RettGirl Magazine - Fall 2017

Fall
2017

MEET ANNIE SMITH
RETT MOM AND

HANGRYHOUSEWIFE!

SPICES OF THE SEASON
TO HEAL, SOOTH AND
CUT INFLAMMATION

SUSAN NORWELL
SHOWS US HOW TO
MODEL LANGUAGE

ON A DEVICE

THE EVERYTHING RETT SITE

PHOTO CREDIT: EVELYN LE

“RETT GIRL MAGAZINE FALL 2017” © COPYRIGHT 2017 | WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED

2 FALL 2017

I hope that the 2017-2018 school year is a positive, fun and
uplifting year for you and your child. I would love to hear how
your school year is going! Please reach out and share your joy!
Power on!

Kristin Hileman
Family Support Team Leader
[email protected]

A new school year means a new grade, new teachers, new goals, Fall means back to school for our family! But as you probably
and maybe even a new school! I want to share some goals on how know, school looks a little different to us then it does for most
to prepare and make this school year a smooth transition and kiddos. When the start of school comes (September 8th), our
hopefully it will help make the school year a little easier for you daughter Annie will not hop on a school bus and go to a brick and
and your child. mortar school like her brothers and sister will. Our Annie attended
public school for pre-school and Kindergarten and we tried to
1. Organize All That Paperwork: There are tons of papers and make things work in our school district but very quickly discov-
documentation to keep track of in the world of special education. ered that it was just not a good fit for Annie. In 2011, we reluctant-
Try to keep a family calendar of school events, meetings, confer- ly decided to homeschool her. I say reluctantly because I was
ences, etc. Setting up a binder or folder to keep all of those terrified to leave a team of professionals and take on the job of
important papers, meeting notices, and IEP's in sequential order educator, PT, OT, SLP oh, and MOM all by myself. I thought for sure
will help you stay a little more organized. I would let Annie down and that I wouldn’t be able to keep up. I’m
happy to share I was wrong and today, Annie and I are flourishing!
2. Start a Communication Log: Keeping track of all phone calls, She is learning at levels grade appropriate for her and I am much
e-mails, notes home, meetings, and conferences is important. Be more relaxed and calm knowing this is where she is supposed to
sure to note dates, times, and nature of the communications you be.
have and with whom.
And isn’t that the goal of each and every one of us parents – to
3. Review Your Child's Current IEP: The Individual Education Plan have our children learn, grow, experience new things and thrive?
(IEP) is the cornerstone of your child's educational program, so it's
important that you have a clear understanding of it. Note when In this issue, we’ve pulled together some great resources to
your child's IEP expires or is up for re-evaluation. Most important- assist you in helping your child do just that! (Check out our
ly, be sure that the IEP still "fits" your child's needs! If you're education section on page 20!)
unsure, contact the school about holding an IEP review meeting.
4. Relieve Back-2-School Jitters- Just talking about the upcoming We hope that whatever your “back to school” looks like that you
school year and changes helps reduce some of the back to school embrace what your child IS capable of and it helps BOTH of you
anxiety for everyone. Talk with your child about EXCITING new thrive!
classes, activities, and events that they can participate in during
the new school year. If attending a new school, try to schedule a Bridget MacDonald
visit before the first day. Rett Girl Coordinator
[email protected]
5. Keep Everyone Informed: It’s important to keep in a routine
once school starts. I highly recommend beginning with practicing FALL 2017 3
your new schedule, focusing on morning and evening routines
well in advance of the first day of school.

6. Attend School Events: Take advantage of open house, back to
school night, parent teacher conferences and others to help you
and your child get a feel for the school and meet teachers, other
staff, students and families. Share and teach others about all the
incredible work your girl can do when given access to the tools
and resources she needs to be successful. Be sure to let teachers
know about changes, events, or IEP concerns that should be
considered for your child's needs. Playing an active role at school
as a family helps to build relationships and better understanding
of your child and helps to break down barriers wherever present.

7. Leverage Rett University: Rett U has a host of online courses
available to you and your child’s teachers and staff to help guide
everyone towards important educational components needed for
all of our students with complex needs. Check Rett U out at
www.rett-u.org and share with teachers, staff and administrators
whenever possible. It is impacting our girls with Rett at school all
over the world in incredibly positive ways!

Rett
GIRL

FALL

Magazine

I’m so glad I live in a world with October’s!

We’ve broken our Fall
Rett Girl Magazine down into six

fabulous categories.

Click the category to navigate to each section

5 ACTIVITIES A fun DIY and Communication Pages!
10 Recipes
16 Products Delicious dishes from Annie Smith!
20 EDUCATION
26 Health and Wellness Must –have items for school
30 Girl Power 2 Cure New apps and great books
to go back to school with
Anti-inflammatory foods
from Functional Formularies
RSRT Explains a New
Phase of Research

4 FALL 2017

Rett
GIRL

FALL
Activities

AUTUMN PAINTS IN COLORS THAT SUMMER HAS NOT SEEN

FALL 2017 5

Try Something New!

Halloween Ribbon Wreath

Get Creative with your Rett Girl

Your Rett Girl is going to LOVE assisting you in making this Halloween Ribbon Wreath. This is a great project
that is super easy and can easily become a tradition to change it from seasons, holidays and special
occasions – think sports teams, birthdays, graduations and other fun times! Check out the next page too for
a communication page set that you can either print or download right into Communicator 4 or 5.

