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Published by Rett Girl, 2017-04-13 17:57:01

Rett Girl Magazine - Spring/Summer 2017

Rett Girl Magazine - Spring/Summer 2017

Keywords: rett syndrome,rett girl

Spring
Summer
2017

MAKING SUMMER HAIR BOWS THE EVERYTHING RETT SITE
TIPS FROM AN SLP
FAMILY PIZZA NIGHT FUN!
SUMMER READING

RETT GIRL SPRING / SUMMER MAGAZINE 2017 © COPYRIGHT 2017 | WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED

RReeggiissttrraattiioonn ffoorr DDiissnneeyy PPrriinncceessss 22001188
ooppeennss AApprriill 2255!! wwwwww..ggpp22cc..oorrgg//pprriinncceessss

2 SPRING SUMMER 2017

We are welcoming SPRING! As it starts to warm up, It's not easy to describe the experience of raising a
all the dull browns and greys start to turn into child with special needs. From the outside, it may
bright greens! It’s such a welcoming time of year, look challenging and stressful. But in our hearts, it
much like January, it’s a time to just start fresh. With is a wonderful experience of evolution and
that concept in mind we have put together our personal growth. We don't see a disability when we
Spring/Summer Rett Girl magazine. look at our daughter. Instead, we see the most
precious and wonderful blessing of our lives. We
We’ve got tons of options and ideas for getting your see our child.
Rett Girl more involved. Ways to get her engaged in
everything that’s going on around her. From pizza My kids have taught me that sometimes joy is so
night to crafts to daily communication! We hope intense that laughing is not enough to celebrate. I
that as you read through the pages of this magazine have learned to cry tears of joy and to smile with
you are inspired and equipped with brand new serenity during the tough times. With that said, the
ideas for you to keep in your tool belt to continue to first step to enjoying your child is to learn to dream
fight Rett and let your child’s personality shine new dreams and understand that your child's
through. disability is not a shame or tragedy. It's just a
different way of living and loving with different
We LOVE hearing from you! Drop us an email and abilities. All you need has been given to you with
let us know how you are using this magazine, what your child. You've got love. Everything else starts
has inspired you and what have you learned about from there.
your Rett Girl!
Much Love,
Happy Spring! Kristin Hileman
Bridget MacDonald Family Support Team Leader
Rett Girl Coordinator Girl Power 2 Cure
[email protected] [email protected]

SPRING SUMMER 2017 3

Rett
GIRL

SPRING/
SUMMER

“Spring breathes new life into the world around us.”

We’ve broken our Spring/Summer
Rett Girl Magazine down into SIX

fabulous categories.

Click the category to navigate to each section

5 ACTIVITIES Your Rett Girl will LOVE
11 Recipes making these hair bows
Pizza Night!

18 PRODUCTS Must-have items for the season

22 EDUCATION Tons of ways to keep learning
over summer break

30 Health and Wellness Sun Safety!

34 Girl Power 2 Cure What’s happening this season?

4 SPRING SUMMER 2017

Rett
GIRL

Spring/
Summer
Activities

THERE SHALL BE ETERNAL SUMMER IN THE GRATEFUL HEART
CELIA THAXTER

SPRING SUMMER 2017 5

Try Something New!

Spring/Summer Hair Bows

Get Creative with your Rett Girl

Your Rett Girl is going to LOVE assisting you in making this great bow tie hair bow. This style has tucked tails,
which makes it look like a bow tie. It’s also easy to fasten to any hair clip or headband. Check out the next
page too for a communication page that you can either print or download right into Communicator 4 or 5.

Bow Tie Hair Bow: Hair Bow Instructions:

Watch the video tutorial HERE ! • Gather your supplies – Ribbon, needle, thread, hot glue
gun or fabric glue, embellishment, and the hairclip, plus
wikihow.com/Make-a-Hair-Bow-out-of-Ribbon� elastic or headband to apply your bow to. Let your Rett
Girl choose any type of ribbon fabric or pattern and any
embellishments to add to the center of the bow.

• Decide the size of your hair bow – Once you decide the
size, double the length of the ribbon and add 1 extra inch.
A standard 2 ½ inch bow would need 6 inches of fabric.

• Cut the ribbon – Once ribbon is cut, loop the ribbon into a
circle and allow the two edges to overlap by ½ inch

• Use your needle and thread – Hold the overlapped edges
in place and push your threaded needle through the
bottom and pull it through the top. Then, wrap the
threaded needle around the center of the bow several
times so that the middle of the bow creases together in
the center.

• Tie off your threaded needle – Once the thread has a tight
hold in the center of your bow, you can push your
threaded needle through the top of the bow and pull it
out through the bottom. Cut the needle off and tie a knot
in the thread.

• Finish it off – Now your Rett Girl can decide if she would
like to add another piece of fabric by wrapping it around
the center to hide the thread and put on any additional
embellishment that she picked out by gluing it to the
center.

6 SPRING SUMMER 2017

Bow Making Communication Page Sets

download printables or Sono ex les for Communicator 4 and 5
at: http://rettuniversity.org/free-resources/hair-bow-fun-using-aac

SPRING SUMMER 2017 7

Head out the Door!

