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Published by Rett Girl, 2018-08-09 10:49:45

2018 RettGirl Fall Magazine

2018 RettGirl Fall Magazine

Fall
2018

Finding Her Style THE EVERYTHING RETT SITE

Back-to-School Shopping
with Jenny Tesler

STEM ACTIVITIES
for your Rett child and FREE

communication page sets

RETT U

Join Susan Norwell for Book Club!

GET INVOLVED

with GP2C this season with pumpkins,
running and Facebook

“RETT GIRL MAGAZINE FALL 2018” © COPYRIGHT 2018 | WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED


"Susan Norwell, words can't express the gratitude that
we, the Rett community, have for your endless

dedication and your ti reless work to push our chi ldren
to learn and communicate to thei r fu llest potential.
Thank you for dedicati ng yourself to our sweet kids!"

2 FALL 2018


Recently, I had a conversation with a newly diagnosed that cycle. Don't get me wrong, I have days where I am
family, and my momma-heart ached so much (as it does for down (that's normal); however, I allow myself to work
all families that receive their initial diagnosis of Rett through those feelings and wait for it to pass. I'm always
Syndrome). I still remember so vividly our D-day (diagnosis striving towards happiness. Girl Power 2 Cure has
day). The part of the conversation that really struck me was embraced happiness, and that has helped my family
the lack of support this sweet family received. We have throughout this journey.
been on this Rett Syndrome journey for almost ten years, HAVE FUN! - I know you are thinking, what in the world is
and the lack of knowledge in many clinics is disheartening. this mom thinking? When Brynn got her wheelchair, I was
They only give the doom and gloom of Rett Syndrome… devastated. But now, I realize this isn't a tragedy…it's
everything your child won’t or can’t do. What about what simply how she gets around. We love dancing even when
my child can and will do? If you are a newly diagnosed she is in her chair. Sometimes people stare, and sometimes
family, hear me out, and if you are well into this Rett people will join us. The happiness my child exudes is what
Syndrome journey, I hope you will share my thoughts. my momma-heart needs the most!
I know how overwhelmed you are and how eager you are to Kristin Hileman
learn about Rett (I was too). I want to share a few things I Family Support Team Leader
have learned over the years. Kristin@gp2c.org
Grieving - is completely normal. As a parent of a child with
Rett syndrome, you will grieve a lot. Take that time for you I love fall! I love the colors, the smells, the apples and
and take all the time you need. Then, when YOU are ready pumpkins, the cool crisp air, the sweaters and bonfires, but
to dive in, we are HERE. most of all, I love getting back into a routine. Don’t get me
Celebrate - please do not forget about positive wrong, the summer is full of fun, but the late nights and
experiences. I keep a journal of the positive things that lack of structure can catch up with us as the season winds
Brynn has done, and when we are having tough times, I down. With a new, more structured routine, organization is
read that journal. CELEBRATE the joy of your daily routine sure to follow! We get rid of the old and bring in more of
and know that those experiences will still be there during the new. For Annie and me, that means new books, new
the darkest of days. apps and a new home schooling curriculum. We weed out
Support - there is nothing stronger than your own village. all the things that we tried the previous year that didn’t
People with whom you are comfortable (relatives, work and bring in new ideas. Of course, we have lots of
longtime friends and new friends you will meet along the things that carry over that work for us year-after-year. We
way) will all embrace your family’s reality. These are the had this in mind when compiling this Back-to-School issue
people you trust and feel most comfortable with during of the Rett Girl magazine. We have packed it full of new
your best and worst times. I also want to encourage you to products, new ideas for learning with crafts and
accept help from others. Connect to service organizations experiments in our Activities section, new ideas for the
that support you and your family. Take people up on their classroom to take back to school in our Education section,
offers to lend a helping hand. Most importantly, raise your and new thoughts about nutrition with blended diets in our
hand and ask for help when you feel you need a break from Recipes section. Our hope, as always, is that you will find
it all. something new that sparks your interest and becomes one
Happiness - I know this may be hard in the moment, but of those tried and true things that carries over
choose happiness. Most days I wake up and choose to be year-after-year...something that will potentially make
happy. I try to focus on the positive. When I find myself living with Rett just a little easier. Happy fall my friends!
spiraling into the negative, I actively do something to break Bridget MacDonald
Rett Girl Coordinator
bridget@gp2c.org

FALL 2018 3


FALL

Magazine

“Autumn is the season to find contentment at home
by paying attention to what we already have.”

Six Fabulous Categories in this
issue of the RettGirl Magazine!

5 Fall Activities STEM learning made fun!
12 Seasonal Recipes Easy Slow Cooker recipes
18 Products Everything they need for
22 EDUCATION Back-to-School!
26 Health and Wellness Rett U Book Club with Susan Norwell
32 Girl Power 2 Cure Fire Safety!
Get inspired and get involved!

4 FALL 2018


Rett
GIRL

FALL
Activities

IT’S A NEW SEASON, A PERFECT OPPORTUNITY TO TRY SOMETHING NEW,
SOMETHING BOLD, SOMETHING BEAUTIFUL

FALL 2018 5


Try Something New!

DIY Lava Lamp

Learn while creating

Your Rett child is going to LOVE helping you make this Lava lamp! This is a great project that presents the
opportunity to make science FUN! You can use this craft as an experiment and learn something new as you
make something cool! Check out the next page for communication page sets that you can print or download
into Communicator 5 software!

