Rett Girl Holiday Guide 2015

“RETT GIRL HOLIDAY GUIDE 2015” © COPYRIGHT 2015 | WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED

Rett

GIRL

HOLIDAY

Guide

H O L I D AY F U N G I F T G U I D E E D U C AT I O N R E C I P E S

HolidaysVERYHAPPY

&

NEW YEAR

ABBIE CORA JOSIE ELLIE ELLA FIONA BRIA BLAKELY ELIZA SUMMER

QUINCEY ALEXA GABRIELLE KAYDEN MCKENNA AVA LILI CLAIRE KATE ISABELLA

JAELYN SAVANNAH AUDREY JORDYNN NAVAEH SOPHIE ALANA EMILY KYLIE ABBY

GOLDIE BRIANNA CHARLOTTE LILLY BRISTOL MYA CHLOEY EMMA RACHEL FIONNA

SUKI MARLIE ERIKA AVERY JULIE GRACE MIA ISSA FREIYA MICHAELA ALYSSA

KATELYN CERYS MARIA SKYLAR TIANNA STEPHANIE ALEXUS GRACE REBECKAH LAURA

FRANCESCA RYLAN SONJA CLAIRE TIANNA OAKLEY SIENNA ANGELA SADIE SHRI

RYLEE SARA EMMA ASHLYNN CIANNA HAILEY ANNABELLA AMANDA SAVANNAH ADDISON

1. Happiest of Holidays to you and yours.

The holidays are fast approaching. Whether that fact This is our family’s favorite time of year despite the
brings you thoughts of joy, sadness, anxiety, excitement, frigid below zero days. Our Holiday Guide is
all of the above or something in between, I get it. The inspiring, uplifting, and hopefully will bring you joy
holidays tend to be a time that stir up all sorts of emotions to get you through these winter days. We
and dealing with Rett Syndrome in the midst of it all can encourage you to try something new with your
sometimes be a bit too much. This is the time that we all sweet girly. Whether it is a new recipe or a new
have to remember that we are not alone, but rather, part craft, we hope you can find something out of our
of a large family not only during this season, but always. Holiday Rett Guide to brighten your days ahead.
Our Holiday Guide was created with that very thought in
mind. We worked to create a guide that would help to Being a Rett mom myself, I completely understand
give practical ideas, and functional activities, a little help how stressful and tough this time of year can be.
with gift giving and maybe a little hope for the New Year How do I explain that family gatherings can be
too! stressful for my Rett Girl? I encourage you to invite
As this year starts to wind down and the New Year approaches visiting family members and friends to try helping
us I just want to say a very heartfelt THANK YOU to all of your girly by reading her a book, brushing her hair
you. I am so grateful to be a part of such a wonderful Rett and putting pretty bows in for her, helping to feed
family. I am so proud that we all share a common desire her, taking her for a walk, giving her a foot massage,
for our Rett children to grow and thrive and to create a listening to some music together, singing a song to
better, brighter future for all of us. her, or simply just telling her one of your favorite
Holiday Blessings, stories from your past holidays.
Bridget MacDonald
Rett Girl Coordinator We want your holidays to be a positive experience.
[email protected] We hope you find our Holiday Rett Guide useful
and inspirational. We encourage you to change
1.2.BKrridisgteint,&fafmamilyily& Santa Claus things up a bit. Start new traditions; make new
memories that are everlasting, and POWER ON!

Kristin Hileman
Family Support Team Leader
Girl Power 2 Cure
[email protected]

2.

Rett
GIRL

HOLIDAY

Guide

"Somehow, not only for Christmas, But all the long year
through, The joy that you give to others, Is the joy that comes
back to you. And the more you spend in blessing The poor
and lonely and sad, The more of your heart's possessing
Returns to you glad." - John Greenleaf Whittier

W e ’ v e b r o k e n o u r H o l i d ay
Rett Girl Guide down into

s i x fa b u l o u s cat e g o r i e s .

Click the category to navigate to each section

5 Winter ACTIVITIES Creative list of activities to do this Season

11 HOLIDAY Recipes Delicious dishes for the festivities

17 HOLIDAY Survival Tackle the holidays with great practical tips!

23 Holiday GIFT GUIDE Our 7th Annual Gift Giving Guide

30 EDUCATION Have some fun learning over Christmas break

35 RESEARCH Hope for the Holidays

Rett
GIRL

HOLIDAY
Activities

HOLIDAYS ARE STEEPED IN TRADITION AND EXPECTATIONS
WHICH CAN PUT A LOT OF PRESSURE ON YOUR FAMILY. WE’VE
GOT SOME IDEAS FOR YOU THAT HELP INCLUDE YOUR RETT GIRL
AND MAYBE HELP MAKE SOME NEW TRADITIONS.

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SPEND SOME TIME in the kitchen

Christmas Cookies

A Christmas tradition with a gluten-free twist

All kids love Christmas cookies -- making ingredients
them AND eating them! And let's be honest,
they are a holiday staple right? So why not sprinkle
get your Rett Girl involved with a gluten-free cookies

recipe?

Directions 1Ccouopkiegsr:anulated sugar
1. In large bowl, beat granulated sugar, 1/2 a cup shortening
1/2 cup butter, softened
shortening and softened butter with 2 tsp. vanila
electric mixer on medium speed, until 1 egg
creamy. On low speed, beat in vanilla 2 1/2 cups gluten-free Rice Flour
and egg. Stir in flour blend, baking 1/2 tsp. gluten-free baking powder
powder and salt until well mixed. 1/4 tsp. of salt
Divide dough in 1/2; shape each 1/2
into disk. Wrap in plastic wrap;
refrigerate about 1 hour or until firm.
2. Heat oven to 375°F. On work surface

lightly sprinkled with flour blend, roll Glaze:
each half of dough to 1/4-inch 1 cup powdered sugar
thickness. Cut with 2 1/2-inch cookie 2 Tbsp. milk
cutter. Place 1 inch apart on recipe from: www.bettycrocker.com
ungreased cookie sheets. Bake 8 to 12

minutes or until edges are lightly

browned. Let cool on cookie sheet. HHoelirdeaayrCeo2o1kGieluRten-Free•
ecipes!•
Now here’s the fun part! Decorating! Make
colored glaze using the recipe to the right and •
adding food coloring. Choose gluten-free •
decorations like jimmies, colored sugar and •
mini marshmallows. Let your Rett Girl eye •
gaze to her choice of colored glaze and AGPCnSieDnhdhpugooMptecrcerotohrbNlrmareSuet.iue.ant..gd.tCS.a.nBo.CroaooCrwkokoibkeoCisakeolisloeCskoieoskies
decorations, or, if she has an eye gaze foCrLItCheK rHeEciRpEesWsatonrtestossealvperaemliattdleepgrlueptetni-mfer?eeMcooosktiegdroocuegrhy!
computer have her use her device to tell you
or friend how to decorate her cookie.

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C E L E B R AT E H E R !

PURPLE TREE

GIVE HER A TREE THAT’S ALL HER OWN

Who wouldn’t a purple tree? gaeOdttndWhtficenlhoeeibgrgsoAsyhuumtaptouydpLhsSgunueedpopgtmerltogiafupeseoweukrasrsoltnstptdemoftslwteoetrrceohoanirooinelrlitaklisgsroggheimtnrnhohhrvseaatgeatmesemslenolcciyn-eknoatehuoetrkgenfinouthe.peatbrembihsicpnneNeetRehtogrklrwtepeer,axyetoeiestnprecttpxthhudaGayfatotrrrrtredidoipotrahtcasedlleesma.efcgssai!optoinhroyrrurCoadlmaorpydmhtpseupeirulltoeiirdingilstmkoltgtaiyeocmnehrooecflwoabaluomaosfrnurhlecetgdaasitdati,tnelfe!onltro,.fdropleyki.nk,

NEW YEAR'S 7

NOISE MAKERS

RING IN THE NEW YEAR WITH A BANG!