Community Outings

Join in the fun this summer

FREE National Art Shows: Horseback Riding:
Parks Pass:
Does your Rett Girl love art? Why The spring and summer are a great
Did you know that you can not visit a few art shows this time to try something new! Have
get into any National Park season? This website allows you to your Rett Girl try horseback riding
in the nation with a free search listings of art fairs by state: (clear it with her doctor first) which
disability access pass?! www.festivalnet.com/art_fairs.html can not only be fun but also a great
This pass covers the therapy for walking, increasing
disabled person and Minor League Baseball core strength and so much more.
everyone riding in their For a listing of therapeutic horse-
vehicle and may even Who doesn’t love seeing a ball back riding stables near you check
provide you with a game? Head on out to cheer on your out this website: www.pathintl.org
discount on other ameni- local Minor League baseball team.
ties like boat launching, Your Rett Girl will love the excite- Local Concerts
fishing, camping and ment and the price is much easier to
guided tours. To learn how swallow than the Major Leagues! So many of our Rett Girls just LOVE
to apply by mail and see all Visit milb.com to see the teams, music! Why not head out to a
the places where you can leagues, schedules and even buy concert? Check your local websites
use your access pass visit: tickets online! for symphonies, bands, and musi-
tinyurl.com/parkaccesspass cians playing at a venue near you!
Sprinkler Parks
Parades
Looking for a great way to stay cool
Whether it’s Memorial Day, 4th of
finIfdyEoonvueerryaRtoenttetinlGoyvireulsrdtol.oecsronidm’te/hbagivkeeetsa-!ab-ibkeike but enjoy the sunshine? Head out to July or some other occasion, the
a sprinkler park! If your Rett Girl has spring/summer season is a perfect
a rolling shower chair or an older time for a parade! Enjoy the
wheelchair that you wouldn’t mind outdoors, watch the floats and join
getting wet you can push her in the festivities! Check out a
listing of United States Parades
through the sprinkler park to cool off HERE:
www.usa.worldweb.com/Events/Parades
and have fun! Or, get her onto her

feet and get some therapy in! Check

your local county or city website to

find a Sprinkler Park near you.

8 SPRING SUMMER 2017

Girl Power 2 Cure THEY RAN FOR

PRINCESS RUN THEIR SISTERS, THEIR DAUGHTERS,
THEIR FRIENDS, THEIR FAMILIES

THEY RAN #UNTILSHECAN

Congratulations to Team GP2C for your courage,
endurance and persistence! Proud to be your sponsor!

PRC: Empowering girls to express themselves through our wide range of devices
and state-of-the-art eye gaze systems. Contact your PRC Consultant at
800.848.8008 for more information, or, visit us online at prentrom.com.

SPRING SUMMER 2017 9

Sensory Bags!

DIY FUN!

The warm weather is a perfect time to create and try new things!

Sensory Gel Pads

All you need is hair gel, sandwich bags (with zipper), duct
tape, small toys, and beads or buttons to make this great
sensory gel pad! Get full “how-to” instructions at

singingthroughtherain.net

No Mess Finger Painting

Keep your duct tape and sandwich bags out, you’ll need
those plus plain white paper for this next mess-free activity!
Instructions can be found at

www.pinnedthereanddonethat.blogspot.com

Constellation Sensory Bag

For this project you will need one-gallon storage bags, clear
hair gel, star shaped confetti, black poster board and glow
in the dark constellation cards (which you can make as
well). This is an awesome project that can set the stage for
a full day of learning about stars as well as a fun night
looking up at the night sky! Directions for this sensory bag
and constellation cards can be found at

www.playgroundparkbench.com

Eye Spy Alphabet wwwviFs.piotrinoMutreoPrreeinsgtterer.ceaosttmDb/IYoraeritddtesgaasirtl/diy

For this project you will need plastic zip lock bags, alphabet
letters, hair gel and duct tape. This is a great way to
introduce your Rett girl to letters or work on spelling her
name or sight words! Fun, sensory AND educational! Find

all the details at www.mominspiredlife.com

10 SPRING SUMMER 2017

Rett
GIRL

Spring/
Summer

EAT WELL, LIVE SIMPLY, LAUGH OFTEN

SPRING SUMMER 2017 11

Robin Gentry Mcgee’s

f u n c t i o n a l formularies®

let food be thy medicine

REVOLUTIONIZING

CLINICAL NUTRITION

Organic whole food feeding tube formulas
and meal replacements

“Don't eat anything
your great-grandmother
wouldn't recognize
as food.”

~ Michael Pollan

12 SPRING SUMMfEuR n20c1t7 i o n a l f o r m u l a r i e s. c o m

#HealthRevolution # F F l i q u i d h o p eSPRIN#GFSFUMnMoEuR r20i1s7 h13

Wa r m W e at h e r M e a ls

BLENDED FOODS

A healthy alternative for Rett Girls with a G-tube

IMPORTANT Blended diets can be just as exciting as eating by mouth. Give your Rett child
TIP! plenty of options and a wide variety of foods so they can enjoy the same
good food and nutritional benefits as everyone else! We know it can get chal-
One of the most difficult lenging at times, but thankfully Rett Girl is here to help with LOTS of ideas!
things with starting and main-
taining a blended diet is keep- Easy Basic Chicken Meal Easy Basic Beef MeaL
ing up with the meals and the
demands of constantly having •1 cup quinoa •¾ cup cooked brown rice
a meal on hand. The easiest •1 cup cooked chicken
way to combat this issue is to •1 cup strawberries •6 ounces cooked ground beef
batch blend and store or •1 cup cooked sweet potato
freeze meals. Batch blending •½ cup spinach •½ cup strawberries
means blending large •2 ½ cups almond milk
amounts of food and portion- •3 Tbsp. olive oil •¼ cup avocado
ing them out for specific •2 Tbsp. flax seed
meals. Another way to keep •2 Tbsp. honey •1 pear
up with blended diets is to do
table to blender meals. The *Mix on soup setting in a •½ cup summer squash
next few pages feature pizza Vitamix or Blendtec blender
night! If your Rett Girl is on a until it is thin enough for a bolus •1 ½ Tbsp. olive oil
blended diet she can still be or pump feed.
part of the fun, just use stick a •¼ cup broccoli
piece or two in the Vitmaix Total Calories 1500 – split this into 3 – 500
and thin with a milk substi- calorie meals! Refrigerate meals for 2 or 3 •2 1/2 cups almond milk
tute! You can also add a little days or freeze.
extra fat with some oil or nuts! •½ cup cooked peas
FbPsoFleeurndupodinpauecleSrdtmioRudenreineeattttl,,FoGrpbouierorrmtlseshueuedolarrnerdmiaieteeosta.ccOlohRmecoknout
MwaitkheSbQoUluEsAfSeeYdGinEgAeRa.sCiOeMr •1 cup blueberries

Add water to thin
*Mix on soup setting in a

Vitamix or Blendtec blender
until it is thin enough for a bolus
or pump feed.

Total Calories 1500 – split this into 3 – 500
calorie meals! Refrigerate meals for 2 or 3
days or freeze.

