Monday, December 27, 2010

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 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:


Rett Syndrome Research Trust

Newsletter: RTT Watch


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


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


LETTER FROM RJ COOPER – Pioneer in Assistive Technology

Back to School Tips From Parents:

Back To School Strategies for
Children Who have Rett Syndrome

How to Adapt with PVC

PVC Assistive Tech


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

Monday, December 20, 2010

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

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:

Happy Holidays from All of us at RettGirl and!

Monday, December 13, 2010


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!

Good Luck!

TerriV-For RettGirl!

Monday, December 6, 2010

Hatchback Shoes!

Good Day RettGirls!

This weeks featured product at is'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!

Good luck

Terri V-For RettGirl