Instructions:
Clean, 1-liter clear soda bottle
¾ cup of water
Vegetable oil
Fizzing tablets (such as Alka Seltzer)
Food coloring

ScietnhcaeefoBsvricodbideee.onctCocaamehinlee/dbcdbekilhinoniobfnsuosdttrr-maiunac-tltaaiioov-nabnsolo,tantmlep-!2/ 1 Pour water into the bottle

2 Use a measuring cup or funnel to slowly pour the vegetable
oil in the bottle until it’s almost full.You may have to wait a
few minutes for the oil and water to separate

3 Add 10 drops of food coloring to the bottle (of course let
your Rett child choose the color!)

4 Break a fizzing tablet in half and drop the half into the
bottle.Watch it sink to the bottom and let the magic begin!

5 To keep the effect going, just add another tablet piece

6 For a true lava lamp effect, shine a flashlight through the
bottom of the bottle

6 FALL 2018


Communicator Page Sets

Susa ’ Susan Norwell, M.A.
p!
This page set was designed to allow for two types of conversation. The first is to direct the
making of the lava lamp. Make sure to read the directions to your kiddo and then have them help
you follow them. Remember to model as you read the directions so they know how to use the

language that is there. Make sure to read the pages linked to this activity so that you understand

the science behind the lava lamp (I learned a lot reading it myself!). Then your kiddo can predict what will happen,

describe what is actually happening and explain why. Describing vocally such as heavy, light and up and down will

support this conversation. The only other thing is to have a bunch of “blobby” fun!!!

To access instructions and Communicator page sets for this activity, go to RettUniversity.org

Library>Resources> Free Resources

FALL 2018 7


“I love you!”
“Girl power!”

“Let’s go!”

Say it with your eyes using the Tobii Dynavox I-Series+

The Tobii Dynavox I-Series+, featuring the world’s #1 eye tracker, is specifically designed for individuals who rely on
augmentative and alternative communication to make their voices heard, like those with Rett Syndrome. Discover the

power of the I-Series+ and experience:

• A modern yet durable design • Text messaging to say HI to family and friends
• Integrated eye tracker for optimal results • Flexible pagesets for communication growth
• Booming speakers to be heard anywhere, anytime • Batteries that last and last
• Access to social media sites to stay connected

To learn more, visit tobiidynavox.com and contact your local Tobii Dynavox sales consultant. Funding options available.

Power to be You

8 FALL 2018


Get Creative

DIY Fun

Try something new

Apple-Cano

This is a classic baking soda and vinegar chemical reaction
but adds an apple for a fun (and seasonal) twist! You can
talk about the basic science of this experiment with the
younger ones or get a little more in-depth with your older
kids.There’s also more apple experiments to explore if you
want to stick with a theme!

Dissolving Candy

During this time of year, there seems to be an abundance
of candy! You can use that extra Halloween candy in a
great visual science experiment.Grab some candy corn,
ghost and pumpkin peeps and a few things from the
pantry to get started.This experiment is great for younger
kids to observe and older kiddos to make predictions and
test their theories! If your child enjoys this, there’s lots
more candy science to explore!

Pumpkin Oobleck

Use a real pumpkin to make Pumpkin Guts! An awesome
non-Newtonian fluid that makes for a great sensory experience!
Then learn and explore the properties of this substance that acts
like both a solid and a liquid! There’s many more pumpkin and
Thanksgiving-themed experiments to explore!

lepalrenaTstoheegveisstcitiienLn-dicteetplebtBhehiininnssdFtroturhcLetsiitoetnleesHxpaaennrddimse.cnotms,

FALL 2018 9


Life Adventures with Rett

This is Me – Finding Her Own Style

Jenny Tesler, Rett mom to Magnolia

When I was in school, I remember how excited I was to go

Jenny Tesler is a writer, blogger and active shopping for back-to-school clothes. I remember really coming
advocate for her daughter Magnolia, living into my own style when a new store called Units opened. My
with Rett Syndrome. Born and raised in San mom took my sister and I there, and I was mesmerized. I
remember the white walls and the white shelves stacked with
Antonio, TX, Jenny now lives in Los multifunctional, colorful clothes. There were t-shirts that could
Angeles, CA with her husband AJ and their be a fun shirt, or a really short, fun dress. There were belts that
doubled as skirts or tube tops. It really was an amazing store.
two children. You can find her writing That was the first year I really wanted to have style. At the time,
about her family’s life living with Rett
Syndrome at magnoliashope.com. Besides

her family, her favorite things in life are I was older than Maggie is now, but I was also a late bloomer in

going for hikes, eating tacos and yoga. You all things girly. But, I remember picking out a particular outfit at

can follow her on the store - it was a blue skirt, white belt and pink top, and
@jennytesler thinking this is me.
or

magnoliashope Times have changed, and kids are deciding their styles way

before I ever did. Just the other day, I saw a friend's Facebook

post. Her daughter is the same age as mine, and she was

humbly bragging about how much style her daughter had. "She

chose it all herself…” I was impressed and jealous at the same time. My jealousy was instantaneous, and to an

outsider, probably strange. For a special needs parent, it was just one of those moments... I felt my daughter was

being robbed of one more thing. I'm the one that buys her clothes, so none of her clothes have really been her

choice. She wears stylish, cute clothes, but for the most part, I buy them. She has never had the chance to go

back-to-school shopping to choose what she wants. Why haven’t I thought of taking her back-to-school

shopping and making an adventure out of it?