Whether or not your Rett Girl is planning to stay up until
midnight to ring in the New Year or just celebrate with a little
pre-party, ALL kids LOVE being part of the fun. All you need
are two paper plates stapled together and filled with some
beans or rice. Add a craft stick tucked in and stapled for a

aNsheaWwynoadYunleter.iaDtnroeg’csioninricaso2trec0p!e1o6ler?batrCealitcaekdnHeawEroRutErnadtdotithsieoeneWohrolwd!
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HEad out the door!

COMMUNITY OUTINGS

Get out there and into the Holiday Spirit!

WINTER Ice Skating ADAPTIVE SKIING
OUTINGS!
Take your girl for a spin around the Yes, we said skiing! There are ski
All of these activities require ice rink this year! Visit a local resorts around the country offering
leaving home which can be outdoor pond OR contact an indoor ski experiences for those in
very difficult especially during rink and ask if they will allow a wheelchairs. Challenge Mountain in
the winter because of those wheelchair on the rink– this way if Michigan offers FREE lessons and
cold temperatures that can be she gets cold you can just come off equipment for all people with
rough on our girls: snow that’s the ice and into the warm indoors. disabilities and their families. Check
hard to navigate with a chair, it out here. www.cmski.org
and of course GERMS! But PARADES
getting out is therapeutic for ANGELS ON STAGE
EVERYONE! There’s something There are Christmas Parades going
very special about fellowship on all over the place! Check your This is a fantastic program that
with others especially during local community for one in your enhances the lives of children and
the holidays. This holiday area. Make sure to bundle your Rett young adults with special needs by
season we want to encourage Girl up tight. breaking down stereotypes and
you to try an outing this empowering them through the
season, even if it’s just one. LIGHT SHOWS medium of professional performing
arts. You can check it out here.
HereprisepaavirsgeiCrteyliawcotkuitrvhHidcSEehoiRaldtnEhtf!aaotr. helps Many communities have Light www.angelsonstage.org
a Shows in their downtown areas. If
you can’t find anything close you Sensitive Santa
can always pack up the car and
drive around to the homes in the Sensitive Santa’s have been
area that have put up decorations. popping up in malls all over the
Or check out this Guide to the best place! This is a sensory friendly
light displays around. Santa experience with less crowds
www.takingthekids.com and short wait times. Check with
your local mall to see if they are
participating.

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SHARE THE GIFT OF LIGHT BROADWAY OTHER IDEAS

This year you can easily join Enjoy an amazing show this Holiday 1. VMisuisteyuomur local
a Chanukah celebration wherever season! Use this link to pick your 2. Tafailksmee!ntCsheloircfykamfHrieileyrnetdoly
you are. Simply use this handy tool to city and checkout the upcoming 3. Head out to your
locate the Chanukah events closest schedule! The Best of Broadway in
to you here. www.chabad.org your hometown! local indoor pool
www.broadwayacrossamerica.com 4. Get together with
TREE LIGHTING
CHRISTMAS TREE family & friends
Christmas Tree lighting ceremonies FARMS for some holiday
are just one of a variety of ways in cheer! Sing some
which the Christmas season is In this age of environmental carols!
celebrated in the USA. Here is the awareness it's appropriate to know a
selection of the top 10 Christmas favorite family holiday tradition of
tree lighting ceremonies and events choosing a real Christmas tree over
taking place in the USA. an artificial tree is still the
www.topeventsusa.org environmentally sound choice. And
cutting down your own is the stuff
National Parks Seasonal Fun traditions are made of! Check out
Christmas tree farms in your area
Sites across the National Park System here. www.christmas-tree.com
are celebrating the season in exciting
ways. From musical concerts, to
cultural performances, to hands-on
craft projects, there are incredible
opportunities for you to enjoy the
season’s festivities.
www.nationalparks.org

Christmas Markets tfhaeAmCbdhiaelyespcSttgkaaaobommculteeteitvIiitdntmhyeigieasshi!st just
in!
Each year more towns and cities are
hosting German style Christmas
Markets, Christmas Villages or
Christkindlmarkets. The markets
combine great food, music and
entertainment, and have become
more and more popular! Check out a
list here.
www.christmasmarkets.com

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YOU CAN DO IT!

HOLIDAY DIY

Make one musical instrument per week from now until
Christmas!

Jingle ANKLE bracelet

All you need is 1 pack of jingle bells, a pair of scissors and 1

mm elastic cord (cut to fit a little larger than child’s ankle).

String the bells on the cord and tie the cord at the ends.You

can mix with wooden beads. CLICK HERE! two-daloo.com

Drum

Out of oatmeal? Don't toss that empty container! Instead,
use it to make a drum set, complete with drumsticks crafted
from dowels and bouncy balls. Check it out HERE!

learnvest.com

RAIN MAKER TakaenindthsTietnhrtcReuhoemerPtrpetaonowpUrtysanetriciveneootrtufoshreisMatsyeuelesMsgicsrueosanict!

Make your own version of this traditional Native American

instrument. Fill an empty paper towel roll with rice and

cover both ends with card stock, then, decorate!

Instructions here. happyhooligans.ca

Egg shakers

Take those leftover plastic eggs that the Easter Bunny

brought and turn them into something musical! Fill them

with rice, beans, cereal or anything else that makes a fun

noise! Find the instructions here. ourpieceofearth.com

10 “RETT GIRL (HOLIDAY) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED

Rett
GIRL

HOLIDAY
R e c ip e s

KITCHEN-EN [KICH-UHN] - NOUN: A GATHERING PLACE FOR
FRIENDS AND FAMILY - A PLACE WHERE OUR MEMORIES ARE
HOMEMADE AND SEASONED WITH LOVE.

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H O L I D AY M E A L S

BLENDED FOODS

A HEALTHY ALTERNATIVE FOR RETT GIRLS WITH A G-TUBE

TIME SAVER Having a G-Tube shouldn’t keep your Rett Girl from enjoying all of the
TIP! wonderful, nutritious foods that are served around the holidays! Here are
some great recipes that will give her a real taste of the season!
Instead of making your Rett
Girl a whole separate blended TURKEY DINNER (Calories) HOLIDAY LUNCH (CALORIES)
meal, just take the food that
you have prepared for your Makes roughly 5 servings Makes roughly 1 serving
family and stick it all in a
blender with some form of •8 Oz. Turkey (236) •1 slice whole wheat bread
liquid – almond milk is great (gluten free if needed) (120)
for thinning feeds and it offers •1 Cup Mashed Potatoes (356) •½ cup strawberry keifer (80)
a nutritional boost! Keep in •4 oz coconut water (35)
mind spices and ingredients •1 Cup Stuffing (214) •½ banana (45)
that may upset your Rett Girl’s •1/3 cup chicken breast (110)
system and leave those out. •1 Cup whole, raw Cranberries (44) •2/3 cup mixed vegetables (48)
•1 Tbsp. olive oil (180)
•2 Cups whole milk (300)
*Mix on soup setting in a Vitamix or
*Put turkey and some milk into the Blendtec blender until it’s thin
blender and let ‘er rip. Add the enough to use with a feeding
rest of the ingredients in order, pump! Add more liquid if needed.
and the rest of the milk. Puree
until smooth. The blend should be *It’s easy to incorporate local, seasonal foods
plenty pourable and easy to bolus
feed. into your meals. Sweet potatoes, rhubarb,
& pumpkins are in season from late-fall to
*Consider purchasing a Heritage turkey or early-winter in most of the country.

an organic turkey and veggies from local farms
this holiday season.

DOoropgrrgaotrndoeuiacDctseorooderfcefileipvreessry!loCcaalnicld,kstHehaeEsyRohnEaavle Blended diets can be very intimidating at first. You wonder if you’re covering
all your nutritional bases with your Rett Girl and you wonder if you’ll have the
time to make a separate meal all for her. What about the times that you’re
running late or the rest of the family is hitting the drive through? Can we offer
a tip? Every so often make several servings of her blended meal. Then freeze
the servings in individual freezer bags. Now when you are strapped for time
all you need to do is pull a meal out of the freezer, thaw and blend!

