Events!

Good Day RettGirls!

October is Rett Syndrome Awareness month and it is just a few days away.

At RettGirl.org we are committed to bringing all things Rett to you in an easy to find format.

We have an Events category where you can find so many things.

Fundraisers- Several upcoming fundraisers all over the country put together by several organizations to benefit our girls and our cause. Do you have one coming up that you would like us to list?

Conferences- Conferences to support, educate and inform.

Workshops- Any workshop that would brainstorm or educate families so we can better support our girls and each other are more than welcome.

Event ideas- We have past events listed here for fundraisers you can put together in your area. We have had Dress Up 2 Cure events, Rockin for Rett concerts,Silent Auctions and Dancin for Rett. All successful. Have you had an event or party that has raised funds for Rett Syndrome research? Please let us know.

Rettaways- What a great idea! Events and places where you can go to learn,unwind and be around those who get it.

As always. We are here for you. If you have anything that would benefit a RettGirl that we don't have listed...Please feel free to contact us.

Have a great week!

TerriV- For RettGirl.

Wrist and Ankle Weights!

Good Day RettGirls!

We want to tell you about these wrist and ankle weights we have found for your girls from Therapy Threads! You can find them in our Sensory and Therapy Categories at RettGirl.org
In the past, a couple of us had ordered weights for our girls for therapy through other companies and found that we just were not happy with them. After ordering a few weighted blankets from Therapy Threads, we started exploring the site and came upon these weights. In comparison to other weights in cost and sizes, these are the best we have found.

We have some moms that use them everyday by switching between putting them on the wrists or the ankles ever other day. I think they give tons of sensory input to my own girl and I can honestly say they have reduced her hand flapping and now I can actually feel tone in her calves.

For the ambulatory girls you can just put them on her wrists or ankles and off she goes. I recommend about 20 minutes. She doesn't even seem to notice them and still gets a work out.
For our girls who are not mobile they can still be put on the wrists and she will get her workout by just having them there and with the back and forth movement she naturally does with her arms and hands. When you put them on her ankles you or your PT can still do her regular leg and PT work outs with added sensory and strengthening.

I brought them to a hospital PT session and the staff there was amazed by them and stopped using their own with my girl when she was there. No kidding!

The lady who runs and owns the company is a Special Needs Mommy herself and wonderful to work with.

http://rettgirl.org/2010/08/wrist-and-ankle-weights/


Good luck!

Terri V-For Rettgirl

The Power Of The Purple Card!

October is Rett Syndrome Awareness month and it is fast approaching! We want everyone out there to know about GP2C's Purple Card!


If you are like me, and I'm sure you are..You hate having to tell the who, what, when, where and why's of Rett Syndrome everyday. Especially if you have your daughter with you. Mine gets particularly upset and looks at me with those eyes as if to say "I am so sick of hearing this and I am sitting right here! Stop talking about me!"

We have a Store category at RettGirl and have added GP2C's Purple Cards.

It's basically a handy little card to keep in your wallet to hand out to people who need info.

Just one mother's opinion:

"I don't know what we would do without our purple card. We have used it everywhere. In the store when strangers are staring. When those uncomfortable moments come where people are asking too many questions and it is neither the time nor the place. When people are arguing that your child has that "Aspirin disorder." Or when they keep telling you that it is not Rett it is Tourette.

I love being able to hand them a card with facts and a place to learn more.

When our daughter was in the hospital we handed it to residents, nurses, surgeons. We had to send someone home to get more after doctors and social workers kept coming in and asking for them.

We have been told that they are they best idea ever for a special needs kid with a uncommon disorder. I could go on and on. Every member of our family has a handful in their wallet!"

You'll never know the power of the purple card until you try! It is a great way to share your Rett
Syndrome story anywhere! Imagine, you won't have to explain all about it in front of your
daughter ever again!

Highly recommended!

http://rettgirl.org/2010/09/the-purple-card/

Terri V- For RettGirl

Teaching Learners With Multiple Special Needs

Hello RettGirls!

We are so excited about all they new things we have up at RettGirl.org. We have been all about education lately and PROVING to everyone that are girls are in there and more than capable of learning. They just need a little more help than the Neurotypical Child.

With this in mind we have found a wonderful website we are very excited about. It is called, "Teaching Learners With Multiple Special Needs."

We didn't stumble on this site by accident. The person who runs it is very good about keeping up with special children and have offered advice to some of us when we were having education, communicative and many other issues related to schooling our daughters.