I don't want to rob her of anything else, so this year I'm
taking her shopping to choose her entire fall wardrobe. The
purge will be bittersweet, but her drawers and closet are
overflowing. We haven't had to get rid of much in the past
two years, because she hasn't outgrown the size 5 that she
has been wearing since she was five years old. The reality
is there is a big difference in opinion and taste between
five-year and seven-year-olds. At five, Maggie loved Frozen
and The Greatest Showman. Yes, both are musicals, but
definitely different styles. At five, she wanted to wear a

10 FALL 2018


strawberry printed swimsuit; now, she likes the vision board of what she likes and then try to focus
striped swimsuit with a NASA logo. At five she was my on a store that can deliver. Seven-year-olds do
little, little girl. At seven, she is my little, big girl, and change their minds though, so any preparation may
I want her to experience everything she can. be totally futile in the end. On top of everything, she
is having more seizures lately, so I need to be
Rett Syndrome takes away so much. She has been prepared for this possibility (and potentially
battling her weight for the past two years, so these scrapping the whole adventure as a result).
clothes are starting to remind us of those challenges
as well. So, for her sake and mine, we are buying new Planning this for Maggie, I have so many thoughts
clothes. I will not let Rett Syndrome take away her swirling around my head. Can I make it work? What if
style too. I've been dressing her all wrong? What if I've been
dressing her more like Sporty Spice, and she is really
This will be an adventure; busy, loud places tend to Posh or Scary Spice. What if she isn't a Spice girl at
disorganize Maggie, and I’m never sure how she’ll all? Maybe she wants to wear dresses every day. Last
respond. It could be fine, but she could melt down, week, she did tell me that her rock ‘n roll outfit for the
and I’ll be anxious about the latter, even if it’s the Taylor Swift concert represented her well. Maybe we
former. She doesn’t use a wheelchair, so her eye gaze will toss all of her sweet flower dresses, and instead
computer isn’t mounted, so I’ll be depending on buy a closet full of pleather pants? Whatever her
partner assisted eye gaze. This is her most reliable style may be, and no matter what happens, I’m going
form of communication anyway. She has a very clear to prepare for this outing as best as I can. I want to
“yes” and will turn her head (gleefully) to affirm a give Maggie this experience. And at the end of the
positive response. But, without any remaining day, whatever her style may be, I'll be happy for
functional hand use, I’ll be creating outfits, showing Maggie to present herself to the world (every day) in
them and waiting for a response. If she doesn’t like it, an outfit that says this is me.
I won’t know if it’s because of the shirt, the pants, the
whole thing, the hair accessories, or any other little
thing. Ultimately, there will have to be a lot of home
prep and research to help her narrow her style
choices before we go. I’m thinking we will make a

FALL 2018 11


Rett
GIRL

FALL
Recipes

COOKING WELL DOESN’T MEAN COOKING FANCY

12 FALL 2018


FALL 2018 13


A h e a lt h y a lt e r n at i v e

Blended Diet

Transitioning

This is the last part of a three-part series on Blended Diets. Please see our Holiday Here is an example of
2017 issue for the benefits of blended diets and our Spring/Summer 2018 issue for a basic recipe:
where to start with a blended diet.
1 1 cup dark chicken meat
This last part, Transitioning to a Blended Diet, is where you need to go 2 1 cup amaranth
slow. A few things will determine how slow your transition will be: 3 1 cup brown rice
• How long your Rett child has been on formula 4 2 cups sweet potatoes
• If he or she is still able to complete some oral feeds
• Their overall tolerance

If your Rett child has not had oral foods in a number of years, or you are not yet sure 5 1/2 cup walnut oil
if he/she has any intolerance to certain foods, you may want to start by introducing

one ingredient at a time (just as you did when they were a baby and first starting on 6 handful of fennel seeds

solids). You can either introduce foods on their own in-between feeds or blend them 7 4 cups water (to blend)
with his or her formula. As you add foods, combine them to give more of a complete

meal, decreasing the formula as you go. Check out FoodForTubies.com
for how to create your own
Some families start with baby foods. Stage 1 baby food can be given straight recipe as well as some sample
through the tube and can be an easy and much less intimidating start when moving recipes.

to a blended diet. Stage 2 and higher foods need to be blended and put through a

strainer to make sure they will pass through the tube. Many families will start this way and just replace one meal or feeding for a

certain amount of time, and then replace additional feedings as they gradually work their way up.

Other families jump directly into blending and will choose to blend whatever the entire family is eating at any given meal, or
create a "staple" meal that includes all of the nutrients needed, but customized by changing the fruit, veggie or protein to provide
variety.

There are many varying opinions of what constitutes a "balanced" diet, but a place to start is with the basic food groups and using
appropriate portion sizes for your Rett child’s age. Or, you can get a little more technical and start with the "macro nutrients" -
proteins, fat and carbohydrates (carbs) in foods.

Every person has different needs, but a starting point is to aim for 40% of total calories from carbs, 30% from protein and 30%
from fat. Carbs and protein have 4 calories per gram, and fats have 9 calories per gram. So, if you have a food that has 5 grams of
fat, then 45 calories of that food are from fat. You can do this simple equation for each macro nutrient in each blended food to
compute a total calorie count of what your Rett child is consuming.

14 FALL 2018


Tas t e s o f t h e S e as o n

Slow Cooker Meals

Perfect recipes everyone will love

Fall is the time for easy recipes that can be served on the fly. Comfort food that warms the heart, soul and
tummy! But the best part about these meals is that they can all be done in a slow cooker, which means you
get to toss in all the ingredients during the day and not have to worry about it until it's time to serve for

dinner!

