Back to School!

Good Day Rett Girls!

With the new school year quickly approaching we want to remind everyone about our School Stuff category at RettGirl.org!

As the new year starts I know we are all anxious about new school, new teachers, aides and IEP's.

Our School Stuff category is a place for everyone to use as a resource ... an abundance of information is just a few clicks away. Our resources are gathered from people all over the country. We welcome your additions, too!

Here is the place where you and your daughter's team can find information on books, websites, resource papers, software and links about Education and Rett Syndrome! Tons of stuff here that really goes into how a RettGirl learns. You will find invaluable information on:

Apraxia and how a RettGirl's brain works with her body
Eye gaze
Patience
How to ask
How to respond
Lack of Consistency does not mean lack of intelligence
Therapy Tips
Equipment and software that works

We have invaluable papers we urge you to go over with with your child's team.

Linda Burkhart's- Multimodal Communication Strategies for Children Who Have Rett Syndrome

RJ Cooper's-About "Girls with Rett Syndrome"


OTHER SECTIONS:

Communication

Websites

Sensory

Positioning

Care Notes

IEP Bank


Apple iPAD page with info and helpful apps


Eyegaze System Hub for sharing experiences/ideas with others who have the same device

We urge you to pass this information on to your teachers, schools and therapists!

Have a great day!

Terri V~For RettGirl

Heated throw!

Good Day RettGirls!

This week at RettGirl.org we are featuring a Heated throw. You can find the one above under our Tips and Bath/Toileting categories.

On a recent trip to New York, I stayed with another family of a RettGirl. After running around all day the other mother offered to give my girl a bath for me. She remarked how shaky she was when she got her out of the tub. I told her it wasn't a tremor, just something she does when she gets out of the tub and that she does it every time. Even in summer.

She told me that a mother in Detroit uses a heated throw on her daughter's bed for after bathtime. She dries her off in the bathroom then wraps her in the blanket in her bed while she gets her jammies and supplies ready for bed. What an amazing tip! We came home and immediately put it on our girl's Christmas list.

After sharing this idea it seemed that it had made the rounds with quite a few parents already. Another Mom shared with me that she has hers ready on the couch for when her daughter gets off the bus in the winter after the walk back into the house. Wrapping her up in her throw and talking about her day has become an awesome bonding time for them.

NOTE: One thing all moms did share was to turn the blanket on low. You want it warm. Not hot. Just to get the "chillies" off.

Stay warm and Good Luck!

Terri V-For RettGirl

Happy Halloween!

Hello to all Rett families out there! I hope you all have a wonderful weekend braving the Halloween madness -- both fun and scary, too!

Some years have been great, others we just sit out, hang back and I pass out candy while Sarah watches a video.

We never know until it's time to head out what it will be like. But, if we do make it out this year, it will be the first year that Sarah will be WALKING to Trick or Treat.

We are just going to go to the end of our street and back, but it will be HUGE! Hopefully some scary kid in a freaky mask doesn't jump in front of her and scream his head off and ruin the whole thing, right!?

If you are planning to head out and would like a little something to pass out about Rett Syndrome, we made up these little printed slips that we hope you like! They are available for download by going to http://www.girlpower2cure.org/gp2c-files/halloween-note.pdf.

ENJOY! And remember, if you have incorporated our GP2C flower into your pumpkin design or costume, we'd love a copy of the photos! Actually, we'd love copies of any photos of your girls, too!

All the best,
Ingrid Harding
Girl Power 2 Cure

Pathways to Learning in Rett Syndrome

Happy Monday RettGirls!

Today we want to tell you about this wonderful book titled Pathways To Learning In Rett Syndrome by Jackie Lewis and Debbie Wilson. We have this incredible resource under Books, Communication and School Categories at RettGirl.org

I stumbled upon this book right before my own daughter started pre-school. I was in my local book store trying to find something, anything in the Health and Special Needs section that would help me explain Rett to the school as she was about to have her placement testing and I was scared to death that they wouldn't get it, that they wouldn't get her.

After an hour or more of pouring through the Autism, Sensory and Neurological disorder books and manuals I had found nothing. Only that one little paragraph in the back of the spectrum book that had made me pass out months before.

I went to the customer service counter and asked them to type in Rett Syndrome and only a handful of titles showed up. The clerk then remembered that she has ordered this book for another parent not too long before. She took a look at my girl and told me she would order the book and give me 72 hours to look through it and if I didn't want it I could return it to the store for a full refund.

This book didn't get returned. Within hours of receiving it I had page after page highlighted on how Rett Syndrome affected my own daughter. Before this book I had no idea how to explain Apraxia and how you have to wait for an answer. This book has so many things that we as parents see and know but don't necessarily know how to articulate in a way that an educator or therapist will understand. You will find it all in this book.

I wish someone had told me about this wonderful resource and that it wasn't something I had to search for and stumble upon on my own. This is exactly the reason RettGirl.org was formed. So all parents, caregivers, educators and doctors would be a click away from invaluable information to make life any easier on all of us affected. That is our our mission.


http://rettgirl.org/2010/08/pathways-to-learning-in-rett-syndrome/


Terri V- For RettGirl