Rett Girl Summer Guide 2015

Rett
GIRL

SUMMER

Guide

1. WELCOME!

2. To our First EVER issue of Rett Girl Magazine! We are
so excited to bring this to all of our Rett Families!
SUMMER IS HERE. And what a perfect time – SUMMER!
That means school is out - bring on the vacations,
pool parties, bbqs....and the STRESS?!?!?! As a Rett But first, let me introduce myself. My name is
Mom myself I get it - along with the summer fun Bridget MacDonald, I’m a wife to a wonderful man
comes the change in schedules and routine and that and a mom to 4 awesome kiddos! My second oldest,
can be rough! We want to help make this summer a Annie, has Rett Syndrome. I have been working with
little more fun with A LOT less stress! Girl Power 2 Cure and RettGirl.org for several years
This is our FIRST EVER issue of our Rett Girl Magazine now.
and it is FULL of activities, tips, products and even
some recipes that we hope help make this summer a I know how busy life can get with kids, commit-
huge success with your Rett Girl (and your ENTIRE ments, school, sports, therapies, doctor appoint-
family!) ments, and everything that Rett Syndrome brings
So - bring on the lemonade and laughs - this is going with it. Which is why I am so very passionate about
to be a summer to remember! RettGirl.org! The site for EVERYTHING Rett
Hugs from my family to yours, Syndrome that is designed to assist families with
Kelly Butler everything from products to recipes to DIY’s and
Family Support Coordinator everything in between!
Girl Power 2 Cure
[email protected] Our Rett Girl Magazine was created to go even
further and highlight some of the best finds for each
season - delivered in a fun, inspiring and easy to
access format that you’ve come to expect from us!

We hope that you will find TONS of ways to make
this summer a little less stressful and a LOT more fun
for you, your Rett Girl and your whole family!

We also know that YOU have some amazing ideas
and products of your own - We will be looking for
things to feature in our next issues so we invite you
to take a moment to share with us!

Here’s to a Healthy, Happy Summer!

Bridget MacDonald
Rett Girl Coordinator
Girl Power 2 Cure
[email protected]

1.2B. Kreidl yget& &BrAononkliyenwith little sister Grace

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Rett
GIRL

SUMMER

Guide

Morning’s soft air, touching everything with such care.
Caresses a young face in a quiet secluded place. Smile
planted strong. Heart beating on. Only one thing is on
her mind, and that is summertime.

We’ve broken our Summer
Rett Girl Guide down into
e i g h t fa b u l o u s cat e g o r i e s .

Click the category to navigate to each section

3 Activities Amazing list of activities to do this summer!

10 RECIPES Delicious dishes the whole family can enjoy!

15 TRAVEL Tips to make travel EASY (ok, easier!)

17 Products Must have items for this summer.

20 Reading FUN Top book-to-movie adaptations by age!

25 Rett-U School is out but the learning is just beginning!

26 Camp Amica At-home summer camp designed just for her!

27 gardenofhope Growing hope in YOUR hometown!

2

Rett
GIRL

SUMMER
Activities

THE FIRST WEEK OF SUMMER IS GLORIOUS. BY THE SECOND
WEEK, YOU ALMOST WANT TO GO BACK TO SCHOOL
EARLY.....SHAKE THAT THOUGHT OUT OF YOUR HEAD. THERE'S A
WORLD OF MANY ACTIVITIES OUT THERE, SO TAKE A LOOK AT
OUR LIST AND SEE All THERE IS TO SEE AND DO WITH YOUR
AMAZING GIRL!

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SPEND SOME TIME Outdoors

HOME CAMPOUT

Turn your bac kyard // LIVING ROOM into a campground!

All kids like to camp out! Pitch a tent in your OUR
back yard if your Rett Girl is able to handle
that. If not, set up some air mattresses in the CAMPING
basement or the family room! If your daughter TIPS

is tube fed, remember that the pole is mobile! 1. Select your campsite : Backyard,
Wheel it into your room and sleep with her on basement, or your daughter’s room.
blow up mattresses, into siblings room so they
can have a slumber party or have the siblings 2. Pitch your tent. You can use a real one or
sleep in her room if that's where she's a few sheets and some chairs or couches..
comfiest. Just make it FUN! Bring out the 3. Set up your sleeping area. You can use
flashlights and make shadow puppets. This is sleeping bags, air mattresses or even sheets
the perfect time for some storytelling too! and cushions.
4. Spice up your area with Christmas lights,
For s’mores, head outside for the evening, set warm up your sleeping bag with a warm
up a bonfire/grill. Can't swing a fire? No bottle of water.
problem, the oven can work too. Layer graham 5. Cook up some S’mores!
cracker, chocolate and a marshmallow on a 6. Break out the flashlights and tel stories and
cookie sheet and broil in the oven until the sing songs!
marshmallow is golden brown, pull them out
and top with another graham cracker - then
enjoy it outside! (TIP - marshmallows are

gluten-free and check your grocery store for Chaonw’tthoemadakoeutinsdidoeorfosr’mso’mreosr!esC?LIFCwiKn•dwH•CoEwuRhtWe.EnrGcaeaekRennxsetttyostewcueitpartrohmsvvetehaeWhpreneaeaiandeicbmnRdgaidsmetteoheristuripaepeetisgrUcrfvaooSaenAru.dAycnodocmumaremripca?
gluten-free graham crackers if needed.)

