RettGirl Resources!

Good Day RettGirls!

We hope everyone had a wonderful Holiday week.

This week we wanted to make sure that everyone know about our Resources page at RettGirl.org and the abundance of information we have there for you! It has taken alot of time and effort to get this all in one spot and at your fingertips, and we plan on adding more soon. It is our mission to be the GO TO place for all things that affect our girls!

We have information on:

RESEARCH

Rett Syndrome Research Trust

Website: http://www.reverserett.org/
Blog: http://www.rettsyndrome.wordpress.com/
Newsletter: RTT Watch
Twitter: www.twitter.com/rsrt

OTHER RETT ORGANIZATIONS:

International Rett Syndrome Foundation
Israel Rett Syndrome Center
Mikyla-Cure
Rett Syndrome Association (UK)
Rett Syndrome Community Foundation (North Carolina)
Rett Syndrome Research Assistance (Ukraine)
Stitching Rett Syndroom (Netherlands)

PAPERS ON RETT SYNDROME FROM SPECIALISTS:

Multi-Modal Communication Strategies for
Children Who have Rett Syndrome
Linda J. Burkhart

Optimizing Nutrition for Girls Affected with Rett Syndrome

Sara-Jane White, Doctor of Naturopathic Medicine

ABOUT “GIRLS WITH RETT SYNDROME”

LETTER FROM RJ COOPER – Pioneer in Assistive Technology
www.rjcooper.com

Back to School Tips From Parents:

Back To School Strategies for
Children Who have Rett Syndrome
GirlPower2cure

How to Adapt with PVC

PVC Assistive Tech

Websites

We hope you find many things you need here. As always we welcome your input. We could not have built this list without you!

We are truly dedicated in helping new and existing families live with Rett Syndrome with the most information and support possible.

Terri V~ For RettGirl

Holiday Tips from Girl Power 2 Cure!

Happy Holidays RettGirls!

With the Holidays upon us we wanted to give some advice for Parents, Friends and Families of RettGirls on how to handle the holidays,visiting,gifting and including the girls in your life!

Year after year we hear stories from parents who are just beside themselves with the stress of the holidays. From family who don't know how to interact with their girls, to not knowing what to get them. I have had several parents tell us that they are ignored or not included.

Our Mother site Girl Power 2 cure has come up with some great tips on how to handle the holidays with ease and we'd like to share them with you.

Stress and Inclusion


The biggest thing to overcome during the holidays is just pure stress. Everyone
out there feels it, but when you have a disabled child thrown into the mix, stress
can rise to a whole new level. Stress of disappointment over your daughter’s
condition, stress of your daughter’s anxiety as the routine and activity level
changes, stress of how family and friends act towards her, stress of travel, stress
of food choices. Mix this in with some certain lack of sleep and it is a recipe for
disaster.

So, think about changing things around, being more open to doing things
differently, and being more open with those around you about what they can do to
help make this holiday a more positive experience. Do not try to fit your daughter
into your traditional routine. It is time to make some new traditions, keeping her
needs in mind.

Handling anxiety and sensory overload --

two key issues for Rett girls.

Anxiety often comes from not knowing what to expect. Talk to your daughter about
events coming up several times before they happen. Explain to her where you are
going, who will be there, what will happen, and what is expected of her.


TIP: Consider bringing along a portable DVD player with her favorite videos
as a fallback. Although it is heartbreaking to feel she is not included,
sometimes it is just better for her to be engaged with something familiar.


Sensory overload can strike us all. If your daughter can’t tolerate being amidst
all the festivities – gift opening, big dinner, singing, etc – be sure to have a plan for
her and talk with her about it.


TIP: Tell your daughter, “Today is a very special day. We have people
coming to visit. If you are feeling anxious, you can stay in your room with
your music or television. And then this afternoon we will have a special time
where each person will come to you and spend a little time with you and give
you a gift. I will help you give them their gift, too. Maybe we can even have
pictures of each person and you can pick you who would like to see and
give your gift to next!”


Creating a more relaxing environment:


Rett girls usually love twinkly lights. Consider having them in more places than
around the tree and outside. How about in her room?

Opening presents: Traditional paper gift wrap can be a nightmare. Rett girls will
get paper cuts and even try to stuff the paper in their mouths, so maybe someone
else handles opening for them. But imagine the combination of loud ripping paper
and someone else opening your gift?


