Taking it all in...and that volunteer announcement

Today was our meeting to go over the evaluations. It was emotional and hard. The wording is a hit that hurts so deep. The psychologist says the evaluation results put her "optimistically at a 24-36 month level." He says they gave her the benefit of the doubt on a lot of things. This momma had a really hard time hearing the things that were said. I am processing a lot of it...We have a lot of decisions to make as to what we will ask for at our meeting next Wednesday. That's really all I can say at this point...As I continue to process more, I will work on a post.

An update on the crazy PE lady. Caitlyn will no longer be joining her classes in PE. When the life skills class goes on Tuesday mornings, [my favorite para ed.] will keep her and one other student behind to work on turn taking with rolling and passing balls. They will also work on some yoga poses to help with range of motion. They are going to try and re-work her therapy schedule so that she can have speech or motor therapy while the general education Kindergarten class is in PE. We are so thankful that we wont have to deal with the PE teacher anymore!

Everything in our lives is one day at a time...

And now for the announcement. Since my business cards came in the mail today, it all feels more real. I am the new Washington State Regional Representative for the International Rett Syndrome Foundation. I'm hoping that I am far enough along on my Rett Syndrome journey to help new families just starting out on theirs. I have been stock piling my resources in the last couple of months, and going through some training sessions to make myself familiar with educational resources in our state. I hope that this journey just furthers my own understanding and acceptance on the Rett Syndrome path.

Anger and other feelings

Yesterday Caitlyn had a quick appointment at school to have her AFO's looked at. So, after that meeting I stayed until lunch so I could see what the mornings look like. I felt feelings of my daughter being cared for, feelings of anger, and finally feelings of knowing I'm doing the right thing by fighting.

First, the anger...There are some huge issues going on with the PE teacher that are very angering...She has issue with Caitlyn's hand mouthing. She makes them put her arm braces on, which in my mind makes the PE time no longer meaningful. Caitlyn can't do much in PE without bending her elbows! Caitlyn's aide informed me that during General Ed if she doesn't have her braces, the PE teacher makes her wear a sock over her hands!!! We are furious and I'm feeling as though it is border line abusive to humiliate her and restrict her in such a way! So, as soon as I received this information, I went to the Life Skills teacher. She said they have brought up the issue, but apparently hearing it from the teacher isn't enough. So, she asked me to please bring it up at our meeting on Thursday. I was actually in tears talking to the teacher. Can you believe it? A sock over my daughters hands because she can't handle the spit!

I have questioned our decisions to fight so hard at times...Just because I wasn't sure if it was my agenda I was fighting, or if it really was what is best for Caitlyn. Yesterday answered all of my questions. Mom's and Dad's you MUST get inclusion in your IEP if you expect your child receive any during the day. And being in the lunch room at the same time as typically developing children is NOT inclusion. That would be equal to putting a poster of the alphabet on the wall and say you taught it to the children! Caitlyn's class goes to recess alone, and they sit off in the corner during lunch. These are the two times that the school tried to sell me on their inclusion policy. The poor children in that room are essentially being isolated from the rest of the school...It just breaks my heart...I wish I could fight for all the other children in that classroom, too! Inclusion isn't just about academics! Children deserve the right to meet and be around their peers!

Caitlyn's off on her field trip today...I'll update what I know probably tomorrow, along with an update after our meeting.

Important meetings in the next couple of weeks.

If you remember back in September, I posted about our initial IEP meeting with the new school district. Well, our two months are coming to an end now. It's hard to believe my baby is almost 2 months into Kindergarten. I wish I could say that Caitlyn is doing wonderfully in school and that she has proven her ability to be in a general ed classroom. The truth is, it has been a very rough 2 months. I don't think it is in any way a true portrayal of Caitlyn's true abilities. It is frustrating and exhausting. She loves being in school, and the other kids love having her there. BOTH of her teachers are amazing. I know in my heart that my reasons for wanting her in a general education classroom has nothing to do with me doubting her true abilities. I know this, but at the same time I find myself wondering what is really best for her. I want her to have relationships and be accepted by the other kids, but I also want her to have a successful academic foundation. I am finding that the other kids can't help but be accepting to Caitlyn. I had a mom tell me that her daughter loves being able to sit next to Caitlyn! Caitlyn gets to go with her general education class to the pumpkin farm on Wednesday! She is going to have a blast, I'm sure...but mommy is terrified!