TviositRethaedRMetotrGeiralbBolougt blended diets

HERE

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recipes

GLUTEN-FREE FOODS

Perfect recipes for the HOLIDAYS THAT EVERYONE WILL LOVE!

The holidays are all about food, fun and family! But when your diet is restricted you can feel a little out
of the loop! No need to worry, Rett Girl has got you covered with some amazing recipes so delishous that
no one will even guess that the gluten’s missing! You’ll have something amazing to bring to parties and
your Rett Girl will have something great to eat!

W ild R i c e Stuf f in g – F rom Cookling Lig ht.com

Serving Size PREP TIME TOTAL TIME Ingredients
• 1 teaspoon kosher salt,
12 30 20
divided
MIN MIN • 3 cups water
• 2 cups fat-free, lower-sodium

chicken broth
• 1 cup uncooked wild rice
• 2 cups uncooked long-grain

brown rice
• 1/2 cup finely chopped peeled

turnip
• 1/3 cup finely chopped celery
• 1/3 cup finely chopped carrot
• 2/3 cup chopped pecans,

toasted
• 1/2 cup chopped dried sweet

cherries
• 2 green onions, thinly sliced

DIRECTIONS 13

1. Heat 2 tablespoons butter in a large saucepan over medMiuums eheuamt; swirl to coat. Add 1/2 teaspoon salt; sauté 8

minutes, stirring occasionally. Add 3 cups water, chicken broth, and wild rice; cover. Increase heat to high;
bring to a boil. Reduce heat, and simmer 30 minutes. Stir in brown rice; cover and simmer 30 minutes.
Remove from heat.
2. Preheat oven to 400°.
3. Heat remaining 2 tablespoons butter over high heat in a large skillet; swirl to coat. Add turnip, celery, carrot,
and remaining 1/2 teaspoon salt; saute 1 minute. Reduce heat to medium; cook 4 minutes, stirring
occasionally. Remove from heat.
4. Combine rice mixture, turnip mixture, pecans, cherries, and onions in a large bowl. Spoon stuffing into a 13 x
9-inch glass or ceramic baking dish. Cover with foil; bake at 400° for 20 minutes or until liquid is absorbed.
Let stand 5 minutes before serving.

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Warm fall spices and slightly sweet sherry vinegar coat this delicious mixture of cubed sweet potatoes
and pears. The flavors of this healthy side dish will complement any holiday roast. The sweet potatoes
offer some wonderful complex carbohydrates as well as a healthy dose of vitamin A. The pears offer a
nice sweet flavor and are one of the fruits highest in fiber!

ROASTED SPICED SWEET POTATOES & PEARS – FROM WHOLEFOODS.COM

Serving Size PREP TIME TOTAL TIME Ingredients

6 15 75 • 2 lbs of sweet potatoes ,
peeled and cut into 1-inch
MIN MIN chunks

• 1/4 cup sherry vinegar
• 1/2 teaspoon ground

cinnamon
• 1/4 teaspoon ground ginger
• 1/4 teaspoon ground nutmeg
• 1 teaspoon ground cumin
• 1/8 teaspoon ground cloves
• 2 pears, such as Bosc or

d'Anjou , cored and cut into
1-inch chunks
• sea salt to taste

DIRECTIONS

Preheat oven to 400°F. Line a baking sheet or large roasting pan with parchment paper. In a large bowl, toss sweet
potatoes with vinegar, cinnamon, ginger, nutmeg and cloves. Transfer potatoes to baking sheet with a slotted
spoon. (Set aside bowl with remaining vinegar spice mixture for use with pears.) Bake about 30 minutes.

Meanwhile, place pears in reserved bowl with vinegar spice mixture and toss until evenly coated. Add pears to
baking sheet with potatoes and continue to bake until pears are golden and potatoes are fork-tender, about 25
minutes.

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SWEET POTATO AND KALE LATKES - from THECOLORFULKITCHEN.COM

Ingredients

• 1 tbs ground flax seed
• 4 medium sweet potatoes
• 1 small onion, diced
• 1 cup kale, shredded
• ¼ cup all purpose gluten-free

flour
• 1 tbs tamari
• salt and pepper to taste
• coconut oil for frying
• organic apple sauce (optional)

Serving Size PREP TIME TOTAL TIME

4 15 30

MIN MIN

DIRECTIONS

In a small bowl or cup, prepare flax "egg" by combining 3 tbs warm water with ground flax. Stir then let sit for at

least 10 minutes before using. Museum

Use a medium-size grater to grate sweet potatoes. Place in large bowl.

Stir in flax "egg", onion, kale, flour, tamari, salt and pepper. Use your hands to knead everything together.

In a large skillet, heat ¼" of oil at medium temperature. Use your hands to form latke patties and fry on each side
until golden (about 7 minutes). Line a plate with paper towel and place cooked latkes on it to drain.

Enjoy warm with applesauce.

Have a great recipe?
Email us & it could
be featured in our
tPhhoetcosolboyrfulkitchen.com next Guide!

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15

A big thick slice of apple pie with a crumbly top and flakey crust! You won't believe that it is really gluten
free and the whole family will enjoy it! Serve with a scoop of Vanilla Bean Ice Cream and your Rett Girl
will have a high calorie treat while getting in some great vitamins from the apples!

Gluten-Free Apple Pie – From food.com

PA STRY In gredien ts

• 1 ½ cups gluten-free flour
• ⅓ cup cornstarch
• ½ cup sugar
• 1 tsp. xanthan gum
• 8 Tbsp butter, cut into pieces
• 1 large egg
• 1 Tbsp gluten-free vanilla

extract

Serving Size PREP TIME TOTAL TIME APPLE FILLING

6 15 75 • 7 medium apples, peeled, core
and very thinly sliced
MIN MIN
• ½ cup sugar
• 1 tsp. ground cinnamon
• ¼ tsp. ground nutmeg
• ¼ tsp. salt

DIRECTIONS C ru mb le To ppin g

• ¾ cup light brown sugar

Pastry Crust Instructions • ¾ cup gluten-free flour (See

In a mixing bowl stir together the flour, xanthan gum and cornstarch. Add the above)

sugar, butter, egg and vanilla and mix until combined. Remove dough from • ½ tsp. ground nutmeg

bowl and knead and fold on a surface dusted with GF flour until well well • ⅓ cup butter, chilled & cut

combined. Divide into two pieces and wrap in plastic wrap, place one in the into small pieces

refrigerator to chill and place the other in the freezer for later use. Go ahead

and make Apple Filling while the Pastry Crust is chilling. After approx 20

minutes, remove dough from refrigerator and roll into a ball. Using a rolling

pin, roll the dough out on a lightly GF floured surface until it is the thickness

of a normal pie crust. Place crust in a 9 inch glass pie dish that is lightly

sprayed with non stick spray. Using a fork poke a bunch of holes in the sides and bottom of the crust.

Apple Filling Instructions
In a large bowl mix apples, sugar, cinnamon, nutmeg and salt. Set aside and let the juices mix.

Crumble Topping Instructions
In small bowl mix together brown sugar, GF flour and nutmeg. Next mix in the chilled butter and cut it in with a fork or other
tool until you have a course crumbly mixture.

Assembling your Pie
Preheat oven to 400°F. Spoon apples into your pie crust, Sprinkle your Crumble Topping all over the top (use it all). Use tin

foil to cover edges of crust as it will burn easily. Bake for approx. 35 minutes, topping will be lightly browned and filling will

be bubbly. Let cool for at least an hour before serving.

