Traveling made easy!

Good Day RettGirls!

Spring is fast approaching and we at RettGirl.org have started thinking about those Spring and Summer break road trips! I know we may be a little early but most of us are so sick of snow and ice - the cabin fever is driving us batty! So, here are three things you can look at to order ahead of time while you are dreaming of that getaway!

Above we have the Zero Degrees Innercool Cooler. I personally use this cooler for plane trips and for small 2-4 hour road trips. We keep our juices, medicines and snacks in it. It sits comfortably under her feet in the back seat of the car.

When flying, we have a little luggage tag with her name and a Refrigerated Medicines tag on it and we have never had a problem with security or anything else. A must have!



This Inflatable travel pillow is such an incredible idea! We know anyone sitting next to our girls often becomes their personal headrest. My daughter always leans to the right so her brother or I are constantly sitting next to her holding her head so it doesn't flop over and then forward. If that engine's running, she's asleep. Absolutely love this one!

For those taking extended trips or who may need a little more of a extended consistent temperature for meds, formula and more we have found this Koolatron 12V Travel Cooler. This handy portable cooler plugs right into any 12v cigarette lighter in your vehicle and stays a consistent 3o degrees! Plus lots of extra pockets for syringes, cell phones and more!

You can find all these handy items in under Travel/Camps at RettGirl.org!

http://rettgirl.org/2011/02/zero-degrees-innercool-24-can-no-ice-folding-cooler/

http://rettgirl.org/2011/02/travel-pillow/
http://rettgirl.org/2011/02/koolatron-12v-travel-cooler/

Happy traveling everyone! Be safe!

Terri V~For RettGirl

Say It With Symbols!

Good Day RettGirls!

This week at RettGirl.org we are featuring the website Say it With Symbols from the folks at Givinggreetings.com

You can find this incredible resource in our Websites and School Stuff!

This site actually came to our attention from a father of a nonverbal child who is currently working on branching out to help all nonverbal people - children and adults.

Say it with Symbols is a website full of products, symbols, tips and free stuff for nonverbal communicators.

I spent hours looking through everything they have and I don't think I touched on half of it.

We are pretty sure you can find just about anything here to help your girl express herself. I know many of you MORE CRAFTIER THAN I parents and caregivers spend hours trying to come up with books, gadgets and pages to help your girls at home, in the classroom and on the go. I am serious when I say, "It's all here. Right at your fingertips!"

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From the company website:

Communicating and Caring Using Picture Symbols:
Imagine not being able to ask for a tissue or say "I need you." For thousands of children and adults who struggle with speech, this is their daily reality. We can help them.

Say it with Symbols! is the first stop resource for families, caregivers and educators looking for affordable, easy-to-use augmentative communication aids that help people with speech disorders actively participate in daily living by communicating with pictures and symbols.

Browse our site to find portable augmentative communication aids, Boardmaker symbol software, pre-made communication books and more that help children and adults express their needs and wants at home, in the classroom, out in the community and in healthcare/rehab settings. Look for the Parent-Inspired Product symbol throughout our site to identify products designed and used by families and caregivers. Communicating is caring.

A resource for families, special education teachers, speech and language pathologists, AAC and assistive technology specialists, nurses and rehab specialists who use communication aids, visual supports, Mayer-Johnson Boardmaker™ Picture Communication Symbols, and PECS with children and adults with communication disorders resulting from autism spectrum disorders, Down syndrome, cerebral palsy, Rett Syndrome, dyspraxia, apraxia, aphasia, Alzheimer's, dementia, stroke and traumatic brain injury

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We are sure you'll love it. Be sure to let us know what you think!

http://rettgirl.org/2011/02/say-it-with-symbols/

Have a great week!

Terri V~For RettGirl

Tar Heel Reader

Good Day RettGirls!

We are so excited to feature a new website at RettGirl.org! TARHEELREADER.ORG

Ingrid Harding attended the ATIA Assistive Technology Conference last week and found some great resources to share.

Amongst a huge stack of papers, she found the "motherload" of FREE digital learning books! It's a website called Tar Heel Reader. You can find this in our Product Reviews under Books, Websites, and School Stuff! Tar Heel Reader was put together by Karen Erickson, special needs literacy guru from UNC-Chapel Hill. She also has developed a more "formal" inexpensive web-based literacy program called Route 66 that is worth checking out and presenting to your school as well.

Everything on TarHeelReader.org is user-created -- so you can upload "books" you have created that will help others as well. There is everything from rainbows and ABC's to Taylor Swift and Justin Timberlake -- literally THOUSANDS of accessible e-books!!!

A bit of instruction:
*Once you select a book, look in the left side menu -- you can select "silent" or a type of voice-- child,woman or man
*Click the "setup" button to download the book as PowerPoint or Flashfor use within other computer programs, switch access, etc.

I personally went there and was amazed! Not only can we read by using our switches, our girls can access this from school using all the cool stuff they have like Intellikeys, scanners and more!

The possibilities are endless. We are very impressed here. We can even upload our own pics to make stories so teachers at school can use pictures from each girl's environment!

Imagine being able to make up stories so easily about the girls and their families, siblings, pets and friends and have them read them back to you! We can make up stories about Rett Syndrome and share them with each other and the world!

We played on it all day. You can "search" by any topic. We read common fairy tales, picture books on her favorite things and are working on ideas to make books just for our girls! I am personally so jazzed I can barely sit in this chair!

I had to actually take breaks and make my girl go watch TV so I could get housework done. I gave up after she was banging her head and screaming at the gate. I let her back into the kitchen and she went right for the computer. She wanted more!! She usually gets very frustrated at all the, "Show me" and "Where is" questions she usually gets during her computer time. I got out her Yes and No cards and asked her if she wanted more books and she hit the yes card with her face and hand at the same time.

We highly recommend this site. You will not be disappointed. Go take a look. Let us know what you think!

http://rettgirl.org/category/products/websites/

Good luck!

Terri V~For RettGirl

Sensory Hammock

Good day RettGirls!

This week at RettGirl.org 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!"

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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.

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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!

http://rettgirl.org/2009/08/sensory-hammock/


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

EYE GAZE!

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 RettGirl.org 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

Special Tomato™ Soft-Touch™ Sitter

Good Day RettGirls!

This week at RettGirl.org 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