If camping is not your thing or your daughter’s,
head out to your local park or just spread a
blanket out under a tree in your yard. A little
dose of nature does a body good. Listen to all
the sounds and talk about what you hear.

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PAmper Her!

SPa DAY

Turn your HOME INTO A SALON JUST FOR HER!

Every Girl ‘s a Spa Day bjuegsIltfitTtoltoyaooeiopoMnrskssBu-ne!hafm:irxaoioDtvniaddaeuloy3yaalind!l-amusad4eGbgpmcaillhtoeiasntoetotlueiatanse'ornstsrttopaohscfatoonrmiofasdgcnkflagipssttkttleeietoseontdtrfetstoi.hhr'riAsAteeei-avsploaeQtY.pepRhUlsyopVokeIulCeimfminrcoKde,areaomuDt.nalisbOoR’oteteYsnnirwohaenenitamaatvoiwnemisplturiieeptyswtrhroeoy!efliinnhseehawvoer

BODY ART 5

BODY TATTOOS

FACE PAINTING \\ body painting

Face painting/body painting - Kids LOVE to get
their face painted at fairs, why not do it at
home? Check out this Klutz Body Crayon Book
and get creative drawing on bracelets and fake

HowflainpadbflooDupoFtsw!icnnrldeoaaotduintoguhorywocuuHrteeorwdeenstiganttso!o?

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Music is healing to the soul

MUSIC THERAPY

Learn more about our music therapy activities and songs

GIRL POWER MUSIC THERAPY

Therapy Fun.... We realize that these two words might
not typically go together but we think they can! You
can work in some therapy with your girl and they will
be having so much fun, they wont even realize they are
getting in their OT, PT, and Speech with our GP2C music
download and therapy guide!

Listen to music samples thaDtoTewahneclohbacodoomktlheetewCaicDtthivcaiotynctoabrironeossklpentoinnoednilsnyognHagscetirviety. 6

I T ' s a l l a b o u t t h e b e at

MUSIC & DANCE

DANCE PARTY 101

Let’s Dance!!!

Let your body feel the beat and put together a Dance
Party ! Crank the music and DANCE! You can even buy a
mini disco light to add to the fun!

DoIntS’’tsighFnarvueepeymafouounsrrdicPRcaieantnntydGboorueiarrlp’siReprotasaddo?sin0tNae.oliHzweedorrtreoies

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

HEad out the door!

COMMUNITY OUTINGS

So much going on this summer - won’t you join?

A Summer to SUMMER READING PROGRAM Go to the movies!
go out!
Visit your local library for a reading Check out the deals at Cinemark
These next activities do program where your Rett Girl can theater if you have one near you.
require leaving home and earn some fun prizes. Or check out Or, if your Rett Girl gets antsy at the
we understand if this this one from Barnes & Noble - you theater check out Sensory Friendly
might be tough, but we read 8 books to your Rett Girl (or if Films that may be playing in your
encourage you to try! she can read you can have her do it) area.
Maybe invite one of your then fill in the form and take it to
daughter's friends to tag your local Barnes & Noble so she VISIT YOUR LOCAL ZOO
along for an extra set of can pick out a FREE book!
hands. Need additional Many zoos offer special services,
help? Check with your local Museum discounts, and we even found some
church, college, or commu- free admission for kiddos with
nity center - often times Check out a museum in your area. special needs so be sure to check
people are looking for a Kids' hands-on museums are great! with your local zoo on what they
way to help their local Your Rett Girl may not be running might have to offer your family!
community! around and interacting with every
experiment, but she'll be able to do Read a book and
some of them with help and it's a watch the movie.
great learning environment.
It's always fun to read a book
MansyumtRhmeeeaargntedparrslCicoCiinnfgifene,mrechmdaeirscakcksoouuntted Visit an Adaptive Playground together and then go check out the
movie to see how it compares. One
Here is a list of some of the coolest of our favorites is Judy Moody and
ones around. the Not so Bummer Summer! Grab
the book at your local library then
Kids Bowl Free watch the movie on Netflix.
Looking for an ENTIRE list of book
& movie suggestions? Start HERE.

sign up HERE.