Back to those important meetings. Thursday October 30th, we will meet with the team to go over the results of the recent evaluations. This has me a little down. I try to keep in mind that the effects of Rett Syndrome on Caitlyn leave her unable to preform on a standard evaluation. She did relatively well. I was allowed to be there and help out with the evals, and for that I am grateful. We showed them how we sing "Old McDonald Had a Farm." Those that have seen Susan Norwell may find this familiar. Caitlyn picks the animal we sing about, and mommy sings. If Caitlyn looks away, I stop singing. She knows that if she looks back to me, I'll continue singing. She giggles and points at the animal the whole time. I think the eval team really enjoyed seeing that! The eval was hard for me. I have no doubt that Caitlyn knew a lot of what they were asking her to do, I think it was just too hard to make her body do it! My heart hurts for her, but she is such a good sport about it, and doesn't seem to be bothered! I know that Caitlyn is not at a 5yr old level developmentally. I am hoping to hear her put at atleast a 3 yr old level in one or more areas. If nothing else, it will show a developmental progression since diagnosis! Keep these numbers in mind, until I come back to update after that meeting. At 18 months, Caitlyn's receptive and expressive language evaluations placed her at a 9-10 month level. Please pray for our strength while we receive the results of her evaluations at 5 yrs.

On November 5th, we will go in again for the official IEP meeting to discuss permanent placement for the remainder of the year, as well as fine tuning her IEP goals. I want Caitlyn to be successful...That is ultimately my goal. I want whatever comes out of that meeting to full reflect the needs and abilities of Caitlyn. I will be sure to update everyone after this meeting!

Last month our family became victim to the economic downfall when Eric was layed off from his job. He is still without work, and looking hard. In the mean time, I have gone back to work. I am an Assistant Site Director for a before and after school YMCA program. I am really hoping that this will lead to a full time Site Director position in the near future! After one week, I am enjoying my position. I have also taken on a volunteer position, which you will have to wait to hear about!

I sent Eric to the store for batteries, so be on the look out for pictures in the near future!

Pure Joy at the Park

Caitlyn and I went to the park yesterday, and I am kicking myself that I went without a camera! Her favorite activity has always been the swings. After outgrowing the baby seats, the park wasn't the same for her. She couldn't enjoy her favorite activity, because she couldn't hold on and stay seated. Well, the park closest to our house now has an adaptive swing! We watched from afar as other children climbed into it on there own and used it. This little boy was in it for awhile, and when another swing opened up I went up the parents and said "Excuse me, but would you be willing to move to another swing? This is the only swing my daughter can physically use." They were more than willing, and Caitlyn giggled and laughed as she swung through the air without having to worry about falling! She was soooo excited! I was so happy for her, and it took all I had to not break down crying as my daughter can swing again at the park! I promise the next trip to the park will include a camera! The life in her little face....it would have you in tears too..Tears of joy!

"Your Daughter Threw Up"