14 SPRING SUMMER 2017

Recipes

Pizza Night

Perfect recipes for a fun night in the kitchen!

Everyone LOVES pizza night! Let your Rett Girl get involved by allowing her to choose her favorite
toppings and use hand over hand to put all the ingredients on. Make it easy by buying pre-made crust
and a jar of pizza sauce or use the recipes on the next few pages to make your own crust and sauce!

Gluten-Free Pizza Crust – from minimalistbaker.com

ServingS PREP TIME TOTAL TIME Ingredients

2 15 50 • 3 cups (440 g) gluten-free
flour blend: 1 cup (160 g)
SMALL/MEDIUM MIN MIN white rice flour + 1 cup (160 g)
PIZZAS brown rice flour + 1 cup (120 g)
tapioca flour + 3/4 tsp
xanthan gum

• 1 tsp salt
• 1/2 tsp baking powder
• 3 Tbsp (37 g) sugar, divided
• 1 Tbsp (10 g) yeast
• 1 1/4 cup (300 ml) warm water,

divided
• 1 Tbsp (15 ml) olive oil

DIRECTIONS

1.Preheat oven to 350 degrees F (176 C). Museum

2.In a small bowl, combine yeast and 3/4 cup (180 ml) warm water - about 110 degrees F (43 C). Too hot and it will kill the
yeast! Let set for 5 minutes to activate. Sprinkle in 1 Tbsp (12 g) of the sugar a few minutes in.

3.In a separate bowl, combine gluten-free flour blend, salt, baking powder and remaining 2 Tbsp (25 g) sugar. Whisk until
well combined.

4.Make a well in the dry mixture and add the yeast mixture. Add the olive oil and additional 1/2 cup (120 ml) warm water
before stirring. Then stir it all together until well combined, using a wooden spoon (see photo).

5.Lightly coat a baking sheet or pizza stone with non-stick spray and plop your dough down. Using your hands and a little
brown rice flour if it gets too sticky, work from the middle and push to spread/flatten the dough out to the edge . You
want it to be pretty thin - less than 1/4 inch.

6.Put the pizza in the oven to pre-bake for roughly 25-30 minutes, or until it begins to look dry. Cracks may appear, but
that's normal and totally OK.

7.Remove from oven and spread generously with your favorite pizza sauce, cheese and desired toppings. We went with
Daiya to keep ours dairy-free. Pop back in oven for another 20-25 minutes, or until the crust edge
looks golden brown and the toppings are warm and bubbly.

SPRING SUMMER 2017 15

Gluten-Free Pizza Sauce – From glutenfreebaking.com

Ingredients

ServingS PREP TIME TOTAL TIME • 1 tablespoon olive oil
• 1 small onion, diced
2 20 25 • 3 cloves garlic, minced or put

DIRECTIONS MIN MIN through a garlic press
• 1 teaspoon dried basil
• 1/2 teaspoon dried oregano
• 1/8 teaspoon red pepper

flakes
• 1/2 teaspoon kosher salt
• 1/4 teaspoon granulated sugar
• 2 teaspoons butter (increase to

one tablespoon if you feel like
it.)
• 1 14.5 ounce can petite diced
tomatoes OR 15 ounce crushed
tomatoes OR 2 cups (approx)
fresh tomatoes, chopped
• 2 tablespoons tomato paste
(increase to three tablespoons
for a thicker sauce.)

1. In a small pot, heat olive oil over medium high heat until shimmering. Add onions. Cook until soft. Stir
frequently while cooking. Add the garlic. Stir. Cook until soft and aromatic. Add basil, oregano, red pepper
flakes. Stir to combine. Add salt and sugar. Stir. Cook for two minutes. Add butter. Cook, stirring constantly,
until butter melts.

2. Reduce heat to medium-low. Add tomatoes. Cook as desired. You could cook the sauce for just a minute to
warm or you could cook for an hour for a rich, thick sauce.

16 SPRING SUMMER 2017

PIZZA VARIATIONS

Ingredients

• Pineapple
• Ham
• Shredded Chicken
• Bacon
• BBQ Sauce
• Avocado
• Mozzarella Cheese
• Or Any of the meats, veggies,

cheese or other toppings that
your Rett Girl LOVES!

DIRECTIONS

1. Hawaiian Style: Top with Pineapple, Ham and Mozzarella Cheese
2. BBQ Pizza: Top with Chicken, Avocado, Mozzarella Cheese and replace the pizza sauce with BBQ sauce
3. Dessert Pizza: Use chocolate spread instead of pizza sauce and top with marshmallows!

anEiHdmn aaiotviulecrboanurielddgxgrtbeetage@utfgidrepeae2c!tciup.orere?gd

SPRING SUMMER 2017 17

Rett
GIRL

Spring/
Summer
Pro ducts

SHOOT FOR THE MOON, EVEN IF YOU MISS YOU’LL LAND AMONG THE STARS

18 SPRING SUMMER 2017

PERFECT SUMMER PRODUCTS

Cool Stuff

Fresh Start to a New Season!

RETTGIRL.ORG! Cozy Canoe

At the pool, at the beach or the lake, This fun Cozy Canoe gives kids just the right amount of deep
pressure for a calming hug. Rock the boat to challenge
these will surely be a big hit! balance reactions on pretend waves. Inflates and deflates
quickly! Your Rett Girl will love this, and so will her siblings
and friends! rettgirl.org/2017/03/6318/ )

Little Passports In Balance Bedding

Keep your Rett Girl learning Give your Rett Girl a more restful sleep this summer with In
over the summer months Balance™ bedding, made with Outlast®
with a subscription to Little *material, features proven temperature balancing
Passports. Select the adven- technology to absorb excess heat.
ture and subscription plan rettgirl.org/2017/03/6306/
that's right for your child.
They offer fun and engaging
products for children ages
3-14 with different payment
plans.
rettgirl.org/2017/03/6321/

VISIT
RETTGIRL.ORG

TO LINK TO
PRODUCTS ONLINE

Tablet Stand Rett Syndrome
Awareness Bracelet
Does your Rett Girl love her tablet? Check
out this great stand! It has a very heavy Just because she’s worth it! This
base and rubber feet so it stays put. It is beautiful silver-plated badge
360 degree adjustable as well as height with tiny hands opening up in
adjustable. the form of angel wings is a
rettgirl.org/2017/03/6310/ symbol of hope, and the other
side contains the word "Rett"
with an inverted "R" to remind
us that it is a rare disease.
rettgirl.org/2017/03/6308/

SPRING SUMMER 2017 19

OUTSIDE
Handy Helpers Great FUN
products for all of your
travels!

