Rett Girl Store!

Do you know we have our very own store at RettGirl.org?

We have lots of amazing Rett parents, grandparents, and other Rett family members who sell great products that we would like to share with you!

Rachel Dalton – Homemade Bracelets (all proceeds support GP2C)

Aaron Bax - GP2C – Cure Rett Bracelets (all proceeds support GP2C)

Linda McInnis - Special Creations – weighted blankets and lap pads

Nicole Mast – Little M’s Accessories – hairbands, flower clips and hat for girls

Jan Erickson – Armbraces.com – arm braces and more!

Jeanna King – Popem.org – cake pops

Ronna Reid – Special Bows For Special Girls – hair clips

Kristin Hileman – Thirty One – amazing bags and other organizational items

Marla Black – “All About Angels” - pendant necklaces

We have a place to list Free Stuff or things you'd like to give away to the community.

We have a Needed section where you can list things you are looking for. We'd love this to become a place where we can trade with each other.

We have a link to the GP2C store where you can find all kinds of awareness goodies all while raising money for research.

Hope to see you there soon!

Happy Shopping!

Terri V~For RettGirl

iPad for Christmas!

We know many of you are considering or already have Apple's iPad under the tree for your RettGirl. We want you to know that we are here to help!

On our Homepage you can find a link directly to our iPad page. We are constantly adding new accessories and info on apps to help you along the way. And if you have something to share with us, please do!

We are hearing amazing things from parents about Apple’s iPad. For girls with retained hand function this can be used as an amazing tool for communicating, educating and entertaining.

It is an excellent tool to train and prepare girls for more sophisticated communication device via this easy, simple-to-use choice-making platform.

Parents of girls with little to no hand function still say the iPad and many of the apps provide endless entertainment for their girls. Definitely worth checking out or putting on that wish list we all have. The iPad and Apple have apps that play music, movies, read books and much more.

A few suggested iPad Apps for girls with Rett Syndrome (more listed on RettGirl.org!)

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Easy: Requiring just a touch anywhere on the screen to activate

Pocket Fish Pond – FREE
learn more
see it in action

Uncolor- $.99

The screen starts out black. When the screen is touched, that part of the screen begins to show the image underneath. The more she touches, the more of the image is uncolored.
learn more

Talking Tom – FREE with optional upgrade

Hilarious and perfect to interact with other children. Whatever you say into the mic, the cat repeats. You can tickle him and whack him and even knock him over. You can record all of the words actions to create mini movies. It is fun to have other kids speak messages into it for your daughter to hear.
learn more

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EDUCATIONAL:

ABA Receptive Identification – FFC Combined-$.99

- Clear, Colorful, Concrete Images
- Benefits to both Visual and Auditory Learners
- Classical Music with Visual Reinforcement
- Sound can be turned “on” or “off”
- Concisely Pronounced Audio

Check out all of kindergarten.com’s ABA apps for endless fun and learning

learn more

In My Dreams- $.99
Have fun with reading, matching, and sign language. “In My Dreams” uses animation and repetition to promote literacy. Each page has the same sentence structure and reinforces understanding of nouns, verbs and prepositions. “In My Dreams” is an instructional app designed with illustrations that provide language cues. Personalize the app for your child, student or client by adding their photo!
learn more

Choiceboard Maker-Creator-FREE

ChoiceBoard Maker is the perfect app for creating customizable choice boards for the unique needs of individuals with communication challenges. It reinforces correct choice by expanding the selected image as well as playing the customized auditory rewards.
It is an excellent tool to train and prepare users for more sophisticated communication device via this easy, simple-to-use choice-making platform. The possibilities are as much as your creativity can go.

Features include:

•Large buttons, and black/white contrast to facilitate visual attention
•Clean board design to minimize visual distraction
•Space between choice buttons to avoid inadvertent hits
•Customizable to 2,3,4 or 6 choices

learn more

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COMMUNICATION:

ANSWERS YES/NO HD – $3.99
Simple large YES and NO buttons for simple choice making. Answers: YesNo HD Features:

- Large buttons with ample selectable borders to assist with activation

- 5 Yes-No voices: man, woman, cartoon, boy, and girl

- Custom buttons with user defined color, text, audio, and pictures

- 5 lesson plans, each consisting of 6 pages of custom button pairs

- Enhanced navigation options

- Visual cue of selected buttons for the hearing impaired

- Multi-language support

learn more

SoundingBoard by AbleNet – $49.99

Communication Board program — comes with images or you can upload your own!
learn more

TapSpeak Sequence – $29.99
Acts like a step-switch sequencer/talker. With the added benefits of being able to access/create unlimited sequences that are saved, plus using any photo you want — OR connect it with a Boardmaker set of images.
learn more