TIP: Wrap her gifts in fabric. Even if it is just one of your colorful T-Shirts
with a big bow! It will look pretty, feel soft, and it will be quiet – and she can
actively help open her own present!



Help from visiting family members and friends:

This is a great opportunity to be a really big help! Even just 5 or 10 minutes here
and there with your special Rett girl will be very welcomed. Consider these things:


Read her a book.

Brush her hair and put pretty bows in for her.

Help feed her.

Take her for a walk.

Give her a foot massage.

Listen to some music together.

Sing her a song.


Tell her a story from your past holidays.


You can find this and many other tips at:


http://www.girlpower2cure.org/holiday-tips.html


Happy Holidays from All of us at RettGirl and GirlPower2Cure.org!

Snuggie!

Good day RettGirls!

Oh Man It's cold outside...for most of us... :0)

This week's featured product is the "As Seen On TV" Snuggie. We have this product listed on RettGirl under our Tips and our Holiday Guide.

We received a Disney Princess Snuggie for our daughter's birthday and soon learned that it could be used for much more than just cuddle time.

We lay it on the floor for floor time and watch her scoot her little self around the Snuggie so she can look at all the designs and kiss the characters. She is now doing 360's on the floor!

Our biggest discovery is that we can use it as a wheelchair blanket for about one-fourth the price we are finding wheelchair blankets for online. Love it when that happens!

This morning the windchill was -1 degrees. We placed the Snuggie on top of her transport chair and the chair over the heating vent in the kitchen. Everything was getting nice and toasty while we got her ready for school.

Within 10 minutes we were able to put her in her gear and wait at the door for the bus. She had her winter jacket, stocking cap and Snuggie on. We wrap and tuck the sleeves around her hands because we gave up on mittens a long time ago. She really does behave as if she is on a clock to see how fast she can get them off after we put them on. No worries with the Snuggie.

There was no playing of the Brr Brr shiver game and she clapped and sang all the way to the bus!

Highly recommended!

http://rettgirl.org/2010/12/snuggie/

Good Luck!

TerriV-For RettGirl!

Hatchback Shoes!

Good Day RettGirls!


This weeks featured product at RettGirl.org is Armbraces.com's Hatchback Shoes! You can find this shoe in our Product Reviews under Clothing/Shoes.

These shoes have been suggested to us time and time again for our girls that wear AFO's. We have heard rave reviews from parents who searched for months and years to find a shoe that would fit their girls.


I personally have spent days in shoe isles pushing and shoving my girls feet and braces into shoes that were sub par. The toe is always too narrow or I feel like I am going to pop her knee out of joint or break her ankle just to get a shoe on in the morning.

From the company website:

Every Hatchbacks shoe incorporates a patented hinge system called "Easy Fit"
that's as simple as A, B, C. The "Easy Fit" system is designed to facilitate ease of
entry and egress from the shoe by pivoting open at the hinge. The shoe remains
firmly closed by a Velcro fastener that is also very easy to use.

To make an Elite shoe, we took our "Easy Fit" system and created a custom last
molded around a brace. This new last provides extra width around the toe box,
extra girth around the ankle, and more room around the heel. This means that
most children will be able to wear Hatchbacks Elites that are the same size as
their foot size. No more wearing shoes two sizes too big! We took this specialized
last and added a lightweight sole, quality materials, extra tough stitching, and
great contemporary styling.

One RettMom says, "My daughter has been wearing these shoes for over 3 years now, they are made for children with AFO’s, they are so easy to take off and put on and they are good quality!"

This same Mom used to chew my ear off every time she saw me trying to shove my daughters foot into a store bought shoe!

Like with all of Armbraces products they have an excellent sizing chart to ensure you get that just right fit for your child.

Your shoe search is over!

http://rettgirl.org/2009/08/hatchback-shoes/

Good luck

Terri V-For RettGirl

Whole Body Vibration Platform

Good Day RettGirls!

This weeks featured product at RettGirl.org is the Whole Body Vibration Platform!
You can find this item in our Product Reviews under Sensory and under Therapy!


What in the world is Whole Body Vibration?


Excerpt from Company Website:

WBV vibrates the entire body. The vibrations generated when the motor underneath the platform vibrate the person standing on the platform. These vibrations cause the muscles to lengthen and contract.

An immediate effect of WBV is improvement in circulation. The rapid contraction and relaxation of the muscles basically works as a pump on the blood vessels increasing blood flow.