Float Collar Buddy Tag

Keep your Rett Girl cool, BuddyTags are colorful
upright and a little more wristbands equipped with
independent in the water Bluetooth technology that pair
this summer with this great to an innovative app designed to
neck float. track kids. This is a fantastic
rettgirl.org/2017/03/6312 product for our mobile Rett Girls
who may tend to wander.
Versa Brella Waterproof, easy-to-use, no
monthly fees, no charging, and
Stay cool in the shade with this great they come in tons of great
umbrella that clamps onto most colors!
surfaces, has a four-way swivel and rettgirl.org/2017/03/6316
folds down together for transporting!
rettgirl.org/2015/06/5512/ Rain Poncho

VISIT April showers bring May flowers. Be ready for Spring
RETTGIRL.ORG rain in this adorable rain poncho by Special Ones Gear!
rettgirl.org/2017/01/6298/
TO LINK TO
PRODUCTS ONLINE

Portable Stadium Seat

What a great chair for taking to the beach,
camping, sporting events, or any outside
activity! This chair even has six different
reclining positions and comes with
shoulder straps for easy transporting.
rettgirl.org/2015/08/5681/

20 SPRING SUMMER 2017

Claire's Crusade, a Founding Partner
of Rett University, is dedicated to
supporting students with
Rett Syndrome.

photo credSit:PSaRrahI NWiGllis oSf @UsaMrahMashEleRy6221 p0h1ot7ograph2y 1

Rett
GIRL

Spring/
Summer
Educatio n

NEVER STOP LEARNING BECAUSE LIFE NEVER STOPS TEACHING

22 SPRING SUMMER 2017

Ways to Engage with Books

Summer Reading

Book recommendations from Susan Norwell, M.A.
Special Education and Rett University Instructor

For Preschoolers! For Elementary Age! For Middle Schoolers!

Way Down Deep in the Deep This Book Just Ate My Dog Lulu and the Brontosaurus:
Blue Sea
http://tinyurl.com/doginbook http://tinyurl.com/read-lulu
http://tinyurl.com/seabook
When her dog disappears into Lulu is demanding a bronto-
In a singsong text, a little boy the gutter of the book, Bella saurus for her birthday, and -
describes his adventure into calls for help. But when the after a 13-day standoff, she -
the deep blue sea. He plays helpers disappear too, Bella marches into the woods and
peekaboo with a hermit crab realizes it will take more than finds one for herself. There’s
and fences with a swordfish a tug on the leash to put only one problem: the bronto-
until he eventually discovers a things right. Cleverly using saurus wants Lulu as his pet.
pirate's treasure chest, but he the physicality of the book, This is a great read for upper -
leaves most of it behind when This Book Just Ate My Dog! is elementary and middle school
he meets what's on the next inventive, ingenious, and just students and a bonus is it’s
page–a shark. Still, he manag- pure kid-friendly fun! Elemen- part of a series so once they
es to bring a coin back up to tary kiddos will get a kick out read this they’ll be hooked
his mother, who is waiting for of this hilarious story! into reading more stories
him at the surface. This book about Lulu!
is a must read with your
preschooler, they will love the
bright, colorful illustrations
and this is the perfect age for
the rhyming and repetition

AAthemonmyeFso-toeOedyhtXrretiAcoudtbhuspyatsdb:no,/aMoggto/nheakdaotsrunifgpnqgodaeurhyrriatsceeu-tkleperlvrfymWleol.,irecvgilaondohhktntomai&lcnwere/sgRyesr–voetesnborta,ioBraardwddyr-mhoutfeaoulrtonbksa!xstvoFeurlotextafodrgei!neettnhedersrs,h. ip, sAittuyidodnooGfiubywEeoltnueanvc.erracoareolu.nnfmc1rr’8dtaoei0esgmra,ebe0ta/arl0ernditae0rtaalwoidammaittiuonalahd-ngzkiatyoeihebnouvtugohdehroeneipkrbRrsetwo:el!imetvhtiedenGetriorl!

SPRING SUMMER 2017 23

FUN & INTERACTIVE LEARNING

Summer Educational Apps

App recommendations from Susan Norwell, M.A.
Special Education and Rett University Professor

Go Talk Now StoryBots: Toca-Boca apps
Picture Album:
http://www.storybots.com/apps https://tocaboca.com/apps
http://tinyurl.com/gotalk-aac
Go Talk Now is an AAC app that Add your child’s picture to the story and the Toca Boca believes in the power of play to
allows you to create an infinite story comes alive! StoryBots helps your child spark kids’ imaginations and help them
amount of communication books, practice literacy and math skills and explore learn about the world. They design their
each with unique settings and science, history, behaviors and more. products from the kids' perspective to
unlimited pages! Choose from By adding your child’s photo and name, you empower kids to be playful, to be creative
three styles of communication can make them the star of the show! and to be who they want to be. Their
pages: Standard, Express, and You can try StoryBots free here: products include award-winning apps
Scenes. In Standard pages, the that have been downloaded more than
action occurs when the location is http://tinyurl.com/storybot or you can 150 million times in 215 countries and
pressed. In Express pages, recorded offer fun, safe, open-ended play
or text-to-speech messages build in check out their monthly, annual and lifetime experiences. There are 38 apps created
a speech bar and play in sequence memberships ranging from $5 - $40 here: by Toca Boca so there’s something for
when the bar is pressed. Scene everyone! Available for iOS and Android.
pages are built around a single http://www.storybots.com/apps.
photo or image. When you arrange Virtual Nail Salon
invisible hotspots over people or Available for iOS devices.
objects in the photo, the hotspots Try out real-life nail polish colors,
play speech, music, or videos! You Magnetic Letters patterns, and rings on your own photo.
can even mix and match pages Your Rett Girl can draw (with actual nail
within a communication book. Go http://tinyurl.com/abc-magnet polish shades) on her own nails, and even
Talk Now is available for iOS for create her very own nail polish pattern
$79.99. NOTE: Susan Norwell makes Play with your kids and teach them to write from any photo! This great app includes
it easy to learn how to create social with the Magnetic Alphabet! virtual manicures, the ability to try on
conversations and a talking photo It's the iPad edition of the old fashioned rings, over 100 nail polish shades, nail
album using your Go Talk Now app magnetic board suitable for kids of all ages! pattern templates, stickers and gems, and
in this great Rett U course here: It comes with a rich set of colored pieces that you can share on social media or email!
http://tinyurl.com/talk-album can be placed freely on the board: letters, Some nail options and shades require an
numbers, symbols, funny figures and in-app purchase. Check it out for iOS here:
24 SPRING SUMMER 2017 themed sets. An infinite source of fun and a http://tinyurl.com/zk4xz8j or for Android
great way to stimulate their imagination and
creativity! The free version includes onl-y here: http://tinyurl.com/virtualnail
uppercase letters. Lowercase letters,
numbers, symbols, shapes, special letters,
special festivity sets (Christmas, Easter and
Halloween) and themed sets are available as
in-app purchases. Available for iOS devices.