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OTHER:

Picture Pusher- $.99
very simple, just pushing images into a “box”
learn more

Dr. Suess ABC – $3.99

A must have! Fun and easy. Page turn with a swipe of the hand. There are about 10 Dr. Suess books available. One Fish, Two Fish is good too! You can set it to read the book page by page with activation, or just to read through. When the child touches different images, the word for the image appears and speaks the word.
learn more

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BOOKS:

Mee Genius-A collection of free and purchasable books that highlight words as the story is read to your child. A favorite. Choose “read to me” and sit back and watch her follow the words.

learn more

Story Boy-Auto read books and fun apps for all girls. Pages change automatically or with a swipe. Prices vary and are affordable with many free.

learn more

Impossibly Easy Pumpkin Pie! Gluten Free

Happy Holiday's RettGirls!

This week I thought I would share my Impossibly Easy Pumpkin Pie recipe with you. Actually it was my Grandma's..or I thought it was. Turn's out it's from good ole Betty Crocker. Shhh. My family thinks it's mine.

You can find this recipe, among others, at RettGirl.org under Diet/Nutrition then click on Recipes then Gluten Free!

The best thing about this recipe is it is a no crust recipe. I always pick mine away anyway. You can make it the regular way or gluten free by changing up which type of Bisquick you use, either regular or gluten free. Both call for half a cup. I have never had a complaint, empty plate or a person who hasn't asked me for the recipe. We are on our 4Th pie since Thanksgiving here.

Enjoy!

Impossibly Easy Pumpkin Pie

1 cup canned pumpkin (not pumpkin pie mix) 1/2 cup Gluten Free Bisquick® mix 1/2 cup sugar 1 cup evaporated milk 1 tablespoon butter or margarine, softened 1 1/2 teaspoons pumpkin pie spice 1 teaspoon vanilla 2 eggs Whipped topping, if desired 1.Heat oven to 350ºF. Grease 9-inch pie plate. 2.Stir all ingredients except whipped topping until blended. Pour into pie plate. 3.Bake 45 to 55 minutes or until knife inserted in center comes out clean. Check first at 45. Cool 30 minutes. Refrigerate about 3 hours or until chilled. Serve with whipped topping. Store covered in refrigerator.

Dairy free substitutions:
each makes 1 cup
option 1:
3 cups vanilla rice milk
1/2 sugar
(simmer and reduce to 1 cup)

option 2:
3/4 cup silken tofu
1/4 cup honey
blend together in a blender

Terri V~For RettGirl

Shop GP2C!

Good Day RettGirls!

I know in this season of giving many of us are stuck on things to get our girls, their caregivers, siblings and more. We wanted to let those of you who were not aware know about our store at GirlPower2Cure.

How fantastic would it be to get that loved one something they would love, raise awareness and funds for Rett Syndrome all in one place?

Our parent site has it and we'd love you to go take a look!

Here you will find
t-shirt - $15

* note sizes in the "leave a note to seller" box
Available sizes: Youth XS, S, M or Adult (Women's cut) S, M, L and XL

car decal (vinyl removeable) - 3 for $5

Plant a flower on your car!

cinch sac (specify purple or green) -
$5 (+ $2/shipping)

The Purple Card -
100/$29.95 | 250/$39.95 | 500/$49.95 | 1000/$59.95

Read more about our awareness card "The Purple Card" and how families are using them!

cell phone/iPhone/iPod skin - $12.99

NOTE: After we receive your order, we'll be in touch to get your exact phone information.

Also, if you are interested in a skin for a Kindle, iPad, laptop skin, or anything else email us!

music cd - $11.99 (through CDBaby.com)

Download this awesome CD that was made just for girls!

Must order through CDBaby.com

[download]

DOWNLOAD THE SONG

"I'll Fly" - $0.99

by Canadian Artist

Dana Marie

[proceeds benefit GP2C]

http://rettgirl.org/store/for-sale/from-girl-power-2-cure/

Terri~For RettGirl

Some "Tips" for the Holidays

With December upon us, and holiday decorations sprouting up all over, we are all gearing up for a special season. Yet, 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? I think I would cry too.

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.

Make this holiday a real team effort. Start talking with you family now about ways to help.

And be sure to check out our Holiday Gift Idea List! Happy Holidays everyone!!! I hope you each find that magical moment that makes your heart skip a beat and brings a smile to your face.

- Ingrid

RettGirl. We've Got that!

Good Day RettGirls!

Over the last week or so while viewing other Rett Syndrome Support Boards or while on Facebook I kept noticing a trend. Is it possible people really don't know about RettGirl?

