April Fundraisers!

Hold onto your hats! April is Autism Awareness Month. Since Rett is on the autism spectrum, we get another month dedicated to our girls! (October is Rett Syndrome awareness month).

At RettGirl.org anytime is the right time to raise funds for OUR cure!

Want to know what's going on? We have a list you can check and add to anytime for ongoing or upcoming fundraisers in your area, as well as events, conferences, Rettaways and more!

If you are raising money in any way for Rett Syndrome for any organization, get the info listed on our site.

Here are some events we have listed for April:

Dress Up 2 Cure (GP2C) Throughout the month of April

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April 2, 2011
6:30-10:30 pm Red Carpet Party for the 2011 Kids’ Choice Awards (GP2C)
in honor of Emma Shubert
Hope Community Church Fleetwood, PA
contact: Kelly Shubert

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April 14, 2011
Rockin’ For Rett (GP2C)
5:30-9:30 pm
in honor of Laura Walton
Catalina Foothills High School Auditorium, Tucson, AZ

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April 16, 2011
Riverside Rett Lunch and Auction (IRSF)
Riverside, CA

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April 16, 2011
Rett Spring Fling (IRSF)
Salt Lake City, UT

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April 23, 2011
Golf For A Cure (GP2C)
in honor of Julinan Brooks
Indian Creek Golf Club
1650 W. Frankford Carrollton, TX



Once again, April is autism awareness month - join in SOMETHING SOMEWHERE to make people aware of Rett Syndrome in honor of a child you love!

NEED AN IDEA?

Know an event not listed? Send us the info so we can add it in.

Like what you see at RettGirl.org? Help keep it going with a small donation.

Have a great month and Good Luck to all of you! Terri V~ For RettGirl

AMC Sensory Friendly Films

Happy Spring RettGirls!

This week we want to tell you about an exciting feature AMC Theatres has for the Special Needs Community. It's called Sensory Friendly Films and you can find the link under...drum roll....... Sensory at RettGirl.org!

These kid-friendly movies take place once a month, on a Saturday at 10:00 am in most major markets.

Before I found these I remember thinking how unfair it was that my daughter couldn't even go see a movie, especially when I would see a preview for something she might like.

The first time I took her I was so nervous I almost didn't get out of the car. Once we got in the theatre and sat down I was much more comfortable, especially once the movie started. There were parents rolling fussy ones up and down the isles. The lights dim but don't go completely out. The best part is the sound doesn't blare your head straight off or scare your girl out of her wits.

I witnessed a child have a seizure and nobody freaked out. Another child had to have suction through a trach and still nothing more than a sideways glance. There were a couple who ran around like banshees but it was OK because I was there for my girl and she was enjoying herself! She watched the movies, the other kids and had a ball squealing while kicking my knees into mush. No one hushed us or gave us that "look!"

Now if every market would think of disabled children ... what a wonderful world this would be. We'll get there.

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From the company website:

The program provides a special opportunity for families to enjoy their favorite films in a safe and accepting environment. The auditoriums dedicated to the program have their lights up, the sound turned down and audience members are invited to get up and dance, walk, shout or sing!

The idea for the program began with a request from a parent with an autistic child for a special screening at AMC Columbia Mall 14 in Columbia, MD. More than 300 children and parents attended the first screening.

AMC is thrilled to now offer the program at many locations nationwide — please click here for a complete list of participating theatres. As a leading theatrical exhibition company, we are so proud to be making a difference in the estimated 1.5 million Americans living with an autism spectrum disorder by offering families a chance to see a movie together — often for the very first time.

The films are once a month at 10 am on a Saturday.

Have fun. Let's go to the movies!

http://rettgirl.org/2011/03/amc-sensory-friendly-films/

Terri V~ For RettGirl

MORGAN'S WONDERLAND

Good Day RettGirls!

This week we are so very excited about bringing you something new. For the first time at RettGirl.org we have a guest blogger! Her name is Brandi Mounce and she is the mother of Andrew Mounce, one of the special and amazing little boys with Rett Syndrome!