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Visit your local farmers GO TO YOUR LOCAL BEACH OTHER IDEAS
market LIST
Let your Rett Girl feel the warm sand
There are LOTS of great reasons to against her feet. Did you know that 1. Vsitsoirteyour local pet
take your kids to your local farmers there are over 200,000 nerve end- 2. Visit a local farm
market - here are 10 great reasons! ings on the soles of your feet? 3. Head out to your
Splash some ocean water on her
Visit an indoor playground skin. The ocean contains many local seaquarium
minerals that help the body heal and 4. Get together with
Indoor playgrounds are popping up detoxify. Let her get some sun, a
everywhere and many of them are great source of vitamin D. family & friends
sensory-friendly & parent-friendly 5. Head to the pool!
which means you can hop right in BUTTERFLY &
and enjoy the fun or help your Rett BOTANICAL GARDENS
Girl navigate, play and slide.
Visit a local botanical garden, where
Ride Bikes! your Rett girl will smell exotic plants
(we bet you’ve never smelled a
If your Rett girl doesn't have a bike popcorn plant), embark on nature
yet look into it HERE. trails and more. Plus, many gardens
Bikes offer lots of benefits and offer special events, particularly
they're just FUN! Here is a link to a during the summer season. Here are
Special Needs Bike Trailer by Wike 10 of the most beautiful in the USA.
and something called the i-GO!
ctWootinthrhseetcLtenoehligiaagsntrhAintiozpnesapsbktyohauenmtdtihhneow aSctoifmvoitertyia,mieswsatotlkh.jeu..s.btegsto
National Parks Pass

Did you know that you can get into
any National Park in the nation with
a free Access Pass! This pass covers
the disabled person and everyone
riding in their vehicle.

VISIT YOUR LOCAL Planetarium

Planetariums have wonderful
exhibits. There are about 1,000
planetariums in the United States,
ranging from small ones that hold
about 20 people to giant facilities
with 300 or more seats. Here is a
list of 6 to get you started.

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YOU CAN DO IT!

DIY FUN!

Feeling a little (OR A LOT) ambitious? We have a few DIY
projects ranging in degree of difficulty for you!

MAKE YOUR OWN SPRINKLER

This style allows you to push your daughter through in her
wheelchair! This is TONS of fun, but you may want to set it
up the night before, they say it takes a half hour but I'd give
myself an hour for sure! Instructions and supply list here

Mess-Free- Finger Painting

Check it out HERE! Great for our girls who hand mouth,
you don't have to worry about them eating the paint!

GLOW-IN-THE-DARK BOWLING Pyuotua#rnssdogumlohmewasmF-ihnelto-arwtghpeeoru-dwsPaeovriwrkatebihrnoestwtfaalltinogorgowaspemiornns

All you need are some glowsticks, water bottles, and a
ball! Glow Bowling with your girlie will be a BLAST.

COOL OFF NECKLACE

Our girls can look COOL and stay COOL with this
cool off necklace.

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Rett
GIRL

SUMMER
R e c ip e s

THE FOOD ONE EATS CAN BE THE SAFEST AND MOST POWERFUL
TYPE OF MEDICINE.......

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AN INTRODUCTION TO

BLENDED FOODS

A HEALTHY ALTERNATIVE FOR RETT GIRLS WITH A G-TUBE

IMPORTANT Are you relying on formula to feed your daughter through her G-Tube? Have
TIP! you heard about a healthy alternative called a "blended" or "blenderized"
diet?
If you are interested in
trying a blended diet, we A blended diet is simply taking everyday foods and blending them so they
encourage you to speak can be given through a feeding tube. A blended diet can be very
with your child's physician. intimidating at first (it's much easier to open a can and have peace of mind
Also, plan to make the tran- that "everything is in there") but don't over think this one. Think about how
sition very slowly. Summer you eat, how your other children eat and how your Rett Girl ate before
is a great time to start on getting a g-tube. A blended diet is as easy as preparing a meal - then blend-
this journey while they are ing it into a soup-like texture! (note: you will need a blender with a soup
out of school and you have setting to get it to the best consistency).
more flexibility with their
schedule. A blended diet is perfect for those who have food allergies or intolerances
and those who are looking to add more fat, calories or proteins. Your Rett
Girl will essentially be able to eat the same nutritious foods you serve your
whole family.

We're here to give you a starting point and the resources you need to make
an informed decision about blending.