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Rett

GIRL

HOLIDAY
Survival

MAYBE CHRISTMAS, HE THOUGHT, DOESN’T COME FROM A
STORE. MAYBE CHRISTMAS... PERHAPS...MEANS A LITTLE BIT
MORE. ~ DR. SEUSS, HOW THE GRINCH STOLE CHRISTMAS

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A different kind of Christmas

FINDING JOY

Look for the little treasures of joy and beauty in this
holiday season - BY ELIZABETH HALFORD

“You go to the if my ripples bump into yours then CHECK OUT
pantomime with great. As C.S. Lewis famously said, ELIZABETH’s
the boys, I’ll go to “Friendship is born at that moment BLOG
the hospital.” when one person says to another,
'What? You too? I thought I was the www.graceforrett.com
Christmas. The worst possible time for only one.’”
the hospital to say, “Hey can you come Grace was born in November
over? Like…now?” To me, the magic of Christmas is all 2008. She rolled over when
about connection. About stripping she was 5 months old and
Steven went to the panto. I schlepped back the trappings of our modern lives then never did anything ever
my year-old baby to the hospital. My and getting all old-fashiony. We do again. She was diagnosed
year-old kid who was pudgy but a things we would never normally make with Rett syndrome when she
dead weight in my arms. time for: ice skating, Christmas was just 13 months old.
markets, watching copious amounts
I arrive huffing and puffing into the of movies, singing in the car, drinking Elizabeth Halford is
room and plop down in the cold, hard hot chocolate. And then the climax of a professional blogger and
chair. the whole thing: we spend one morn- photographer and had a
ing together in the living room without hand in running the charity
Two doctors. devices or TV. Cure Rett. She writes about
her daughter and the daily
Crap. But with all this connection going on, struggles of dealing with
it tends to make Rett syndrome so Rett Syndrome and resides in
“So….what’s up, docs?” much more prominent in our home at the UK.
Christmas. Grace cannot drink hot
What was up was that Grace had Rett chocolate or open gifts or stay awake
syndrome. Only a little Rett syndrome. for a movie or bake with me or sing in
At Christmas, no less. the car. I am left living for weeks with
a lump in my throat and tears just
Let me tell you now. This isn’t going behind my eyeballs, bracing myself
to be about candy canes or elves on and wishing that Christmas would
shelves. This about the underlying both last forever and be over in a
truth that for some of us, Christmas heartbeat.
isn't what it used to be.
In the early stages of Rett, when the
But I’m not gonna make this about regression is happening, a hallmark
you. Because I don’t know you and, symptom can be a loss of connec-
heck, Christmas might be the best tion. A little girl who is flipped
thing that ever happened to you. I’m inside out and upside down. A
just going to tell you about my strug- little girl lost. I can only speak for
gle. I’m going to throw my stone into ourselves that Grace never fully
the pond (is that even a saying?) and came back. What emerged was

18 “RETT GIRL (HOLIDAY) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED

a new Grace and a new normal for the Halford family.

Grace doesn’t care about toys. She cannot use her hands. She cannot use
her voice. She’s always happy so she doesn’t tend to show clear
preferences for any particular things in her life. This makes gift giving a
painful proposition. We give her movies and clothes and shoes. Hair clips
and lip gloss and pajamas. If she’s not zonked out for Christmas morning,
we hold her hands and help her open them and then pretend like they're
the best thing ever and exactly what she wanted.

Grace doesn’t know about stockings. She has never had one appear at
the end of her bed on Christmas morning nor seen her brothers open
theirs. There aren’t enough things in the world to fill a stocking for her.
We wouldn’t have anything left to give her under the tree. How much lip
gloss does a girl need? And what’s the point of a stocking if you can’t eat

chocolate?

HOLIDAY All of this is compounded by to keeHMpoaytokCeuhtwohcaisorlamdteeolincRioecuchsiipl ye days.
TIP the fact that winter is chesty
season and at any given
Much of the stress during the moment, girls who live in cold
holidays comes from finding the climates particularly, can end
time to run errands and getting up in the hospital on oxygen
your home ready for family and or even life support. So I
friends. spend the whole winter
bracing myself for that
Consider hiring a babysitter to eventual possibility.
care for your Rett Girl. Today,
there are many websites that offer I know. What a downer. Merry
listings for caregivers who have Christmas, right?
experience with special needs
children. Below is a list of a few: Is there any redeeming feature in this pathetic story?

USA Of course there is.
•www.care.com
•www.archrespite.org Christmas is our opportunity to hold each other tighter. To find things that DO make
Grace happy. We take her wheelchair out on the ice and skate until her face is rosy
UK (she so loves the breeze in her face). We sing TO her. I catch the boys dipping their
•www.skybadger.co.uk fingers in their hot chocolate and giving her a taste. Finding positives is the only
•www.childcare.co.uk thing one can do in a rocky situation if you don’t want grief to eat you alive.

Also Check your local church So from our family to yours, we wish you a happy Christmas, and that you will join
and school for potential help. us in finding little treasures of joy and beauty in this season.

GOrnaeCchoerf'sisttchmheaahisrigiohsnligttoahtktsihneogfice.".

“RETT GIRL (HOLIDAY) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED 19

A FEW TIPS FOR

SURVIVINGTHE HOLIDAYS

MAKING THE HOLIDAYS A LITTLE LESS STRESSFUL
BY INGRID HARDING, GP2C FOUNDER AND EXECUTIVE DIRECTOR

a family member. Here are some being more open with those
tips I share every year with our around you about what they can
Rett community. I hope that even do to help make this holiday a
just one of these will spark some- more positive experience. Do not
thing new and positive in your try to fit your daughter into your
home this holiday season. traditional routine. It is time to
make some new traditions, keep-
Stress and Inclusion ing her needs in mind.

The biggest thing to overcome Handling anxiety and
during the holidays is just pure sensory overload --
stress. Everyone out there feels two key issues for
it, but when you have a disabled Rett girls.
child thrown into the mix, stress
can rise to a whole new level. Anxiety often comes from not
Stress of disappointment over knowing what to expect. Talk to
your daughter’s condition, stress your daughter about events
of your daughter’s anxiety as the coming up several times BEFORE
routine and activity level chang- they happen. Explain to her
es, stress of how family and where you are going, who will be
friends act towards her, stress of there, what will happen, and
travel, stress of food choices. Mix what is expected of her.
this in with some certain lack of
Sensory overload can strike us
H o l i d a y s a r e some kind of general vision we sleep and it is a recipe for disas- all. If your daughter can’t tolerate
tough. There. I are somehow all drawn to. Still ter. being amidst all the festivities –
gift opening, big dinner, singing,
not sure why I fought for this. I etc – be sure to have a plan for

said it. Just had certainly did not have those So, think about changing things
"perfect" Christmases growing around, being more open to

to get that out up. I was an only child, so things doing things differently, and
of the way first. were pretty quiet.

So instead of forcing our family
My daughter, Sarah, is 14. In the into a mold that will just always
beginning I was in a constant cause stress, we are slowly - year
struggle trying to make the by year- creating our own, new
perfect Christmas for her while "perfect." And that all boils down
also trying to make the perfect to something quite simple: quali-
Christmas for her big brother and ty moments. That can mean just
little sister. Guess what? It's one person having a moment
impossible. Why? Because with Sarah. Letting her know we
"perfect" would mean replicating love her and we celebrate her as

20 “RETT GIRL (HOLIDAY) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED

her and talk with her about it. TIP #3:

TIP #1: Wrap her gifts in fabric. Even if it SET REALISTIC
is just one of your colorful EXPECTATIONS

Tell your daughter, “Today is a T-Shirts with a big bow! It will It’s perfectly natural to experience an emotional
roller coaster when presented with the challenge
very special day. We have people look pretty, feel soft, and it will of navigating holidays with a child with special
needs. With this in mind, we suggest you set
coming to visit. If you are feeling be quiet – and she can actively realistic expectations and remind yourself that
sometimes it’s best to let go .
anxious, you can stay in your help open her own present!
• Holidays are about the kids; it’s a successful
room with your music or televi- Help from visiting family mem- holiday if the kids are happy.