Rett University

Traci Ingram, M.S., CCC/SLP Bio

Syndrome, but I am seeing incredible success with children
diagnosed with Apraxia, Autism, and/or Down Syndrome. I even
find myself using it with children who only have articulation and
language disorders. I am using the techniques with both verbal
and nonverbal children of all ages. The techniques allow me to
target multiple key aspects into one activity, making each session
more productive and effective. The use of the communication flip
books and these techniques helps to:

• Bridge the gap for my children by creating a natural and
normal way to converse.

• Learn the left to right scan pattern for reading.

• Recall facts with visual cues.

Traci is a Speech Language Pathologist and the owner of Effective • Comprehend and understand more complex sentences
Communication in Huntsville, Alabama. Traci has 20 years of because a visual is presented and modeled.
speech therapy experience and is skilled in both evaluating and
treating adults and children. Over the years, she has become an • Introduce new vocabulary while building in and reinforcing
expert at treating preschool and elementary school children with vocabulary already introduced and learned.
childhood apraxia of speech, autism and language processing
disorders. She was trained by nationally acclaimed apraxia expert, • Teach basic sentence structure and grammar development.
Nancy Kauffman, to use the Kauffman Speech Praxis Treatment
Approach while working for her in West Bloomfield, Michigan. • Target functional working memory and short-term memory.
Traci is a cum laude graduate of the University of Alabama, where
she earned a B.S. in Education, majoring in communicative disor- • Create phonological awareness and discrimination.
ders, and a M.S. in Speech Language Pathology. Traci is married
with two children of her own, Katie Elyse age 8 and Grant age 13. • Build attention both to print and spoken language.

I had the pleasure of attending a Rett U Live! event in 2016 with • Target feelings and emotions with each activity.
Susan Norwell and was extremely encouraged by experience. I
walked away from that workshop with confirmation of what I’ve • Build good behavior, as children become less frustrated when
believed for many years; building literacy skills for our students they realize the power of communicating their thoughts
with complex communication needs is critical to their develop- verbally, by picture or device. I find using the communication
ment of language and communication! flip books and overlaying their feelings with words and
pictures improves their behavior. “You feel annoyed. You
After my experience at Rett U Live!, I immediately began weaving don’t like this. I got it. Let’s do three more and then do
the use of the Rett U Communication Flip Books into my treatment something else.” Having the children answer questions about
time with several of my children. I have seen amazing results! mood and behavior gives insight into why they occur.
These strategies and techniques not only work with girls with Rett
These approaches touch on all the aspects of language learning,
learning to read, reading and writing, and help me take a child at
any level through the normal stages of development.

Over the years, I’ve always worked hard to presume competency
in children. However, I had been using concrete questions and
very few thought-provoking questions. With the strategies and

SPRING SUMMER 2017 25

techniques taught by Susan and Rett U, I am getting a much clearer picture of their Want to get started?
true ability. I have learned so much more about what my non-verbal children think
and want to discuss! Using Susan’s techniques, I now hear descriptions such as Go to www.rettu.org and start learning
“extinct dinosaurs”, “smelly socks”, “ugly dog”, and the children tell me about today!
places they would like to go. One child said to me recently using their flip books, “I • Emergent Literacy Parts 1 & 2
want to ride a boat in the ocean, but I would get sick.” Another child told me, “I like • Guided Reading Parts 1 & 2
going to the park”, and then we discussed which park they visited and what they • Getting Started with Tobii Eye Gaze
liked to play there. I am now having true conversations with real thoughts,
emotions and back and forth dialogue with non-verbal children. Systems
• Creating Social Conversations- Talking
Children should not be limited to what someone else inputs in their AAC device.
Imagine living in a world where you’re bombarded by closed-ended questions, and Photo Album
one- or two-word answers are all you can possibly reply. That’s the life these • Building Social Communication- from
children live and it’s no wonder many struggle. As communication partners, we
should be focused on facilitating access to more information and vocabulary, Co-Construction to Narratives
leading to more growth. • Bringing AAC Home Using Motivate,