Ribbon Wreath:

Ribbon Wreath Instructions:

• Gather your supplies: a variety of ribbon from your ribbon
stash or purchased. Different widths, patterns and textures
are the best. The more variety the better! This is where it’s
going to be fun for your rett girl! Clip those craft coupons
and go shopping! Let her pick out her favorite ribbons!
Also, pick up a straw wreath for the base.

• Wrap your straw wreath in one of your selected ribbons.
Solid black works well and keeps the straw from ruining all
your fun with the inevitable “peek through.”

• One option that is great and makes a big difference is to cut
the ends of all your ribbons in a v-shape. This will give your
wreath a more finished and festive look.

SateeLathnedebelSogeepLoasntdteuetDoor.icaolm • Now the fun part! Fluff until you get it how you want it and
hang it up!

6 FALL 2017

To access instructions and Communicator page set for this activity, go to rettuniversity.org

Library > Resources > Free Resources.

FALL 2017 7

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

8 FALL 2017 Because every girl deserves
the power of a voice!

Say it with your eyes using theTobii Dynavox I-Series+
and Access solutions featuring eye-tracking technology!

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

Power to be You

Fall Activities!

DIY FUN!

So many ways to celebrate the season!

Leaf Suncatchers

All you need is fall colored tissue paper, self-laminating
pouches, permanent marker and double-sided tape. Your
Rett Girl can help choose the colors of tissue paper and
enjoy looking at the fall foliage on the windows! For full
instructions check out

www.ehow.com

Water Bottle Cap Pumpkins

Here’s a simple pumpkin craft for kids to make for fall! You
probably already have a recycled water bottle lying around
the house so make some cute pumpkin stamps with it!
instructions can be found at

www.craftymorning.com

Glitter Slime

For this project, you will need - 1 bottle of Elmers glitter glue, 1 cup
water, 1 tsp. borax and 1 Tbsp. of water and in just 4 easy steps
you can make GLITTER SLIME! This is going to be a favorite!
Check out the tutorial at

www.the36thavenue.com

Pumpkin Pie Play Doh: wviFs.piotrinoMutreoPrreeinsgtterer.ceaosttmDb/IYoraerFitddAtesgaLaLsirt2l/0

Smells just like fall! It’s squishy and fun and will make you want to
start baking your own pumpkin pie! Check out a video tutorial at

www.KidsActivitesBlog.com

w w di y

17 9

Rett
GIRL

FALL
R e c ip e s

CHOOSE TO BE HAPPY, IT’S GOOD FOR YOUR HEALTH
PHOTO CREDIT: EVELYN LE

10 FALL 2017

Robin Gentry Mcgee’s Savory Pumpkin, Turmeric Muffins Made with Nourish
functional formularies®

let food be thy medicine

PNuomuprkisihn,MTuufrfminesricIC21N1o1-1G1c2/11/TR1To12//2BED/TSn•l22•DI3BupgT•TbIR•btHaSccoSaEECCgaeceeufCkNCobrkoakggSsapougiTTmmlroiitaggpalamnrnSIbeeeunlgssolmobtogOilnmngoeotor1iiuNntdod(visnn5nlnpSeevsfeNnldgedodmeooonoibrotwairdrubgafezaocelcxfatrohtlalolrlotrfgoiwttoscltocuorrslleueahviormee4h.yrrnrpennesa0ceisguphs0biuomcrtjai°enpfakeuntnFatsidos.ug.to.pniiitreuinelmpPnpSmnsnuealrepgetnrnaetkrstiscpiiticeaanneelirsgdxfpeircmaddeieoypednpioem.itsuruectfnecedbftnonoaistcenkneod'iirn.tnpnugactunaosc.nmoeuoeipBtslpsah,akeopierupenturtfbmooocpcrwlku1leip22.ran-0en,lcc-S.iiu2ptNenp3iCoebroyurmmorCsuiilai)fnrnsfuot5hliteonemBasafinpklndeaoournrutres;

FALL 2017 11

F o o d N e t w o r k S ta r

Meet #hangryhousewife Annie Smith

Professional Chef and Rett mom to Mikyla

Table to I am so excited and honored to be joining the GP2C Team as contributing Chef
Blender Meals! to the Rett Girl Magazine! Since I was a child, food has been a passion of mine,
and I love cooking easy and healthy meals for my family. When my daughter
Make dinner time much easier Mikyla was diagnosed with Rett Syndrome, I thought often about how I could
for your busy family this fall positively impact her life with the food we all eat as a family. And with that,
and just add a little extra fat www.hangryhousewife.com was born! I hope you will find inspiration and joy
and some liquid (almond milk, in these recipes and see them as a way to get the whole family involved. I
coconut milk, etc.) to the reci- know when we cook as a family, we laugh, get messy and just have fun, often
pes on the following pages forgetting about everything else going on in our life and taking time to enjoy
(and any meal you prepare for the moment. I hope you do as well! Fall is right around the corner and the
your family) and blend away recipes I’ve pulled together are simple, and hearty as the weather starts to
in a high quality blender. Your cool. I think we all love a warm meal to keep us going as chilly weather starts
Rett Girl will love the variety to arrive. So, give them a try and enjoy. Don’t forget, blending for your Rett
and the fact that she’s eating girl is as easy as finding a quality blender! Got questions or need help? Feel
the same as everyone else, free to reach out via my email at [email protected].
and you’ll love only preparing Happy eating!
one meal at dinner!

blendtoedledaineRt,aetbvtiGosuiitrtl.bthhlooegwsRpteoottt.cGsotimarlrtBalog at Mikyla’s Basic Blend