sion. And then this afternoon we bers and friends: • When you feel frustrations welling up, take
a step back and focus on what you’re doing.
will have a special time where This is a great opportunity to
each person will come to you and strengthen relations with your • Allow yourself to be frustrated and anxious;
spend a little time with you and family and friends. Spending just there’s no shame in that.
give you a gift. I will help you 5-10 minutes at a time with your
give them their gift, too. Maybe daughter can be the best gift • Remind yourself that it’s OK to let go of
we can even have pictures of ever for you all. When someone certain traditions that just won’t work…
each person and you can pick you asks what to get for your daugh-
who would like to see and give ter, send them this list and ask • Ease your child into the big family
your gift to next!” them to pick something out like gatherings by introducing her to one or two
relatives at a time (instead of everybody
TIP #2: this to do together when they all at once). Some parents also send family
visit: members a letter beforehand with some
Create a more relaxing environ- suggestions about how to make the child
feel most comfortable.
ment. Rett girls usually love •Read her a book.
twinkly lights. Consider having •Brush her hair and put pretty • Rely upon an old tradition: the kids table.
them in more places than around •bows in for her. Set up a table for the kids, so your child
the tree and outside. How about •Help feed her. doesnot have to grapple with the stress of
in her room? •Take her for a walk. sitting with the grown-ups, yet still feels
like part of something special.
Traditional paper gift wrap can •Give her a foot massage.
be a nightmare. Rett girls will get •Listen to some music together. • If you have a tree during Christmas,
paper cuts and even try to stuff •Sing her a song. decorateit in such a way that satisfies your
the paper in their mouths, so •Tell her a story from your past kid’s curiosity. In many cases, this might
maybe someone else handles holidays. mean utilizing small stuffed animals instead
opening for them. But imagine of ornaments. In other cases, it might mean
nothing but plain white lights and strands
the combination of loud ripping of cranberries and/or popcorn.

paper and someone else opening D o wSRneloolnaagxdsaFtHiRoEnEREEMtucosaoilcml tisodauohnwegdlrnpeeawrytoshrtueerrenlascsxshhaieltdioisn
your gift?

bcroaiWnnlmglyeiinagfguhl.tnoeLCtcditlcoliyoiulfacntppceakaolptdmHoasbofdoeu!asrtrtrecesaaunnnpodetr

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A LIST TO HELP YOU

DAYS OFF = OFF DAYS

Keep your routine (and sanity) over the Holiday break
By: Candice Samples-Morris - RETT MOM

HOLIDAY TIP The holidays are around the corner and we all know what that means, disrupted
routines! Schools are off, therapists on vacation, and daily routines are in jeopardy
with the busyness of the season. Here are five tips I use to help keep me sane:

To help you prepare for the holidays 1. Make a list of MUST DO's.
2. I know what I can and can’t get away with when it comes to our daily routine.I
and keep you organized we have 3. DO need to give medications, feed her, give fluids, and make her smile &
laugh. I DO NOT have to give her a bath on Tuesday if Wednesday will work
compiled some of our downloadable, better for us. Knowing what I don’t have to do helps me plan out our day

organizational worksheets to help Keep your expectations reasonable.
If you aren't used to having your daughter home all day, every day, cut
you from everything like budgeting yourself some slack. More often than not, you are one person trying to do
the job of 3 or 4. There’s no way I can expect myself to accomplish all they
your holiday expenses to keeping do with my daughter at school. I don't need to beat myself up when I can't do
it all.
track of your addresses.
Take advantage of respite care.
GIFT LIST Do you have respite care hours, a nurse, a trusted family member or friend
BUDGET WORKSHEET willing to help? Use them! I know, "easier said than done," but trust me, you’ll
MASTER HOLIDAY LIST need it! I can tell when I need a little time to myself, I start feeling tired and
grumpy. If I'm not getting that time to just unwind, it makes our days that
ADDRESS BOOK much harder.

4. Be honest with yourself about what you are able to commit to.
We've all over-committed ourselves before and not been honest about our
Checktoouhtetolphviesyropturhrienvthiesoduliaddalalyeilsay.rnsecrhedule 5. limitations. I’m quick to say yes when asked for help. Then, I realize I’ve bitten
off more than I can chew, and back peddling just isn't my style. It’s okay to
HpNeatrehreeiedsnatsWrseoimncataeefnrmewsBotraremeyiaonrskse!apnwireaatyiosn? say "no" or "not right now” especially when off your routine.

Expect the unexpected.
The unexpected is going to happen and you'll have to make quick
adjustments. Recently, we found ourselves in the ER of the Children's
Hospital of Atlanta, Georgia (we live in Florida) because I accidentally pulled
out my daughters g-tube button on a road trip. We were going to the
aquarium that day, and then, the unexpected happened! Don’t be surprised
when situations ruin your schedule, learn to roll with it!

22 “RETT GIRL (HOLIDAY) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED

Rett
GIRL

GHiO LGI DuAiYd e

ONE OF THE MOST GLORIOUS MESSES IN THE WORLD IS THE MESS
CREATED IN THE LIVING ROOM ON CHRISTMAS DAY. DON’T CLEAN
IT UP TOO QUICKLY. ~ ANDY ROONEY

“RETT GIRL (HOLIDAY) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED 23

O U R B E S T H O L I D AY P R O D U C T S

HOLIDAY GIFT GUIDE

RettGirl.org's 7th Annual List of Recommended Gifts

HI TE R’ SE !Each year our Holiday Gift Guide Wrapeaze
This cozy fleece wrap that is
gets better and better! secured by a simple Velcro
closure at the neckline. With
1Spongelle just one touch point, it
provides comfort, warmth,
This Bodywash sponge is and style WITHOUT the bulk
a revolutionary new or hassle of a jacket.
technology combining -$34.99-$44.99
exquisite fragrances with wrapeaze.com
time-release lather, olive
oil and botanical extracts Quadropod
This evolutionary tripod for smartphones and tablets
2to make your Rett Girl's resembles the human body with an unlimited number
of positions and holding options. -$29.95
skin glow and her face keizus.com
smile!
-$11.89
smile.amazon.com
43SpeakerCreatures
FlatBox
These water-resistant Bluetooth Speakers This Lunchbox placemat is a revolutionary
pair with your Rett Girl's music device and lunchbox that unzips to become the placemat for
easily suction to the shower wall. Now she your lunch! Protects your Rett Girl from one of
can jam even when she’s in the tub! the germiest places in school - the cafeteria table
AND it’s machine washable!
5-$49.95 smile.mazon.com -$21.95 smile.amazon.com

24 “RETT GIRL (HOLIDAY) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED

designate GP2C as
your charity ON

AmazonSmile.com &

GI V E GP2C will receive
.05% of YOUR

PURCHASE

B A C KHooty

Adorable, fully microwavable heatable plush

6toys. These soft and furry nocturnal Hootys make

the perfect bedtime companion and are the
ultimate in functional room decor. They are
gently scented with lavender for a perfect night’s
sleep. -$16.99 smile.amazon.com
78Rainbow Dazzle Minnie MouseZubits
Magical fashion is at the tip of your Rett Girl'sThese magnetic shoe closures are quite
finger with Rainbow Dazzle Minnie! Press thesimply the fastest and easiest way to get
heart on Minnie's hand to activate the magicalin and out of your shoes!
light-up feature and design Minnie's outfit with-$20.99 smile.amazon.com
the colors of the rainbow.
9 $19.88 smile.amazon.com
Bright Beats Play space 10 Slipper Boot
This interactive, touch-sensitive light bar These slippers have a hard sole so they
features innovative Smart Touch Technolo- are perfect for walking around the house
gy that responds to touch with music, or a quick trip in and out of the car. Buy
lights, colors, sung songs & much more! a size bigger to accommodate AFOs!
-$44.97 smile.amazon.com -$11.95 smile.amazoncom

“RETT GIRL (HOLIDAY) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED 25

GIFTS 4

EVERY AGE!
THERE’S SOMETHING FOR EVERYONE REGARDLESS OF
AGE OR ABILITY!