Over and over I watched as people asked advice on what to get their daughter for the holiday. We've got that! Find a wonderful list and links to lists past by clicking on our Holiday Gift Ideas button on our Homepage.

Just moved to a major metropolitan area and are at a loss about where to find a Doctor or Clinic near you? Chances are we have that. Just click on Doctors/Therapists at the top of our Homepage.

It doesn't stop there - we have one click access to EVERYTHING Rett. Don't see what you need? Send us your question or info you would like to see! We want to keep everything organized and searchable so more families can learn from our Rett community.

We have tips from parents just like you.

We have product reviews on:

Feeding

Communication

Clothing/Shoes

Sensory

Positioning

Mobility

Media

Sleep

Toys

Travel/Camps

The list goes on and on.

Do you need ideas for apps for an iPAD? We have a button just for that where you will find
apps, accessories and more.

Would you like to see videos of our girls thriving and achieving? We have that!

What about a place just for school stuff where everything you need is all in one place?

Websites

Care Notes

Example IEP's?

From Constipation to Communication, we have all that and then some at RettGirl.org!

Come visit us today and share with your friends, coworkers, and staff!

Have a great week everyone!

Terri V~For RettGirl

Gluten Free Goddess

Good Day RettGirls!

This week at RettGirl.org we are featuring this incredible blog called Gluten Free Goddess! We have this website listed under Gluten Free in our Diet/Nutrition Category!

Last year I struggled with including my daughter in our Thanksgiving Meal because we had just found out she was allergic to wheat. At the time I had no idea how to cook or bake without wheat/gluten. Especially for a meal like Thanksgiving Dinner. Rolls, Pie, Noodles. What about Abby? Would we just sit and eat in front of her?

Gluten Free Goddess is THE place to go for everything Gluten-Free. This week she is featuring Gluten- Free Thanksgiving Recipes and Tips. We aren't talking a pie and roll recipe either. She has absolutely everything.

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Tips from the Gluten-Free Goddess:

Key Tips for a Safe and Delicious
Gluten-Free Dairy-Free Holiday Season

If you're new to gluten-free living here's a Gluten-Free Diet Cheat Sheet to print out and keep handy. Because gluten is devious. Label reading is a must.

Marinades and soy sauce, broth and bouillon may use wheat or barley in flavors and seasonings. Although I urge you to check your turkey for gluten-free status, most I've seen are safe- if you avoid the seasoning or gravy packet.

Bottom line?

Know your bird. Know your source. And know your ingredients.

For thickening gravy, whisk in a tablespoon or two of sweet rice flour or an arrowroot starch slurry. Potato flour is another choice- but be careful you don't add too much and end up with gravy you have to slice and serve.

For a non-dairy sub in pumpkin, squash and sweet potato recipes try using coconut milk- it's creamy and delicious (full fat tastes best). If you can't do coconut milk, soy milk works beautifully. Or try one of the neutral tasting nut-based milks, or even hemp milk (though hemp milk is an acquired taste and may be too grassy for the uninitiated). Rice milk is generally too thin.

Another tasty non-dairy vegan choice is orange juice or apple cider. I cook carrots or cubes of winter squash with a splash of orange juice or apple cider for a lovely flavor boost. Then I drizzle a touch of pure maple syrup.

For creamy mashed potatoes that are dairy-free I use a light and fruity extra virgin olive oil instead of butter. I add a little of my favorite vegan butter spread for flavor (I'm using Earth Balance lately). If I want to add creaminess, I whip in some warm non-dairy milk- coconut, soy, and nut milks all work. A light gluten-free broth works, too.

Read more: http://glutenfreegoddess.blogspot.com/2008/11/thanksgiving-recipes-tips-for-gluten.html#ixzz1dmnYxW3G

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Wow, so many simple things you can do. Who would of thought? Incredible tips! Want more? How about some Thanksgiving recipes?

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Thanksgiving Sides

Acorn Squash with Attitude
(green chiles)
Calabasitas (zucchini, corn and onions with green chiles)
Cider Roasted Vegetables
Cinnamon Applesauce
Colesalw with Peanut Dressing
Cornbread Stuffing with Curried Apples and Cranberries
Crunchy Gluten-Free Bread Crumbs for Topping

Dijon Roasted Vegetables
Karina's Kicked Up Colcannon
Maple Roasted Acorn Squash
Pinon Rice Bake with Artichokes, Corn and Goat Cheese
Pomegranate Glazed Green Beans and Portobellos

Quinoa Mushroom Pilaf
Quinoa Salad with Baby Spinach, Apples or Pears in Maple Vinaigrette
Quinoa with Butternut Squash + Cranberries
Roasted Winter Vegetable Ragout with Shaved Parmesan
Ruby Applesauce with Cranberries

Santa Fe Brown Rice Bake
Two Potato Salad with Sweet Potatoes
Zucchini Gratin

How about a few desserts?