Brandi is also the mother of three more incredible little girls, and we are honored that she has taken the time to be our guest and let us know her take on Morgan's Wonderland -- an ultra-accessible family fun park in her neck of the woods... San Antonio, Texas!

Instead of just browsing the site we wanted a first-hand account of what it was really like there for a family living with Rett Syndrome.

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Morgan's Wonderland is a favorite place for our family and many others around Texas. Living in San Antonio we have several amusement parks to visit: Sea World, Six Flags and now Morgan's Wonderland.

It was designed and built by Gordon Hartman, a local businessman, who dedicated the park to his daughter Morgan, a teenager with an intellectual disability. The park is an inclusive environment that was designed with cognitive and physically disabled individuals in mind. In the park there are wheelchair accessible swings, wheelchair accessible rides on a carousel as well as a train that wraps around a pond.

The sensory village provides interactive areas such as a store front, darkened room with sounds and lights, and a repair shop that allows you to create sounds by touching power tools. Most of the staff are volunteers and many stand on or near the playground to help individuals down slides or climb on the playground.

There is also a water station area that is interactive and an outdoor theatre used during the summer months. This park truly is the first of its kind and the only park designed to meet the needs of people with disabilities.

A limited number of people are allowed in the park on a daily basis so reservations are recommended. At first, I was annoyed about having to make a reservation but after visiting I realize it keeps things from becoming overcrowded, and keeps my kiddos from being overstimulated by all the noise.

Individuals with disabilities get in free and are allowed one individual to accompany them at a reduced entrance fee. Pretty cool, right? I will never forget our first visit to the park and watching a large group of disabled adults from a group home play on the playground. Their smiles said it all. Finally a park for EVERYONE!

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You can find Morgan's Wonderland under Travel/Camps and at the link below.

http://rettgirl.org/2011/03/morgans-wonderland/

For more information on our guest blogger and her family click on here. If you would like to be a guest blogger, email us!

Have a great week everyone!

Umbrella Holder!

Good Day RettGirls!

Spring is almost here and a wonderful RettMom from California has recommended this nifty Umbrella Holder for use with all wheelchairs and strollers! You can find this at RettGirl.org in our Product Reviews under Travel/Camps and under our Tips!

Spring means rain for most of us in the country and we cannot wait to try this one out! I know it rains almost daily here from April to June and pushing a chair while holding an umbrella can be a task for sure! This Umbrella holder gives you a hand back! I cant tell you how many times my neighbors must have shaken their heads at me while they watched me trying to push my daughter with one arm over my head to the bus stop. I can think of several times where Ive tried to find a place to push it in by the handrails only to end up with a wire in my head!

How many times have you wished you would of thought of an umbrella when out in the hot sun when your girl needed some shade? No one grabs an umbrella when it's not raining. With this it will already be attached to her chair. Woo hoo! Loving it!

*cautionary note: keep hold of the wheelchair at all times when the umbrella is up in case the wind picks up!

From the company website:

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The Paraplis Umbrella Holder for Wheelchair provides users with the ability to have an umbrella on them at all times, without the hassle of carrying it around. By simply attaching the Paraplis to any wheelchair, rollator, walker or even stroller, users are able to access their umbrella whenever needed.
Equipped with a two positioning buttons, the umbrella can be easily repositioned at any moment; when not in use, the Paraplis simply folds down the umbrella so that it is out of the way. The Paraplis can be used with virtually any type of umbrella and contains a rubber strip to avoid damage to the contact surface while also preventing unwanted movements of the umbrella. Purchase your Paraplis Umbrella Holder for Wheelchair today from ActiveForever!

Paraplis Umbrella Holder for Wheelchair Features:

Holds umbrellas, canes and other accessories
Great for wheelchairs, rollators, walkers and strollers
Quick and easy to install
Easily positioned at any angle
Umbrella does not need to be removed when not in use
Contains rubber strips to stabilize and prevent scratched surfaces
Can be used on any shape of bar (cylindrical, oval, etc)

Happy Travels RettGirls and families!

http://rettgirl.org/2011/03/paraplis-umbrella-holder-for-wheelchair/

Terri V~ For RettGirl

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