I just spent the last three days in some training (I'll post more about that later). Tuesday morning I called the school to inform them that I would be in meetings for the next three days, and to please call Eric if they need anything. So, we are finishing up the morning session (at which we were presenting our knowledge from the prior two days) and my pocket is vibrating. So I peak to see who it is. I recognize the number as being school. I admit I ignored the call, but in my defense I sent a very lengthy email to Caitlyn's teacher last night (also worthy of its own post), and I thought it might have something to do with that. So I check the message when we finish up, and it is the school nurse calling to say Caitlyn "threw up quite a large amount." So I call back, and talk to someone in the health center, who tells me "yes Caitlyn threw up, and can I come pick her up?" Now, Eric and I are not the type of parents who will ignore her being sick. If she is truly sick, I'd go get her! But I was suspicious, because a couple weeks ago a similar thing happened, and I get there to get her, and her teacher said "yeah she had her hands in her mouth and stuck it back pretty far, but that's never bothered her before!" ARE YOU KIDDING ME? They called me to come get her because she gagged herself! Anyway, so I wanted to know the story...I got the story...no she didn't gag, she had her arm braces on at the time...I said, "Ok, I'm in meetings all day, I'll call her dad to go get her." Well, Eric isn't feeling well and was still in bed, which is why he hadn't heard them call! So he goes to the school. He said when he arrived and saw Caitlyn dancing around in the lobby, he had to hear the story....He got three different stories from people, but the ultimate truth came from that aide that had been with her at the time. It turns out she had just eaten some cheerios, and started getting upset. Then she burped some and SPIT UP!!! They called me to come get my child because she swallowed too much air and spit up! Eric, bless his heart, told them it is common, it wont be the last time, blah blah blah...What a pain!!! Anyway, that's my story for the day. Speaking of Caitlyn, I need to go wake her from her nap...Every once and awhile she just really needs to crash after school, and today was one of those days!

Caitlyn isn't disabled!

Well, atleast according the Washington State Department of Developmental Disabilities. It appears that there is an important piece of paper missing from Caitlyn's school file showing that she has developmental delays. I guess it isn't enough just to talk to someone and hear that she is receiving services, and does have nearly global delays...Or enough to contact her SSI caseworker and find she qualifies for their services...Nope, for now Caitlyn doesn't have a diagnosis or disability that qualifies her for services...Maybe they should come visit my home? What a joke...I just want some medicaid personal care hours so I can get a break! grrrr...Stay tuned, I'll let you all know if they decide she is indeed disabled...

Just a picture to start off the week

Wouldn't you like to start off your week with a picture? My sister took this picture over the summer. I think it was during one of our "bangs or no bangs" stages...We were on a train ride through the super fun Country Village. One of those fun typical outings! I don't know what the week will provide as far as posts...Caitlyn is having a speech evaluation on Thursday, so I will atleast post after that. Maybe I'll even have more pictures! I really hope the eval goes smoothly...Now is the time for her smarty pants attitude to shine!

Just wondering...Do you find that other girls with Rett Syndrome have deceiving cheeks? With the chubbiness of her cheeks, people don't see how skinny she really is!

The Good Side of a Monster

When a life altering even happens, such as finding out your child has Rett Syndrome, it can be somewhat hard to find the good in it. Had I been asked 2 years ago to name 10 positive things about Rett Syndrome and my daughter, I would have laughed. In my mind, at the time, there was no good. It isn't just about finding the good in a sad event...It's about finding the good in a monster...and it is there...

The GOOD Things About Rett Syndrome (in no particular order)

1. It is a diagnosis. There are many families out there that are still on the road to find a diagnosis for their child. A friend of mine would respond to people saying "My son has GOK syndrome." (God Only Knows). As much as finding out your child has Rett Syndrome hurts, imagine how much more it would hurt if you were still trying to find an answer. It closes a chapter of the unknown.

2. You learn to celebrate the little things. We clap and cheer just for a little tinkle in the toilet. Sure, all parents get excited when their children become potty trained...But we cheer for each time they go, and they may be 5 before they go the first time! We celebrate food making it into their mouths, even if it will never happen again. We celebrate the little attempts at communication.

3. You learn the true meaning of unconditional love. You will never hear your child say "I hate you!" As they run out of the room. They depend on you for every aspect of their life, and are so in love with you. You can see it in their eyes. That is a love that will NEVER go away!!

4. You develop a compassion for people that isn't anything learned in a book. I admit there was a time when I would feel such pity for people with children who were disabled. It just broke my heart! Yes, it still breaks my heart, but their is no more pity. Now, I see the strength in everything that parents do. I secretly praise them for having the strength to go out. I appreciate people more than I ever have before.