WBV is highly suited to people who have difficulty training because of Muscle weakness, illness, disorders, weight or injury. It is also highly suitable for persons who want to stimulate and strengthen their muscles without stress on joints.

WBV effects described in studies include: muscle strength, improved bone density, improved blood circulation, toning, cellulite reduction, heightened secretion of hormones associated with exercise and depressed response of hormones associated with stress.

Vibrations cause compression of the bone tissue, activating the bone building cells (osteoblasts), while reducing activity of the cells that break bone down (osteoclasts). In preventing falls and the bone fractures that often result, increasing bone density in not the only important issue. Increased muscle power, posture and balance are factors to consider. Studies involving elderly subjects have shown that all these issues can be improved using Whole Body Vibration.

Research has shown positive effects in pain management and the treatment and prevention of osteoporosis and other ailments. Vibration is a far better alternative than dangerous osteoporosis drugs.

WBV has been demonstrated to significantly increase muscle performance in sedentary people. You entire body musculature, as well as your internal organs and glands are positively affected by WBV stimulation. Even the brain experiences physiological changes. Studies have shown better rehabilitation of injuries or surgery than traditional methods of therapy. It is very good therapy if you have conditions such as arthritis, fibromyalgia or multiple sclerosis.

Wow, right? So, we thought we'd give it a shot. Two of us at RettGirl have these machines for our daughters. For me I was a bit scared to try my girl on it because of her tremors and low body awareness. I thought it would scare her and I can be a wee bit overprotective..Ok a lot.

Most machines come with various levels ranging from low to high. We put our daughter on her machine and timed it for one minute. I stood by ready to rip her off if she started screaming and set the timer for 1 minute. I was amazed as she stood there giggling and wiggling for 3 minutes!

Like any therapy it's something you have to do and stick with to see results. When we use it every day or every other day we see better balance and better bowel motility with her. When we forget we notice it. She is more easily constipated and off center.

We work her whole body on it by standing her on it and holding on of course. We also work her arms, which are very weak my having her kneel next to it and placing her hands on the machine. The vibrations stimulate all the muscles in her arms and back just by kneeling there, which also helps strengthen her core.

The Whole Body Vibration Platform is a favorite here at RettGirl and comes highly recommended by those of us who have one.



One of our Superstars in action!








Good luck!

Terri V-For RettGirl

RettGirl. THE Holiday Gift Resource!

Good Day RettGirls!

We have been working hard for you behind the scenes to make RettGirl.org THE Holiday Gift "go to" place!

Much time and research has been put into finding gifts for those oh-so-hard-to-buy-for children of ours. I know many of us spend days walking up and down the isles in a daze. We have compiled a list of tried-and-true gifts that parents have recommended and a few new things that our own girls love!

We have so much to offer at RettGirl as a whole but wanted to make a "go to" list to make Holiday shopping a little easier on everyone!

You can check out full list (with descriptions) at the end of the blog or click the holiday button and view the list at RettGirl.org! We have kept everything in the under $40.00 price range so it can be easily attainable and hintable for those Grandparents, Aunties and Uncles!

My First Picture Dictionary (Disney Little Einsteins)

Sesame Street: Elmo’s A-to-Zoo Adventure:Wii

Natural Aquatics Frog Aquarium with 2 Frogs

Sing-A-Ma-Jigs

Zoobies

Living Aquarium

Signing Time

Mini Massager

Glo E Light Up Bear

Karly Wahlin: In My Own Voice

My Pal Violet or Scout(for boys) by Leap Frog

Ocean Waves Music CD

Talking Photo Album

Fridge DJ Magnetic Learning Piano by Leap Frog

Alphabet Spin and Sing by Leap Frog

We are iPad crazy here at RettGirl! We have all seen the videos and stories coming out of the Special Needs world about how awesome this gizmo is for kids like ours. One of us finally got access to one and went though each recommended app with her own child to see how it would work with a RettGirl! Click on the button above to check out her recommendations!




We now have a button on RettGirl.org to directly to the GP2C shop to purchase magnets, tattoos, gift tags, CDs and more! We are so excited about our new Gifts that Raise Money for Rett Syndrome link. What an awesome idea! Girl Power CD's are so much fun! You can now download the CD through CD BABY as MP3 files right off the website! How cool is that? Tattoos, Gift tags, magnets..so much to choose from! Go Girl Power!

We can't wait for you to visit. Take a look around and buy something special for a girl you love this holiday season!


Best Wishes!

