Saturday, August 16, 2008

School Time!

Time to get back into the school scene! While it is nice to have a routine back in place, it is also a super anxious time for our girls as we try to get everything in place to make their time at school a success.

Here are some things to try:
(the info mentioned here is all available for your use at

Create a school guide
Visit the link above to view my daughter's guide. Her teachers and therapists refer to it more than I ever imagined. It is all about how Rett Syndrome and Sarah's needs in the school setting.

Send home a letter to parents
I had to jump through bureaucratic hoops to get this OK'd, but it was really worth it. It is just a simple letter explaining Rett Syndrome and Sarah, plus our family contact info for questions. This is how Sarah made her very best friend, Mara... her mom read the letter to her and Mara sent Sarah an email. They have had a special bond ever since.

Present to the other children (up to grade 2)
There are two great things that helped set a great tone with Sarah's class. First, I read "It's Not Easy Being Big" (a Sesame Street book). It is all about how Big Bird cannot play many of the games with the other kids because he is so big. Then the book goes on to show how they "adapt" their games to help Big Bird out. Like tying two jump ropes together to make it big enough for him. I went on to explain how Sarah's helpers would be coming up with ways to "adapt" things for Sarah...and that they could come up with ideas too! Throughout the entire school year, those kids were always trying to figure out how to include Sarah.

Second: I played a simple game with the kids. I spoke about how Sarah can hear and understand, but cannot speak. Then I asked them each their names...BUT they were not allowed to say them aloud. I remarked, "see, you know your name even though you didn't say it out loud!" They thought that was pretty cool. Then I brought in a color board with six colored squares made from felt (3 on top and 3 on bottom). I talked about eye communication, then had them each tell me their favorite color with their eyes. It was really fun to see them get excited when I knew their answer just by looking at where they looked.

These ideas are so simple, yet incredibly powerful. I wish you all the best of luck as the new years gets started!

An update on my last entry about creating a "Summer Book." Well, I have to confess even I did not follow through with my own suggestions. But we did have a great summer. Funny, but Sarah helped me out without my even knowing it! On my list was to grow something I could eat -- I did not -- but Sarah grew parsley, basil, and tomatoes in her summer school garden!

Great news!
On behalf of Girl Power 2 Cure, it is with great pleasure that I announce our newest team member! Kelly Butler, a Rett mom from Indiana, is our new Program Director. She will be helping us take Girl Power 2 Cure to new heights! Be sure to send her an email at if you would like to take advantage of new programs that we are putting together. We will have some cool new opportunities for you to check out in the next week or so!