BACK-TO-SCHOOL THE EVERYTHING RETT SITE
HOST A SPOOKTACULAR
DREAMING ABOUT HOME
“RETT GIRL MAGAZINE FALL 2016” © COPYRIGHT 2016 | WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED
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to help girls like
She’s bright. She’s brave. She’s full of
love. Her life was turned upside down
by Rett Syndrome. She lost the ability
to speak or use her hands. She cannot
run and play.
Top fundraiser wins! Help Girl Power 2 Cure win $1 million to
give tens of thousands of girls and
women battling this disorder a chance
at a better life.
donate between 9/14 and 10/26 at dreambigforher.org
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2 FALL 2016
As summer has come to an end we prepare for school Fall is all about getting back into a routine. There’s
to begin, the crisp fall breeze, pumpkin festivals, and something very reassuring and safe about routines --
the beautiful golden, rusty, red leaves. My FAVORITE they’re predictable, a bit easier to manage and a
time of year! welcome sight at the end of a “ﬂy by the seat of your
pants” type of summer. Our family loves to go school
Fall is refreshing and keeps our schedule full which I shopping getting all sorts of new supplies, new
am grateful for. We love to visit the farms, learn new clothes and new shoes for the school year and I LOVE
ideas, and share a fresh baked loaf of zucchini bread that school starts at just the right time, when the kids
that was harvested from our garden with a neighbor or are starting to get a little bored and I’m out of ideas
as a back to school treat. for entertaining them!
Our days are becoming shorter which almost seems Besides school starting, Fall oﬀers the welcome
like there just is not enough time in the day to balance crisp air that allows for those favorite jeans and
school and fall activities. Here are some great tips: sweater, snuggling up to a warm bonﬁre and of
course high school football games and apple
1. School always comes ﬁrst. Maybe take homework orchards. These are the types of things that we can
outside and get some multi-tasking in. Double win. enjoy as a family, everyone included, everyone
You complete a to-do on your list and enjoy the enjoying the fun of the season. As you ﬂip through
fresh fall air. the pages of this issue I hope that you ﬁnd a ton of
ways to enjoy the season with your Rett Girl and your
2. Make a schedule and stick to it. You will ﬁnd that whole family!
you will have more time than you thought and can
sneak in a game night for your family that maybe Bridget MacDonald
just wasn't doable in the beginning of planning your Rett Girl Coordinator
schedule. [email protected]
3. Be picky about extra curricular activities. Don't feel
like you have to do every single activity that is being
oﬀered. Find the right balance for your family and
most importantly for your Rett girl or boy.
4. Take a break. Breaks are important too. Allow your
body to re-energize and prepare for whatever is up
on your schedule next.
I look forward to hearing about your fall activities,
family outings and how well your child is doing in
school. Until then...
Family Support Team Leader
FALL 2016 3
“It’s a new season, a perfect opportunity to do
something new, something bold, something beautiful”
We’ve broken our Fall
Rett Girl Magazine down into six
Online? Click category to navigate to each section.
5 ACTIVITIES Fun List of Fall Activities
11 Recipes Back-to-School Lunches
17 Health and Wellness Tips for Home Modiﬁcations
21 EDUCATION Fun Apps for Another Engaging Year
24 PRODUCTS Back-to-School Must-Haves
31 Girl Power 2 Cure October Awareness
4 FALL 2016
LIFE STARTS ALL OVER AGAIN WHEN IT GETS CRISP IN THE FALL
F. SCOTT FITZGERALD
FALL 2016 5
Try Something New
Host a party at home
Halloween is a fun and exciting time for most children but for those with Rett it can be challenging to
handle all the sensory stimulation. Food restrictions and unpredictable weather are just a few of the
struggles. Holding a bag and saying “Trick or Treat” is tough. How about changing up Halloween to make
it a bit easier? Bring the fun right to her door this year by hosting your own Halloween party! With a few
great tips, you can pull oﬀ a great party that may even make traditional Trick-or-Treating seem boring!
FALL C HE X MIX - Our Suggestions for a Great Party!