TVoisRiteatdhMe oRreetatboGutirBl leBndloegd DHieetsre Breakfast (calories) LUNCH (calories)

FoafrfmmeCereMhareot'casrsgkrMak&oentuaditcraDktifierhrrtyeesecspUthorSrovydDeugAceHttsaEFb. RalerEsm, er's Makes roughly 300mls Makes roughly 300mls

•3 oz coconut water (25) •4 oz cooked chicken breast
•2 tablespoon of honey (140) (boneless skinless) (130)
•2 tablespoon peanut butter (190) •1 apple (72)
•1 pear (100) •8 walnuts (200)
•1 tablespoon coconut oil (180) •1/4 cup sweet potato (30)
•4 oz of rice milk (65)
*Mix on soup setting in a Vitamix
or Blendtec blender and it is thin *Mix on soup setting in a Vitamix
enough to use with a feeding or Blendtec blender and it is thin
pump! enough to use with a feeding
pump!
*Raw, local honey can be used to help with

allergies! AND your morning vitamin can be
thrown right in the blend - liquid OR capsule!

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recipes

GLUTEN-FREE FOODS

Perfect recipes for the summer that everyone will love!

A favorite summer activity is getting together with family and friends for a cookout, however,
somewhere between the hot dogs and the pasta salad a gluten-free kiddo can feel kind of left out, and
hungry! Don't worry, we've got you covered with a few ideas! Check out these great gluten-free recipes
that are perfect to bring to a cookout so your Rett Girl has something great to eat (that everyone else will
love, too).

Cob b Eg g S a la d - f rom kitchendaily.com

Ingredients

• 3 tablespoons nonfat plain
yogurt

• 3 tablespoons low-fat mayo
• 1/4 teaspoon garlic powder
• 1/4 teaspoon ground pepper
• 1/8 teaspoon salt
• 8 hard-boiled eggs (see Tip)
• 1 ripe avocado, cubed
• 2 slices bacon, cooked and

crumbled
• 1/4 cup crumbled blue cheese

Serving Size PREP TIME TOTAL TIME

4 15 15

MIN MIN

DIRECTIONS

Museum

1. Combine yogurt, mayonnaise, garlic powder, pepper and salt in a medium bowl.

2. Halve eggs and discard 4 of the yolks (or save for another use). Add whites and the remaining 4 yolks to the
bowl and mash to desired consistency. Gently stir in avocado, bacon and blue cheese.

Tip: To hard-boil eggs, place eggs in a single layer in a saucepan; cover with water. Bring to a simmer over
medium-high heat. Reduce heat to low and cook at the barest simmer for 10 minutes. Remove from heat, pour
out hot water and cover the eggs with ice-cold water. Let stand until cool enough to handle before peeling.

To Make Ahead: Cover and refrigerate for up to 2 days.

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Sandwiches are an American staple, they are one of the most popular midday choices of on-the-go
Americans. They're quick, delicious, and can be eaten for breakfast, lunch and dinner. Here is a great
version of the Gluten Free sandwich from Joyous Health. “The blend of flavours — from tangy to sweet
— and the varied texture make this recipe a winner. When choosing a gluten-free bread, look for loaves
made with brown rice, almonds, quinoa or millet.”

G lu t e n - F r ee Chick Pea A pple Slaw - from Joyous Health

Serving Size PREP TIME TOTAL TIME Ingredients

4 15 15 • 1 Granny Smith apple, peeled
and grated
MIN MIN
• Juice of 1/2 a lemon, freshly
squeezed

• 14 oz can of organic chickpeas
or navy beans, drained and
slightly mushed with a fork

• 1 carrot, peeled and grated
• 1/4 cup pumpkin seeds
• 1/2 cup dried cranberries
• 1 tsp red wine vinegar
• 1 tsp walnut oil
• 4 slices of your favourite

gluten-free bread, toasted

DIRECTIONS

Combine yogurt, mayonnaise, garlic powder, pepper and salt in a medium bowl.

Squeeze the lemon juice onto the grated apple. Mix the aMppulsese,ubmeans, cranberries, sunflower seeds and carrot

together. In a separate dish, mix the red wine vinegar together with the walnut oil. Add the dressing to the apple
mixture, and spread on your favourite toasted gluten-free bread.

You can serve this as lunch for two people, or on crackers as a appetizer for an afternoon picnic or barbeque.

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Chocolate Chip Banana Squares - from Brunch at Saks

Ingredients

Serving Size PREP TIME TOTAL TIME • 1 1/2 C. gluten-free flour
(Use a mix of Bob's Red Mill
4 20 45 white rice flour, tapioca flour,
potato starch)
MIN MIN
• 1/2 tsp. gluten free baking
DIRECTIONS soda

Preheat oven to 350 F. • 1/2 tsp. baking powder
(Use Rumford's because it's
Museum aluminum-free)

Line a 9x9 square cake pan with parchment paper. Set aside. • 1/4 tsp. salt
• 2 ripe bananas, mashed
• 5 Tbs. coconut oil

(or any vegetable oil)
• 3/4 C. cold water
• 1 tsp. vanilla
• 1/2 c. chocolate chips

(Enjoy Life are gluten, dairy,
soy, nut -free).
• Optional: ADD 1/2 C. of
walnuts

In a bowl, mix flour, baking soda, baking powder, and salt. In a separate
bowl, mash bananas and stir in oil, water, and vanilla until well blended.
Make a well in dry ingredients and pour in wet mixture. Stir until just blended. Add in chocolate chips and give it
one last toss. Pour into prepared cake sheet.