SLOW COOKER CHICKEN NOODLE SOUP – FROM FOODNETWORK.COM

ServingS PREP TIME TOTAL TIME Ingredients
• 8 ounces carrots, sliced 1/4 inch
6-8 25 8 20
thick (about 3 large carrots)
PEOPLE MIN HOURS MIN • 6 ounces celery, sliced 1/4 inch

DIRECTIONS thick (about 5 large stalks)
Toss the carrots and celery together in the slow cooker. Add the onion, • 1/4 small onion, peeled and root

sprigs parsley, thyme, bay leaf and 1 teaspoon salt. end intact
• 2 large sprigs parsley, plus 1/4 cup
Rub the chicken thighs all over, including under the skin, with 1
teaspoon of salt, and put them on top of the vegetables. Add the chicken chopped leaves
broth. Cover, and cook on low for 8 hours. During the last 15 minutes of • 2 large sprigs thyme
cooking, remove the chicken and stir in the noodles. • 1 bay leaf
• Kosher salt
• 2 pounds bone-in, skin-on chicken

thighs (about 6 thighs)
• 8 cups low-sodium chicken broth
• 6 ounces wide egg noodles (about 4

cups)
• 1 to 2 tablespoons freshly squeezed

lemon juice
• Freshly ground black pepper

While the noodles cook, remove and discard the chicken skin and bones and shred the chicken (it will mostly fall apart
on its own). When the noodles are done, turn off the cooker, remove the parsley and thyme stems, and add the shred-
ded chicken and 1 tablespoon of lemon juice. Taste and add more lemon juice and salt as needed. Stir in a good
amount of pepper and the chopped parsley and serve hot.

You can make this gluten-free by substituting quinoa for the noodles! Or, make this a blended meal by simply blending a
serving of soup and adding a non-dairy liquid to thin it to the correct consistency.

FALL 2018 15


The ease of a slow cooker, coupled with tender beef, hearty flavors and delicious smells that will fill your
whole house! We couldn't recommend this recipe more!

SLOW COOKER BEEF AND BARLEY FROM FOODNETWORK.COM

ServingS PREP TIME TOTAL TIME Ingredients
• 1 1/4 pounds boneless beef
4 20 8 20
chuck (in one piece)
PEOPLE MIN HOURS MIN • 1 cup pearl barley
• 1/2 pound cremini mushrooms,

quartered
• 4 stalks celery, quartered
• 6 medium carrots, quartered
• 2 medium leeks, sliced (white

and light green parts only)
• 1 sprig thyme
• 4 cups low-sodium beef broth
• 1 tablespoon soy sauce
• Kosher salt and freshly ground

pepper

DIRECTIONS

1. Combine the beef, barley, mushrooms, celery, carrots, leeks, thyme, beef broth and soy sauce in a slow cooker.
2. Add 1 cup water, 1 teaspoon salt and 1/4 teaspoon pepper.
3. Cover and cook on low, undisturbed for 8 hours.
4. Uncover and skim off any excess fat.
5. Transfer the beef to a cutting board, cool slightly, and slice or shred by hand into bite-size pieces.
6. Thin the vegetable-barley mixture in the slow cooker with some water if desired.
7. Divide among shallow bowls and top with the beef.
8. Serve with horseradish if desired.

Make this gluten-free by substituting brown rice for the barley! Make this a blended meal by simply
blending a serving and adding a non-dairy liquid to thin it to the correct consistency.

16 FALL 2018


Chili is a staple on cool fall nights! You'll love this recipe, and the fact that it's beanless means it won’t upset
sensitive stomachs. Don't let your tubie miss out on all this delicious nutrition… see the bottom of each
recipe for modifications to make it a blended meal!

SLOW COOKER BEANLESS BEEF CHILI WITH SPICED SOUR CREAM
FROM FOODNETWORK.COM

ServingS PREP TIME TOTAL TIME Ingredients
• 2 tablespoons canola oil
4 20 4-6 • One 2 ½ pound beef chuck roast,

PEOPLE MIN HOURS cut into 1/2-inch cubes
• 2 medium chopped yellow onions
DIRECTIONS • 1 tablespoon chili powder
• ½ teaspoon red pepper flakes
1. Put a deep heavy-bottomed pot on medium-high heat and add the oil. Add the • ½ teaspoon cinnamon
beef, season with salt and pepper, and cook until it is well browned, about • 1 small chopped jalapeno pepper
10-15 minutes. • 1 tablespoon chopped garlic
• One 28-ounce can chopped
2. Remove the meat to a bowl with a slotted spoon and discard the fat from the
pan. Pour half the broth into the pan and scrape up any browned bits. Pour this tomatoes
into the slow cooker. Add the onions and put the meat on top. Add chili • 1 cup beef broth
seasoning, red pepper flakes, cinnamon, jalapeno, and garlic. • Kosher salt, to taste
• Black pepper, to taste
3. Add the tomatoes with their juice and the remaining broth. Cover and cook on
low for 4-6 hours. Taste and adjust seasoning to your preference. Serve SPICED SOUR CREAM
garnished with spiced sour cream. • 1/2 cup sour cream
• 1 teaspoon chili powder
• 1 teaspoon lime juice
• 1 teaspoon hot sauce
• 2 scallions
• 2 tablespoons chopped fresh
cilantro

Make this a blended meal by simply blending a serving and adding a
green vegetable (such as spinach) and a non-dairy liquid to thin to
the correct consistency. If your Rett child is sensitive to spicy
flavors, omit the red pepper flakes and jalapeño peppers.