FROM budgetsav v ydiva .coM
Serving Size PREP TIME TOTAL TIME • Invite your child’s school friends
4 05 10
• Get creative with invitations – use large
MIN MIN stamps to decorate so your child can help
• Make costumes optional – check
www.pinterest.com/rettgirl for ideas on how
to incorporate wheelchairs into costumes
• Make allergy-friendly ﬁnger foods –
www.glutenfreeandmore.com has some tasty
• Host games and activities –www.childfun.com
has a great list of Halloween games
• Hand out “goodie bags” with non-candy
treats – www.orientaltrading.com
has some great ideas
Dowwwnwloha.gadpn2odcu-.orourHgt /aahltao: lwoeweenen MCMPAhaearnopsrcdzhpoimMpelaraaomtnlerleionL.w.it.c..Po.F.a.rl.uitcteiesglutenfreeonashoestring.comWCahnGetclukttoeonumt-Fatkhreeeesyeocuahronwdoyw-t?no’s!•
6 FALL 2016 •
YOU CAN DO IT!
Make Halloween Spooktacular with these DIY projects!
Melted Crayon Pumpkin
This makes for a really cool project! All you need is a craft
pumpkin, glue, crayons and a hair dryer. Let your Rett Girl
choose the colors she wants for her pumpkin! Find
detailed instructions at www.embarkonthejourney.com
Use buttons, string, felt, pins, fabric, rubber bands, foam
stickers, or anything else you can find in your craft closet or
junk drawer and decorate pumpkins! Your Rett Girl can
choose what supplies she wants and where to put them!
Pumpkin Printed Treat Bag
All you need is a drawstring bag, a potato, knife, orange and
green paint and you can make this great treat bag! Help
your Rett Girl use hand over hand to “stamp” with the
potato! Find detailed instructions at www.parents.com
Milk Jug Ghosts FALL 2016 7
Draw a ghostly face on an empty milk jug with a black
marker and fill it with Christmas lights. Then display them
on your porch, sidewalk or driveway. Your Rett Girl will get
a kick out of seeing these all lit up!
Head Out the Door!
Enjoy the cool, crisp air!
Fall High School Football Game Hay Rides
Take your Rett Girl out for an excit- Most local orchards will oﬀer hay
Fall is a PERFECT time for ing night at your local high school rides. Call and see if they can
you to get out and about football game! Check with the local accommodate people of all abili-
with your Rett Girl! Typically high schools in your area and make ties: wagons that are low to the
the weather is pretty mild - sure you make it to a homecoming ground, have bench seating with
not too hot and not too cold game that may have even more backs or have ramps for wheel-
- so temperature sensitivity excitement! chairs, walkers or special needs
shouldn’t be too much of a strollers.
concern. However, to keep College Football Game
your Rett Girl as comfortable Apple Picking
as possible make sure to If your Rett Girl likes high school
dress her in layers, that way football games she will LOVE a This is a great time of year for apple
you can always take oﬀ if college football game! Pick a local picking! Check with local orchards
she’s too hot or put on if team and make a day of it! You to see if they accommodate people
she’s chilly! Always pack might even want to tailgate!! Check with special needs and/or wheel-
extra blankets and don’t out cbssports.com for the 2016 chair users. Many times they can
forget a hat to keep the sun college football schedules. make accommodations, all you
out of her eyes. have to do is ask.
Trick or Treating at Malls
instwriutyhcKoteauei’pornenohe-sosruetawwatanbrrdmlaeantwbtkeohgtiuliet–rl.org Pumpkin Picking
Stay warm and dry! Many malls will
have Trick or Treating during the Pick out your very own pumpkin
week leading up to Halloween. this year! Carve it, decorate it or
Check with your local outdoor and just grab a bunch of diﬀerent sizes
indoor malls. and shapes and decorate your front
porch! You can also enter your
pumpkin in our 3rd Annual Pump-
kins for Rett contest through the
Girl Power 2 Cure Facebook event
page. Use #pumpkinsforrett!
8 FALL 2016
Corn Maze Public Library Trick or Treat
Many local orchards and farms will Your local library is always a great
have corn mazes. Always call ﬁrst place to go to ﬁnd a good book, but 1. Trunk or Treat at
to see if they are able to accommo- why not check out what else they local churches
date wheelchairs but also do a real- have going on? Concerts, story
ity check about the weather and time, crafts, some even bring in 2. Trick or Treat at
conditions – pushing a wheelchair therapy dogs! an indoor mall
through mud can get VERY messy! Go to www.worldcat.org
3. Fall Festivals at
Children’s Museums County Fairs local churches
If the weather gets too chilly head County fairs are a great place to go
indoors to a Children’s Museum! to explore, have fun, learn and EAT! 4. Host a bonfire –
Lots of the activities are hands on, Search for a fair near you at don’t forget
educational and just plain FUN! www.countyfairgrounds.net the s’mores
Wikipedia has a great list of Chil-
dren’s Museums in the United Adaptive Playground
What a great time of year to get out
Zoo and PLAY! Visit an adaptive play-
ground near you for some fun!