Terri V-For RettGirl


GIFT LIST [click title to visit on RettGirl.org and get ordering information]

My First Picture Dictionary (Disney Little Einsteins)

Join the Little Einsteins for a brand-new learning experience! Preschoolers will have a blast learning vocabulary words with this new dictionary. Featuring beautiful full-color photos, and fun Little Einsteins illustrations, My First Picture Dictionary includes over 900 words and definitions organized by situations common to a preschooler’s world. A big winner for grade school girls!

Sesame Street: Elmo’s A-to-Zoo Adventure:Wii

Recommended from a Mom who's daughter can sit for hours watching her siblings play the Wii while grasping for the remotes. This game comes with a special remote with a parent help feature!Teachers letters through engaging mini-games
Easy to follow audio-visual directions that preschoolers can master on their own
Use the second Wii Remote to drop-in and assist your child when needed
Game difficulty adapts to your child’s level
Wii and Nintendo DS versions include Gameplay Helpers to simplify gameplay for your child.

Natural Aquatics Frog Aquarium with 2 Frogs

Not exactly a toy but a great gift Non the less.The Natural Aquatics “Living Aquarium” is a natural and balanced eco-system designed to function exactly like a wild aquatic biotope, all in a small package Perfect for the home, office, classroom or anywhere, the Living Aquarium provides an almost carefree way to bring a little nature into your life. The African Dwarf Frogs are the entertainment. The Snail is the janitor eating algae and leftover food. The Aquatic Plant oxygenates the water. And the Living Gravel at the bottom of the tank biologically filters the water converting the waste (ammonia) from the animal to food (nitrates) for the plant which in turn takes that energy and produces oxygen All you have to do is feed the tank twice a week and change the water twice a year Your Living Aquarium will be a fun addition to your desk or home that will educate your friends and family about the wonders of the natural world. Colors may vary.

Our daughter’s school has these in the office. One little tank on every ones desk and my girl screams,giggles and claps every time she sees them.

Sing-A-Ma-Jigs

Free-spirited, offbeat character that features unexpected laughter and excitement with every interaction. Features three modes of play including chatter, singing their own song or singing in harmony with their other Sing-a-ma-jig friends.
In chatter mode they speak their own language full of jibber and jabbers..
They always harmonize with each other perfectly every time.
The more Sing-A-Ma-Jigs you collect, the larger the chorus.

Zoobies

Olivia, the fun loving, adventure seeking pig will easily become your child’s best friend. From her cute piggy snout and adorable red dress, to her creative charm, Olivia is by far the nicest and most playful pig around. The Zoobies team has worked hard to bring Ian Falconers storybook character to life. Not only is Olivia a plush toy, but also a pillow with a uniquely printed cozy coral fleece blanket zipped inside. Zoobies come in many characters and animals for every childs favorite snuggle buddy.

Living Aquarium

ealistic animated video. Play any Scene individually or all together. The Screendreams videos are the videos that are usually playing on the flatscreen in Doctor and Hospital waiting rooms.

Easy-to-use / Continuous play / NTSC / Dolby Digital Natural Sound Effects / Soothing soundtracks / Vivid picture resolution / Realistic animated video. Play any Scene individually or all together.
We play them at home during quiet and relax time.

Signing Time

These videos are so much fun. Sign was not something we had really considered once our daughter lost her hand function until she was placed in a class with a hearing repaired teacher. She responded so well when she was signed to as well as spoken to.

This line of videos is by the same woman that does the signing songs on Nickelodeon and Nick Jr. She really makes it fun.

Mini Massager

Our PT first introduced us to this Mini Massager in therapy. It is wonderful for relaxing those tight muscles in the back and shoulders without over stimulating your girl. We use it on her hands and feet when circulation is poor and the tootsies are getting cold.

Also available at Walmart and Walgreens

Glo E Light Up Bear

Night lights are a thing of the past! This magical light up bear is sure to help comfort your child’s fear of darkness. Just squeeze the bears’ hand and watch it light up and change colors like you’ve never seen before. Glo-e was created to encourage a peaceful night sleep with nothing but sweet dreams for the little ones. Get the best of both worlds by having a night light and a teddy bear all in one!

This bear goes with us everywhere and puts our daughter to sleep every night. A must have! Many bears to choose from.

Karly Wahlin: In My Own Voice

Collection of exquisite, lyrical compositions created by a remarkable young woman with Rett Syndrome who writes her songs one note at a time with the help of a music therapist. Features piano, viola, and two poems.

