Tuesday, April 29, 2008

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

Thursday, April 24, 2008

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!!!

Thursday, April 10, 2008

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.]

Friday, April 04, 2008


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

Tuesday, April 01, 2008

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.