Bake 40 min, or until toothpick comes out clean.

Have a great recipe?
Email us & it could
be featured in our
Photos by Brunchatsaks next guide this fal

MUSEUM

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Rett
GIRL

SUMMER
Tr a v e l

TRAVELING WITH YOUR RETT CHILD CAN BE STRESSFUL, SO MANY
TIMES IT SEEMS EASIER TO STAY CLOSE TO HOME – YOU ALREADY
KNOW WHERE EVERYTHING IS. WE WANT TO ENCOURAGE YOU TO GIVE
IT A TRY! IT’S MORE THAN WORTH THE EFFORT. IT'S GOOD FOR YOU
AND YOUR CHILD! HERE ARE SOME TIPS TO MAKE IT EASIER....

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JOIN THE ADVENTURE!

TRAVEL

IT’S A GREAT BIG WORLD OUT THERE - SO MUCH TO EXPLORE!

We think you will agree that the most GET A NOTIFICATION CARD A COOL TRAVEL
stressful part of travel can be just MUST HAVE
getting through security at the airport! This card is presented to TSA before
the screening so that you do not

TSA CARES have to talk about your daughter's Place this on your child's
disability in front of her. seat when you get out of the
Helpline: 1-855-787-2227 car to keep it cool while the
TSA Cares is a help line that assists Traveling with a special-needs child car is parked. Then when you
travelers with disabilities and may never be easy. But hopefully these come back to the car,
special medical conditions. TSA additional tips can make it a little less remove/fold away and your
recommends that passengers call stressful. child's seat will be cool
72 hours ahead of travel for more enough to sit on right away!
information about what to expect Medical ID bracelet NOTE: Your child does not sit
during screening.
This bracelet is a great idea for any on the cooler. CLICK HERE
Request Passenger Support time if your daughter has seizures,
is on medication or has other issues to buy yours today!
- but especially needed when you

TSA's offers a program that allows are traveling to assure she will get

individuals with disabilities to the best care in the event of an

request their very own Passenger accident or separation from you.

Support Specialist. They identify

and resolve all travel-related S P E C I A L N E E D S T R AV E L W E B S I T E

screening concerns quickly to Specialglobe.com was started by a
enhance the traveler experience. Rett mom! This travel website is
More than 2,600 Passenger Support dedicated to special needs travel
Specialists at airports across the and helps families book custom
country assist passengers who trips, hotels and special needs
require additional assistance with iteneraries.
security checkpoint screening.
PaRckeitnttgraalGigmveiharlt. lzCiisPnhegicantktimpoesuurostenttsfhttoehrseBetoodaaryd’s

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Rett
GIRL

SUMMER
Pro ducts

WE HAVE SCOURED ONLINE TO FIND AMAZING PRODUCTS THAT
YOUR SPECIAL RETT GIRL NEEDS THIS SUMMER! WE ARE RETT
PARENTS, TOO, AND KNOW HOW HARD IT CAN BE IN WARM
WEATHER!

“RETT GIRL (SUMMER) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED 17

PERFECT SUMMER PRODUCTS

OUR TOP LIST

if you dont hav e one of these products // it’s a must!

SA PR OLUANSDH!At the pool, at the beach or the lake, Swim Diaper
We realize there is a
these will surely be a big hit! challenge once our girls
have outgrown those
1Nekdoodle Huggies swimmers - no
worries there ARE options
Water is such great that help get our girls back
therapy. Just the pressurein the water without the
of the water on muscles worries of a mess! They are
has great benefits. Use not disposable, but they
this neck support to make work great!
your daughter feel secure
while you help her float Aqua Jogger
Does your girlie need a little
2and relax. extra support in the water?
43Versa-brella This swim float might do the
trick!
Clamp this portable umbrella to a
stroller, wheelchair or beach chair for Orbit Arizona Mister
Not just for fancy resorts!
5instant shade! Have a garden hose? Create
a mist with this cool gadget
to stay cool outside!

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OUTSIDE Frog Toggs
STAY COMFoRTABLE OUTSIDE & Summer brings the HEAT
HAVE FUN PLAYING UNDER THE which can bring misery for
F U NSUMMERsUN! our girls - products like
FrogToggs can allow our
girls (and us) to keep our
cool!