Fall is a great time to visit the zoo! Check out 30 of the most impressive
The animals are always more active inclusive playgrounds at
when the weather isn’t so hot. tinyurl.com/m7xrtef
Check with your local zoo to see if
they have any additional fall activi- SoCmhefteiasicmmkfmeoilosryouv-sttifehorNemineebiengtdehgfsltyrtleiixmnaa!t.occ,tviioveimsty!
ties like Halloween Zoo Boo, or
Check www.oﬃcialusa.com for the
oﬃcial USA zoo directory.
FALL 2016 9
R e c ip e s
FOOD IS OUR COMMON GROUND, A UNIVERSAL EXPERIENCE
10 FALL 2016
Girls Just Wanna…Eat Real Food!
JulCiOe -&FOTUoNnDEyRBS, oRmEAbLaFcOinOoD&BLSENoDnS AJ IngrFidOUHNaDrEdRin, GgIR&L PDOaWuEgRh2tCeUrRSE arah
Born from a mom & dad’s love for their tube-fed son, Real Food Blends
makes 100% real food meals for people with feeding tubes. No corn
syrup or preservatives, just real ingredients to nourish your body and
soul. We’re excited to partner with Girl Power 2 Cure and Rett University
to provide better education, support and nutrition options to all of you
living with Rett Syndrome and a feeding tube.
LEARN MORE OR ORDER AT
A HEALTHY ALTERNATIVE FOR RETT GIRLS WITH A G-TUBE OR HAVING TROUBLE CHEWING
IMPORTANT Blended diets can be just as exciting as eating by mouth. Give your Rett Girl
TIP! plenty of options and a wide variety of foods so she can enjoy the same good
food and nutritional beneﬁts as everyone else! We know it can get challeng-
One of the most diﬃcult ing at times. Thankfully Rett Girl is here to help with LOTS of ideas!
things with starting and main- Hearty Morning Breakfast School Lunch
taining a blended diet is keep-
ing up with the meals and the
demands of constantly having •2 eggs scrambled in butter •45 grams of cooked chicken
•2 Tbsp. cooked lentils
a meal on hand. The easiest •½ cup potato •½ Cup green beans
way to combat this issue is to •15 grams coconut ﬂakes (cooked in butter)
batch blend and store or •¼ avacado •2 Tbsp. olive oil
•Blend with hemp milk or
freeze meals. Batch blending •½ cup spinach
means blending large •Blend with hemp milk or •Total calories: 350
amounts of food and portion- *Mix on soup setting in a
•Total calories: 550 Vitamix or Blendtec blender
ing them out for speciﬁc until it is think enough for a bolus
*Mix on soup setting in a or pump feed.
meals. Take the meals above Vitamix or Blendtec blender
until it is think enough for a bolus
and multiply each ingredient or pump feed.
by 5, once blended split into 5
portions. But, now that you
have these 5 portions how do
you store them? Some
people use mason jars, others
use plastic sandwich bags, or For our Rett Girls on a blended diet, pureed
OR on Pediasure or other meal supplement,
you can just store right in the diet
syringes. Make sure all
cooked food is either frozen
or kept in the fridge to keep FUNCTIONALFORMULARIES.COM
has an exceptional Whole Food Meal Replacement!
12 FALL 2016
Perfect recipes for back-to-school lunches
Packing school lunches is exciting and fun…….. for the ﬁrst week of school! Then it becomes monoto-
nous and just frustrating to come up with new ideas and something that will be quick, easy, nutritious --
something that your Rett Girl can actually eat! Thankfully Rett Girl is here to help with LOTS of ideas!
C hi c kp e a N u ggets – f rom myplantbasedfamily.com
• 1 15.5 oz. can chickpeas,
• ½ tsp salt
• ½ tsp garlic powder
• 1 tsp granulated onion
• 1 Tbsp nutritional yeast
• 1 Tbsp corn crumbs
• ⅓ cup corn crumbs for
Serving Size PREP TIME TOTAL TIME
8 15 20
1.Preheat oven to 350 degrees.
2.Pour the drained chickpeas into a food processor and process for a few seconds.
3.Then add all of the other ingredients except the last ⅓ cup corn crumbs for coating. Process a few more
seconds. Everything will be well mixed and chunky texture.
4.Scoop up teaspoon-sized globs and roll them into balls then smash them into nugget shape.