There is so much more to language than answering questions and stating wants and Model and Move Out of the Way!
needs. Rett U’s techniques and strategies have taught me how to take away all the • Communicator 5- Setting Up,
layers of difficulty and frustration for many of our students (both verbal and
non-verbal) with complex needs. We focus on what is important to them and Customizing and Communicating!
remove the unrealistic expectations we have placed on them for years. Communica- • Homework Pages- Sharing What I’ve
tion isn’t about “finding the noun” or “show me the word”; it’s so much more.
Partner-assisted scan, effective use of the communication flip books and high-tech Learned!
AAC (when available) encourage true communication. Centering these conversa- • The Power of Music- In Clinical
tions around games, key topics and books allow for a natural communication
exchange and learning of vocabulary in context. All of these contribute to happier Practice and Research
children and families who now have access to real and tangible ways to communi- • Word Study Block- Part of the 4 Block
cate.
Balanced Literacy Model
Want to talk to Traci directly? Contact her at traci_ingram@effectiveslp.com www.effectiveslp.com

www.tdieTnmoyonuoarsrdtnlre.dcartowFiomanlit/pcvrhiBdeaeotoot,kugs-oftloipbooks

26 SPRING SUMMER 2017

High Tech and Soft Tech

By: Kristi Craddock, M.Ed - Rett University Coach

So many times I've been asked, "How do I model on It's always great if you have time to acquaint yourself
the device? Am I supposed to model every word? with the pages and familiarize yourself with the loca-
What if I can't find what I want to say? When should I tion of the words. Unfortunately, we have jobs, kids
use the speech generating device versus soft tech and many other obligations that may not always allow
materials?” us to have that capability. Don't worry, model what
you can when talking with your child/student, and
No fear, I am here to help you answer those questions don't beat yourself up, if you can't do it perfectly. The
and a few more, along the way. more you use it, the better you will be; practice may
not always make perfect, but it does make you the
Modeling on the device will be ongoing and adjusted best you can be, at the time. If you make a mistake,
to your child's/student's progress. When using a laugh at yourself and move on. This will show your
language system like Sonoflex, which is word based, child/student that it is ok to make mistakes. I'd
you will want to begin modeling one word. For suggest knowing where the "Oops, I made a mistake"
instance, if you want to say, "We are going to the or "Oops" and LOL/funny buttons are for these times.
park." You will speak the entire sentence, but model
the word "park." Once the user shows they can access I'm always saying, "Model, Model, Model," but there is
one word that they want to use, move onto modeling a time to move away and let them take the lead. Let
two words. Using the same sentence as above, "go your child/student initiate a conversation, give them
park." Continue to model two words until you see ample wait time to respond, comment, initiate, and
them accessing two words to communicate. Progress always praise them. The best way to start them initiat-
to modeling three words and so on, which will model ing a conversation or reciprocating conversation is to
building a complete sentence. make it meaningful to them. Discuss things they like
and enjoy or something you see that sparks an inter-

SPRING SUMMER 2017 27

When utilizing the ABC or Core Word flip books, you
will want to point to each letter/word, as you say it
and wait for them to look at the yes/no. You can say,
"I see you that your word starts with a C. What comes
next in the word you are trying to spell? Is it an ABC or
D?" Always going back to the beginning of the alpha-
bet, allows for your child/student to learn the letters
and in their progression. Keep the writing activities
fun, and interest based. If you see frustration set in,
assist them with the next letter or word. Make your
time with your child/student fun, and an activity that
you both will want to look forward to.

est. Use pictures or preferred items/activities to talk You can find more examples and instruction on PAS
about and keep the conversation moving. Don't make on the Rett University website, or feel free to email
it always about asking them direct questions. Make me at [email protected]
comments and ask them, "What do you think?" Stay
forward thinking when they make a comment. Think
about what they did prior to the remark, or earlier in
the day. The comments they make could very well be
about something that happened at school, or that
morning, or possibly another day.

Soft tech materials can be used when you don't have
access to the speech generating device or if you are
working on academics. When using soft tech materi-
als, such as the ABC/Core Word flip books or 4 Grid,
you will want to use Partner Assisted Scan (PAS). This
gives the child/student the ability to let you know
what they would like to say using the grid. For exam-
ple, if you are using the 4 Grid, you may say, "I like
that book. I think it is cool. What do you think? Do you
like it?”

While asking the question, you will be pointing to the
yes and waiting for them to express a yes or no in
their preferred way. “Did you think it was cool?” Point
to each picture with the word as you say it and wait
for their response. “Oh, so you thought it was cool
too,” as you point to that word & picture. Identify
where their eyes are looking to see if they are saying
something else on the grid.

28 SPRING SUMMER 2017

Building Foundational Communication Support for
Individuals with Rett Syndrome

FIRST STEPS While a Rett Syndrome diagnosis is overwhelming, there is definite, reportable hope for
substantial communication growth and language development. The strategies listed below
are ongoing strategies, but essential if you are just beginning. They will support the use of
both soft and high tech tools and resources to build more independent communication over
time. As with any learning, it will take time and practice on both you and your child's part.
Don’t give up, look for small intents and celebrate successes. Your child will surprise you
with what they want to tell you.

Three Key Strategies Avenues for Building Communication

1. MODEL (DEMONSTRATE) There are three main areas that support language growth
As your child's communication partner, it is critical to and development for all children and have also proven
model the use of symbols, pictures or objects by successful for individuals with Rett Syndrome.
communicating to the child using the options themselves.
Language immersion throughout everyday experiences
For example: While using symbols “like” and “don’t like” Bathing, eating, changing their clothes and anything else you
point to the symbols and say: “I like, I don’t like, then say can think of are opportunities to build vocabulary and
‘I like” “YES” “I like that book.” When offering choices of language. They can communicate “like or don’t like” for their
objects you can say: “Cookie, cracker” holding them up – outfit that day. “More or done” for lunch. “Bath or Book”
then say “Cookie – NO” “Cracker – YES” "I want a first as a bedtime routine.
cracker.” By modeling, the individual will learn how to use
the symbols, pictures or objects to make simple choices Through play and interaction
and begin to map (assign) meaning to the symbols. This There are some great iPad apps available that do not require
is the same process we use to teach verbal children. We a lot of hand use. Toca Boca apps are great for offering
model and they learn to map the meaning onto the words. choices as the choices are spread apart and easy to read for
eye-pointing and for saying the choices and waiting for their
2. MAP (ASSIGN) “YES.”
Map your child’s reactions onto available symbols, pictures
of objects. An individual will learn the meaning of symbols Through controlled vocabulary of literacy-based
even faster if you begin with their own feelings and opinions. experiences in order to experience and retell
Reading to your child is a proven way to build communication
For example: If you see them smile at a picture say: and vocabulary. In the beginning, just watch where they look
“Like” (point to the like symbol) or “YES, you are telling and read that as their pointer. Have a mini-conversation
me you like the picture." This is particularly helpful for about it. “You spotted that girl’s hat – it is really big.” Later
someone who is just beginning to learn to communicate you can add a “like or don’t like” so she can give an opinion.
and does not have a clear “YES” response established yet.
In the same way, if they smile and look at their juice, you There is no formal way to begin. It’s recommended you just start
say “I can tell you want your juice, you looked right at it using these strategies in daily conversations and build upon
and smiled – you like your juice” and you can give her the them over time. Be kind to yourself and realize both you and
juice and show her the “like” symbol. your child are learning a new way to communicate. They are
present and understand everything they hear and everything
TIP: It is particularly important to “map meaning” onto the you say. Work to include them in every conversation. Learn to
“HELP” symbols to replace behavior with communication. talk with them and not at them. With your help and the help of
those around them, you will begin to see them start
3. SELF-EXPRESSION communicating in real and tangible ways.
Now your child will begin to beat you to the punch! They
will look to a symbol, or quickly smile and look at their RETT UNIVERSITY
juice. You will hold up a symbol or picture to model and www.rett-u.org BY GIRL POWER 2 CURE
they will eye-point to what they want to say. When you
start to notice their initiation or responses, it is a time to
celebrate. “Look at you, you told me just what you
wanted.” “Wait a minute, you don’t like that monster
either?” Be specific in your praise so they know exactly
what they did that worked. “You looked at your juice and
LIKE – you know what you like.” It is at this point you will
want to add to her language set and explore technology
and additional tools and resources to support their
growing communication skills.