PHOTO CREDIT: EVELYN LE • 2 cups cut up vegetables with skin preferable (butternut squash excluded)
*Group similar colors together (Ex. yams, butternut squash, carrots | pars
12 FALL 2017 nips, cauliflower, potato) I prefer to use skins if possible for added fiber
(butternut squash exempt)

• 1 cored and sliced apple or pear • ¼ cup maple syrup or agave

• 6 oz ground chicken or beef • 1 inch knob fresh ginger (no need
• 1 cup brown rice or quinoa to peel since we are straining after
• 2 cups coconut or almond milk blending)
• 4 tablespoons olive oil
• ¼ cup nuts • ¼ -½ teaspoons cinnamon

• ½ teaspoon salt optional-
Mikyla has low sodium levels

Add all ingredients in slow cooker or stock pot. Bring to boil if using stove top
method and reduce to a simmer about 20 minutes until thoroughly cooked.
Add water or chicken stock and blend to a desired consistency in blender.
Strain through sieve

Recipes

Easy back to school dinners

Perfect recipes for fall that everyone will love

Annie’s fam ous H a n ger Ste aks w ith G org onzola Pepper Jelly

Ingredients

ServingS PREP TIME TOTAL TIME • 2 (7 oz each) hanger steaks 1 ½
teaspoons garlic powder
4 25 30
• 1 ½ teaspoons onion powder
PEOPLE MIN MIN • 1 ½ teaspoons kosher salt
• ½ teaspoon freshly ground

pepper
• 1 Tbsp (10 g) yeast
• 1 tablespoon grapeseed oil
• 3 shallots peeled and ¼ in diced
• 1 red bell pepper ¼ in diced
• 3 cloves garlic minced ½ cup

beef or chicken stock ½ cup
brandy
• 3 tablespoons fresh thyme leaves
• 1 teaspoon finely minced fresh
rosemary leaves
• ¾ cup gorgonzola cheese

DIRECTIONS

Pat steaks dry with paper towel and season with garlic, onion, salt, and pepper. Heat a cast-iron skillet or heavy sauté pan over
medium-high heat until it's almost smoking. Add oil to coat the bottom of the pan. Add the steaks. Cook until deep brown on
one side, about 5 minutes, then flip and cook for 4 more minutes for medium-rare. Transfer the steaks to a cutting board and
let them rest while you make the sauce. Heat 1 tablespoon grapeseed oil in skillet used for cooking steak over medium heat.
Add shallots and red bell pepper, cook until shallots are soft about 8 minutes. Add garlic and cook for 30 seconds. Add beef
stock, brandy, thyme, and rosemary. Increase heat to medium/high and simmer until sauce has reduced to about one third,
about 5 minutes. Stir in hot pepper jelly. Slice the steaks against the grain into 1 inch slices and pour sauce over steak. Sprin-
kle with ¾ cup gorgonzola cheese.

*Feel free to use other proteins in place of the Hanger steak. Pork tenderloin, beef tenderloin, Rib Eye, NY strip steak.

Cooking time will vary accordingly.

FALL 2017 13

When looking for recipes for easy dinners during the school year, think about meals with convenient
ingredients, recipes that can be doubled and ones that freeze easily!

Cheddar BBQ Meatloaf Muffins – from foodnetwork.com

ServingS PREP TIME TOTAL TIME Ingredients

6 15 60 • 2/3 cup milk
• 1/2 cup plain dry breadcrumbs
PEOPLE MIN MIN
2 pounds meatloaf mix (ground
beef, pork and veal)
• 1 1/4 cups shredded Cheddar
(about 5 ounces)
• 1/2 cup barbecue sauce
• 1 teaspoon kosher salt
• 1/2 teaspoon ground black
pepper
• 4 small green onions, finely
chopped (about 1/3 cup)
• 2 cloves garlic, minced
• 1 large egg

DIRECTIONS

Preheat the oven to 375 degrees F. Pour the milk over the breadcrumbs in a large bowl and stir to combine. Add the meatloaf
mix, 1 cup of the cheese, 1/4 cup of the barbecue sauce, the salt, pepper, green onions, garlic and egg and mix with your hands
until just combined.
Divide and shape the mixture into 6 balls and arrange the balls in a 6-cup nonstick muffin pan. Place the muffin pan on a
rimmed baking sheet and brush the remaining 1/4 cup barbecue sauce on top of the meat.
Bake for 40 minutes, rotating the pan halfway through cooking. Sprinkle with the remaining 1/4 cup cheese. Continue to bake
until the meatloaf muffins are cooked through to an internal temperature of 165 degrees F, about 5 minutes more; the interior
muffins may take a little longer to cook. Cool 5 minutes in the pan.

14 FALL 2017

This is a great dish that the kids will LOVE! And you’ll love that there are minimal ingredients and you
can pack and easily heat up the leftovers for tomorrows lunch!

Mexican Frit tata – from Foodnetwork.com

ServingS PREP TIME TOTAL TIME Ingredients

4 5 25 • 1/2 tablespoon olive oil
• 2 to 3 green onions/scallions,
PEOPLE MIN MIN
sliced (white and pale green
parts only)
• 3 large eggs
• 1 tablespoon water
• 1 tablespoon chopped fresh
cilantro leaves
• Salt and freshly ground black
pepper
• 1/4 cup Mexican crema or sour
cream
• 1/4 cup shredded Oaxaca or
mozzarella cheese

DIRECTIONS Museum

Preheat the oven to 425 degrees F.