5.Pour corn crumbs into a bowl and coat each nugget with the corn crumbs.
6.Cover a cookie sheet with parchment paper. Lay each nugget on the parchment but don't let them touch.
7.Bake for 20 minutes, then ﬂip and bake for 10 more.
8.Allow nuggets to cool before eating.
FALL 2016 13
Cinnamon Apple Energy Bites – From reciperunner.com
• 1 cup dried apples
(not freeze dried)
• 1/2 cup medjool dates
• 1/2 cup unsalted dry
• 1/2 cup old fashioned oats
• 1 Tbsp maple syrup
• 1 tsp cinnamon
• 1/8 tsp allspice
• 2 Tbsp water, more if needed
Serving Size PREP TIME TOTAL TIME
20 15 15
1. Soak the dates in hot water for 10 minutes.
2. Add all of the ingredients to a food processor or high spMeeudsbeluemnder and blend until the mixture turns into a
paste or dough like consistency.
3. Scoop out heaping tablespoons of the mixture and roll into balls.
4. Store the energy bites in an airtight container in the refrigerator or freezer.
14 FALL 2016
Vegan Mac and Cheese – From Laurafuentes.com
• 8oz (half of a 1lb box) of
gluten free pasta
• 1 small sweet potato, cooked
• 1 Tbsp coconut oil
• 1½ tsp yellow mustard
• ½ tsp cumin
• ¼ tsp salt
• ½ - 1 cup coconut milk or any
dairy free milk
Serving Size PREP TIME TOTAL TIME
4 10 20
For 25 gluten and
DIRECTIONS alergy free lunches check out
1.Boil pasta according to box directions. Meanwhile, cook your
sweet potato in the microwave, turning it once, if needeMd.u s e u m
2.Peel sweet potato and mash it with a fork.
3.In your blender or food processor, puree warm sweet potato, yellow mustard, cumin and salt to a smooth,
creamy consistency. Add a splash of milk, if needed. The "sauce" will be thick not runny.
4.Drain pasta and put it back the pot. On low heat, add coconut oil and mix well. Add sweet potato puree and mix
until evenly distributed on low heat. Slowly pour coconut milk in the pot ½ cup at a time. How much you add
depends how much "sauce" your family likes.
5.Serve immediately warm.
FALL 2016 15
16 FALL 2016
HOW WONDERFUL IT IS THAT NOBODY NEED WAIT A SINGLE MOMENT
BEFORE STARTING TO IMPROVE THE WORLD.
FALL 2016 17
B E S T FA L L P R O D U C T S
Back to School
Start the School Year off Right!
RGEI RTLT. O R G !Search FOR all of these products on Headband headphones
Super comfortable kids headphones. These are great for our
RETTGIRL.oRG with links to PURCHASE! Rett Girls who have trouble with ear buds or struggle with
keeping those bulky over-the-ear headphones on. They’re
1SpaDiﬀuser lightweight, comfortable,
washable headbands with
Grab your Rett Girl’s favorite essen-adjustable, removable
tial oils (or the ones that help her speakers that provide the
sleep) and set up this diﬀuser in herperfect ﬁt.
room. This ultrasonic diﬀuser
creates a soothing, healing vapor. Head Massage
Hypnotic color change from six Place the tips of the ﬂexible rods on the scalp and gently
rotating LED lights can be controlled move back and forth to release tension and increase blood
with an on/oﬀ switch. A must-have circulation with this copper infused scalp massager. You and
your Rett Girl might ﬁght over this one!
2for a great night sleep!
3FlipBooks LunchBots are fantastic stainless steel meal
containers that are a safer alternative to plastic
Rett University has partnered with Susan and a cost savings over buying all those plastic
Norwell to bring you her popular Communica- bags! Not to mention the fact that they are easy
tion Flip Books. Choose from a 4-grid communi- to clean AND super cute for school lunches!
cation book, uppercase letters, lowercase
45letters, core words or buy the full set!
18 FALL 2016
ST Y L I N GFunctional Styles for Angel Scarf
Now there’s a stylish way to protect the
your rett girl this clothing of your Rett Girl without compro-
mising fashion. Angel Scarf comes in a
F A L LFALL season! variety of colors and sizes to suit every age
group. Made of lightweight absorbent
Socklings Socks cotton. Machine washable for easy care.