Sweets

Apple Crisp- new
Apple + Pear Crisp
Apple Cake with Cranberries
Coconut Flour Apple Cake
Cranberry Peach Crumble
Maple Frosted Pumpkin Cake

Pie Crust Recipes
Pumpkin Bars
Pumpkin Bundt Cake
Pumpkin Chocolate Chip Cookies

Pumpkin Cupcakes with Maple Cream Icing
Pumpkin Pie- easy
Pumpkin Praline Pie with Coconut-Pecan Crust
Sweet Potato Pie

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What we have listed here doesn't even touch on the resources, tips, recipes you can find at Gluten-Free Goddess. Many Many Dairy-Free Recipes too!

We hope you enjoy! Have a Healthy and Happy Thanksgiving!

http://rettgirl.org/2011/11/gluten-free-goddess/

Terri V~For RettGirl

2011 Holiday Gift Ideas!

Good Day RettGirls!

It's here. What you all have been waiting for. RettGirl.org's 2011 Holiday Gift Ideas!

We have had many of you ask us about this year's list, and we are so excited about many things. I, myself, am having to hold myself back from purchasing most everything on the list. It really brings out the little girl in me just thinking about playing or using most of these ideas.

For example:

Barbie and Me Hair Extensions- Your daughter and her siblings and friends can have a great time mixing and matching hair extensions you make on your own printer at home!

Disney Princess Magic Learning Wand- Something pretty and fun for you daughter that can be integrated into OT therapy for hand use. Remember those neurons that fire together, wire together!

Light Therapy Full Spectrum Light- Beat the winter blues with proven light therapy at home.

Glow in The Dark Bubbles- Need I say more?

A ton of fun and useful things this year. We all had some favorites from years past so we linked our previous lists to this year's for triple the ideas for your Holiday shopping!

Have a great season everyone! Click on the links below to get started!

Air Chair
Barbie and Me Make-Your-Own Hair Extensions
Chantilly Lane Scrubs Bear
Color Changing LED lights
Disney Princess Magic Learning Wand

FIJIT Friend - Willa
Fleece boots
Flower Safety Glow Stickers
Free App - Scotty and Lulu Music and Games
Glow-in-the-dark Bubbles!

Laugh and Learn, Dance and Play Puppy
Leg Warmers by Baby Legs
Light Therapy Full-Spectrum Light
Littlest Pet Shop Dancing Dog
Massage / heated Cushion

My Keepon Dancing Robot
Polartec Winter Cape
Sesame Street Let's Rock Elmo
Shrinkins Wheelchair Decorations
Silly Bowling

Twilight Ladybug
Zoe's Dance Moves DVD

* And be sure to visit the GP2C Shop to get T-shirts, car decals, cinch sacs, music and cell phone skins!

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Holiday Gift Ideas - 2010

Holiday Gift Ideas - 2009

The entire list can be found on our Home page and at Holiday Gift List 2011 where we also list HOLIDAY TIPS for a less stresful season.

Have a great week everyone!

Happy Shopping!

Terri V~ For RettGirl

Rett We Can!

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

Last year to kick off the New Year with an empowering attitude, Girl Power 2 Cure and RettGirl launched a new YouTube channel called RETT WE CAN!



Here is why we created this channel for any of you that are not yet aware of it:

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

If you have a YouTube video you would like us to include, please send us the link! (post a link on Rett Girl's facebook page or email Terri at teresa@girlpower2cure.org. If you can't get your videos on YouTube, send them to Terri and she will get them put on for you!

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

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

Check it out now at www.youtube.com/rettwecan!

And remember to share with your daughter's school team , therapists, physicians and your family!

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

Examples of the videos we have in each category:

Walking: Olivia Walking

Hand Function: Jess Uses Touch Screen

Eye Gaze: Colors with Brooklyn

Communication and Expression: Storytime with Abby

Sports and Adventure: Daphni Jo Swimming

Therapies: Bella Manipulates Pool

NOTE: When you visit the site and see the category listings, click on one...then you will see all the videos under that category.

Remember to send us suggestions and even category recommendations!

We want you all to be a part of making RETT WE CAN a great resource!

Enlive! Apple Juice

Good Day RettGirls!

This week's featured product at RettGirl.org is ENLIVE! Apple Juice. You can find this on our website by going to Diet/Nutrition and clicking on Products.

I'm sure I am not the only one in the world of Rett Syndrome that is constantly dealing with diet and nutrition problems. Don't even get me started on gastric issues.