My Pal Violet or Scout(for boys) by Leap Frog

RettGirls absolutely loves this toy! You connect it to the computer and teach it to spell their name say there name. You can also program their favorite color, food, and animal and it sings songs with this information. It also plays classical good night melodies. One Mom reports.. It says “Good Night Elayna”, “I love you Elayna.” The look on her face when it first said her name was classic. It is worth it to get it if my girl loves it I know yours will too! It is so hard to find something to interest her.

Ocean Waves Music CD

Great for inducing calmness and sleep. Couldn't we all use a little calmness and sleep. We know a few parents that bought 2 to have one in their own rooms.

Talking Photo Album

Easy-to-use speech output device that holds standard 4″ x 6″ photos. The Talking Photo Album includes a total of 24 pages, each with a individual message capacity of 10 seconds. Insert photos or picture/text cards into the transparent sleeves and record corresponding messages. User squeezes Play button to activate speech.

Great for talking stories, communication books, step-by-step instructions, memory books and personal information.
Two AAA batteries (included).

Fridge DJ Magnetic Learning Piano by Leap Frog

Turn up the learning with a brilliant show of lights and music that encourages children to explore numbers, letters and counting. As the numbers and letters light up, the upbeat music inspires physical movement, too! Very easy to manipulate and fun in the kitchen.

Alphabet Spin and Sing by Leap Frog

This toy plays music and teaches the alphabet with the slightest touch of swipe of the hand. One of our daughter’s favorites.

Diaper Doublers!

Good Day RettGirls!

This week at RettGirl.org we are featuring the Tranquility TopLiner Mini Booster Pad Small Diaper Inserts or Diaper Doublers as we call them. These Diaper Doublers can be found in our Bath/Toileting category under Product Reviews. Online these are reffered to as booster inserts,diaper doublers and diaper inserts. The brand we are reviewing here is the Tranquility.

We know that incontinence is something most if not all of our girls deal with and we wanted to share this wonderful way to make diapering a little more efficient.

We have all tried the Maxi Pad, Overnight Maxi's and smaller diapers as inserts for our girls...especially at night. I know at least one Mom who has spent big bucks trying to find something that will absorb more without bunching up, coming apart or sticking to her daughter. Not a fun thing in the AM.

I had another RettMom...such experts.. send me the link to the Diaper Doublers we have on RettGirl.org. I was skeptical so I went to the lab. The lab being the living room floor, 2 diapers a Maxi pad, a Diaper Doubler and a couple of cups of water.

I slowly poured 6 oz of warm water over the length of each pad and diaper and waited about a minute. The diaper with the Maxi Pad was squishy and overflowing to the touch. The Tranquility pad produced no liquid and had slightly expanded. When I removed each pad the Maxi ripped and fell apart. The Tranquility pad came right up and the diaper underneath was dry. Yes dry. So I put the pad back in the diaper and poured 4 more ounces of water into it. After a minute or so I lifted the Doubler up and saw that it did truly absorb the first 8 oz or so and when full the remainder went into the diaper. I again removed the pad and there was still no tearing or coming apart. The search was over! This was the small pad. They come in 3 absorbency levels! Woo hoo!

My daughter has a pack they use at school and they put one in after her lunchtime feeding..to spare her that embarrassment to overflowing on the playground. Which did happen once. My girls was inconsolable and I had to go pick her up. It hasn't happened since.

I use them with her at night and I have to say that if we have a leak it's because the diaper itself was not put on right or she had had a little extra Miralax on her belly ;)

http://rettgirl.org/2009/09/diaper-doubler/

Happy Diapering!

Terri V-For RettGirl

HeadMouse® Extreme

Good Day RettGirls!

This week at RettGirl.org we are featuring the HeadMouse® Extreme. This awesome little device can be found under Communication in our Product Reviews.

Over the last few years we have heard some amazing stories about this communication device.

Since we all know that our girls communicate best through eye gaze the HeadMouse® Extreme is a wonderful tool designed for just that.

A few years ago I had a mother tell me that she brought her then 9 year old daughter into school and her Speech Pathologist was waiting. He had a surprise for her daughter. At the end of his index finger was a dot about the size of a paper punch out. She watched in confusion as he sat her girl down and stuck the little red dot right between her daughters eyes and sat her in front of the computer.