USA-made thigh-high children’s socks are BONUS: $5 of each “Girl Power” scarf sold
fantastically stylish and ultra soft. They grow will beneﬁt Girl
6with your child, which means they will never Cure!
grow out of them! They are perfect to wear with Bag Pack
AFO’s. These are great, very durable
78FIND ALL PRODUCTS backpacks that come in tons of
ONLINE USING SEARCH diﬀerent colors, four diﬀerent sizes,
have matching lunch bags (sold
9 TOOL ON RETTGIRL.ORG separately) and extra features like
an MP3 pocket!
Squids 10 Non-slip Headband
Squids (Square IDs) are a new kind of Keep your Rett Girl’s beautiful hair in place all day
medical ID that connects to an online long with these adorable, non-slip and adjustable
medical proﬁle and alerts emergency headbands. They come in TONS of colors too so
contacts. she’ll be able to match with all of her outﬁts.
Medical professionals can access medical
information by either scanning the QR bar
code with a free app or by going the
website address written on the back of
the Squid. Wear it as a cute bracelet or
clip it on her back pack!
FALL 2016 19
EDUCATION IS THE MOST POWERFUL WEAPON
WHICH YOU CAN USE TO CHANGE THE WORLD.
20 FALL 2016
Back to School
Great reading resources
One More Story! EZ Tales!
Check out this online EZTales is an online publisher
subscription-based library of
the best classic and contem- of award-winning children's -
porary children’s literature.
Presented in a most entertain- animated read-aloud books,
ing, provocative and creative
way, the site makes books story songs, lesson plans,
accessible and enjoyable for
pre-readers and early readers. games and puzzles that -
You can try a book for free or promote early childhood
buy a yearly subscription to
the whole online library for literacy. Their mission is to
$44.99. This site is great
because it has something for make learning to read fun. All
everyone! You can see the
pictures, hear the musically of their books and songs have
scored stories or use the
“I can Read It” mode with a moving pictures and are read
Click-to-Hear option for
challenging words. aloud by professional actors,
Hook up a switch (see below) complete with award winning
to the computer and your Rett
Girl will also be able to turn music, sound effects and
the pages of these online
books. You can read books voices. The stories come to Storyline Online! -
online or use the app and take
the One More Story library life while capturing the -
with you wherever you go!
imagination of young readers. storylineonline.net
It's easy for kids to follow We love this site because it is
totally FREE! This site
along because words highlight records well-known actors
reading children’s books and -
as they're read aloud. There makes graphically dynamic
videos so that children around
are over 1,000 books in this the world can be read to with
just the click of a Storyline
library! You can try it FREE Online video book image.
They have a great library of
for a week and if you like it classic books
you can subscribe for $6.95
per month or $59.00 per year.
FALL 2016 21
E D U CAT I O N I S I M P O RTA N T !
LET EVERYONE KNOW HOW SMART SHE IS! WE HAVE THE TOOLS
TO TEACH OUR RETT GIRLS. IT’S JUST A CLICK AWAY.
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. Website: www.rettuniversity.org.
CHOOSE FROM 10 courses TO INCLUDE:
GETTING STARTED WITH TOBII EYEGAZE
Emergent literacy for girls with rett syndrome part 1 & 2
Guided reading for girls with Rett Syndrome Part 1 & 2
THE POWER OF MUSIC
CFhelicpkBouootRkoseutratvn-aeUiwlabSCletonomormweunaictatthieon CREATING SOCIAL CONVERSATIONS
Building Social Communication- From Story Co-Construction to Narratives
Communicator 5- Setting Up, Customizing and Communicating- Part 1
NEW COURSE COMING MID-SEPTEMBER:
NEW! Teaching the Word Study Block: Making Words and Sight Word Learning
The Word Study Block is an essential component of the Four-Block Balanced
SECTION Literacy Model for conventional readers. This course will fully instruct the
process of building decoding skills for individuals who are nonverbal with
limited or no motor skills.
WELCOME TO OUR NEW COACHES!
For two years, Rett University has worked behind the scenes to recruit and
prepare professionals committed to doing more for students with Rett
Syndrome. During this time, Susan Norwell has mentored coaches to build a
network of resources that families, educators and therapists can connect with
for support and guidance in helping students with Rett Syndrome build com-
munication, language and literacy skills.
Rett U Coaches will be available for one-to-one consults, IEP goal develop-
ment and eye-gaze device programming. They will also be working with
schools and development centers to provide the foundation and context
many need when working with students with Rett Syndrome. Abigail Davison-Hoult, Kourtney
Learn more at www.rettuniversity.org/courses/coach-connect. Barnam, Callie Ward, Kristi Kraddock
22 FALL 2016
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 904.277.2628 FALL 2016 23
Fun and Interactive Learning
Make Learning Fun!