I'm a stickler for what products and supplements my daughter gets and when she gets them. My husband calls it my "hippie diet," but I believe it works for her.

I have been looking at the fact that since my tube-fed daughter gets only formula and water that we needed to get some fruits and or vegetables in her. The first thing that I heard over and over again was Enlive Apple Juice.

RettMom Kelly Butler swears by Enlive! Apple Juice and this is what she has to say:

"I have been giving Brooklyn Enlive Apple juice since the beginning of our Rett Syndrome journey. When her chewing became delayed I was looking for alternative ways to get more calories in her. Enlive is an Ensure product, each individual juice box is 6.7 oz and has 200 calories. It is also a bit thicker than your typical apple juice so for those kiddos that need liquids a bit thicker this might be an additional bonus for you!

It is great for kiddos that can drink out of the small juice box straws! However, Brooklyn is very particular about her cups so we just dump the juice from the box into her cup. It does come in alternative flavors but to be honest Brooklyn ONLY likes the apple juice! We order ours through our local Walgreen's pharmacy....we have been buying it there for so long that they give us a great discount now! "

Wow 200 calories in a cup or a tube snack. Gotta love it!

Do you have a nutrition product you just love for your RettGirl? Let us hear about it today.


Have a great week!


http://rettgirl.org/2009/08/enlive-apple-juice/


Terri V~For RettGirl



Disclaimer: This blog is for referral only. 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.

Belly Buttons and Belts

Good Day Rett Girls!

Check out the neatest thing for our tube-fed girls! They are called Belly Buttons. They are fabric covers for your child's G-Tube! You can find these buttons at RettGirl.Org in our Product Reviews under Clothing/Shoes.

These cute little buttons come in packs of 7 for $14.00. I know we have all been through this scenario: pick your girl up and her peg shows time and time again. These make it less noticeable and frankly they're just plain fun!

I was a little leery at first about using anything but foam or gauze so I waited a few weeks of trying them out to post, and we just love them. We have had no irritation or sticking. In fact, I recently ordered 2 more packs and am awaiting their arrival.

What makes these so neat is that you can order girls' packs, boys' packs, or themes like Dora, Tinkerbell, Sesame Street and so much more.

This is the continuous feed Belly Belt. I believe she calls this one the "bells and whistles belt." We have huge problems here with our little night feeder flipping and tossing until her YPort comes open, or she wiggles her tube out. I also have one of these on the way. Can you imagine? No more "feeding" the bed!

Here is how to order: The designer has a web page you can order from through PayPal, but all her designs, fabric choices and products have to be viewed on Facebook by going to:

https://www.facebook.com/pages/Belly-Buttons

She is great about answering any questions you may have on Facebook before you place your order.

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From the designer:
Belly Buttons are washable, reusable pads for use with gastrostomy buttons or tubes. The pads are made of 3 layers ~ a fun pattern on top, flannel in the middle, and then backed with fleece. Closure is maintained with velcro.

Sold in sets of 7 for $14.00 (includes postage)
Sets include girl prints, boy prints, or neutral solids.
Your Belly Buttons are not made until the order is received through PayPal.
Delivery time is 2-3 weeks.

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Have a great week!
http://rettgirl.org/2011/10/belly-buttons-and-belts/

Terri V~For RettGirl

FREE Head Mouse!

Good Day RettGirls!

Boy am I super excited about this one. Today we have for you a free, yes FREE, Head Mouse for your computer. You can find this Head Mouse on RettGirl.org in our Products Reviews under Communication!

On Friday, Abby's teacher sent this to me in an email. I was amazed that after a few minutes, I had a free Head Mouse installed on my computer. It works just like any other Head Mouse or Head Tracking device except there is no dot or head gear to wear. You just need a USB Webcam.

You simply download, and within minutes you are hands-free on your computer or the internet. A big plus for RettGirls.

You control where on your head you would like to track, the seconds of dwell before it clicks and more. You can also turn it on or off whenever you like. I have been playing with it all weekend.

I think this is a very exciting product for girls that can be taught to head track. I do feel the need to mention this is not a free eye-gaze device. It tracks the movement of your head, so our girls with better head control could have some great success with this.

The best thing of all is that there is no risk, no wasted money. It's FREE!

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From the software website:

The program was developed to help people with disabilities use the computer. The main audience for this program is people who do not have reliable control of a hand but who can move their head. People with Cerebral Palsy, Spinal Muscular Atrophy, ALS, Multiple Sclerosis, Traumatic Brain Injury, various neurological disorders use this program and its predecessors to run all types of computer software.