Cool Mee Seat Liner 9687 Earmuffs
Help keep your daughter These are not the kind to keep
cool in her car seat or your ears warm! These are noise
stroller. cancelling headphones - we
know some girls who were able
Special Needs Swing to enjoy summer parades and
Does your girlie need a little extra fireworks for the FIRST time
support when it comes to swinging? thanks to these little gems!
We LOVE this special needs swing! It is
the perfect addition to your backyard Electric Travel Cooler
swing set! Sometimes those freezer
packs are just not enough -
especially for those really
long drives! Try this electric
version that plugs into your
car adapter!

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

Rett
GIRL

SUMMER
Reading

LET BOOKS BE YOUR DINING TABLE, AND YOU SHALL BE FULL OF
DELIGHTS. LET THEM BE YOUR MATTRESS, AND YOU SHALL SLEEP
RESTFUL NIGHTS.
~AUTHOR UNKNOWN

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

R e a d i t , t h e n wat c h i t !

Booksto movies

the best film versions of classic children's books and
memorable childhood stories

READ it & PRINCE CASPIAN THE LORAX
WATCH it
Book four in the classic fantasy "Unless someone like you...cares a
These are four of Rett Girl’s series, The Chronicles of Narnia. The whole awful lot...nothing is going to
favorite books from Pevensie siblings travel back to get better...It's not."
Ranker.com’s list of Narnia to help a prince denied his Long before saving the earth
children's book to movie rightful throne as he gathers an became a global concern, Dr. Seuss,
adaptations . Children's army in a desperate attempt to rid speaking through his character the
books made into movies are his land of a false king. But in the Lorax, warned against mindless
always fun because children end, it is a battle of honor between progress and the danger it posed to
already know the characters. two men alone that will decide the the earth's natural beauty.
Children's literature is in fate of an entire world. Buy the Book HERE
many ways timeless. The Buy the Book HERE Buy the Movie HERE
books we were read as a Buy the Movie HERE NETFLIX
child, we now read to our NETFLIX
own kids. Here are age The tale of desperaux
specific lists: Ella Enchanted
• FOR 6-12 Despereaux Tilling, is a mouse who
• FOR TWEENS TO TEENS At her birth, Ella of Frell was given a is in love with music, stories, and a
foolish fairy's gift—the "gift" of princess named Pea. It is also the
Or choefck90Ho+uEtmRtoEhve!iefsul list obedience. Ella must obey any order story of a rat called Roscuro, who
given to her, whether it's hopping on lives in the darkness and covets a
one foot for a day or chopping off world filled with light. And it is the
her own head! story of Miggery Sow, a slow-witted
But strong-willed Ella does not serving girl who harbors a simple,

tamely accept her fate. She goes on impossible wish. These three

DtoismneoyviecMoamodvpaiielpasttaihotanivoenHsloEtcsRheoEcfkboouotkas a quest, encountering ogres, giants, characters are about to embark on a
wicked stepsisters, fairy godmoth- journey that will lead them down
ers, and handsome princes, deter- into a horrible dungeon, up into a
mined to break the curse—and live glittering castle, and, ultimately,
happily ever after. into each other's lives.

Buy the Book HERE Buy the Book HERE

Buy the Movie HERE Buy the Movie HERE

NETFLIX NETFLIX

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PERFECT SUMMER ACTIVITY

SUMMER BOOK PROJECT

deciding what to do with your family & rett girl this
summer is not easy. here is a great idea to help

Day to day with Rett Syndrome usually revolves around our daughter's comfort, therapy, trying to
communicate, reading, and lots of hugs....but, there are some important things that may go missing
-- learning about things like planning, anticipation, memory recall, and creativity.

Here is a project that brings all of these things together for a fun summer-long activity!

(or anytime, really!)

THE SUMMER BOOK stMaTyoavihesosmk, ez#,ot1or,ipp,oaolq, uarium

Here is what to do:

TA S K O N E (planning): Get the whole family together and each come up with

3 things they want to do/accomplish over the summer. Write down on a big
sheet of paper so everyone can see.

Ways to get your daughter involved:

If she is good with her eyes/touch to make choices: give her some choices using your voice or a photo off the
internet or cut out of a magazine. Or if someone has more than three things, have her help them decide which
to cut.

If you have a voice output switch: when you are done with the lists, read them into the switch for her to
"recap" for the group what the final results are.

One family's results:

• Mom wants to: grow something she can eat, paint a
watercolor picture, take a canoe trip

• Dad wants to: visit his mom and dad, take a trip to
Boston, visit the cranberry bogs

• Pierce (big brother, 10) wants to: learn to body surf
better, start to learn the guitar, visit the zoo

• Gretchen (little sister, 5) wants to: go to the beach,
see Grandma and Grandpa, play miniature golf

• Sarah (with Rett, 7) wants to: go in a sailboat, ride in
a train, visit the aquarium

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

TA S K T W O (anticipation): when a time is approaching where some of the things on your list are feasible, write

each one on a card (add a photo representation to help!)