Evaluate an Sock Puppets App Grammaropolis
You Buy It! Sock Puppets lets you create your own Grammaropolis is where grammar lives!
lip-synched videos and share them on Hailed as a Schoolhouse Rock for the 21st
It’s hard to shell out money Facebook and YouTube. Add Puppets, props, Century, Grammaropolis uses the parts of
for an app before you have scenery, and backgrounds and start creating. speech as animated characters whose
the chance to see it. How do Hit the record button and the puppets personalities are based on the roles they
you know if an app will work automatically lip-synch to your voice. play in the sentence. From the shady
for your Rett Girl or if she’ll Friends can work together with multiple pronoun always trying to take the noun’s
even like it? Here are some puppets and create hilarious conversations. place to the motherly conjunction who
great tips on evaluating an While recording, simply tap a puppet and just wants everyone to get along, Gram-
app before you buy it: that puppet will lip-synch, tap a diﬀerent maropolis achieves the seemingly impos-
1.Visit the iTunes store in puppet and switch auto lip-synching to it. sible: we make learning grammar fun!
Switch backgrounds to take your puppets to Your free download includes access to the
the online app page and diﬀerent places, move the puppets, props Noun neighborhood. Let Nelson the Noun
research through the and scenery to animate them while lead you with a curriculum map that
reviews and screenshots. recording. Cartoon and photo realistic includes a song, a book, videos, and over
2.Search YouTube for tutori- puppets are included. Your Rett Girl can- 400 quiz questions. Follow the map to
als and reviews of the app work with her communication device to earn your badge!
3.Categorize the app by create the conversation! This is a free app but you can Upgrade
type (such as writing, This is a free app and available for iOS. with In-App Purchases at any time for
spelling, etc.) then search access to the other seven parts of speech.
the internet for the best Pictello Available for iOS and Android.
Check out more apps at Everyone loves to tell fun, engaging, and Glitter Draw
www.rettgirl.org imaginative stories. Go ahead and make a
social story or visual schedule or a slide Who doesn’t love glitter? A simple touch
HbBUuyGsrEiEinadaglsgisssstitneetsraogfsnSAmdaeaepparnppdltssss,t-r.ohobeaoravlssiges!weaded show of holiday pictures for your friends - of the screen and you can draw with a
Pictello makes it a breeze to create and glitter “pen.” Your Rett Girl’s drawings
24 FALL 2016 share! Whether you use the included will sparkle and twinkle! You can draw
natural-sounding Text to Speech voices, glitter on top of your pictures from your
or record your own voice, Pictello is the device and you can save your glitter draw-
perfect tool for visual storytelling. Each ings to photos or send them as emails!
page in a Pictello story consists of a photo Lots of fun. There are two apps, one is
or video and some text, which can be read free with just white glitter and the second
aloud by a Text to Speech voice or your is $1.99 for more glitter colors. Available
own recorded audio. This app is $19.99 for iOS. (comparable Android app is
and is available for iOS. Sparkle Draw)
a h and Wellness
LIFE STARTS ALL OVER AGAIN WHEN IT GETS CRISP IN THE FALL
F. SCOTT FITZGERALD
FALL 2016 25
H o m e M o d i f i cat i o n s
Bathroom & Home Remodels
Remodel Advice from Two Rett Moms
Leslie Greenﬁeld, Executive Chair from Columbia Medical Our second bathroom remodel, dries quickly and gives a bit
Director at the New Jersey Rett ten years later, was a 20’x20’ more elbow room than a wall.
Syndrome Association and Rett dollars for it) so for many years ﬁrst ﬂoor bedroom/bathroom We do get a bit of splashing
mom to Heather, shares her we just used a plastic patio addition oﬀ of our family room water outside the shower and of
experience modifying two chair with an old Tumble Forms so Heather would be closer to course run oﬀ from the shower
bathrooms. molded seat. This worked great us. It has access to the front chair as we dry oﬀ, but it all
because the Tumble Form seat driveway so she can come and wipes up quickly. We did not
Over the years we have done is rounded on the bottom go directly to her room or make a drain in the middle of
two separate bathroom allowing it to be angled in the through a back door onto the the room and really have not
remodels to accommodate our patio chair to help keep the deck. We have a table and chairs needed one. We chose a
daughter. Our ﬁrst bathroom water out of her face. in a sitting area for activities, combination exhaust fan/heater
was very small, so we gutted it snacks, nurse notes etc. The on the ceiling and really love it.