Camera Mouse works as a mouse replacement system for Windows computers so it should work with just about any application program. For example people use Camera Mouse with entertainment programs, education programs, communication programs, web browsers, and so on. (See the Downloads page for some of the programs and websites that we have used with Camera Mouse.) Camera Mouse works best with application programs that require only a mouse and a left click and that do not have tiny targets. It's easier to use Camera Mouse with application programs that do not require extreme accuracy.

What equipment is required? A Windows 7 or Vista or up to date XP computer system and a standard USB webcam (or a webcam built into the computer or monitor). We do our development work with a Logitech HD Pro Webcam C910 or a Microsoft LifeCam Cinema. Camera Mouse works with other commercial USB webcams as well.

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Good luck and let us know how it works for you!

http://rettgirl.org/2011/10/free-camera-mouse/

Terri V~For RettGirl

Rett Syndrome Awareness Month - Mom on a Mission

It's Rett Syndrome Awareness Month - let's make some noise!

It's me, Terri. I am Mom, Rett Mom, Advocate, wife and all around Autism awareness terrorist. I run RettGirl.org and a YouTube channel called Rett We Can for Girl Power2 Cure.

Why? Well thank you, I’m so glad you asked. I hope you can pass on this blog and help us spread the word about the hundreds of thousands of girls fighting Rett Syndrome.


My 7-year-old daughter Abby has Rett Syndrome - an X Chromosome Linked form of Autism and the only form of Autism with a known genetic cause. Because the gene mutation is on the X Chromosome, it mainly affects girls, but there are a handful of boys that have it too and they are just as deeply affected.

The gene of which we speak is called MECP2. It is known as the regulatory gene between your brain and your body. It is the gene that tells every other gene when to turn on and off. Strangely, this gene doesn’t play much of a role until your child is between 18 months and 2 years of age. Up to that point you have a seemingly normal, typical child doing all the things they are supposed to do.

Once this gene kicks on, if it is faulty like in Rett Syndrome, everything start s to shut down. There is a rapid period of regression where most every acquired skill is lost. Most purposeful hand use disappears almost immediately and is replaced with a constant wringing, tapping or hand mouthing. All speech goes during this regression stage, and your child turns physically back into an infant where she will stay…trapped in her own body until a cure is found.

Good news! Rett Syndrome is poised to be the first curable neurological disorder. It was announced in 2007 that Rett Syndrome had been reversed in laboratory mouse models. It’s there and until we can get it funded in a way that gets it right for humans, our babies remain locked in a world they can only observe.

One major debilitating factor in Rett Syndrome is called Apraxia. Apraxia is like this: the will to carry out intent is there, but the physical ability is severely delayed or not there at all. Some describe it as having Autism, Cerebral Palsy and Parkinson’s all rolled up in one little girl.

Need to Knows:

• Debilitating neurological (movement) disorder that predominantly affects females.



• Baby girls are born "normal" but begin to lose acquired skills between the ages of 1-3 years old.



• Caused by a single gene mutation that leads to underproduction of an important brain protein.



• The most severe form of autism.



• The leading genetic cause of severe impairment in girls - most cannot speak, walk or use their hands.



• Despite their physical disabilities, girls with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought.



• As prevalent as Cystic Fibrosis, ALS and Huntington's.



• Another little girl is born with Rett Syndrome every 90 minutes.



• Rett Syndrome is a potentially REVERSIBLE disorder. Research has proven once protein levels are back to normal levels, symptoms subside.

Why have I never heard of this you may ask? That’s why we are here today. To inform, educate and raise awareness so little girls like my Abby will no longer be held in the unknown.

Want to learn more about Abby and contribute to research? Follow this link to her personal story at Girl Power 2 Cure: http://girls.girlpower2cure.org/abby

Thank you - PASS IT ON!

Terri

Nuk Brush

Good Day RettGirls.

This week's feature at RettGirl.Org is the Nuk Brush. You can find this neat little item in our Product Reviews under Sensory.


I have had a Nuk Brush in the bathroom for Abby since her teeth started coming in. Recently, I have had several parents tell me that it is a great tool for oral stimulation. One even commented that it really helped their tube fed child learn to eat again.


Last week at Hippotherapy the Speech Pathologist that runs the place had me bring Abby in early so she could do some oral motor exercise with her. Abby has become quite the drooler lately.


The first thing she got out was this Nuk Brush set. She ran the round brush in a C pattern in her cheeks. She used the flat brush to go over her gums. When she put it on her tongue she immediately wrapped her mouth around it and sucked on it like a straw. I haven't been able to get her to use a straw for almost a year. In one session!


We took the set home and have been using it every day. In the last week we have gotten Abby to at least sip from a straw and eat whole jars of food instead of one bite. I didn't expect results that fast but I'm going with it.

