Sunday, January 30, 2011

Sensory Hammock

Good day RettGirls!

This week at we are featuring the Sensory Hammock. This awesome comforting item can be found under Sensory in our Product Reviews.

I have a friend who's own RettGirl has this and she describes it like being able to hand her child over to a favorite Aunt or Grandma. When her daughter is anxious or needing comfort or is just in overload she puts her a pillow in the hammock and the result is instant. I have seen her calm right down and even fall asleep once or twice.

Her favorite is to put her in it with a cushioned laptray and her iPod and let her have,"chill out time" as she calls it.

Another RettGirl mom says, "The hammock was an early part of our Physical Therapy program. This item is great for our girls with sensory issues. She did not just sit in it; we were swinging her fast, slow, up high, down low – all sorts of fun!"


From the company website:

Unique qualities allow the net to stretch to fit any child and can be used in a prone or sitting position, cradles and puts pressure on the child's sides so they feel safe and secure, gives total body support and even pressure.


Do you have a sensory product that is working for your RettGirl? Please lets us know about it!

Have a great week and Good luck!

Terri V~ For RettGirl

Monday, January 24, 2011

Heated throw!

Good Day RettGirls!

This week at 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

Sunday, January 16, 2011


Good Day RettGirls!

After hearing tremendous stories from many of you about your eye gaze devices, journeys and hardships in getting them for your girls we decided to put together a page at as a resource to help you find out what is out there and how to get it! You can find this all on our new EYE GAZE PAGE!

[An "eye gaze" device is a type of computer screen that uses infared technology to "read" where the user's eyes are looking -- the user can then use their eyes to control the mouse pointer and access software that "speaks" the words the user looks at.]

Some of us here at RettGirl are on our own journeys to get devices for our girls. After seeing the complete and total control one of our own daughters had when testing a device, we knew this was something we had to put together for everyone. When you see a RettGirl answer questions immediately with her eyes then hear a voice give the answer it is amazing! There is such a sense of relief and a giant urge to dance around the room screaming, "I told you so!"

We all struggle with Speech and Language Therapists, caseworkers, insurance companies and schools over communication, apraxia and our girls' hidden abilities to communicate.

We hope to ease this fight for all of us. Very soon. Please read through what we have and use it to your advantage.

As always, if you have any ideas or success stories we would love to hear about it so we can share them with other families.

Included on our new EYE GAZE PAGE:

  • Links to four eye gaze systems
  • Two Medical Necessity Letter examples
  • NEW! Join our EYE GAZE GROUP HUB to share information with other Rett Syndrome families seeking or using an eye gaze device.

TIP! When speaking with insurance companies, use the term “SPEECH GENERATING DEVICE.”

Enjoy and Good Luck!

Terri V~For RettGirl

Monday, January 10, 2011

Special Tomato™ Soft-Touch™ Sitter

Good Day RettGirls!

This week at we are featuring the Special Tomato™ Soft-Touch™ Sitter. For those of you that have anything in the Special Tomato line you know that this is an incredibly comfortable and sturdy line of adaptive equipment.

The Special Tomato™ Soft-Touch™ Sitter can be found in our Product Reviews under Positioning.

We use our sitter all over the house. In the living room we actually sit it in the recliner and harness her in. It keeps her from falling over and she can still watch
TV or play in a sitting position comfortably.

In the kitchen we strap it to a kitchen chair and she can join us for dinner or family games. No booster seat needed. With the 5 point harness we don't have to keep one hand on her at all times.

One RettMom says,"This chair is so comfy for Annie. She can rock and not hit her head, and it tilts back just slightly so it’s perfecting for eating but doesn’t prevent her from using her switches. I love that it straps right onto our kitchen chairs so she’s can be pulled up to the table with the rest of the family."

Another mom uses her Special Tomato™ Soft-Touch™ Sitter with her daughters Special Tomato® EIO Push Chair . It fits right into the seat and provides that extra support for extended periods in the stroller.

Description from the company website:

The Special Tomato™ Soft-Touch™ Sitter Only is an adaptive seating system for children with special needs. It is recommended for children with mild to moderate physical involvement from the age of 1 through adulthood. The Soft-Touch™ Sitter promotes an upright, seated posture with unsurpassed comfort and upper body support

This sitter comes in 5 sizes for girls up to 200 pounds.