In an 8-inch, nonstick, oven-proof saute pan, heat the oil over medium heat. Add the scallions green onions and cook until

soft, about 3 minutes. Meanwhile in a medium bowl, beat the eggs with 1 tablespoon of water. Add cilantro and season with

salt and pepper. Add egg mixture to pan and cookAdd the eggs and cilantro to the pan and season with salt and pepper.

Cook for about 8 minutes lifting the edges with a spatula, to allow any uncooked egg to flow to the bottom. Pour the

Mexican crema over the top and sprinkle with the cheese. Transfer the pan to the oven and bake until puffed and golden,

about 8 to 10 minutes. Serve warm or at room temperature.

Have a great recipe?
Email [email protected]
and it could be featured
in our next magazine!

FALL 2017 15

Rett
GIRL

FALL
Pro ducts

BE YOURSELF, EVERYONE ELSE IS TAKEN
OSCAR WILDE

16 FALL 2017

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 all of these products on our Gumdrop iPad Case
This case is drop proof, throw
website with links to buy! proof, drool proof, tug of war
proof, serious protection
1FlexiMug with this great case! And it
comes in some cute colors!
THIS is a game changer! Hands FREE
drinking mug! The Purple Seat Cushion
Increase air flow and give your Rett Girl a soft place to sit
32MightyTykes with this great 2 inch seat cushion! Plus, it’s PURPLE, so
there’s that…..
increase her strength with these cute and super
low -profile wrist and ankle weights designed Flower Floor Pillow
These are the most ADORABLE Flower Floor
45for babies, toddlers and kids! Pillows ever!

FALL 2017 17

ST Y L I N GFunctional Styles for Feejays
Check this out, sweat pants with FEET!
your rett girl this AND hoodies with MITTENS!

F A L LFALL season! Lock Laces
Imagine getting your Rett Girls
Vivo Fit Jr. socks, AFO's and shoes on and
Want to track your Rett Girls steps - independent OR skipping a step? No shoelaces to
tie! Check out these great lock
6assisted? How about keeping track of her activity laces! Tons of great colors too!

level and her sleep patterns? This is a great device to
help log all that information and have some FUN with

978meetinggoals!Plus,areyoukiddingme? SoCUTE!
ArmBraces 10
Armbraces.com is a great place to get
CUSTOM arm braces for your daughter but
it does not end there! They also sell
ponchos, mittens, bibs, and more!

Plae Shoes
Set her off to school in STYLE! These adorable
shoes are durable, washable, customizable AND
with their extra long Velcro tabs they can even be
worn with some foot orthotics!

18 FALL 2017

FREE SHIPPING
on all US orders over $30

www.socklingssocks.com FALL 2017 19

Rett
GIRL

FALL
Educatio n

THE BEAUTIFUL THING ABOUT LEARNING IS THAT NO ONE CAN TAKE IT AWAY FROM YOU.
BB KING

20 FALL 2017

Ways to engage with books

Fall Reading

Head back to school with some great reads

Tumblebooks! BookShare! Accessible
Book Collection!
TumblePremium is your answer to Bookshare is a complete accessible
building reading, math and literacy online library for people with print The Accessible Book Collection is a
skills. Our collection has over 1100 disabilities. You can read, listen and
titles! Content is most appropriate learn with ebooks in audio, Braille, nipnortinmer-paersroyt/filmtowissirocenoardpisionrtgaotiploernvo.evlidedTighhiitgeaihr--l
for those in grades K-6. It includes large font and more in more than
animated talking picture books, half a million titles! You can search text to qualified persons with
chapter books, videos, non-fiction for a specific book or you can
titles, playlists, books in languages explore new ones. The best part is disabilities. Government and
other than English such as French that your Rett Girl may qualify to
and Spanish, graphic novels and access BookShare for FREE! All she non-profit schools and others can
math stories. Your subscription needs to qualify is a therapist to
also gives access to a rich collec- confirm that Rett Syndrome affects subscribe to the vCeorlylecatfiofonrdaabnlde-
tion of educational resources such her ability to read. Subscriptions are Accessible Book
as lesson plans, quizzes, education- reasonable as well, just $25 initial
al games and puzzles related to fee and $50 annually. Check it out have a large selection of e-books for
both math and language skills. The
price for Tumblebooks is pretty at www.bookshare.org all of their eligible students. Just
steep but the good news is your
local public library or your school like Bookshare you can qualify to
may have a subscription that you
can take advantage of. Ask your access The Accessible Book
library or school if it’s available, if
not, then maybe they would be Collection free of charge with a
willing to purchase it so the entire
school could benefit. therapist’s note. Subscriptions run

www.tumblebooklibrary.com just $49.95 per year! Check it out at

www.accessiblebookcollection.org

foranaCdhgSnaeraecuerskatrhataoomultribsiteornwSaObritntyryheeeosMptformouoafnurwedsesatiSscrriadotdcnoiwrkarseliycnatbn.occyirntoogfarmosnbr!dmooekrs amaawbEzYilntienhcogtouyoupocrtruaaaorgnvkieRedeeetvrtrehetneaoGdftgiiirnemotlg!veeaAertvofu1e8rnsde0ieitwb,0tdhlr0oeeiaw0n.clnyamooumaoudnnitodaishbr!roeaeonank’tds!

FALL 2017 21

Fun & Interactive Learning

Fall Educational Apps

Who Knew Learning could be so much fun?!