FALL 2018 17


Rett
GIRL

FALL
Products

START EACH DAY WITH A GRATEFUL HEART

18 FALL 2018


B e s t Fa l l P r o d u c t s

Back to School

Start the school year off right!

RETT 1 Light-up Picture Clips
GIRL.ORG!
This is a perfect way to let your Rett child recall their
Search all of these products on our

website with links to buy!

Peanut Exercise Ball school memories! Just use the transparent clip to
hang pictures or other mementos and string it around
Because there’s always time for therapy right?their room. Each clip has an LED bulb that gives off a
nice warm glow.
But maybe with a peanut you can make it
Terrarium
2more fun! Ask your therapist about some
There is a beautiful dimming and color
home exercises you can do or even changing night light within this awesome
science experiment! Help your Rett child grow
incorporate some massage therapy utilizing this DIY plant ecosystem while learning about
botany and the life-cycle of plants.
the peanut!
Back Pillow
3Wire Photo Display
Let your Rett child kick-back and relax after
Back to school means more paperwork! school with this comfortable, cute and

Organize everything your Rett child needs for supportive back pillow!

-4the week and all your pin-up reminders… all

while looking super-cute with this wire photo FALL 2018 19

5display!


ST Y L I N G Converse shoes

Functional Styles for Because everyone needs a new pair of
your Rett Kiddo shoes for back to school! With a zillion
colors, a nice flat shoe bottom and a wide
F A L Lt h i s season! toe box, Converse are great for practicing
walking and standing with or without

6 AFOs.
Compression Socks
Mood Bracelet
Compression socks offer support and
Why not throw in a new piece of jewelry while out
7relieve aching and fatigue in legs and school shopping? This one is extra fun as it
changes colors with your Rett girls changing
feet, all while looking cute and sporty! mood!

-Pong Chair (Ikea)

8Mermaid Pillow Everyone loves Ikea! This chair is available in
both child and adult sizes, it’s comfy, sits low,
These pillows are fantastically has arm rests, is perfect for rocking and is
addictive! A fun, sensory experience tilted slightly back for the ultimate relaxing
is supported by pushing the sequins experience!

910back and forth or making designs.

20 FALL 2018


PRCMagAdNEW_p2_022218.indd 1 2/22/18 1:32 PM

Helping Others Recover the Power to Move

To learn more, go to www.neurologicalrecoverycenter.com

FALL 2018 21


Rett
GIRL

FALL
Education

THE MORE YOU READ THE MORE THINGS YOU WILL KNOW,
THE MORE THAT YOU LEARN THE MORE PLACES YOU'LL GO.

-DR. SUESS-

22 FALL 2018


Rett-U Book Club

Susan Norwell, MA, Co-Founder, Instructor at Rett-U

At Rett-U, we are

always trying to and literate given robust communication
opportunities, consistent proven strategies for
find ways to help literacy instruction and learning schedules that
build in multiple opportunities for authentic
families and instruction with less emphasis on testing.

professionals further the learning opportuni- As we reflect on keeping “what is most import-
ant,” we continually come back to the essential
ties of individuals with Rett Syndrome. As a nature of literacy instruction and its rock-solid
link to ongoing communication development.
bonus, we are finding that our strategies and This last spring, as we were once again brain-
storming tangible ways to support stressed out
methodologies are effective for a wide variety parents who already are doing way more than is
humanly possible and over-worked teachers
of complex kiddos, and Rett-U is helping to lead whose caseloads are large with increasing
paperwork demands, the Rett-U Book Club was
that charge. In our work in schools across the born.

world, we have seen that the improvement of

education for all complex kiddos will only

solidify the improvement of the education of

individuals with Rett Syndrome.

We are committed to all individuals, regardless
of complexity, becoming as communicative and
literate as they can. Not as communicative and
literate as parents and professionals can
currently figure out, but fully communicative

FALL 2018 23


In the book, In Defense of Read-Aloud: Sustain-
ing Best Practice, Steven L. Layne, clearly
defends the importance of reading aloud to chil-
dren of all ages. This important practice has been
decreasing over-time as technology has bumped
its way into our lives. Having a book read to you
via computer or on an iPad is not the same as it
being read by a more skilled reader who chal-
lenges thinking by modeling their own thinking
out loud, and who points out aspects of print,
author voice and vocabulary to name just a few.
This is not a fringe activity reserved for those
spare minutes in the classroom or a fast book
before your kiddo drifts off to sleep. This is
essential, foundational and should be the
cornerstone of any good literacy program from
K-12. And yes, I said through high school!
Research is supporting teachers in continuing
read-alouds past the time kiddos begin to read
on their own, which is typically the time we send
them off to read on their own versus curling up
with us to read together.

Now in Rett Syndrome, we add the complexities
of reading to an individual who uses AAC and
cannot interact with books physically like their
able-bodied peers. It is much more challenging
with much less of a road-map for success. And to
boot, it is even more essential as the modeling
of language on a device, related to book, is a
solid strategy for developing more and varied
language.