and expanded into an area that Remodel 1: Bathroom bathroom is 6’x10’ with a 6’x3 It warms the room quickly and
was a hall and a closet to create 10’x10’ (5’x5’ shower area) ½‘ shower area. We could not go helps dry oﬀ. We found a
a 10’x10’ room. The 5’x5’ ¼” sill – not recommended much wider than 6’, because the shower chair that has adjustable
shower stall is in the corner. Shower chair alternative: plastic shower hose isn’t long enough height and reclines in several
There is room for Heather in her to reach unless you install positions. We roll her from her
shower chair plus two adults. patio chair with Tumble Forms shower heads on both ends. bed to the shower and back to
We wanted a smooth ﬂoor to molded seat. This time, we knew we wanted a bed. We do have a ceiling lift
enter the shower area, but the smooth transition into the over her bed, and a mesh sling
tile man insisted on just a Remodel 2: Bedroom/ sitting shower area and asked the that can go into the shower, but I
marble sill which is only about area/ bathroom contractor to frame out the ﬂoor still lift her in and out of bed for
¼” high to keep any over ﬂow 20’x20’ accessible from driveway area so the shower would be now.
water out of the room. Even that slightly lower than the rest of
little bump made it hard to get and back deck the room for proper draining. Shannon Madden, Rett mom to
the chair over, though. We never 6’x10’ bathroom However, he failed to draw the Oakley, shares her experience
did ﬁnd the right shower chair, (6’x3.5’ shower area) plans that way, we missed it, and building a new home with
(or want to spend hundreds of Table chairs for activities, snacks, the framers were so quick we modiﬁcations for her daughter.
didn’t notice until it was done.
nurses notes So, the room is a regular ﬂat We decided the best option for
Rolled “hill” ﬂoor-shower ﬂoor. We purchased an ADA our family would be to build a
shower pan online, which made home so we could make it work
transition installation very easy, but it did for everyone in our family.
Curtain instead of door raise that area of the ﬂoor about Fortunately my husband has
Ceiling fan/heater to keep 1/4” so our tile installer made a been in construction for almost
little hill to roll over into the 20 years. It’s a lot to think about
bathroom warm shower area which works ﬁne. In and plan for. Looking into the
this shower we have a curtain future to try to guess what our
because it allows the whole area needs would be was scary, but
to be open to get in and out, we just tried our best. Having a
garage with enough room to
26 FALL 2016
unload and load wheelchairs and The master bath has a lowered Funding Your Home
open sink that she can roll under Modification:
strollers has been nice. It will for cleaning up and daily
hygiene. She loves doing things • Rebuilding Together is a nonproﬁt that provides
have a ramp in and out of it this like everyone else, of course. We home repair and modiﬁcations for low-income
also have a higher toilet seat in families, people with disabilities, seniors, Veterans
winter (still on the list). Our that bathroom. We have an open and military families. Contact your local aﬃliate
barrier-free shower that holds for more information. togetherwetransform.org
entrance is big enough to park her shower/potty chair. It has
shower heads on both ends so • The National Resource Center on Supportive
her wheelchair and activity chair that water is on her at all times Housing and Home Modiﬁcation promotes aging
so she doesn't get cold. in place for seniors and those with a disability.
if needed. Our ﬂoor plan is open Eventually our back deck will be The Center gives families the knowledge they
able to let her roll out to the need to plan for their housing, health and supportive
so she can be moved through yard too and my husband put service needs. gero.usc.edu/nrcshhm
extra support in the ceiling if a
easily and see what is going on. track lift needs to be put in. • Your local Independent Living Center may be able
to suggest funding sources for home modiﬁcations.
All of our hallways and doorways We did a commercial grade ILCs also provide advocacy and support services
ﬂooring that is water proof and for people with disabilities. ilru.org
are extra wide so her activity supposed to hold up to
wheelchairs. The entire main • Easy Access Housing for Easier Living is a brochure
chair can turn around in them. All house, except for the girls’ from Easter Seals that has tips on how to adapt
rooms, are this ﬂooring, so it’s your home to accommodate a person with a
of bedrooms are at one end of seamless and there are less disability. Your local Easter Seals chapter can
bumps for the wheel provide you with information about possible
the house and Oakley's is next to chair/activity chair. Oakley's ﬁnancing options to pay for modiﬁcations to make
Rifton Activity Chair has been your home accessible. tinyurl.com/pw3scrt
our room for quick access. the most wonderful addition. It
pumps up and down and tilts • Your local Aging and Disability Resource Center
Custom home: forward and back to helps her (ADRC) may be able to refer you to an organization
Large garage for loading and adjust to the levels of the table or company that provides home modiﬁcations
and sink. We have plans to put a services. ADRCs oﬀer information on long-term
unloading wheelchair lift chair down to the basement supports and services for older adults and people
Large entrance for parking but for now our home is working with disabilities. adrc-tae.acl.gov
beautifully for all of us!