Let her pick what your family/ or a family member will do that day! After she picks you can all talk about how
to prepare for the day. You can make a picture list of things to bring and even have her help you 'check off' the
list the day you are getting ready.... ie, do we have this? "yes or no?"

TA S K T H R E E (memory recall): Be sure to take pictures of your day!

Ways to get your daughter involved:

Invite some friends or family over for her to tell all about the family's day and share the photos... or have her
tell all about it at school show and tell. Read descriptions of each photo into a voice output switch or make a

power point presentation that she can advance from slide
to slide herself.

TA S K F O U R (creation): Put all of your photos into a book!

Keep it simple with some captions or go hog wild with the
whole scrapbooking gig. If you don't have time for that,
cheat and upload photos to an online bookmaker site like
picaboo.com or mypublisher.com. When it comes in the
mail, the kids can color on the pages/add stickers and you
can write the captions in yourself to make it more
personal!

Now you have a book you can read over and over with your daughter, and she will feel such a big part of the
whole process!

Ways to get your daughter involved:

Record messages on her voice output switch to retell a story from each page of the book. She can then hit the
switch as you turn the pages. She can share with friends, relatives, teachers, and neighbors all about her
summer!

****************************************************************

We take these kinds of mental skills for granted. Even if you do not accomplish this project, look for little
ways during the day to have your daughter exposed to planning, anticipation, memory recall, and the art of
creation. Plan a meal a few days in advance and do the shopping together, make up a story together using
magazine photos and retell to the family after dinner, etc.

Even simpler, just remember to talk to your daughter about the future and the past. It will help you add in
more conversation topics and make her connection to what is going on around her even stronger.

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

Rett
GIRL

SUMMER
Partners

HERE YOU WILL FIND INFORMATION ABOUT OUR SISTER SITES
AND THEIR INDIVIDUAL SUMMER PROGRAMS. THERE IS A LITTLE
ABOUT EVERYTHING FROM A SUMMER CAMP TO ONLINE
EDUCATION TO SPECIAL CAMPAIGNS HAPPENING NEAR YOU!

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

ONLINE LEARNING

RETT UNIVERSITY

THE SUMMER IS A PERFECT TIME FOR PARENTS AND EDUCATORS
TO TAKE OUR ONLINE WEBINARS!

Rett University is an international e-learning platform specifically designed for parents, educators and therapists
of Rett Syndrome students. Experienced professionals share their cutting-edge knowledge on how to support
their students with Rett Syndrome and guide them to their highest levels of academic, physical and personal
achievement.

Current courses

Guided reading for girls with Rett Syndrome Part 1
Guided reading for Girls with rett syndrome part 2
The power of music Clinical research and practice
Emergent literacy for girls with rett syndrome part 1

Want to teach a course with us? "Just Added"

Rett University empowers you to teach on-line to Rett Syndrome educators, therapists and families by giving

you the tools and resources to make it easy for you to teach your proven strategies. We work with you through-

out the course creation process by providing feedback on your webinar – and review every course before it’s live
Click Hereto ensure it is ready to go.
to find out more information.

HAppening this summer!

• New courses by Judy Lariviere comming in August

• Rett U will be at the SRSA Conference in

Birmingham, Alabama July 31-August 1st.

• New website!

• Make sure to check out our Rett U Live! in the UK in

October. Registration closes August 1st

• Coming Soon - Communication Flip Books by Susan plush
Norwell & Rett University
Checktoouyt aoRvuaertilcatub-tlUee noSwowtlomaratestchoet

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

at h o m e ca m p !

CAMP Amica

Summer camp for your rett girl
build around her schedule!

DAILY AGENDA Camp Amica was created by Rett mom and GP2C former Board
SAMPLE Member, Emilie Rabke. Her goal as a Summer Camp Host is to
enjoy the summer season with her two daughters and
9:30 AM ARRIVAL & WELCOME/ neighborhood friends incorporating learning and fun while
DAILY AGENDA DISCUSSION building lasting friendships.

This fun 3-day mini camp is geared for kids ages 6-11. You can do
just one session or repeat with different themes throughout the
summer.