Make These BrainPop ABC Mouse
Apps Even
More Fun and BrainPop is a trusted learning resource, ABCmouse.com is a global education
Exciting! supporting core and supplemental initiative of Age of Learning, Inc. Their
subjects and reaching millions of learners goal is to help children build a strong
With just an HDTV, and HDMI cable worldwide. They cover universal topics foundation for future academic success
and an internet connection (which with engaging learning games, fun by providing a comprehensive and engag-
most of us already have), you can animated movies and activities designed ing online curriculum to greatly assist
UP the fun of these educational with relevance, depth and humor to early learners to succeed in Pre-K, Kinder-
apps with Apple TV. Using AirPlay, encourage kids on their unique learning garten and early elementary school
you can play these apps from your path. Brain Pop is suited for upper programs.
iOS device wirelessly right onto elementary and middle school students
your TV. The results are amazing and Brain Pop Jr. is for grades K-12. Check ABCmouse.com is subscription-based
including a larger screen, better out subscriptions at
sound and overall more engage- and offers a full curriculum that shows
ment for everyone! You can buy www.brainpop.com how young children can truly enjoy
Apple TV here: https://www.ap- reading, mathematics, music and art
ple.com/shop/buy-tv/apple-tv News-O-Matic through the computer, setting the stage
for a lifetime love of learning and creativ-
22 FALL 2017 Built by dedicated journalists, educators, ity. Check out subscriptions at
and entrepreneurs, News-O-Matic is a daily
news applications for young readers. abcmouse.com.
News-O-Matic was incorporated in 2012
and their team shares the goal of informing ChecaksnpodeuctsiaumlbonsreecerdaibspepastpopatstheaSilremrftarsre!teApps
children about current news and world
events and inspiring them to read on a daily
basis. They devote a great deal of time and
energy to ensure that their final products
seamlessly combine literacy, fun, reading
opportunities, and gamification to produc-e
an engaging and interactive learning experi-
ence. Seriously great resource! Check out

subscriptions at newsomatic.org

Dialogic Reading and Modeling

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

Modeling of Language on a Device:
You were thrilled when you got your daughter’s device but now that it’s here you are totally
overwhelmed. Maybe, you got lucky and someone programmed it for you …but you still are totally
overwhelmed! Raise your hand if this is you! I see all those hands raised from where I am sitting so it’s
time to create the “I Am Overwhelmed By This Device” Club: IAOBTD for short.

Okay, now that you know you are not alone, (I mean we do have a club name and everything), it’s time
to figure out what to do.

The research supports there are three avenues for learning language for kiddos. They include everyday
activities, play and interaction and storybook reading. We take each of these avenues pretty much for
granted when we have a speaking child. We talk to a baby non-stop and don’t even worry about wheth-
er they understand it all or say anything back to us, but put a device in front of us and we panic. Take a
deep breath while we look at the first avenue and give some easy examples of what to say and do.

General Ground Rules Now you just talk with
1. You are not allowed to criticize yourself and compare yourself to others that post on Facebook. the symbols and you
don’t have to have a
They are great and I am sure not sharing all the stuff that didn’t go so well. symbol for every word
2. You may not use the device to test your kiddo. Do not ask her to “find the…”, “get the …” or answer a you say.

direct question like “What did you do today?”
3. You may use the device to say anything you want and pause to wait for your kiddo to respond. If they

don’t – just keep using it and talking along the way. Remember we talk to a neuro-typical baby for
one year before they say anything back to us.

Everyday Experiences
Eating is something that happens many times a day so it’s an activity that gives you and your kiddo
plenty of opportunity to practice. Now, we don’t only talk about food when we eat, even if you are the
best cook in the world. So, let’s get creative. I want to talk about what we are snacking on but I also want
to talk about the trip to the playground we will do after snack. See how I am choosing the topic I want
to talk about so I can model how I would talk about the eating and the playing? We typically do not let
babies pick a topic as they do not talk! Instead, we just start chatting and they join in and copy us! Below
you will see a Snack and Playground Context Grid from SonoFlex in Communicator software which
comes standard with every Tobii iSeries device.

FALL 2017 23

Continued

Mini conversation

am

must be too
some
do is

Make sure whatever she says you incorporate into your trip to the
playground. You can print any of these grids out onto paper and
take them with you to the park so you can model as you play.
Remember though, just a little modeling and a lot of play!

You have just had a mini conversation using your kiddos device So now for our last General Rule:
and given her a great model she can imitate. Between each phrase 4. Remember, make it fun and have a great time. Talking to and
(pat yourself on the back) and pause. You might get something
back. If they say something, just go with it! No matter what it is. with your kiddo should be fun and if you’re not having fun take
They say “not”. You say, “Oh, you do not like it (symbols)” a break and come back later. Remember, it’s hard for your
kiddo too, so sometimes they are just having a Rett moment
It may seem like a lot of symbols, but if you can’t have a conversa- and need a break. The goal here is to make communicating with
tion with it, neither can they. The advantage of eye-gaze is it their eye gaze device fun and not a chore. Exposing and
makes it possible to access this much language. If you are trying to immersing them in all the ways in which they can communicate
just watch their eyes on a paper grid, then the buttons need to be and then modeling how to use that language in appropriate
larger so you can read where they are looking. Remember that we contexts and settings will open their vocabulary and use of
don’t limit the words we say to speaking kiddos based on what language more and more every single day.
they say to us. They “grow into” our language from repeated
modeling and engagement with us. As always, if you need help, let us know at www.rett-u.org.
Consider taking an online course or speaking to one of our coach-
es – we are always happy to help however we can along this
journey of learning for your kiddo and yourself!

Ok, I want to let my kiddo know that we are going to the park after
snack. I open the Playground Context on the device and start
chatting.