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from the company website:

This brush is recommended by Speech Pathologists as well as feeding clinics to wake up the mouth before feeding.The Nuk™ brush massager is used for oral massage, oral stimulation and exploration. It stimulates lateral molar ridges, reduces oral hypersensitivity, and helps develop a tongue groove. The flexible, nubby texture offers valuable sensory input for the child’s mouth. Though this brush was designed initially for teething infants, it has made its way into therapeutic settings as an invaluable tool for sensory exploration. The nubby surface can hold tastes of liquid, purees or crumbs while it is used with supervision as a “spoon” for initial feedings. The NUK brush is approx. 5″ long. Use only under adult supervision.

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Good luck everyone!

http://rettgirl.org/2010/08/nuk-brush/




Terri V~For RettGirl

Chewlery!

Good Day all.

These awesome little sensory items are called "Chewlery." You can find them at RettGirl.org in our Product Reviews under Sensory.

I know some of you may have seen them on other children or have a few of your own. I wanted to let you know there is quite a selection out now and a great gift idea for that hard to buy for RettGirl. Sensory is such a big issue in our lives along with the dreaded teeth grinding (Eeek, even typing those 2 words made my ears tingle.)

As you can see there is a great selection of colors between From the pink and purple on the girl above to the yellow, blue and green.

This fabric elephant is my girl's favorite. We can get her to chew on this rather than the also Non-Toxic plastic coils that are a staple in some girls' homes.

I once visited a Mom who's daughter got an assorted case from her Grandparents every year for Christmas. Without them she is a constant grinder and sometimes biter.

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from the company website:

Chewable jewelry is a great way to keep kids from chewing on their clothes, while letting them work through their chewing tendencies. Its also great for oral-motor stimulating activities. Non toxic, colorful, plastic jewelry that "streeeetches".

For the fabric chewlery

Helps kids with difficulty handling sensory input
Absorbent, adorable, slightly stretchy neckwear that contains elastic
Low-pile terry cloth provides a natural comfort for the mouth
Bleachable, machine washable and dryable
Endorsed by therapists and moms

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If you are looking for that "something" that will help with those oral motor sensory tendencies. These come highly recommended!

Have a great week!

http://rettgirl.org/2009/08/chewlery/

Terri V~For RettGirl

Caroline's Cart

Woo Hoo look at that!

I don't know about you, OK I do. Pushing a wheelchair while pulling a cart is like maneuvering a semi around a sharp corner in the store. Even for girls that can walk they sometimes tire easily.

The cart above is called Caroline's Cart. There is a movement in the US to try to get these carts in stores for the special needs community. Once again thought up by a parent of a child with multiple special needs.

No longer will we have to strap our children into those red and blue 2 seaters that don't hold them up. No pushing a wheelchair,pulling a cart and using your other 6 arms to shop.


I have been a royal pain in a certain popular chains you know what because I complain every time I come into their stores and the big blues are sitting outside in the 100 degree heat. Or left out and covered in rain. The best I have been able to do is to get them to slap a couple of handicapped stickers on 3 of them and park them next to the scooters inside the store. They work in a quick pinch but my back aches after I have had to push that big thing with one hand while holding Abby up with the other.


Having her facing you makes everything so much easier. My daughter can't stand facing away from me if she is in own chair or the big ones at the big chains. I think there is a sensory issue with the florescent lights, all the people and all the different colors and noises. This way she can focus on you or what she has with her.

We have added Caroline's Cart to RettGirl in our Product Reviews under Mobility. This is not an item you can just purchase but they do have ideas on how to get them into the stores you shop in.

For more information please visit:http://carolinescart.com/

Happy Shopping,

Terri V ~For RettGirl

Britax Traveller Plus EL

Hello RettGirls!

This week at RettGirl we are featuring the Britax Traveller Plus EL car seat. You can find this incredible car seat in our Product Reviews under Positioning.

We have had this car seat in our van for about a year now and we are so glad we do! We had originally tried to purchase a different one at twice the price when the order taker on the phone had me take a look at this one online. She mentioned the comfort, durability and headrest over and over. I was sold, and it arrived within 2 weeks.

We call it "Abby's Lazy Boy." It is so soft and cushiony. With the headrest or wings, as they call them, we have not had one incident of head flopping. The only bad thing I can say about it is I am pulling a sleeping child out it every time we go to take her out of the van. That is not always a bad thing though. Sometimes when nothing else works to get her to sleep...into the van she goes. A drive or 2 around the block usually does the trick.

Is this car seat just what you've been looking for? Do you have one and want to share your review with us?