wheelchair/activity chair • Some state housing ﬁnance agencies have loan
Open ﬂoor plan programs to help people with disabilities and their
Extra-wide hallways and families who are buying a home that needs
modiﬁcations. Many states have home modiﬁcation
doorways programs that are part of their state Assistive
Daughter’s room next to Technology programs. These programs provide
low-interest loans to buy assistive technology or to
parent’s room help pay for home modiﬁcations and adaptations
Lowered sink to make your home safe and accessible.
Higher toilet ncsha.org/housing-help
Barrier-free shower with two
*** Find more information about home modiﬁcations
shower heads by visiting Disability.gov’s Home Modiﬁcations &
Extra ceiling support for future Repairs section. Use the “Locations” menu on the left
side of the page to ﬁnd home modiﬁcation programs
ceiling track in your community.
FALL 2016 27
Future: ramp in and out of
garage, oﬀ of back deck plus
lift chair down to basement
OCTOBER IS THE OFFICIAL RETT SYNDROME AWARENESS
MONTH. RETT GIRLS’ FAMILIES ARE HOLDING AWARENESS CAM-
PAIGNS AND FUNCTIONS AROUND THE WORLD TO FURTHER
RAISE AWARENESS AND RAISE FUNDS FOR RETT SYNDROME
RESEARCH. WON’T YOU JOIN US?
28 FALL 2016
FALL 2016 29
3RD ANNUAL CONTEST
Pumpkins for Rett
HELP US RAISE AWARENESS FOR RETT SYNDROME
JOIN US FOR OUR 3RD Post your pumpkin pics to our Pumpkins for Rett Facebook event:
ANNUAL PUMPKINS FOR www.fb.com/girlpower2cure/events
RETT CONTEST! Want to host an event to beneﬁt GP2C?
Girl Power 2 Cure's main goal is to raise
GET YOUR ARTISTIC FLARE awareness and funds for Rett Syndrome
ON AND GATHER YOUR research. Through grassroots fund raising
FAMILY AND FRIENDS events we are bringing the Rett Syndrome
TOGETHER TO DECORATE story to tens of thousands of people.
PUMPKINS AND SPREAD Contact [email protected] to get started!
AWARENESS FOR RETT
THE CONTEST RUNS FROM
OCTOBER 1 – OCTOBER 31ST
THE WINNER WILL BE
ANNOUNCED ON MONDAY,
NOVEMBER 2ND AT 3PM EST.
PRIZES WILL BE AWARDED FOR:
•MOST LIKES ON FACEBOOK
POST YOUR PUMKINS
30 FALL 2016
R U N T O R A I S E AWA R E N E S S & F U N D S
join us and help us run miles for a cure!
Team GP2C is committed to providing an opportunity for racers to be able to raise awareness and funds for
Rett Syndrome research as well as support for girls and their families aﬀected.
3rd Annual Move It Move It for Mateah 5K - Evansville, WY
6th Annual Win for Brynn - Ugly Sweater Virtual 5K
February 24-26, 2017
Disney Princess Half Marathon - Orlando, FL
REGISTER TO RACE ANYWHERE!
Team GP2C oﬀers the opportunity for you to spread awareness and raise money for Girl Power 2 Cure by
running the race of your choice anywhere you choose! For more info visit: gp2c.org/teamgp2c
Select from two OPTIONS:
O P T ION 1 #PowerTheFlower with a Team GP2C race shirt, Team GP2C medal and some other items to help spread
awareness on race day.
O P T ION 2 Take advantage of our incentive plan where you
could earn a reimbursement of over $600 to cover your
race entry fee, travel and hotel expenses.
Go to gp2c.org/teamgp2c for details and to register to join
Team GP2C and start spreading awareness and raising funds
FALL 2016 31
“I love you!”
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.
girl deserves the
power of a voice!
32 FALL 2016
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FALL 2016 35
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36 FALL 2016