The Rett-U Book club is designed to bring a vari-
ety of “best reads” to families and educators
and therapists in schools, while providing an
actual visual model of how to leverage language

24 FALL 2018


character, and grab those “time” words to talk
about the beginning, middle or the end. The
book is read, and the language is modeled on a
device, but do not hold yourself to just that
modeling. It is a snippet of what is possible, and
your student or kiddo will spark new thoughts
and ideas when they interject their own.
Remember this is not about right or wrong but
about learning to love books and to increase the
ways they can be talked about!
We love recording and putting these books
together for all of you to enjoy. As always, we
love your ongoing feedback as we strive to sup-
port EVERYONE on the great, literacy adventure.
Join us, read together, and let’s continue to push
for more- together!

on an individual’s device. Most parents are not
teachers and so are not grounded in the basics
of literacy learning. Unfortunately, teacher
training does not devote sufficient time to Spe-
cial Education teachers to learn literacy skills
for complex students, nor how to embed AAC
within the classroom (to encourage communi-
cation across both social and educational
arenas).
So, pull up one of our books on YouTube or The
Rett-U Blog and watch it with your child. Pause
during the reading to model language and
engage your kiddo or student in the process of
reading. Make comments, describe the action,
give a prediction, use words to describe the

FALL 2018 25


CHARLOTTE’S JOURNEY

Jacqui Hill and Jane Welch

“Beginning at age 3, Charlotte Troy, now 12,
and her teachers began a journey of helping
her communicate with her world. These
incredibly dedicated teachers, along with
other amazing staff such as OTs, PTs and
SLPs, have assisted Charlotte on a quest that
has given her a different world and future than
anyone ever believed.

Jacqui Hill began teaching Charlotte at the age of 3, in To broaden her ability to communicate beyond simple
2009, up until the end of the school year in 2015 wants/needs, she was introduced to a PODD system of
at the Pilgrim Area Collaborative: communication. Around this time, Charlotte's home
provider taught her to sign “yes” by tapping her head.
When I met Charlotte, she was just three years old. She Charlotte's yes sign helped those around her better
was unable to walk and did not communicate using understand at least some of her needs and wants,
conventional means. She communicated primarily however, her vocabulary remained limited and her eyes
through her big brown eyes. Her eyes displayed intense and behavior continued to express her frustration. Enter
emotions ranging from joy to extreme frustration. As a assistive technology. Charlotte began to use the GoTalk
team, we persisted in our goal to get Charlotte to walk, Now iPad application to communicate basic needs and
and finally we were successful! With her learning to wants. Commenting and spontaneous communication
walk, Charlotte could now use physical proximity to beyond needs and wants was restricted to
communicate her needs and wants. Her eyes continued preprogrammed pictures, and her vocabulary remained
to communicate her emotions. Charlotte was introduced limited and still adult controlled. As her team, we all
to a modified picture exchange system using strongly believed that her receptive vocabulary and
photographs of actual objects and places. She could knowledge base far exceeded the limited vocabulary we
select pictures to demonstrate her needs and wants but were providing her. A transition to ProloQuo2Go
had an extremely limited, adult controlled vocabulary. followed. P2G allowed Charlotte to navigate

26 FALL 2018


significantly larger vocabulary. However, the set-up of expands learning opportunities. She is very engaged
the small buttons on a small screen proved to be when the thought process is made public combining
motor-challenging. She was most successful with P2G books, video clips, photographs, hands-on materials
when she could guide an adult's hand to a selection and of course, with her Tobii. We also have the Tobii on
which still meant a dependence on adults. Enter the the class smart board so her communication system is
Tobii device. The Tobii allowed Charlotte to use her modeled and used to augment group lessons daily. It is
communicative eyes to deliver a host of messages. so much fun when we all get excited about a topic Char
Initially, it was a struggle to teach her how to use her has suggested using her Tobii. She has inspired units on
eyes versus her hand (which can be inaccurate) to Mexico, cowboys, blizzards, sugar cubes (one of my
activate buttons, but Charlotte learned, and her favorites!), New York City, American Idol, the royal
communicative functions expanded. She was soon wedding….to name only a few, and none of which was
commenting on activities and even sometimes using exactly on the curriculum map, LOL! I also think that
sarcasm! Those around her were now able to better learning to use her Tobii to express her ideas and seeing
understand things of interest to Charlotte. Charlotte had how communicating her ideas can make things happen
a means to independently communicate using a vast has made Charlotte feel so great about herself as she is
vocabulary. Charlotte is an amazing girl, and the Tobii joyfully engaged at school these days!
device has opened her world!

Jane Welch is Charlotte’s current teacher, and also of
the Pilgrim Area Collaborative:

Charlotte is teaching us about human interaction and
communication. We are privileged to be witnessing
Charlotte’s transformation from a girl who often
communicated through tantrums to a young lady with
big ideas, who is determined to make them known. She
demands that we have high expectations, and lets us
know that she is interested in content area topics first by
facial expressions and body language and increasingly
with the Tobii. “She motivates us to be spontaneously
creative in how we teach because learning to use the
Tobii has really allowed her to participate in very
authentic and important ways…not just to answer
questions in 8/10 opportunities!!!” Charlotte has
continued to use her Tobii to make comments, and we
have learned how to respond to her ideas which

FALL 2018 27


Rett
GIRL

a h aFnAdLWL ellness

LET THERE BE MORE JOY AND LAUGHTER IN YOUR LIVING

28 FALL 2018


Fire Safety Tips

Jon Prachthauser, Retired Deputy Chief - Morristown, New Jersey

Fire safety is something every family needs to take seriously, and families with special needs children are no exception.
There are three basic components for fire safety in the home; planning, teaching, and practice.
First and foremost, ensure that there are working smoke detectors throughout the home and in sleeping spaces. Test
them monthly and replace the batteries every six months. Also, have working carbon monoxide detectors on all levels
of your home. Additionally, make sure all bedroom doors are closed at night; this is the safest way to sleep.