The Rocking Hammock
There's nothing quite like kicking
back in a hammock ... and now,
your Rett Girl can delight in that
comfort in any space!
-$89.98 smile.amazon.com
1211SwitchAdaptedSpinArt PackingPup
This Ultimate Travel Companion
This battery-operated, switch-adapted Spin Art setis soft plush, gentle and
affectionate, and has your Rett
13lets your Rett Girl easily create great art using herGirl's comfort needs in mind.
switch! Includes cool neon color paints and paper.-$24.99 smile.amazon.com
-$39.95 adaptivetechsolutions.com
14FootSpa

Your Rett Girl will feel tranquil and relaxed
with a new waterfall foot bath! The full bubble
action will sooth her soles, while the innova-
tive waterfall will massage the top of her feet
and pamper her toes.
-$26.96 smile.amazon.com
26 15“RETT GIRL (HOLIDAY) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVEDPulleez
Ponytail holders with a dangling metal
charm secure hair all day without
leaving a crease. Super easy to slip on
and off!
-$16.98 smile.amazon.com

AI TW’ SR A P !GiantButterflyGarden CHECK OUT OUR PAST HOLIDAY GIFT
GUIDES FOR MORE IDEAS HERE!
16Your Rett Girl will never forget the experience of witnessing
Zoomer Interactive Puppy
the metamorphosis of ten caterpillars into beautiful Twice as smart, twice as funny and will steal
Painted Lady Butterflies. This Giant-Sized Butterfly Habitat your Rett Girl's heart twice as fast! With
has super-see-through mesh perfect for butterfly viewing. voice activation, she can teach it everything
-$26.79 smile.amazon.com a puppy needs to know. Have her use her
communication device to call it’s name and
17Liberty’sKids help it learn
-$79.48 smile.amazon.com
Give your Rett Girl the gift
to Travel back in time and
witness history in the
making with Benjamin
Franklin’s teenage reporters
as they confront the real
and physical dangers of the
American Revolution.
-$6.99 smile.amazon.com
1198MechanicalGlobe

Night 'n Day Real Solar Time Rotating
Globe is a globe, clock and calendar in
one. It shows the time of day and date for
any location on earth and lights up to
show how day turns to night.
-$139.69 smile.amazon.com
20 27“RETT GIRL (HOLIDAY) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVEDOrbeez Spa Chair
Your Rett Girl can relax by immersing her
body in the soothing softness of Orbeez.
That’s right she can literally sit in an
inflatable lounge chair filled with Orbeez.
The Body Spa features soothing vibration
and hand pouches to enhance her
relaxation.
-$22.99 smile.amazon.com

ADD IN SOME MORE FUN!

bonus gifts

IDEAS FOR NON-PRODUCT GIFTS AND STOCKINGS

Some years we realize we have just too many STOCKING
toys scattered throughout the house. No matter
how diligent we are at keeping them at bay, it stuffer
seems to be a constant fight. It’s especially hard
when our Rett Girls are so hard to shop for that GREAT
ideas

we buy anything and everything that we think

may make them happy. 1. Nail polish
2. Hair ties
Gifts are good things! But, too much of anything 3. DVDs
isn’t good. Instead of just piling up the toys and 4. Chap-stick
clothes this year why not make some memories, 5. Lotion
too? 6. Bubble bath
7. Essential oils
• Give your special Rett Girl a gift certificate for 8. Jewelry
two movie tickets and let her pick a date for both 9. iTunes gift cards
of you to go. 10. Electric tooth brush
11. Fun hand sanitizer and holder
• Give her a gift card to her favorite restaurant and 12. Funky socks
let her have a night out!

• Build a movie night basket with her favorite
snacks, a blanket and a DVD, then set a date for
a friend to come over and watch it with her.

• How about a Shopping date? Give her a gift card

to her favorite store then take her shopping so

she can pick out exactly what she wants.

aWnant to give your Rett Girl• Give gift cards to the zoo, a local museum, a
G experience of a lifetime?concert, to see the local orchestra, a play or a
ive her a trip to an indoornight in a local hotel with an indoor pool!
Chec water park!• You can even create a coupon book for your
w k out the top USspecial Rett Girl filled with things she likes to do,
ater parks heresuch as: a sleepover, baking, trip to the mall, or

family game night and allow her to "cash" in on

SeetoapliksitdsoffitlmhescHurerreentthem all year long.
CaCnr’teavteentaur"estaawycaaytiforno"mwhitohmae?moNvoiepnriogbhltemin!.

28 “RETT GIRL (HOLIDAY) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED

TIS THE SEASON

MORE WAYS TO GIVE

NOW THERE are EVEN MORE WAYS TO SUPPORT Girl Power 2
Cure while you are shopping this holiday season!

Holidays are such a special time! Picking out that perfect gift for someone and watch them open it can
be one of the best feelings ever. What if the gift also gave back to help more Rett families? Here are
three programs we are involved with that help raise the funds we need to support the community.

MIXED BAG DESIGNs GIVES BACK

Mixed Bag Designs has some really fun products! Super
colorful and super cool. Use this link to purchase and we will
receive 40% of the purchase price! Charity ID: 19091

mixedbagdesigns.com

SHOP AMAZON SMILE

If you are one of the millions of people shopping on Amazon,

it's time to SMILE! Amazon will let you link your existing

account to benefit a nonprofit . They will donate 0.5% of your

purchases to our organization. It may seem like a little, but

it adds up quickly! smile.amazon.com

TOUCHED BY FLOWERS 29

Sending flowers to a loved one? Order through this link and
kTouched By Flowers will donate 15% of your purchase to
help our cause. Campaign ID: GPC042915

touchedbyflowers.com

TPhoimswaaeGtrkievGoinafpg2ydCoTif.uofurreegrsG.edinTfactoyegm!efaCtinhkLedeIrsCoKwuatenHhciEomaRwpnEatchte

“RETT GIRL (HOLIDAY) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED

Rett
GIRL

EHd Ou cLaI Dt iAoYn

IF ALL YOU SEE IS RETT SYNDROME, YOU WILL MISS; LOVING,
S M A RT, F U N N Y, S W E E T, I N S I G H T F U L , U N CO N D I T I O N A L ,
EMPATHETIC, UNIQUELY OBSERVANT, IMPECCABLY TALENTED,
EVER SO INTELLIGENT, AND CAPABLE OF CREATING
EXTRAORDINARY CHANGE IN THE WORLD.

30 “RETT GIRL (HOLIDAY) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED

S o m a n y o p p o rt u n i t i e s awa i t

TECHNOLOGY

Holiday Cheer and Technology for the New Year

Allowing your Rett Girl to control her environment can bring her a whole new level of independence and confidence.
A PowerLink is a device that allows you to use switches to operate common household appliances. Simply plug
your appliance, for instance, a mixer for baking cookies, into the PowerLink. Next, plug your switch into the PowerLink
and now the switch controls the mixer! Try this with most any appliance or other electronics. This will allow your
Rett Girl to turn on the Christmas Lights, start and stop the train under the tree, or control your holiday music
selection!

The Tobii Dynavox PCEye Go* or I-Series+ devices take things a step
further. While the PowerLink uses switch activation, these devices
coupled with software like Tobii Dynavox Communicator allow you
to control many infrared enabled devices using only your eyes. It is
quick and simple. Just browse through a menu listing all enabled devic-
es and choose the one you want to control. Talk to your Representative
about setting up environmental controls or check out Tobii Dynavox’s
support and training pages here (tobiidynavox.com).

iPad Pro New Apps TO DOWNLOAD

The Prentke Romich Company (PRC) also offers Launching in November, the iPad •Singing Fingers: Finger paint with
an optional integrated feature pack which Pro features the highest resolution sound!
allows users to unlock the full capability of retina display of any iOS device
their Accent device including Environmental with a huge 12.9 inch screen that •Barefoot World Atlas: Fly around
Controls! Just imagine if your Rett Girl could makes everything on it more the magical, interactive 3D globe
turn on the TV by herself, select her favorite engaging! It even has four built-in and discover the rich wonders of
show or turn up the volume on her favorite speakers to create an audio our planet.
song! experience as big as its display.
iPad Pro connects to Wi Fi and •Story Land: Learn and play in a
cellular networks, so you can beautiful and unique living story
download your Rett Girl's favorite book full of fun for you and your
movies, browse the web, and share kids!
pics from virtually anywhere.
CLICK TO
CLICK TO CHECK IT DOWNLOAD
OUT

EdCuhceactkaiotonuatRl oAeutprtpGhsuigrtoel.oldisrotgwonfload

“RETT GIRL (HOLIDAY) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED 31

FUN & INTERACTIVE LEARNING

HOLIDAY APPS

THIS HOLIDAY COMBINE EDUCATION AND HOLIDAY TRADITIONS!