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From the company website:

Britax Traveller Plus – a forward-facing car seat specifically designed for children with special needs.

The Britax Traveller Plus car seat model meets USA standards (FMVSS 213) for safe and secured travel for your child in a vehicle.

•Forward-facing car seat for children 22 – 105 lbs. (10 – 47.6 kg)

•Appropriate for children with mild to severe disabilities

•“Thigh Depth" should be equal to or greater than the “Seat Depth" (within + or – 1 inch) to promote a proper seating position

The Britax Traveller Plus includes the following standard features:

•Height-adjustable Headrest

•Removable & Washable Fabric Cover

•5-Point Harness (extended lengths of 3" on the belt and the crotch strap)

•Foam Abductor

•Tether Strap – used with ALL configurations

•LATCH Strap – used for children between 22 and 48 lbs (10 kg & 21.7 kg)

•Recline Bar – installs the car seat at a 26° angle for children that need assistance maintaining head control

•Pad Kit to adjust the amount of support for your child

•Buckle Guard


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Need I say more? I haven't met a family that has one that doesn't absolutely rave about it!

Hope you all are have a wonderful week! Stay safe!

http://rettgirl.org/2011/08/britax-traveller-plus-el/


Terri V~For RettGirl

Stylin' in Cardboard?!

Good day Rett Girls! Today we have a guest blogger! Stefanie Gutierrez gives us the scoop on her daughter's new adapted chair....made from cardboard!

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After receiving Anna’s adaptive stroller and feeding system earlier this year, we were at a crossroads, as most of my fellow Rett-mama’s can relate to. We were thankful for the chair that would help keep Anna nice and straight and position her really well, but we were sad that she spent most of her days in it. Anna is non-ambulatory and can’t sit on her own.

So she had breakfast in it. Then her morning therapy sessions. Then her snack. Then lunch. Then dinner then….

What happened when she just wanted to watch television with her brother, Gabriel? When she just wanted to “read” a book with us or “color” on her iPad? If we weren’t able to hold her, she was in that blessed chair that we were all – including Anna – sick of.

We were looking around for a relaxing chair… A lounge chair of sorts that Anna could just relax in and she knew was just for her down time. I had heard bean bags were great options for some.

I kept thinking about when Gabe was three, and how he had this little red Ikea chair. Anna should have something like that, too, I thought.

Enter Adaptive Design. Dr. Sasha at the Rett Syndrome Clinic at Montefiore had suggested it at one of our prior appointments. After a quick phone call, we had a very informal get-together with Antoinette, one of the brains behind the project. It seems she can create anything you’d like out of any possible reusable material on the planet. We walked in and they had an entire showroom full of chairs of any kind – think rocking chairs to high chairs to booster chairs – all made out of 100% cardboard.

We explained to Antoinette the desire for this lounging chair we had in mind and she immediately grasped what we were going for. Within a week they had built a chair for Anna out of cardboard. It has a pummel to keep her positioned correctly and a Velcro wrap keeps her upright. A tray fits in the front. The cherry on top? A local artist who donates their time and talents to Adaptive Design painted the chair in colors of Anna’s choice and her favorites… Think purple, butterflies, flowers, ladybugs. It was delivered a few weeks later and it is her relaxing chair. Exactly what we wanted.

Take some time to check out their website: http://www.adaptivedesign.org/.

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Thank you for sharing Stefanie! If you would like to share something with all the Rett Girls out there, send me your story!

Terri V. for RettGirl

Our Marvelous Media Category!

Good Day RettGirls!

This week at RettGirl.org we are featuring our Media tab under our Product Reviews.

There is so much to find here that can help you and your girls. Teachers and caregivers have all used our media category to teach themselves a little more about our girls and what works for them.

What can you find here? Let's take a look.

Media

Books-We have online books, Children's Books, Education in Rett Syndrome books, Nutrition, Care and more ...

Music-Personalized CDs. GirlPower2Cure CD; controllers, RettComposers, devices ...

COOL ALERT! It's a large-button controller to control songs on an iPod!

Software-Free software sites, Recommendations, Sites for Teachers and Speech Pathologists ...

Video-Websites, Devices, Video suggestions, Educational videos, ASL ...

Websites-Disability resources, Government offices, Product resources, App reviews, Software sites, Free Educational Programs for the classroom sites, and much much more ...

We are always learning and growing for you here at RettGirl.org. If you have suggestions or anything to add to what you find at RettGirl, we would love to add and share with all of our families living with Rett Syndrome.

We hope you find something here that can help!

And please feel free to share with your schools. My daughter's teacher has RettGirl.org bookmarked and uses ideas from here for her entire classroom!


Have a great week,

Terri V-for RettGirl