Have questions or need support? Contact us! www.rettuniversity.org 904.2S7P7R.2I6N2G8SUM MER 2017 29

Rett
GIRL

Spring/
Summer

a h and Wellness

THE BODY HEALS WITH PLAY, THE MIND HEALS WITH
LAUGHTER AND THE SPIRIT HEALS WITH JOY

30 SPRING SUMMER 2017

Robin Gentry Mcgee’s

f u n c t i o n a l formularies®
let food be thy medicine

To Anyone That Has Been Told That Sugars are
Sugars, Regardless of Where They Come From…

First we went through this with calories. Remember that story? A calorie is a calorie. Maybe
that works out for a device like a bomb calorimeter used in food analytical labs. However human
metabolism does not take place in a closed system. There are so many moving parts that can
heighten or reduce the extractable energy found in foods. The individual’s endocrine system,
the immune system’s response, the potential inflammatory component to many foods, and, maybe most
importantly, the role of the micro-biome and how the bacteria respond to what we eat.

Sugars are made up of individual units called monosaccharides. These vary from the more common
and starchy root vegetable-based glucose to the less common and far more problematic fructose.
The research surrounding these two building blocks of sugar is clear: fructose is not well
tolerated and creates more inflammation, more dysbiosis and subsequent endotoxemia, and more
insulin resistance. Almost all added or refined sugars are comprised of at least 50% fructose.
White sugar, brown sugar, cane sugar, evaporated cane juice… these are all 50% fructose.
It gets worse with sweeteners like corn syrup, agave, and fruit juice. In these cases, fructose
can make up as much as 65% of the sugar. Paul Stanhope MD has published numerous papers quantifying
just how damaging fructose is to human health. The results from his trials are very damning
to say the least.

Carrots, sweet potatoes, and potatoes on the other hand are almost entirely made up of glucose.
Not only is glucose much more compatible with our mitochondria and the bacteria in our GI, but
these sources of carbohydrate are also much better at delivering the glucose very slowly. Even
a well-cooked sweet potato delivers glucose at a markedly slower pace than any of these refined
sugars. Carrots, often maligned as a rich source of sugar, deliver their glucose at a rate of
about 40% of that of refined sugars.

In summary, not only are the qualities of the sugars found in vegetables different (mostly
glucose, very little fructose) but their delivery rates (often defined as their glycemic index
or glycemic load) are substantially slower. These attributes should help patients and their
families understand that there is a substantial difference in how the human body responds to
added sugars as opposed to the sugars found naturally within whole vegetables.

A FEW ‘HIDDEN’ NAMES OF SUGAR:

AGAVE NECTAR DEXTRIN GLUCOSE MALTOSE
BROWN RICE SYRUP DEXTROSE HFCS (HIGH-FRUCTOSE CORN SYRUP) MANNOSE
CANE JUICE FRUCTOSE MALTODEXTRIN SUCROSE
CORN SYRUP FRUIT JUICE
CORN SYRUP SOLIDS FRUIT JUICE CONCENTRATE [SCORES 105-136 (OUT OF 100)
ON THE GLYCEMIC INDEX]

MALTOL

John Bagnulo MPH, PhD. - Director of Nutrition

SPRING SUMMER 2017 31

HEAT SAFETY ARTICLE

By: Dr. Katherine Leaming-Van Zandt, Pediatric Emergency Medicine Specialist at Texas Children’s Hospital

Every year, thousands
of children suffer from
heat-related illnesses &
death, but many of
these tragedies can be
prevented. Keep
children safe this
summer by following
these simple tips:

Ensure your child is acclimated to the area’s
temperature and humidity!
Children need time to adjust to being in hot, humid
weather. Planning early morning or late
afternoon/evening activities and gradually increasing
outdoor time over the course of two to three weeks
will ensure they are adequately acclimatized to their
environment.

Properly dress your child before spending time outdoors!
Clothing should be light-colored, lightweight and limited to one layer of absorbent material to facilitate the evaporation of sweat. As
often as possible, sweat-saturated garments should be replaced by dry garments.

Protect your child’s skin from the sun!
In addition to staying in the shade, limiting sun exposure during the peak intensity hours and dressing children in lightweight clothing and
hats, parents should frequently apply (and reapply) sunscreen with at least 15 SPF to their child’s skin. Sunscreen should be reapplied
every two hours, or after swimming or sweating. It can be helpful to set an alarm as a reminder for longer outdoor playdates and activities.