Planning:

Have planned escape routes for your home, including two
ways out. If your child has physical limitations, have a plan of
escape that includes designated individuals to assist the
child. Having your child's bedroom on the first floor will
make it easier to move them if they have to be carried or
dragged. This website has a wonderful video that explains
how to get an non-ambulatory child out of the house in a
fire:

www.safekids.org/video/fire-safety-families-children-who-are-immobile.

FALL 2018 29


Teaching:

Teach your children how to feel the door and door knob to see if it's hot before
leaving their room during a fire. If the door is hot, they should stay in their room.
Also, explain to them that during a fire the smoke may become very thick making
it hard for them to see, and show them how to crawl to safety. Finally, teach their
siblings how to call for help (dial 911) once they are safely out of the home. Your
Rett child may not be capable of doing any of these tasks; however, it is important
that these things are explained to them to lessen anxiety should a fire occur.

Practice:

Just like in school, your family should practice the escape plan monthly - know who
is going to be responsible with assisting your child to escape the home, and who will
do that job if the primary person is not home. Know where your meeting place is once
they are out of the home, and finally, know how to call 911 for help once they are
safely out of the home.

It is recommended that you contact your local fire department to determine if they have a program or system
that identifies homes and families with special needs. In many fire departments, the dispatch system has
computer aided dispatch. Any address where there are special hazards or needs is immediately relayed to
responding units. This ensures the responding firefighters are aware of the special needs child in the home,
and what type of resources they may need to ensure a positive outcome for all involved.

For additional resources for fire safety tips and
planning for children with special needs, please
visit the following sites:

US Fire Administration: www.usfa.fema.gov/
prevention/outreach/disabilities.html
Indiana University: https://safetystore.iu.edu
Safe Kids: www.safekids.org/safetytips/
field_age/special-needs

30 FALL 2018


FALL 2018 31


Rett
GIRL

FALL
GP2C

WHAT DEFINES US IS HOW WELL WE RISE AFTER FALLING

32 FALL 2018


Team Gp2c

COME Join MANY OF OUR GP2C RETT families in florida February
22-25, 2019 at our 8th annual DISNEY princess race and rettaway

UPCOMING EVENTS:

• 1st Annual Rocking for Rett Huntsville Dinner
September 27th , 2018, 6:00 – 8:30
www.gp2c.org/rockinhuntsville
Hey GP2C supporters – come join us for dinner! Our
1st Annual Rockin’ for Rett – Huntsville will
be held September 27th at the Huntsville Botanical
Gardens. We will honor five local GP2C
families, and all proceeds go to supporting the
GP2C missions of family support, education and
cure-related research! Our key-note speaker will
be none other than the wonderful Susan
Norwell. Food, music, and some great auction items
will also highlight the evening!

• 5th Annual Pumpkins for Rett
October 17th – October 31st
Join us for our 5th Annual Pumpkins for Rett
Contest! Get your family and friends together and
decorate pumpkins to spread awareness for Rett
Syndrome! The contest will run from October 17th
through October 31st.

WANT TO HELP GIRL POWER 2 CURE FIGHT RETT SYNDROME?
HERE ARE 3 SIMPLE WAYS:

Have a birthday or special event coming up? Consider a Facebook Fundraising campaign on behalf of Girl
Power 2 Cure! Check out our quick video tutorial below - Easy as 1-2-3!

www.gp2c.org/fbfundraising

2019 DISNEY PRINCESS HALF MARATHON
RACE WEEKEND

Registration now open!
www.gp2c.org/princess

AMAZON SMILE:

www.gp2c.org/amazonsmile

FALL 2018 33


MoreThan Hope

By Kevin Pierce, GP2C Director of Development

Keep Them Ready!

I grew up in Florida but moved to Alabama in my early
20’s (I chased my wife up here… until she caught me ).
Part of my transition and “in-law-family indoctrination”
was learning how to become an Alabama football fan –
for the sake of domestic tranquility if nothing else, and
let’s just face it, we do win a lot. So, for over 35 years,
University of Alabama football is all we know in our
house. Alabama football is best described as a
“religious” affiliation, and our coaches (from Bear Bryant
to Nick Saban) are oft quoted. Here’s a couple of my
favorites:

“It’s not the will to win, but the will to prepare to win that makes the difference.” – Bear Bryant

“Success doesn’t come from pie-in-the-sky thinking. It’s the result of doing something each day that will add to your excellence.” –
Nick Saban

As we wrap up our back-to-school edition of Rett Girl Magazine, I cannot help but think of the significance of these leadership
philosophies on preparation, and how they are so appropriate to all of us as parents, siblings, grandparents, aunts, uncles,
teachers and caregivers of our beautiful Rett children.

We are all so encouraged by recent developments in the world of cure-related research and potential drug trials for Rett
Syndrome. We here at GP2C have spent significant time attempting to inform and motivate each of you as these endeavors
progress. We pray for and patiently await the day when this terrible condition can be eliminated from our lives, and most
importantly, the lives of our children. I believe it will come, and I hope
it will be soon. I want nothing more, when I go to bed at night and
awaken in the morning, than to hear the sweet voice of Blakely, and to
see all of the physical issues that come with Rett Syndrome
eliminated. “Pie-in-the-sky” thinking – maybe a little. But focusing on
that end is what keeps me, and no doubt you, motivated.