Within minutes her daughter was listening to a story and she watched as she followed the words on the page. I can remember her saying that her legs almost went out from underneath her when she heard the computer say," Turn the page" when it got to the end of the page in the story. The computer was reacting to her girl, not giving a command.

I had another Mom tell me that she tried the device at a conference that another Rettmom was showing off. They put the little dot between her girls eyes and went to colors. They asked the then 3 year old what her favorite color was and she immediately picked pink! Amazing!

How does it work?

HeadMouse® Extreme replaces the standard computer mouse for people who cannot use or have limited use of their hands when controlling a computer or augmentative communication device. The HeadMouse translates natural movements of a user's head into directly proportional movements of the computer mouse pointer. The HeadMouse has a wireless optical sensor which tracks a tiny disposable target that is conveniently placed on the users forehead, glasses, hat, etc. It works just like a computer mouse, with the mouse pointer being moved by the motion of the users head.

The HeadMouse will track the user's head with the user located in any comfortable viewing position relative to the computer display. Resolution of the HeadMouse is precise to allow a user to control the mouse pointer down to the minimum, pixel perfect, resolution of the computer display. This precision allows a user to perform such tasks as drawing, gaming, graphics work and Computer Aided Design (CAD).

HeadMouse Extreme connects to the computer or augmentative communication device through a USB port and operates using standard mouse drivers. No special software required. The HeadMouse is powered by the host device, over the USB connection. The integrated electronic tilt sensor automatically adapts to even the most unusual mounting requirements.

Selections can be performed using a variety of adaptive switches, including Origin Instruments Sip/Puff Switch and mouse button software, such as Dragger™. Using Dragger mouse clicks are performed by positioning the pointer and dwelling for a selectable period of time. HeadMouse Extreme also comes with a built-in infrared receiver that provides optional wireless connections for adaptive switches. Beam™ is available for wireless transfer of adaptive switch inputs from a wheelchair to the integrated receiver.

At $ 995.00 we believe this is an incredible device for home and school. Especially considering that most eye gaze equipment runs anywhere from $5,000 to over $20,000.

http://rettgirl.org/2010/08/headmouse-extreme/

Have an incredible week!

Terri V-For RettGirl

Hip Helpers®

Good Day RettGirls!

This week, at RettGirl.org we are featuring Hip Helpers® Support Shorts. We have these incredible little shorts in our Product Reviews under Positioning.

We discovered these during early intervention with our daughter. They were recommended even before her diagnosis when we were going through that phase whem the only thing the doctors could tell us was that she was 'floppy' or had 'low tone'

We knew she had always slept like a frog when on her stomach and was always completely splayed when on her back. We suspected nothing and called her our little froggy.

When she walked she looked like a duck with her feet always pointed out because she was so hyper extensive. The docs could bend her further than I had ever seen legs go.

We ordered 2 pairs of the shorts. One for while she was asleep and one during the day. The shorts hold her hips in proper position and keep her from splaying. Her walking improved because her balance improved. It almost appeared as though she had previously been trying to walk with her hips out of socket.

There are 5 standard sizes and they will also make custom sizes for you. They have a great size chart and very cute colors to choose from. They are advertised for babies and toddlers in early intervention programs but our daughter is 6 and 44 pounds and still fits in her size C.

For your girls who are hyper extensive in their legs and hips I would highly recommend these. A big plus is that they are super affordable in comparison to everything we have to buy on the Adaptive market at $15-$22 a pair!

http://rettgirl.org/2009/11/hip-helpers/

Good luck! Have a great week!

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

KidWalk Gait Trainer/Stander

Good Day RettGirls!

This week, at RettGirl.org we are featuring the Kidwalk Gait Mobility System. You can find this exceptional product in our Mobility Category under Product Reviews.

A few weeks ago My RettGirl and I were fortunate enough to see this product in action at a State Horse show. I was stunned to see just how incredible this Gait trainer/stander/walker really is. We watched in awe as a very small child maneuvered it as a walker over grass and rocks and how it held them in place when they got tired. We just had to go up and ask the parents about it.

The KidWalk can be used as a walker as you can see above but can also be locked into place and used as a stander. With just one add on it can be used as a gait trainer which we were told was really helpful before this particular child was able to move on their own. The mother demonstrated how they use in in therapy by just giving a little nudge on the handle bars at the top to signal "go" for the child and off they went. We were so impressed! Made me really wish I had known about this before we ordered our girls system that sits in a corner of her therapy room because it is just too difficult for her to operate.