Mini conversation

will to the To learn more or start an
snack online course today, go to

rettuniversity.org!

will

24 FALL 2017

Rett University

Published Articles Are Paving Change for our Girls

Rett University is so excited to share that Closing the Gap
Solutions published not one, but two articles about Rett Syndrome
in the June/July 2017 Online Edition. They were written by two of
our own Rett University Instructors! “Girls with Rett Syndrome
Connecting Through Communication” was written by Judy Lariv-
iere and focuses on how Eye Gaze Technology has been a
game-changer in the lives of those living with Rett Syndrome. She
not only discusses communication but also creative uses of
eye-gaze technology that allow the girls to connect with their
families, peers, and communities in innovative ways.

“Writing with Children with Rett Syndrome: Effective Foundations These two articles with the third publishing in the August/Septem-
for Ideation and Mechanics Part 1” was written by Susan Norwell ber 2017 edition are just the beginning. Norwell is thrilled to be
and focuses on the needed foundational skills that build a strong working with Dr. David Koppenhaver on a collaborative article on
platform for successful writing. Part 2 of this same article publish- Literacy Development for Those with Rett Syndrome. Families
es in the August/September 2017 Closing the Gap Solutions now can point to printed documentation of strategies and
edition. Together they combine to give direction to families and techniques that work with their kiddos and schools have a place to
teachers of how to build writing’s essential foundational skills learn about best practices for individuals with Rett Syndrome. So,
that are taken for granted in typically developing children and come armed to your IEP’s and school meeting with printed docu-
often ignored for kiddos with Rett Syndrome. Being a writer mentation to back up what you as parents have known all along:
means being fully communicative so these foundations are too your kiddos are smart, they need to be educated and it is all of our
important to ignore. responsibility to do so.

The significance of these articles that are solely dedicated to best Here is the link to the June/July Online Edition:
practice for individuals with Rett Syndrome cannot be under- http://online.fliphtml5.com/yciqt/kmwm/
scored. For too long, individuals with Rett have been relegated to
the “Severe/Profound” disability category with little chance or JUNE/JULY 2017
opportunity of becoming educated. As Susan Norwell shares in her
article they are:

… those kids that would be least likely to have a writing
goal on their I.E.P. Those kids, in the many countries
outside the U.S. that I have visited, that don’t go to
school to learn but instead to Day Care Centers to be
cared for. Cared for lovingly, but not educated and
certainly with no expectation for being fully communi-
cative and literate. Though to be honest, many “Life
Skills” special education classrooms I visit in the states
are called educational settings, but are not that dissimi-
lar to the day care centers I have seen around the world.

FALL 2017 25

Rett
GIRL

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a h and Wellness

YOU CAN’T CONTROL EVERYTHING IN YOUR LIFE BUT YOU
CAN CONTROL THE FOOD YOU PUT IN YOUR BODY

26 FALL 2017

The Importance of a Positive Learning Environment for Your Rett Girl
By: Dr. Rebecca Shultz, Pediatric Nurse Practitioner at Blue Bird Circle Rett Center, Texas Children’s Hospital

As a member of What does a positive learning environment mean and why is it important?
the Blue Bird Circle A positive learning environment is described as one that is caring, safe, supportive,
Clinic for Pediatric challenging and respectful. This environment is essential for all children, especially
Neurology at Texas those with Rett Syndrome.
Children’s Hospital, Although no one excels in a non-supportive, unfriendly, non-engaging environment, a
I work with Rett positive learning environment is particularly important for children with special
families every day. learning abilities. Such an environment is linked to enhanced development, increased
One thing I believe self-esteem and reduced behavioral problems in life.
that every parent of
a child with Rett What is the best structured setting for learning – special education classroom, full
Syndrome should inclusion, homebound, or home school?
know is the There is no single correct answer. The specific needs and abilities of your child, family
importance of a situation and availability of resources in your community are all factors that should be
positive learning considered when determining the best environment for your child with Rett
environment. syndrome to thrive and learn.
Learning is not limited to academic skills. Thriving and learning also includes gaining
new social, motor and communication skills as well. A positive learning environment
for a child with Rett should include strategies to promote communication using
alternative communication modalities, strategies to promote purposeful hand use
and, at minimum, maintain gross motor function such as sitting, standing, and walking.
Music therapy has been shown to be extremely beneficial for all children. All children
in elementary school participate in music. So should your child with Rett, albeit with
individualized modifications. Perhaps she can shake a maraca or other musical
instrument.
She should also be allowed to participate in fun social activities as much as
possible—school outings, games, parties, etc. This is not only fun, but also helps in
learning social skills.

If parents opt for a public or private school versus homebound or home schooling,
what steps should they take for best success?
Navigating the school system can be complex and difficult, particularly if your child is
just entering the school system. Talk to other families in your area who have children
with special needs. Find out the strategies they used to successfully navigate the
school system, and don’t be afraid to talk to your local school district about the
availability of the resources that your child needs.
Some things you can do as a parent if your Rett girl is going to school:
• Visit the school and the classroom
• Identify the current student to teacher ratio
• Meet with the teacher(s), adminstrators and others to develop relationships as well

as work together on the development of the individualized education plan (IEP).

FALL 2017 27

Continued

In addition, make sure you know the legal educational rights of children with disabilities. The Individuals with Disabilities Education Act of
2005 (IDEA) and the No Child Left Behind Act (NCLB) are two federal education laws that protect the rights of children with disabilities. More
information can be found at www.taalliance.org along with information about federally funded parent training and information centers.
These centers provide training and support to assist parents to participate more effectively with teachers in meeting their
child’s educational needs.
Remember, reach out for help. You are not alone in this journey and there are likely resources and others that can help along the way.