TRACk SAnta Glow Tunes Christmas MY HANUKKAH
AROUND THE
WORLD ON GlowTunes Christmas lets you deco- Get ready for a fun-filled Hanukkah!
Christmas rate a tree with beautiful lights that This 3D, interactive, animated app
glow and play unique melodies! let’s you set up your own menorah
Simply select a color and tap each day. Spin the dreidel to get the
anywhere on the tree to place your color of your next candle. Then light

EVE! lights, press play and watch a the candles with the friendly
dazzling show of lights and music! Menorah as your guide. Sing
NORADsanta.org features a Hear your song evolve as you add Hanukkah songs together in English
Claymation-style Santa’s and remove lights! or Hebrew with your Rett Girl and
village with all kinds of earn lots of Hanukkah gelt and gifts.
festive activities, such as Turn off the lights to see your tree
games, holiday music, Santa glowing extra bright! For even more In addition to the traditional
and NORAD-themed videos, winter fun activate the realistic Hanukkah songs, the app includes
articles about Christmas snowfall for a delightful holiday “8 Days of Happiness” tips for
traditions, and (of course) the scene. Love what you created? Use parents, resources and guides for
Santa tracker powered by the save and load functions to store creating meaningful and lasting
Bing Maps. As Santa makes your creations and show them to family Hanukkah experiences.
his stops along the way you’ll your friends and family later! play.google.com
be able to see a curated Bing itunes.apple.com or play.google.com
results page with facts and PNP Santa
images about each location. Toca Hair Salon Christmas
Portable North Pole is a magical
Yo u c a n d o w n l o a d t h e Cut, color and style Santa Claus' App used by Santa and his elves to
NORAD Tracks Santa app for beard and hair! In this Christmas send personalized and extremely
Android, iOS, Windows edition of the smash hit Toca Hair realistic video messages to your
Phone, and Windows 8.1 Salon, you can choose between Rett Girl. In just a few simple clicks,
tablets.

styling Santa Claus or a funny you can provide Santa with all the
Christmas tree! And best of all? It's information he needs to create a

completely FREE! unique, tailor-made video message

BONUS - Introducing: accessories! that would even bring a smile to
When you've finished cutting and Scrooge’s face!

coloring, you can add eight different The app also gives you the unique
accessories to your look. Loads of ability to create personalized phone
calls for your nearest and dearest
Free apps al year long! Visit extra fun! from jolly old Santa, too.
Smartapps fHorERSEp!ecial Needs itunes.apple.com or play.google.com
itunes.apple.com or play.google.com

32 “RETT GIRL (HOLIDAY) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED

Let THE LIBRARY COME TO YOU

HOLIDAY BOOKS

THREE BOOKS WORTH READING THIS HOLIDAY SEASON

Trees of the Dancing GLITCH -The Aldo Julie Andrews' Treasury
Goats Zelnick Comic Novel for All Seasons

by Patricia Polacco by Karla Oceanak by Julie Andrews

CliCK TO PURCHASE CliCK TO PURCHASE CliCK TO PURCHASE

Trisha loves the eight days of The Zelnick family likes Christmas A vast array of poems old and new
Hanukkah, when her mother stays a lot, but Aldo—whose plan to get joyously celebrates each special day
home from work, her Babushka presents galore may be running of the year, telling of New Year's
makes delicious potato latkes, into a glitch—does not. He thinks resolutions, Valentine's Day love,
and her Grampa carves wonderful that “giving being better than Easter parades, Fourth of July
animals out of wood as gifts for receiving” is gobbledygook and fireworks, and more. From the cold
Trisha and her brother. In the doesn’t understand what the of winter to the new hope of spring,
middle of her family's preparation “Adopt-a-Family Tree” at the mall the brisk fall to the steamy summer,
for the festival of lights, Trisha has to do with him. Guinness Caldecott Honor illustrator Marjorie
visits her closest neighbors, World Records, holiday gnomes, a Priceman's vibrant watercolor
expecting to find them decorating glass-blowing grandma, and paintings ring in every month of the
their house for Christmas. Instead generous helpings of goofiness year, bringing each season to joyful
they are all bedridden with scarlet abound in this seventh life. Featuring verse from favorites
fever. Trisha's family is one of the installment in the series. A like Walt Whitman, Jack Prelutsky,
few who has been spared from the vocabulary-building glossary of and Langston Hughes and poetic
epidemic. It is difficult for them fun and challenging words that lyrics from the likes of Cole Porter
to enjoy their Hanukkah feast start with the letter G, such as and Oscar Hammerstein, plus
when they know that their gumption, gloat, and gadzooks, is heartfelt introductions by Julie
neighbors won't be able to also featured. Andrews.
celebrate their holiday so she
comes up with a plan. Based on a
long cherished childhood memory,
this story celebrates the miracle
of true friendship.

cCahnecpkerosuotnathRliizseettaapGpbirolw!ohkefroeryyoouur ReaondlinbeofowlirkbyoistrmohauOrjNOugynsLeteIttNMhaaEaont!mreyaoWSuomuisttaeohczracayinln.iccgsokaum!bccsecsrisption

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E D U CAT I O N I S I M P O RTA N T !

RETT UNIVERSITY

THIS HOLIDAY SEASON TAKE ADVANTAGE OF OUR SCHOLARSHIP, TAKE
A CLASS OR GIVE THE GIFT OF EDUCARION

RETT UNIVERSITY ON-LINE SCHOLARSHIP PROGRAM

Every year, Rett University awards scholarships quarterly to students who want to take our online courses, but
are unable to do so because of financial need. This online �financial aid program is funded and maintained by
Rett University, Girl Power 2 Cure and their partners as part of our mission to help all Rett University students

access quality education provided by world renowned Rett
Syndrome Specialists. Awards are based on financial aid need
$100 and are available to international students as well.

CLICK HERE FOR OUR scholarship application form and
submit by the deadlines listed below.

R E T TUNIVERSITY SCHOLARSHIPS ARE GRANTED QUARTERLY:
•APPLY 10/15 TO 11/15 for December 2015
GIVE THE GIFT OF EDUCATION! •APPLY 1/15 TO 2/15 for March 2016
•APPLY 4/15 TO 5/15 for June 2016
•APPLY 7/15 TO 8/15 for September 2016
•APPLY 10/15 to 11/15 for December 2016

Still looking for the perfect holiday gift for your

daughter’s teacher, grandparents, or therapist?

Why not surprise them with a gift card from

Rett University? Click Here to Purchase

"Just Added"get started with one of our classes today!