KidWalk is an innovative pediatric dynamic mobility system that affords freedom of exploration while safely supporting the user. Unlike a gait trainer, the KidWalk has a large mid-wheel configuration that encourages upper-body rotation over the pelvis while allowing upper-extremity freedom. The dynamic action allows lateral weight shift and simulates a natural gait pattern. KidWalk positioning options provide various levels of support to accommodate maximum freedom in upper extremity movement.

The various wheel configuration and small turning radius allows exceptional maneuverability. This is key in affording a child access not only to their home and school environments, but, encourages exploration that has been proven to enhance their cognitive and social development.

Tool-free adjustability is quick exact and easy making KidWalk ideal for schools and institutions. Easy to use, one hand height adjustment mechanism allows quick positive adjustments while the child is in the unit. All positioning options swing away to allow easy placement and positioning of user.

Allows therapeutic adjustment for use in ambulation and therapy oriented activities. Seat and support system move with the client allowing the natural movement of the body while reducing weight and fatigue.

Awesome features of the KidWalk!

•Mag Wheels
•Padded Seat
•Anti Tip Supports
•Lower Back Pad
•Tool Free Adjustment
•Lighted Casters
•Adjustable Axle Positioning
•Two Piece Transport Frame
•Quick Release Axles
•Dynamic Weight Relief

You can check out everything you need to know about this incredible mobility system by clicking below

http://rettgirl.org/2009/08/kidwalk-gait-trainer/

Have a wonderful week everyone!

Terri V-For RettGirl

Bear Hug Vest

Good Day RettGirls!

Let's talk Sensory!

This week we want to tell you about the Bear Hug Vest we have listed at RettGirl.org in our Sensory Category.

A few months ago I had my daughter in outside PT at a local children's hospital. We were having a hard time with getting her to do anything outside of home. At home she will wobble walk and participate in Pt type activities but outside she just seemed to want to hand mouth and tremor.
After weeks of frustration from not getting my girl to walk and watching her stop and tremor in doorways or pattern changes in the floor her PT had some sort of epiphany.

Within seconds of standing her up and putting the Bear Hug vest on my daughter she was all but running through the room. We sat there in awe as we didn't have to hold her hand and she just cruised from room to room,without the tremor pause and complete freeze and lock of her whole body at thresholds and doorways.

I ordered the vest that night. We use it at home when she is up cruising and dancing in front of the TV. We use it on walks around the neighborhood. I have found I am less exhausted after an outside walk with her because I am just holding her hand and not wrestling with her entire body to keep her from falling the whole time.

My daughter suffers from extremely low body awareness experiences vertigo because of it. A no center of gravity type experience for her. A terrible thing for someone who wants to be moving constantly.

We have also used the vest on days that she is doing her lean while sitting. She has scoliosis and always wants to lean to the right when sitting. We like to use the Bear Hug because it keeps her upright without the rigidity of other types of vests.

I have included a demonstration of the vest with my own RettGirl taken just last night. I think you can see the difference immediately in her self confidence.

http://rettgirl.org/2009/11/bear-hug-vest/
Enjoy!


Terri V-for RettGirl.org

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

Special Tomato EIO Pushchair

Happy Monday once again RettGirls!

Today we are talking mobility! We want to introduce you to the Special Tomato EIO Pushchair. An all purpose chair that will support your girl for up to 90 lbs!

We know many of you are looking for an all purpose stroller that is versatile and comfortable. You can find this Pushchair located under our Mobility category at RettGirl.org

The Special Tomato® EIO Push Chair is the best of both worlds…a special needs stroller that provides mild to moderate positioning support AND a light-weight stroller that provides all of the bells and whistles that make it easier for the caregiver on the go!

Standard features include:
•Padded seat and back laterals
•Padded head pillow
•Canopy
•Recline available through angle adjustable back rest (25º ~ 75º from full upright)

At $449.95 you will find that this chair is almost half the price of other chairs without all the standard features.

We take this chair with us everywhere. It is awesome for siblings sporting events with it's all terrain wheels. We take it to church and family events as it easily reclines for feedings and diaper changes. I personally hear, "Where did you get that chair?" at every Rett Event we attend.

A big plus is that you can use the Special Tomato liners and sitters with this chair for extra support in the classroom and for long days on the go!

Check out this awesome product and many many more under our Product Reviews and Mobility Categories at RettGirl.org!