As a parent, what can I do to support a positive learning environment?
The involvement of parents is essential. You should be included as an integral member of the educational team. You know your child best
including their learning style and strengths which differ from one student to another.
Share your observations with the teachers. Does she learn best when music is incorporated into activities? With repetition or novelty? What
things or situations triggers stress? What are the signs she is stressed, anxious or needs a rest period? What techniques calm her so she can
resume participation in activities?
Ongoing, frequent, two-way communication with the school teacher, therapist, and nurse is essential. Many families find using a spiral
notebook to communicate each day’s activities works best.

How can the home environment contribute to a positive learning environment?
The best learning environments also include the home setting.
Engaging in communication, reading books and promoting purposeful hand use and physical activities that promote standing and/or
walking all contribute to a positive learning environment.
Challenge her with new activities. Give her the opportunity to participate in fun activities, just as you would a child without special abilities.
This might include Special Olympics or snow skiing (with adaptations) or observing football or baseball games, going to the movies or to
concerts, going to parties—any of the activities that you and your family enjoy doing together. Including her in family activities exposes her
to new experiences and people that can enrich her learning.
Socializing is just as important for girls with Rett as it is for other children. Through socialization we learn acceptable social behavior.
Imitation is the main factor in the process of socialization, particularly in children. Communication skills are partially acquired through
imitation. Acceptable behavior can be modeled through other children as can non-acceptable social behavior. Thus, a positive learning
environment that reinforces acceptable behavior in a caring, respectful manner is important. Socializing is fun, and learning is enhanced
when we are happy and having fun.
Furthermore, friendships and community networks are developed through socializing. This network of friends can offer support, help solve
problems, and share laughter all of which can improve the quality of life for girls with Rett syndrome and their family.

How do you know the goal of a positive educational environment was achieved?
First and foremost, if your girl is happy and you are happy, then she is in a positive environment.
A positive educational environment will look different for each girl because each is her own special person with special abilities. Each
educational plan and home environment will be a little different because it should be individualized to your child.
Learning is a life-long process for all of us; that includes your girl with Rett syndrome. Therefore, the educational plan will change over time
as your girl gains abilities.
Little steps count! Celebrate all the little steps along this journey! Expect barriers or changes from one school year to another that require you
to stop, develop a new plan, then forge ahead to reach your goal.
When has your girl or young lady achieved all she can achieve? Good question! I’m continually amazed every day about what I see and hear
that a girl with Rett Syndrome has accomplished. Remember, dream big and don’t give up! For many of our girls, there are no limits as long
as you can dream it and make happen.

28 FALL 2017

GET SPICY!

The Amazing Healing Properties of the Season's Common Spices

As we make our way into the fall, there is no season I more closely connect with than the
tastes, scents, and feel of the autumn air. So much of what we associate with autumn is
connected to the fragrances and flavors of the seasonal spices that fill our homes with warmth
and comfort. Even better, many of these spices hold unique properties which can support our
health during the coming winter months.

CINNAMON
Cinnamon, one of the most common spices used in the kitchen today, was at one time considered
to be more precious than gold. It is thought to warm and energize the body, making it the
perfect spice to include in the cold winter months. When used in cooking, it can aid in
digestion, improve loss of appetite, and ease stomach upset. Fragrant, spicy, and sweet, cinnamon
complements so many foods. It pairs lovely with winter stews and soups, brings sweetness to
cooked oats or brown rice, and adds depth of flavor to yogurt, fresh fruit, and baked goods.

GINGER
Ginger has one of the longest histories of use in herbal medicine. It is most widely known for
treating nausea and stomach distress. Like cinnamon, it has warming properties and is thought
to treat colds by raising body heat and eliminating toxins. The flavor is spicy and very strong
with a mild hint of sweetness. Tea made with ginger and lemon can be the perfect combination
to battle a cold or combat nausea.

CAYENNE PEPPER
Adding this fiery spice will surely create warmth in the body! In years past, individuals would
add cayenne pepper to their shoes to keep their feet warm during the winter season – due to
enhancing blood circulation. Along with other peppers, it is known to improve digestion and
increase metabolism. It can also be used to make balm and oils used topically for muscle pain
and soreness. A common treatment for sore throat is to prepare a scant amount of cayenne with
lemon juice and drink as a tea. Remember, a little of this spice goes a long way!

CLOVES
A lesser-used spice, cloves are far more versatile than their typical use. They hold many
properties similar to ginger, including helping with upset stomach, nausea, and digestion -
even used to freshen breath in historical times. Beyond cooking, clove oil is used as a remedy
for ear and tooth pain. Or, for an easy family craft, stick whole cloves into the outer peel
of an orange – a natural fragrance that also may deter flies and other insects!

TURMERIC
Though still not a well-known spice, turmeric has been used since ancient times for both its
flavor and medicinal properties. It is the spice used to flavor Indian cuisine. Now gaining
recognition through numerous medical studies, it is best known for being a powerful antioxidant
and anti-inflammatory agent. Turmeric can be found in most major grocery chains. Earthy and
peppery in taste, it can be added to rice and lentil dishes, sautéed with vegetables, or added
to smoothies. Heating turmeric and cooking with oil and black pepper can increase its absorption.