With that dream though comes the daily reality and responsibility to
keep our Rett children as strong and ready as we can. “Preparation” is
as important for us as Rett families as it is for a winning football team.
We here at GP2C try to never lose sight of this, and we want to
encourage each of you to keep up the fight. This is a big part of why
we exist, and why we work daily to support your families.

34 FALL 2018


We speak often about the cure and about the encouraging research, and “But what is not ok is to not be “prepared” when
if you are like me, every notification and announcement from the
research world is quickly opened and thoroughly reviewed – it’s simple the cure (or any other improvement) does
human nature to want to be rid of this thing called Rett Syndrome – and come. We must be diligent to prepare our kids
that’s ok. as best we can for that day – physically,
emotionally, and intellectually. We have an
obligation to make them ready, and to make
their every-day lives as meaningful as possible
while we patiently wait. In many ways, I believe
this is a core strength of GP2C, and one of the
reasons I have come to be affiliated with this
wonderful team of people.



My message to you as we prepare to head “back-to-school” is this; we
are here to help in whatever way we can. Be it our wonderful family
support team, or our dedic ated educators at Rett University, we can help
you with that “preparation” and the “day-by-day” that is so important.
Let’s all stay focused while we wait for that cure.

Finally, so as not to be branded as completely Alabama-biased, here’s
one last piece of leadership wisdom from Duke basketball coach Mike
Krzyzewski that I hope will inspire you:

“In all forms of leadership, whether you are a coach, a CEO, or a parent,
there are four words that when said can bring out the best in your team,
your employees, and your family… I BELIEVE IN YOU. Those four words can
mean the difference between a fear of failure and the courage to try.” –
Mike Krzyzewski

We do believe in each of you. Everyday we see moms, dads, families,
teachers, therapists, donors and entire support networks reaching out
and making tremendous personal sacrifices to keep our kids ready. Keep
up the good work, and good luck in the coming school year!

There’s still work to do… oh and I almost forgot… Roll Tide!

Kevin
GP2C Director of Development
Kevin@gp2c.org

FALL 2018 35


We’re searching for a cure and nothing less.

36 FALL 2018


Volunteer Spotlight!

Delta Kelly Community Kids

My children have been very blessed to grow up in a wonderful, caring, tightly-knit
community, and our local elementary school, Delta Kelly, is no exception. We’ve
spent a long time here, made some good friends and have had some excellent
teachers! Mr. Gehm is one of those teachers. He was our youngest daughter,
Grace’s fifth grade teacher this year and made quite a positive impact on her and
her class.

Mr. Gehm works hard for his students, coming to school early and meeting with
them, spending his lunch hour with them and waiting in the car loop talking to them
until every last one is picked up! He also spends his summers in Thailand, teaching
students half-way around the world who don’t have all the privileges and comforts
that we take for granted. Mr. Gehm is the type of man that leads by example.

In keeping with his example, he teaches his students the value of giving back. He has spearheaded Delta Kelly Community Kids (DKCK)
to give 5th graders an opportunity to work hard and give generously to others. Kids who sign up for DKCK come to school early to set up
a bagel sale, and their fellow students purchase a bagel for $1. The money raised goes towards outreach, helping others not only in this
community but around the world.

DKCK has been in existence for several years. This year, 70 students worked over 200 hours to sell 10,000 bagels! They also set up a
school-wide recycling bin competition. With the money raised, the students decided to adopt a sister school in Thailand to help those
students with basic supplies and necessities. And much to my surprise, Mr. Gehm approached me and asked to also support Girl Power 2
Cure in honor of Annie with the remaining funds! Of course, we graciously and humbly accepted.

I got a chance to sit down with some of the students in DKCK to see what they learned, and what they thought about their time in DKCK.
Their answers brought a smile to my face. Sienna said that “DKCK is a good way to give money to help people.” Ailey thought that “DKCK
is a great way to get together to do things for the community.”
Kalyn said “doing DKCK is a great way to get involved with the
community,” and Noel thought that “selling bagels is a good way
to earn money for any charity.”

I’m thrilled that so many students were able to not only pitch in
and help their community and beyond, but also that they learned
that it can be fun and rewarding as well.

By Bridget MacDonald
Rett Girl Coordinator for GP2C

FALL 2018 37


Drumroll please! Introducing our first community artist and collaborator, Taryn
Haas of Notabilitees! Taryn is a multi-talented Rett mom, photographer, chef,
gardener and entrepreneur. Visit her site at https://notabilitees.shop to peruse
some of her fantastic designs, and also our featured Taryn Haas collection in
the GP2C Store at www.gp2c.org/shop

Taryn Haas

And don’t miss other great GP2C products! We are adding cool new items (including some great
back-to-school offerings) every week at the GP2C Store! www.gp2c.org/shop

Are you an artist or designer with a passion for the GP2C mission (or
know someone who is)? We would love to add your designs to the

GP2C Store! Contact us at: Roger@gp2c.org

38 FALL 2018


at

Hit your target market and make an impact in the lives of
individuals with Rett! Help Sponsor our Rett Girl
Magazine by advertising with us! For more information
and to see our Ad Specs, contact Bridget at
bridget@gp2c.org

FALL 2018 39


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Wfteaehdmeuericdaliaueptsciosa,rttsse & Wfsaeumpoipflyofertr tWhee icnosmpmiruenity frWiensedefaaurnccduhrteo

Wawe acrreeanteess

RETT

UNIVERSITY

RETT GIRL SPRING/SUMMER MAGAZINE © COPYRIGHT 2018. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED

40 FALL 2018


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