Be sure your child is drinking plenty of fluids!
Before and during any type of physical activity, children should be encouraged to drink plenty of fluids, such as cool water or flavored
sports drinks. Due to their high-sugar and caffeine content, fruit juices, sodas and energy drinks are not recommended.

32 SPRING SUMMER 2017

Avoid playground equipment that’s directly
exposed to the sun!
Many parents don’t realize, but in direct
sunlight, playground equipment can quickly
heat up to temperatures in the triple digits.
Severe burns can result from young children
unknowingly exposing their skin to extremely
hot playground equipment. When possible,
avoid going outdoors midday and frequenting
playgrounds that are not shaded by trees or
canopies.

Never leave children in a car or other closed
motor vehicle!
The inside of a car can quickly reach dangerous
and life-threatening temperature levels! Since 1998, over 600
children in the U.S. have died of heat stroke when left unattended in a vehicle. To prevent heatstroke tragedies,
parents and caregivers should never leave children alone in or around a vehicle, always lock the car and ensure children do not have
access to keys or remote entry devices, create visual reminders to look in the back seat before you leave, and plan to have daycare
providers or other family members call home if the child hasn’t arrived on schedule or there’s been a change from the daily routine.

Know the signs and symptoms of heat illness and watch for them in your child!
Heat-related illnesses, such as heat cramps, heat exhaustion and heat stroke, cause a wide-spectrum of signs and symptoms.

Muscle cramps
Muscle cramps usually occur in the larger muscle groups, such as the hamstrings and buttocks. If a child develops painful muscular
cramping, she should start drinking fluids. Additionally, by encouraging the child to lie down in a cool area, while massaging and stretching
the affected muscles, her symptoms may improve at a quicker pace.

Heat exhaustion
Heat exhaustion is the most common form of heat-related illness, and will usually occur in children who participate in activities that lead
to profuse sweat loss! Symptoms of heat exhaustion include temperature elevation, headache, dizziness, lightheadedness, nausea,
vomiting and muscle weakness. If a child develops these symptoms, he/she should be moved away from direct sunlight and into a shaded
or air conditioned area. By fanning and rehydrating the child and placing ice bags around the neck, underarms and groin area, the core
body temperature will start to lower. However, if the child is unable to keep fluids down (due to nausea/vomiting) and appears
dehydrated, she should be seen by a physician.

Heat stroke is a medical emergency, with a mortality rate as high as 50 to 70 percent!
With severe dehydration, the normal sweating response can become impaired! Symptoms of heat stroke are similar to those seen with
heat exhaustion, but are typically accompanied by abnormal behavior or responsiveness, seizures, and core body temperatures greater
than 104°F. In addition to moving and cooling the child, 911 should be called immediately! Bystander CPR and the use of an AED (or
automated external defibrillator) may be necessary if the child stops breathing and/or no longer has a pulse.

Remember, heat-induced illness and death are preventable! Be sure to take the necessary precautions to ensure your child’s safety and a
fun-filled summer.

SPRING SUMMER 2017 33

Rett
GIRL

Spring/
Summer
GP2C

LET’S ROCK!

34 SPRING SUMMER 2017

Together for a cure

TEAM GP2C

Join 75 rett families in florida february 23-25, 2018 at
our 7th annual DISNEY 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 volunteers at our booth, too! PLUS,
FEBRUARY 23-25, 2018 we have other great things going on designed especially for Rett families: a
DISNEY WORLD - ORLANDO, FL workshop with Susan Norwell, a fun Saturday night dinner, and more! This is
WYNDHAM LAKE BUENA VISTA our biggest fundraiser. Help us make it the best ever!
RESORT
WWW.GP2C.ORG/PRINCESS TELL ME MORE ABOUT THE WEEKEND!

SCHEDULE OF This is our 7th year participating in this Disney event. We'd love for you to join us
EVENTS: for this amazing weekend filled with opportunity to learn and connect with other
Rett families. From volunteering side by side at our booth to just lounging by the
2/22 - 1-ON-1 SESSIONS WITH pool, there is something for everyone! We have discounts for hotel and park tickets
SUSAN NORWELL to share with you, too. Visit www.gp2c.org/princess for more information.

2/23 - RETT U LIVE! WORKSHOP
WITH SUSAN NORWELL

2/23 - 5K RUN
2/24 - 10K RUN AND TEAM DINNER
2/25 - HALF MARATHON

REGISTRATION FOR DISNEY PRINCESS 2018 OPENS APRIL 25, 2017! GP2C.ORG/PRINCESS

POWER THE FLOWER AT THESE 5K RACES THAT BENEFIT GP2C!

April 29: Power the Flower 5k
Jacksonville, FL
June 3: Racing for Rett 5K
Harrisonville, MO
August 5: Move It, Move It for Mateah
Casper, WY

SPRING SUMMER 2017 35

“I love you!”
“Girl power!”
“Let’s Go!”

Say it with your eyes using
the Tobii Dynavox I-Series+ with
built-in eye-tracking technology!

To learn more and to contact your
local Tobii Dynavox Sales Consultant,
please visit tobiidynavox.com.

Because every
girl deserves the
power of a voice!

In the GP2C Shop...

music therapy cd and activity booklet
9 songs and 36 activities!

gp2c.org/shop

36 SPRING SUMMER 2017

I love this quote from Hans Christian Andersen, author from Denmark where my
grandfather was born and raised. I've been to Denmark in the winter and I can only imagine
how glorious the first signs of Spring must be.

Sprigs of green peeking out to start a season of beauty and abundance. Flowers mean so
many things: life, beauty, love, joy and hope. I hope this issue helps you enjoy your
beautiful girls! Like flowers, they are full of wonder and delight. Thank you for tending to
your flower and ours while together cultivating this incredible community of support.

Ingrid Harding, Founder Girl Power 2 Cure

SPRING SUMMER 2017 37

CureRoadmap to a

R E V E R S E R E T T. O R G / C U R E

38 SPRING SUMMER 2017

gp2c.org for more information about writing for
our Rett Girl Magazine.

gp2c.org.

SPRING SUMMER 2017 39

WWW.RETTGIRL.ORG/GUIDE

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Wawe acrreeanteess

RETT

UNIVERSITY

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40 SPRING SUMMER 2017


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