~ Katherine DiGeronimo, RD, LD, CLC
Registered Dietitian

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Rett
GIRL

FALL
GP2C

FALL HAPPENINGS

30 FALL 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

SCHEDULE OF
EVENTS:

2/22 - 1-ON-1 SESSIONS WITH TELL ME MORE ABOUT THE WEEKEND!
SUSAN NORWELL
This is our 7th year participating in this Disney event. We'd love for you to join us
2/23 - RETT U LIVE! WORKSHOP for this amazing weekend filled with opportunity to learn and connect with other
WITH SUSAN NORWELL Rett families. From volunteering side by side at our booth to just lounging by the
pool, there is something for everyone! We have discounts for hotel and park tickets
2/23 - 5K RUN to share with you, too. Visit www.gp2c.org/princess for more information.
2/24 - 10K RUN AND TEAM DINNER
2/25 - HALF MARATHON

REGISTRATION IS NOW OPEN!! GP2C.ORG/PRINCESS

POWER THE FLOWER AT ANY 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! Select from two tiers:

Tier 1: #PowerTheFlower with a Team GP2C race shirt, Team GP2C medal and some other items to
help spread awareness on race day.

Tier 2: take advantage of our incentive plan where you could earn a reim-
bursement of over $600 to cover your race entry fee, travel and hotel
expenses.

To learn more go to:
http://www.girlpower2cure.org/get-involved/campaigns/team-gp2c

FALL 2017 31

A New Phase of Rett Research

By Tim Freeman, RSRT Chief Development Officer

Girl Power 2 cure is proud of its long-standing
alliance with the Rett Syndrome Research Trust.
RSRT’s progress is more exciting than ever, and a
bold new strategic research plan is advancing us
to what we all want more than anything-a cure. In
the second half of 2016, RSRT’s chief executive
officer, with input from leading scientists dove
deep into RSRT research projects, evaluated the
Rett research field as a whole, and assessed key
data.

The result of this was a bold three-year, $33
million strategic research plan called Roadmap to a Cure that was publicly announced in March of
2017. Up to this point RSRT had necessarily focused on testing numerous approaches and finding
the ones that are most likely to make a significant difference to those afflicted.

Now, for the first time and thanks to remarkable research progress, RSRT has the data and
knowledge to be able to say—these are the approaches that are most likely to lead to a cure for Rett
Syndrome. At the core of Roadmap to a Cure are four approaches that represent the cutting edge of
medical science and attack the underlying cause of Rett. These four approaches are: gene therapy,
MECP2 reactivation, RNA editing, and protein replacement.

Gene therapy is farthest advanced and is the lead program of Roadmap to a Cure. In fact, in June of
this year, a biotech company called AveXis announced that it would take the next steps to advance
to the first-ever gene therapy clinical trial for Rett Syndrome.

Their decision to do this was made possible entirely based on data developed by RSRT’s Gene
Therapy Consortium. This is very exciting news for anyone who loves a child with Rett Syndrome.
For the first time, preparations are underway for a human clinical trial in Rett which aims to fix the
root cause of the disorder and potentially result in dramatic improvements. It's an example of the
impact that funds contributed to RSRT have. Without the work that RSRT has done in gene therapy,
AveXis would not be moving forward with a gene therapy trial for Rett.

32 FALL 2017

Continued

Roadmap to a Cure is a comprehensive
and integrated plan. The emphasis is on
curative approaches, but RSRT also
recognizes that to make these
approaches successful it’s critical to put
resources towards creating the
conditions in which regulatory agencies
like the FDA can approve clinical trials.

This includes developing outcome
measures and biomarkers that will shorten the timeline for the testing of potential cures and assure
the efficiency and integrity of clinical trials. All this illustrates that there is remarkable clarity and
focus in the direction of RSRT’s research.

Of course, nothing is set in stone and much work lies ahead with the science. Until we know with
certainty which approach will deliver a cure, we must aggressively pursue all four approaches and
push them forward to the clinic.

And as you can imagine, all of this costs a significant amount of money- RSRT needs to raise $33
million as quickly as possible to carry out Roadmap to a Cure. So there is much work to do on the
fundraising side too.

Throughout the three years of Roadmap to a Cure, RSRT will remain deeply committed to being a
lean and highly efficient organization. Since its founding, an average of 96% of funding has gone
directly to our research program.

As the largest supporter of Rett research in the world ($42 million awarded to research since
inception), RSRT is fiercely focused on what matters most: healing our children as quickly as
possible. We are tremendously grateful to Girl Power 2 Cure, which over the last nine years has
provided nearly $1.4 million in funding to RSRT.

This support has been very important to getting us to this stage of the research. We look forward to
a continued alliance with Girl Power 2 Cure and to pushing ahead together to make Rett history.

To learn more about
Roadmap to a Cure, go to:

www.ReverseRett.org/cure

FALL 2017 33

Check out our new Power Collection!

At the GP2C Shop, we’re always on the hunt for incredible designs that inspire us all! Welcome The Power Collection!
The collection is designed for anyone excited about sharing the power each of us has to overcome obstacles, challenges
and everyday struggles. Inspired by our girls, this collection is an honor to them and how they fight every day! Delicately

designed to pop and send a clear message of strength, courage, determination and perseverance our girls and women
demonstrate every single day!

Show your support for GP2C and inspire others with your very own Power Collection!

our Fall 2017 product

Chilly weather is right around the corner, cuddle up in these awesome throw blankets or scarves just in time for the cool
weather ahead or serve yourself up a great warm beverage in our GP2C mug available in two sizes!

Go to www.gp2c.org/shop and place an order today!

34 FALL 2017

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36 FALL 2017