Terri V- For RettGirl

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

Arm Braces

Happy August everyone,

Here at Rettgirl we are working overtime to get the best ideas for home and school out to you as the back to school season is upon us!
We wanted to talk to you this week about the Arm Braces listed in our Product Review Section under Positioning. We are sure many of you know about them but for those of you who don't they can be an incredible tool.
The lady who makes these braces is the grandmother of a Rettgirl and many girls are using them all over the country.
Kelly says,"These work great with our daughter, although she is NOT a hand mouther. We use them to keep her left arm stable/still so that she has better control of her right arm – for using switches at home and at school."
This bloggers daughter is an extreme hand mouther and arm braces help her function better at home and at school. We use them at home for computer time and when her little hands just need a break. She is still able to use her hands. At school it keeps her on task. She can't hit a button or switch if both hands are wringing and or in her mouth.
Uses from the manufacturer are described as:

Prevents self injury or
involuntary self abuse
behavior

Facilitates medical treatment
by restricting elbow
movement to prevent
scratching of the face or eyes

Helps to keep hands away
from mouth and face

Promotes intentional hand
use by disrupting involuntary
hand movements



If you have been hesitant about trying them we would urge you to give them a shot. They really are worth it!



Rettgirl

Communication!

Good day Rettgirl families!
With school starting soon we wanted to tell you about something exciting we have on Rettgirl.org!
In our Product Review section of Rettgirl.org we have a Communication tab with wonderful ways parents are communicating with their girls.
We want to tell you about the Step by Step Communicator. This is a wonderful way to send messages back and forth between school and home. Instead of having to write notes to and from the teacher, your daughter can tell you herself by manipulating the button.

We have one Rettmom who reports that when her daughter stares at the button it is pressed for her. Her excitement when she gets to participate in circle time sends her into squealing giggles. When she returns home she can tell her family about her day. The best part of the day many report.
One Mom says, "We send this back and forth each day to preschool with messages recorded on it to promote conversation skills both at home and at school. It is very easy to use, almost no training needed for the teachers/aides to use this item. I highly recommend it!"

This button has 3 levels and can hold up to 75 messages. You can record outgoing on level 1. Incoming on level 2. 3 can be used any way you like. We know one family that uses this level for the alphabet,sing alongs,and turn taking. Mix it up any way you like.
We have included a video of one of our very own girls using the device at 5 years old after a day at preschool.
Enjoy!

The heat is on! Cooling Neck Wraps

COOLING NECK WRAPS!

Most of our girls have trouble with tempature regulation. This Neck wrap is amazing and is the perfect must have for summer! By simply placing the neck wrap in clean water for approximately 5 minutes and allowing the crystals to expand, it produces an evaporative cooling system for the user when placed around the neck.
The Neck Buddy Body Cooling Neck Wrap lowers the body temperature by cooling the carotid arteries in the neck. The material may become warm against the skin but by simply rotating the wrap, the cooling effect is rejuvenated immediately! It will stay cold ALL day long! Great for the overheated stressed out parent too!
We have found this item most beneficial for those summer days filled with outdoor therapies such as bike riding and Hippotherapy.
Families report taking a few on camping trips and picnics to beat the heat for the overheated kiddo.
You can find a link to this wonderful product among many other great tips via the Other tab under Product Reviews.
Do you have a great summer item you are using with your child? We'd love to hear it!

Stay Cool!

Rettgirl

Welcome Rett Girls!

We at Rettgirl.org want to welcome you to our blog. Here we will highlight the latest happenings on our website made especially for Rett Families by Rett Families.

Everything at Rettgirl is hopefully something that will help your little girl fight a stronger fight against Rett Syndrome. Check out our product reviews, tips from other families, and even our own little Rett-"bay" where you can find/sell/donate used items.

We heard back from many of you who wanted more info so here we are. We plan on highlighting all things on Rettgirl to give a little more insight on each tip or referral.

We want to make sure everyone knows there is a place to come for advice and tips on pretty much everything that affects us. Clothes, medicines, toys, equipment, supplements, doctors and so so much more!

We all know that the best advice we get in this world is by other loving families who have been there.

Please remember Rettgirl is only a referral site. Proceed with caution before purchasing an item, trying a new therapy or any of the tips recommended by our users on this site. Girl Power 2 Cure, Inc. is not liable for unsatisfactory or harmful outcomes. Especially in referrals involving diet, supplements or therapy, please check with your doctor before proceeding.

We look forward to hearing from you.