I have spent hours on their site taking notes and sending links to others. Just some of what you will find at this one website:

60 Things to Do with a Switch
AAC Dynamic Display Devices
AAC Funding
AAC Increases Verbal Language
AAC Programming and Tech Support
AAC Resources and Products
AAC Static Display Boards for Purchase
AAC Text-to-Speech
Activity Sharing
Alternate Format Books and Stories
Calculator Options
Email for Everyone
Fabulous Freebies
Free and Low Cost Head and Eye Tracking
Free Boardmaker Boards, Activities and Tutorials
Free Online Activities
Free Software
iPod App Round Up
Online Switch Activities
Paraprofessional Resources
Photo and Picture Symbols
Reading Websites
Seizures in the Special Needs Classroom
Signs and Symbols
Software for Special Needs
Special Education
Special Needs Scissors

What an incredible resource. You can find this and much much more at your fingertips at http://www.rettgirl.org/

IEP BANK!

What an exciting day at RettGirl.org.

You asked for it and now we have it! An IEP bank has been added to our School Stuff category at RettGirl.org.

We know how frustrating and confusing the whole IEP process can be and we want to help as much as possible. This is just the beginning of our continuous efforts to make RettGirl the "go-to" place for EVERYTHING Rett!

We have started the bank off with a Pre-K a K, and a K-2 IEP. They were taken directly from our own daughters' files and retyped using the language we all want to see in our IEPs.

So many times we sit down at those meeting shaking in our boots because we don't know what to say or what the school wants. Everyone tells us we are in charge. We are! Believe me. I went through 3 IEPs and 3 she-is-incapable-of-progressing meetings before I took over the meeting and the IEP and we couldn't be happier!

Remember we are building and always welcome your input. If you have an IEP you would like to share with us we urge you to do so. It took me less than 30 minutes to type one up off of the master copy as to exclude all the district and personal information.

Feel free to scan and send us your own that you would like to share with other parents who are struggling. All names of districts,teachers and staff must be omitted or blacked out. We will even re-work it for you if you just want to send it and don't know where to start. We do suggest keeping it to goals and therapies and what works for your daughter. No one needs all that mess of what the district thinks your daughter can't do!

We have also added an example Care Notes section as well as Educational Information Links under the School Stuff Category and in the IEP BANK!

We hope you will find this as exciting as we do. As always feel free to contact us with any questions you may have!

http://rettgirl.org/school-stuff/iep-bank/

Good luck!
Terri V for RettGirl
Teresa@girlpower2cure.org

School Stuff!

Happy Monday Rettgirls!

We at Rettgirl are so excited to announce the new School Stuff tab at Rettgirl.org!

Over the summer we put our heads together as we were getting our own Rettgirls ready to go back to school. Several of us had girls going to new schools and started thinking about what we wanted for parents and teachers.

Wouldn't it be nice to have a place parents and teachers could go and have an abundance of information right at their fingertips and just a few clicks away?

Click on the School Stuff Tab and it will take your directly to a place we have built just for you. A place where you and your daughters teachers 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 Rettgirls mind works with her body. Teachers will find invaluable information on:

Apraxia and how a Rettgirls 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

Communication

Positioning

Websites

All located in the books,resource papers and links recommended by parents who have been there and advocated for their girls.

We urge you to pass this information on to your teachers,schools and therapists! We are confident you will be glad you did!

As always..If you have a great tip or link that works with your daughter that we don't know about, please let us know so we can share it. Our goal is to make Rett Syndrome a little easier for all of us!

Terri V for Rettgirl

Nosey Cup

Good Day Rettgirls,

We have a new listing over at Rettgirl.org and are super excited about it.. It is called the Pink Flexi Nosey Cup(also available in blue.)

We discovered this cup during a visit to our daughters school. We had sent along a sippy cup and had assumed they had been using that.On this day we visited during speech therapy and our girl was drinking from this cup. I was floored! We were so happy you would of thought she had won a pageant instead of just acquiring the skill to drink from a cup.

Your child sips or drinks from the Nosey from the tall end. Because of the cut out the cup doesn't hit her nose or face. Therefore the liquid can get to her mouth before the cup hits her forehead. Yeah! Why didn't we think of that?

Help your child learn drinking skills with this flexible 1 oz. cup.( Also comes in a larger size.) Children with limited head extension, poor lip closure, and swallowing difficulty benefit from the cup’s flexibility. Unlike other cut cups, these Pink and Blue cups can be gently “squeezed” to change the shape of the cup lip. You can see the liquid through the translucent plastic all the way to your child's mouth. Reduces the risk associated with regular cups because you control the flow.



You can find the Pink Nosey Cup,among many other items, in our Product Review section under Feeding.



Have a great week!



Rettgirl