Those of us here at RettGirl that own one highly recommend it.

Have a great week and good luck.

Terri V~For RettGirl

Wednesday, January 5, 2011


She can't do this. She can't do that... It can be a real downer for Rett Girls every day. But... only if we let it be that way.

To kick off the New Year with an empowering attitude, Girl Power 2 Cure and RettGirl are launching a new YouTube channel called RETT WE CAN!

Here is why we created this channel (inspired my Rett mom Terri Vejrosta!)

* to share the "Rett" experience by showing the things Rett Girls CAN DO
* to put an empowering, positive, human face to Rett Girls
* to have a place to send therapists, family members, volunteers, and donors to see Rett Girls staying strong
* to have all the great YouTube videos ORGANIZED by category*
* to get inspired
* to explore different things to work towards with Rett Girls
* to educate others about Rett Syndrome

If you have a video you would like us to include, please send us the link! (post a link on Rett Girl's facebook page or email us at

Please know that there will be a wide spectrum of girls featured on the site. Not all girls will be able to everything here. For instance, I know my Sarah probably will never water ski like Jade, but others just might!

The point is to always reach FORWARD. Always explore and challenge and keep Rett Girls active. All of us have a role to help bring these girls to their full potential. Each girl's potential will be different, but we want to make sure everyone stays inspired to believe...and have the tools to inspire everyone who lives or works with a Rett Girl.

Check it out now at!


* Our current categories are Walking, Hand Function, Eye Gaze, Communication and Expression, Sports and Adventure, Therapies.

NOTE: When you visit the site and see the category listings, click on one...then you will see all the videos under that category. Remember to send us suggestions and even category recommendations! We want you all to be a part of making RETT WE CAN a great resource!

2011 is a NEW YEAR! Best wishes and strength to all!
- Ingrid

Monday, January 3, 2011


Good Day RettGirls!

While building we wanted it to to be The place to go for those of us living with Rett Syndrome.

Our first desire was to make it a place that families and caregivers could go to find anything they may need to make this journey easier. The lingering thought in the forefront of all of our minds was that we did not want anyone to ever have to go through what we did when our girls were diagnosed.

We searched the internet and books and never found anything in the same place or anything that helped us live with Rett Syndrome. You can live with it and we are determinded to make RettGirl the place to go to find anything you may need.

We have complied a list of helpful websites in many areas and we want to make sure that everyone knows what is out there to help you and your girls.

In our Resources section we have a useful links to other Rett Syndrome Organizations:

Rett Syndrome Research Trust

International Rett Syndrome Foundation

Israel Rett Syndrome Center


Rett Syndrome Association (UK)

Rett Syndrome Community Foundation (North Carolina)

Rett Syndrome Research Assistance (Ukraine)

We also have links to many General Disability Resources that no one seems to have handy. There are so many services provided by all these organizations. We encourage you to check them out!

Supplemental Security Income

National Dissemination Center for Children with Disabilities

Worldwise Education and Awareness for Movement Disorders

The Arc of the United States

Special Needs Financial Advocates

Special Needs Advocate

My Child Without Limits

But no it doesn't end there! We also have links to Product Resources! Adaptive equiptment,supplies,therapy tools,toys,clothes and more!

In our new School Section we have links to several Free online games for our girls as well as their siblings. -Dr. Seuss games, books, etc. worksheets for all academic areas, daily and monthly themed events that parents can download to use at home. -educational resources for autism. -educational resources, parent friendly. – math website. – interesting fun and educational. – online games. – exploring the world. – educating kids about the solar system. -free online games, puzzles. – based upon the Magazine but Kid Friendly. – a fun place to learn! games that uses earobics. – coloring page website. – educational games.

Just click on our Media section and it will take you to Websites for:




The Gluten Free Mall

Communication Tools and so much more!!

This is just part of the many resources we have for our families at RettGirl. As always, we hope you will find whatever it is you are looking for at and if not, let us know and we will do our best to find it for you!

Terri V~For RettGirl