9:45 AM THEME FOCUS & FACTS/

10:30 AM FREE PLAY OUTDOORS
OR SNACK CREATIONS
(DEPENDING ON GROUP AND DAY)

11:00 AM JOURNAL ENTRY
INSPIRED BY "QUESTION OF THE
DAY"

11:15 AM LUNCH TIME Camp Amica! summer fun

12 PM DAILY SPECIAL: SPECIAL
GUEST OR THEME RELATED
EXPERIENCE
FREE PLAY OUTDOORS
(DEPENDING ON GROUP AND DAY)

12:15PM STORY CUBES - CREATE Themed sessions include:
"STORY OF THE DAY"
The artist in me!
12:30PM SHOW & SHARE WITH around the world in 3 days
PARENTS / DISPLAY HIGHLIGHTS christmas in july
OF DAY AND WEEK the 3 r’s of Recycling
DISMISSAL Mystery week
get ready to rock & roll
FiCnadmoputAmmoirceaabHoeurte

“RETT GIRL (SUMMER) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED 26

PLANT FLOWERS FOR A CURE

Garden of hope

This summer grow a garden to raise awareness &
research funds for rett syndrome

We are looking for stores, restaurants, banks, salons and events to FiAndGoautrdmeHonreeorfeabHooupte
HOST a Garden of Hope. We are looking for volunteers like families
and girls' organizations to PLANT Gardens of Hope. And, we need
SPONSORS for every Garden of Hope to grow!

You've seen shamrocks, sneakers and hot air balloons that you sign in
exchange for a $1 donation...we have paper FLOWERS! Together these
flowers create a "Garden of Hope." Watch us GROW these funds into
even more money for research!

BE A GARDEN SPONSOR HOST A GARDEN PLANT A GARDEN

We need sponsors to help our We need hosts to help our We need volunteers to help
gardens of hope grow! gardens of hope grow! our gardens of hope grow!

YOUR DONATION WILL: HOSTS CAN BE: PLANTERS CAN BE:
• Help us to promote the • A business • A Rett family
• A bank • A girls' club
program worldwide. • A store • A ladies' group
• Help us print, ship and track • An event • An volunteer organization
• Anywhere flowers of hope • Anyone interested in
our Gardens of Hope.
• Help us turn every Garden of can blossom! planting hope!

Hope planted into $200 for You can order a Garden kit to HOW IT WORKS:
research! plant yourself, or you can • SIGN UP for an account .
get volunteers involved to • We mail you A FREE KIT.
• GROUND BREAKER - $10,000 "cultivate" the garden with • You reach out into your
• WILDFLOWER - $5,000 you!
• MORNING GLORY - $2,500 community & find HOSTS.
• DAFFODIL - $1,000 GET STARTED • Customers donate $1 for
• SWEET PEA - $500
• SPROUT - $100 each flower.
• SEEDLING - $20 • You keep us posted on how

CLICK TO SPONSOR your Gardens are growing!
ONLINE • Collect the donations and

mail them in.

GET STARTED

We Gsuaprpdoernt oRfSHRopTe wfuitnhdso!ur 27

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

summer HASHTAG
TO

WIN

#untilshecan
#rettsyndrome

#summerpower
theflower

CftluaotkweoeuartaptlhhooentgoGtPohf2eCitlinoerswith it TAKE A PIC OF YOUR FAVORITE SUMMER
MOMENT AND INCLUDE OUR FLOWER. YOU
INSTAGRAM US & YOU COULD WIN CAN USE ANY OF OUR FLOWERS OR CUT
A $100 AMAZON GIFT CARD! OUT THE FLOWER ON THIS PAGE.

OFFICIAL DRAWING ON SEPT 1st or

Rett syndrome is a debilitating neurological disorder that is diagnosed � DOWNLOAD THIS PNG OF
almost exclusively in girls. GP2C believes that ONE DAY our girls will be OUR GP2C FLOWER.
able to run, swim, surf, skateboard, paddle board and even ride their own
bikes. To help us spread awareness about Rett Syndrome, post your � SAVE IT TO YOUR PHONE.
summer pics on INSTAGRAM with #summerpowertheflower. Try to get � DOWNLOAD THE iWATERMARK
our flower in the photo or use the instructions to create your own GP2C
flower watermark! The winner will be randomly picked on Sept 1, 2015 FREE APP FROM THE iTUNES STORE.
and announced via our Instagram page. � SCAN THE QR CODE FOR MORE

DETAILED INSTRUCTIONS.

Then

SPREAD THE WORD POST IN INSTAGRAM.
MAKE SURE TO USE THE HASTAGS BELOW
TO BE ENTERED INTO THE DRAWING!

instaurgsnteutrhtmietalfmssmlhyoeenwrcUdpearoSrnowm&eer Win!

WWW.RETTGIRL.ORG/GUIDE/SUMMER

WftEaehdmeueridcaliauepcstisoa,trtsse & Wfsaeumpoipflyofertr Rett ReDgRiiussntnrewaytiitPohnruinoscpeeasntss! 7/14
Wawe acrreeanteess GIRL tWhee icnosmpmiruenityfrWiensedefaaurnccduhrteo

SUMMER

Guide

RETT

UNIVERSITY

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