5. You meet the most amazing friends. The Rett Syndrome community is so close knit. We lean on each other in the good times and the bad. We may only see each other once or twice a year, unless we live close. The friendships are lifetime. Tragedy brought us together, but hope and joy keeps us together. Interests change, and your other friends may drift away. The friends I have made as a result of Caitlyn having Rett Syndrome are the most cherished friends I have. We follow each other's girls like they are our own. We help each other keep it together. (Gals, you know who you are.) It isn't just the moms...The Grammy's become our friends to. They follow our girls and love them.

6. You become an expert. Sure, I could go to school and become a doctor, but why spend that amount of time in school, when I already know more than some doctors. I am an expert in the subject of Rett Syndrome. The thing about that is, I can also accept that things are changing, and there is always more to learn.

I can find the good in Rett Syndrome, but that in no way means I like it. It has had some positive effects on my life. It has taught me to slow down. It has showed me appreciate every step I take. I have learned that at the end of the day, when I am exhausted and tired, I know that I did everything I could for that day. I learned not to think about yesterday (unless it involves not having a bm) or tomorrow. I live in the now. I live one day at a time. I have the privilege and responsibility to not only be a caretaker, but also be a voice. We are our children's voice. They have the best advocates they could want.

Rett Syndrome has brought out a side of me that I didn't know exited. It has brought out a leadership side of me that I am learning to embrace. Through my own experiences, I am learning to give other parents the power. Rett Syndrome has changed my life for the better.



I have a lot of ideas running through my head for topics throughout the month. My husband has agreed to do a piece at some point, giving everyone a father's perspective on Rett Syndrome. This should be a great month of reflections on Rett Syndrome and our lives. I am opening up to my readers, and if there are any questions or topics you would like me to reflect on, please let me know.

October is Rett Syndrome Awareness Month!!!

Welcome to the first installment in the Rett Syndrome serious 2008. Do you know our story? A quick recap: Caitlyn was born on August 5, 2003 at 10:20pm. She weighed 7lbs .02 ounces. (exact weights...) She was a beautiful baby girl with a head full of dark curly hair. Two days later we took her home. Everything proceeded normally, or so we thought. We look back now and see things that are now considered red flags. Caitlyn was a very quiet baby. She didn't even cry when she was hungry! We had no clue that this was a sign of things to come. Caitlyn's large motor skills developed slowly, but wasn't a huge concern. She started walking at 18 months, but was pretty unsteady and had lost the 5 words she once had. We first heard the words Rett Syndrome on December 3rd, 2005. The doctors were testing her to rule out the Syndrome. We had no clue that 6 weeks later we would be sitting in that same office hearing that our baby did indeed have Rett Syndrome.

So that is a brief overview of our story. You might ask "What is Rett Syndrome?"

Rett Syndrome (RS) is a neurological disorder often misdiagnosed as autism, cerebral palsy or non-specified developmental delay caused by a defective regulatory MECP2 gene, found on the X chromosome seen almost exclusively in females. Unlike females, who have two X-chromosomes, males have an X and a Y chromosome. Because males lack a "backup" copy of the X chromosome that can compensate for a defective one, mutations in MECP2 are lethal to the male fetus. This is why RS is found overwhelmingly in females. Rett Syndrome occurs in a variety of racial and ethnic groups worldwide now known to occur from 1:10,000 to 1:23,000 female births, but incidence may be far greater as new genetic evidence is discovered.

Development appears normal until 6-18 months of age followed by loss of acquired speech and hand skills, slowing of head growth and development of stereotyped repetitive hand movements, loss or difficulty with mobility hand movements include handwashing, hand wringing, hand tapping, hand clapping and hand mouthing. Stereotyped hand movements may change over time and additional problems may include seizures, breathing irregularities (hyperventilation and apnea), teeth grinding and curvature of the spine (scoliosis). 99.5 % of cases of RS occur only once in a family. Barring illness or complications, survival into adulthood is expected.

This month I will be doing a series on Rett Sydrome and our family. Join as I share our most deep and private struggles with this devastating syndrome. I will also share the happy moments, and the positive effects Rett Syndrome has had on our lives. If you find yourself asking "what can I do to help?" stay tuned.