GETTING STARTED WITH TOBII EYE GAZE

Guided reading for girls with Rett Syndrome Part 1

Guided reading for Girls with rett syndrome part 2

The power of music in Clinical research and practice CFhliepckBoouRotkesotutar-vaUnielawSblteCoonrmoewmuantictahteion
Emergent literacy for girls with rett syndrome part 1
Emergent literacy for girls with rett syndrome part 2

34 “RETT GIRL (HOLIDAY) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED

Rett
GIRL

HOLIDAY
Research

THE MOST DRAMATIC EVIDENCE THAT OUR SCIENCE IS MATURING
AND THAT PROGRESS IS BEING MADE IS THE INTEREST IN RETT
FROM PHARMACEUTICAL AND BIOTECH COMPANIES. I’M
SOMETIMES TEMPTED TO PINCH MYSELF TO MAKE SURE I’M
AWAKE AND NOT DREAMING. SCIENTISTS STUDYING MANY OTHER
DISEASES INCLUDING AUTISM WOULD GIVE THEIR RIGHT ARMS TO
BE WHERE WE ARE AT THIS VERY MOMENT. ~ MONICA COENRAADS

“RETT GIRL (HOLIDAY) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED 35

RAISING CRITICAL RESEARCH FUNDS

HOPE FOR A CURE

THE RESEARCH WE ARE FUNDING THROUGH RSRT is leading our
community into innovative treatments & potential models for

a cure for our girls

Meet some of our girls! Representing 45 U.S. States and 11 countries. These girls share their stories through a
custom web page on the Girl Power 2 Cure website. All donations made through these pages are dedicated to the
Rett Syndrome Research Trust’s research program, our research partner for the past seven years.

358 45 11girls
US States Countries

Mia Crystal Bentlee
(Ohio) (District of Columbia) (Canada)

Nadia Myiah Tianna Annelise Nikole
(Nevada) (Oregon) (New Jersey) (Australia) (Indiana)

RSRT funds more research than any

other Rett organization in the U.S. and

abroad. Since its inception in 2008,

RSRT has awarded $26 million to

research, more than half of that in the Identifying alterations In every cell that has a
last two years. in other genes that mutated Rett gene a silent
make the Rett mutation healthy copy lies dormant.
Girl Power 2 Cure is one of the many less severe. If we could find a drug to
awaken it we could, in
theory, cure Rett.

organizations worldwide that is

contributing to RSRT’s research funding.

To date, we have granted $1 million to

RSRT. For more information about RSRT, Delivering healthy Testing drugs that
log on to reverserett.org. copies of the Rett gene could improve Rett
to compensate for the symptoms.

mutated ones.

36 “RETT GIRL (HOLIDAY) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED

MEET AVA!

GP2C Girls Pages

OUR GIRL’S PAGES share your daughter’s story and help raise
funds for a cure

Ava’s Story VISIT GP2C

Ava is a beautiful, loving, funny little lady. We are so thankful to have gp2c.org
her in our family! DONATE
gp2c.org/donate
SswuvbhtAaesaievirrnlnaktyhdhg,wasidbnmpsaaugiasycat,fdtgriruatsria.anermmSegadhnteacaeos.akleristuWndnhengsdeosdeuapawengorrrieohdfsthtghssahrouhRneemepserdstrsiiotosPwarSuauiyadldtnonhn.atoddStbafhrhalnoweeemdvhthheoaieearstyltsaplaaenblfaoskeertrfawvornvhoeriewrennurbseggspneeeltikieeortssnwtiictlgae.aobnfbmgtrelliaaerrmclnhtesugosehunrsaeaitsncaigesadnec!t,doesnohdre is STAY IN TOUCH
fb.com/gp2c
@gp2c

scdfswlAaroohirvievceemaentwoosidmsrfips'lthi.slenwAeboogorapffi,f.ubalaSecnbnnh,elnddaeseyn-awaa-dtnlhahasdatanoicnllystfhlgh,omoiaovnafinebugltesdohgcmhtueamhmtrsueteAho!serveiSoetcashsnm,tiefsbsrao.omityefhontugakhdestsetts,skodihwcnvaeeheoyaecrwabwrrfeestthvaoheeemlreulryms,tshegaheeloryde'eisnlgitosnaogevkebteeisoinsn.gcggShghohgeruieoornrougcdphtso, C L I C K H E R EAffoTavormatl&ihelieaeaemrlsnnlieownmrusigotrpyhrgierweieravelusbehsroayautnvodtderofi.touhgprheoigtrfirls
owahAuchevrcraoowliamisotrtrteplhledlpaissrniihasskyetmfeidunroltgCroteofegocbehreteaholaivueauer.rt!TmigWfhuiareelln.ybayWermefceraaivaekuernesredyeasstooghafrlanehunadecktrkfftyajueomtlayofmfioulkyrlnawtnohhwdeoamalrnoeadvnaeylbo,hlvmeeerta,oAnivngyace,pltuaeandoldiponltge
smile and kind heart.

GIinrltserpeaIstgt’seeCdEfloianircssyyktoa&uHrrtFeiRnrrgeeeteta! Girl? 37

“RETT GIRL (HOLIDAY) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED

TOGETHER FOR A CURE

DISNEY PRINCESS

Join over 75 Rett families in Florida February 19-21, 2016
AT OUR 5TH ANNUAL PRINCESS RACE AND RETTAWAY

DETAILS: You don't have to be running to enjoy this amazing "Rettaway"
weekend! We need cheerleaders out on the course and
� FEBRUARY 19-21, 2016 volunteers at our booth, too! PLUS, we have other great things
� DISNEY WORLD - ORLANDO, FL going on designed especially for Rett families: a workshop with
� WYNDHAM LAKE BUENA VISTA Susan Norwell, a family pizza party by the pool, a fun Saturday
night dinner, and more! This is our biggest fundraiser for research.
RESORT Help us make it the best ever!
� WWW.GP2C.ORG/RETTAWAY

SCHEDULE OF
EVENTS:

�2/18 - 2/20 - EXPO BOOTH

�2/18 - 1-ON-1 SESSIONS WITH Disney Princess 2015!
SUSAN NORWELL

�2/19 - RETT U LIVE! MORNING OR
AFTERNOON WORKSHOP
WITH SUSAN NORWELL

�2/19 - 5K RUN AND EVENING TELL ME MORE ABOUT THE WEEKEND!
POOLSIDE PIZZA PARTY
This is our 5th year participating in this Disney event. We'd love
�2/20 - 10K RUN AND TEAM for you to join us for this amazing weekend filled with
DINNER opportunity to learn and connect with other Rett families. From
volunteering side by side at our booth to just lounging by the
�2/21 - HALF MARATHON pool, there is something for everyone! We have discounts for
hotel and park tickets to share with you, too.

Visit www.gp2c.org/rettaway for more information.

andwJikoteihenpotyhuoerulFrastBeelsfpt gudpedtaatilesd38 “RETT GIRL (HOLIDAY) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED

SUBSCRIBE TO THE GUIDE!

Subscribe to our Rett Girl Guide and be the FIRST to receive our
quarterly online magazine jam packed with the best tips,
products, recipes, activites and some pretty great articles!!!
PLUS be the FIRST to know about special coupon codes on
products from our partnering companies AND our monthly FREE
Giveaways!! Subscribe HERE on rettgirl.org.

CONTACT US! ADVERTISEWITH US

• WEBSITE: • SOCSIAUL MBESDCIAR: IBE! Hit your target market and make an impact in the lives of our Rett Girls!

www.rettgirl.org fb.com/rettgirl Help Sponsor our Rett Girl Guide by advertising with us! For more

information and to see our Ad Specs contact Bridget at

• SHARE! pinterest.com/rettgirl [email protected] rettgi rl orgTHE EVERYTHING RETT SITE
rettgirl.org/submit @rettgirl

We hope you have enjoyed our printed version of our online resource guide! To access the 39

digital version so you can follow the links go to: www.rettgirl.org/guide

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Giving TSPuueopswpdeoarrytof(G12Py/o21uC/r15oG)niwftith the WWW.RETTGIRL.ORG/GUIDE

Wfteaehdmeuericdaliaueptcsiosa,rttsse & Wfsaeumpoipflyofertr Rett & aawRnaudnrehwneeliptshsuTsfoerraamRiseeGttpf2sucnydnsdrome
Wawe acrreeanteess GIRL tWhee icnosmpmiruenityfrWiensedefaaurnccduhrteo

HOLIDAY

Guide

RETT

UNIVERSITY

“RETT GIRL (HOLIDAY) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED