Thursday, November 27, 2008

A friend needs your prayers

Hello online friends and family. I am writing today to ask for your prayers for another mom and her family. Her name is Kelly. Her daughter Jenelle has a rare form of epilepsy called Lennox Gastaut Syndrome. She also has some Rett like behaviors, but has tested negative for a Rett Syndrome mutation. Yesterday, Wednesday Nov. 26th Kelly posted that she has been diagnosed with Leukemia. Kelly has checked into the hospital to start chemo, and will be there for a month. Her whole family could use our prayers! As Eric and I sit in shock, and feeling for this family, we can't even imagine what we would do if one of us became ill and had to go into the hospital. Let's all gather together and pray for Kelly, her husband Brett, their children Jack and Jenelle and the rest of their extended family. Thank you and happy Thanks Giving.

Monday, November 17, 2008

A new mission

It has taken me some time to write this...

Imagine being the mom of a child with Rett Syndrome. (I know most of my readers can do more than imagine) Imagine that you are reading over the evaluation report you recieved from the school. All of the sudden you stumble on two words that stab at the depths of your heart. No one used them in the meeting, but they sure didn't have a problem putting in the evaluation and labeling your daughter with "Mental Retardation." You wonder what gives them the right to use such an old, hurtful term...a term that not even an old doctor has used...You go into the next meeting, and ask that those words be removed from any documents in your child's file. You are told that can be done with written notice. You then ask why they even use it anymore. You are informed that the state WAC (Washington Administrative Code) gives them permission...What would you do?

This is my story, and here is what I did. I called my dad, who spent 8 years in the State Legislature, and asked him what could be done. He said if it is in the WAC, it must be in at least one RCW (Revised Code of Washington). So I get on the Internet and start looking. I do a search, putting "the term" in quotes. I find 48 WAC's and 35 RCW's that contain "the term." I'm shocked. I can't even believe that we are still using it! I understand that it is a medical diagnosis, and that is probably not something I can change on my own. What I can do is fight to have the wording in all 48 WAC's and 35 RCW's in Washington changed. I am working with my local legislatures who are speaking with their policy people. We are going to try to get this to vote for the 2009 session. I will of course update my readers as we go through this process.

You, too, can make a difference. Does your state still use "the term?" There will be a vote in the Missouri Legislature to remove "the term" from government us. It will not change eligibility for people who have had old school doctors that have given them such a diagnosis. In Washington, it is the Department of Developmental Disabilities (or DDD) in Missouri, it is the Department of Mental Retardation and Developmental Disabilities. This must change! Our loved ones do not need such a hurtful, derogatory term assigned to them. Wont you help make a difference?

Friday, November 07, 2008

Momma, I can see!

Caitlyn got her new glasses yesterday, and we are surprised that she is actually leaving them on. School reports they seem to have a calming effect on her. Let's hope this is the beginning of a great learning opportunity for Caitlyn.
I know I haven't shared all about the IEP meeting yet, but I did want to share some news that we got from Caitlyn's general ed teacher. A little girl in Caitlyn's class wants to have a play date with Caitlyn! So I gave the teacher permission to give my number to the other mom. I'm so pleased that Caitlyn is making friends!

Wednesday, November 05, 2008

IEP meeting today...

I am feeling at peace after our meeting today. I will update later in the week, when I can share some of the specific goals we have set for her...The big news...drum roll...Caitlyn with have a 1:1 aide with her at all times!!!!!

Saturday, November 01, 2008

Happy Halloween

Caitlyn had an exciting day yesterday. She had two parties, unfortunately I couldn't make it back to school for the one in her General Education class. The morning one was fun! They colored scarecrow books, and made a scarecrow. Then they had their pictures taken with it. They also had dirt pudding with worms. Caitlyn didn't have any worms because she has trouble with chewing gummy worms. She did enjoy the pudding! We passed on the trick or treating due to Caitlyn and I both having bad colds. Her are some pictures from her morning...

Caitlyn and the scarecrow

Caitlyn's teacher, Ms. Amanda feeding Caitlyn the pudding...Big open mouth...She kept spraying pudding on her teacher!

Caitlyn as Winnie The Pooh. She wore it for about 10 minutes before it just got too hot!

And one last picture to show...The adaptation made to Caitlyn's chair. She has a habit of pushing off of tables and sometimes flips her chair back! This is so cool, we are going to do it to one of our dining room chairs, also!