little about what Rett Syndrome means in our lives, and how we came to where we are this October. (ok, it turned out being a lot...Read if you choose...)

Have you ever read the poem "Welcome to Holland?" It is the absolute best poem that presents an idea of what a parent goes through when they find out their child is disabled. I think these sort of feelings really hit me hard in February of 2005. Caitlyn was 18 months old, and had just started walking. She was very unstable on her feet, but we thanked God that the day had come where she could walk without our help. (little did we know that we should have been thanking God even more. Just a little more than half of girls with Rett Syndrome ever learn to walk without assistance.)

The reality of Caitlyn being different hit me when we were referred to have her evaluated for a birth-3 program. The main concern was that she was not babbling. We learned before the evaluation that Caitlyn would have to show more than a 25% delay in one or more area to qualify for early intervention services. Even with everything I was learning in school about childhood development, I secretly didn't want to think about that number...25% isn't bad, unless you think about it in more than one area. Well, Caitlyn qualified, and we started the in depth evaluations at The Little Red Schoolhouse. (our local birth-3 place.) At her very first IFSP (Individual Family Service Plan) we learned the results of those evaluations. Talk about a slap in the face! Caitlyn was about 20 months at the time of the evaluations. Imagine our shock when we read that Caitlyn's receptive (what she understood) and expressive (what she said) language development was at an 8-9 month level! She was a full year behind in her language development!

Time went by. Caitlyn couldn't feed herself with a spoon, but loved to color! A pen left in her reach meant that we would be washing walls! We invested in Crayola Color Wonder Markers, and Window Markers. Her walking was much much better. She still startled easily, but was doing really good! She was even starting to do some stairs, while holding both hands with an adult! Everything seemed to be improving except her speech. (she was able to learn to sign "more," which is something she has retained, and has been a God Send for us!) This was about September of 2005. Her speech therapist recommended we took her to see a Neurologist. She said it will take awhile to get in, but there is no hurry...We just want to make sure there isn't anything else causing her speech delay. So we scheduled our appointment for December 2, 2005.

December 2, 2005 would be the first time we heard anything about Rett Syndrome. We were told they wanted to test her for Rett Syndrome and Fragile-X to rule out. All we were told was that Rett Syndrome was mostly girls, and Fragile-X was mostly boys. (We were offered information handouts on both, but decided against it. No point in worrying ourselves, right?) They said they didn't expect anything to come out positive, but it would give them a direction to go after ruling these two out. So we had Caitlyn's blood drawn for the genetic testing, and scheduled our return appointment for January 27, 2006.

Caitlyn was still coloring like crazy, and ofcourse still very oral with everything...but used her hands pretty well. (so she couldn't use a spoon or have the pincer grasp, but we were happy with what she could do! Why do therapists always focus on the negative?) I'm the mommy, and I felt I needed to prepare myself for what might be around the corner, even if the neurologist was doubtful. So, I found the International Rett Syndrome Associations website. I read about wheel chairs, walkers, arm braces, seizures, scoliosis and much much more. One thing caught my eye. A very classic sign of Rett Syndrome was repetitive hand movements, and loss of purposeful use. Ha, I thought!!! It was like a thousand pounds had been lifted off of my shoulders! My Caitlyn could still finger feed herself, use both of her hands fairly well, and loved coloring!!!! I pushed those words "Rett Syndrome" out of my mind!

Not more than 2 weeks later, Caitlyn started tapping her chest in a funny way, and holding her hands together really close to her eyes. Some people laughed. People thought, "look she's pointing at her shirt!" Family asked, "is she signing?" We brought our concerns of this new behavior to Caitlyn's speech therapist. (Now remember, I had taken the "Rett Syndrome" vocabulary out of my mind.) Mind you, we loved Caitlyn's speech therapist! She was the absolute best! Her team at the early intervention program was excited about this new hand movement! They said it meant that she was becoming aware of her hands, and that it would make teaching her signs easier! ("more" was still the only one she had learned.) We took their explanation and moved on...

About mid January I started thinking about the Neuro appointment that we had coming up on the 27th. I read online some more about Rett Syndrome. In the course of a month, Caitlyn had lost interest in her love for coloring. She just couldn't calm her hands enough to make any marks. I re-introduced the world of Rett Syndrome into my mind just to be prepared. As I read on about everything, I felt my stomach creep up into my throat! I cried a lot in private. I didn't want to worry Caitlyn or her daddy...I knew in my mind that she was going to get a positive test result...I felt that if I prepared myself before the appointment, it would be easier.

That didn't help! I still lost it and started crying in the doctors office. I should have been prepared for the words when they told us Caitlyn's test for Rett Syndrome had come back positive. They said they were surprised, and even with the hands that had started she would not have received a clinical diagnosis. We were crushed, but at the same time a little relieved because Caitlyn didn't seem to have any of the tough issues related with Rett Syndrome.

Ofcourse that too has changed. Since January, Caitlyn has started having seizures, holds her breath, lost most purposeful use of her left hand, and about 50% of her right, and have started the challenge with weight gain. Of course there has been developmental gain since we found out too! Caitlyn can stand up in the middle of the room now, she goes up stairs holding a railing, and one hand. (still can't go down, but we're working on it!) She is learning to communicate with pictures and buttons. She absolutely loves preschool. Learning about Rett Syndrome didn't change Caitlyn at all. She is still the same, and knows no different, and for that we are thankful.

As the poem "Welcome to Holland" describes, there is a grieving process that goes on when you receive the news that your child is disabled. I have to admit I am still going through it...I have come along way, but still cry a lot. I also get very angry with it all. I have gotten more brave with taking Caitlyn out in public. She is growing up. We still get some stairs..Caitlyn is tall for her age and doesn't talk, so looks are inevitable. The one thing I still don't like to do is take her places where people know that she has Rett Syndrome. (with the exception of school and day care.) It's not that I'm ashamed of her syndrome, and people knowing. That's not it at all. I know people mean well, but I get tired of the pitiful looks and the "how are you" questions from everyone. It's just easier to stay away. I'd love to talk about something other than my daughter and her condition when I go places!

Thank you if you got this far...I just wanted to illustrate to those who may read and aren't aware of the challenges Rett Syndrome can cause how much can change. In less than a year, we have gone from being worried about speech delays to: seizures, breath holding, weight issues and Rett Syndrome. So, as you see those pink ribbons in the stores, and the commercials about Breast Cancer Awareness Month, please take a minute, and stop and think...October is also Rett Syndrome Awareness month. Spread the word, and educate the community! Thanks for reading!