Rett Girl Fall Guide 2015

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

Rett
GIRL

FALL

Guide

E D U C AT I O N O C T AWA R E N E S S R E C I P E S H A L L O W E E N

Welcome to the printed version of our online resource guide!
You will see many links as you read.

To access the digital version so you can follow the links
go to: www.rettgirl.org/guide

Welcome to our Fall 2015 issue of the Rett Girl Guide!

1.
School is now in full swing and I’m sure all of us are
getting used to new routines and falling back into a
more scheduled life. Back-to-school looks different
for all of us, some of us are doing school at home
either with a teacher that comes to us or via a computer,
some of us are heading to a typical brick and mortar
school and still others are off to an adult program.
Wherever “school” is for your Rett Girl we all have
one thing in common and that’s for our children to

2. continue to learn, grow, communicate and THRIVE!
We hope this issue will be a wonderful resource for
you and your team to find new products, new ideas
and a renewed spirit to continue to push forward!

Hello! My name is Kristin Hileman. I live in Ohio and am October is also Rett Syndrome Awareness Month! The
married to my better half Bill. We have two beautiful key to acceptance and understanding is awareness!
children who bless us daily. Brynn is 8 and suffers from We all know that our Rett children are amazing, they’re
Rett Syndrome and Will is 5 and has Cerebral Palsy. smart, they’re funny, they’re driven and motivated
and we want to make sure that EVERYONE knows that
I first connected with GP2C right after Brynn's diagnosis they are just like any other kiddo – they just require
in 2009. Since then, I have found myself connecting with a little more assistance. We hope that you’ll join us
many of you trying to embrace this Rett Syndrome and support Rett Syndrome Awareness Month by
journey. I currently serve as the Chairman of the Moth- educating your local communities. We invite you to
ers' Advisory Board for Girl Power 2 Cure. print our FREE Iron On for an easy way to get started!
This issue is packed with ideas for you to spread a
I love to learn from your families and read about the little awareness this month.
AMAZING journeys your girls are embarking on. I LOVE to
see our girls achieving the things in life that many others HAPPY READING!
didn’t think could be possible. I hope this guide inspires
you and your families to create many special moments Bridget MacDonald
with your girls.
Rett Girl Coordinator
I look forward to connecting with many more families
and support teams. Please know I applaud you and hope Girl Power 2 Cure OcGtoi!rnIrlCoaPLnnoICywoKnewrHthhOiEetnseRettEh.GsethPoimr2todCno&twghgrneoaltofpayhdioc.usr
to get to know each of you soon. Until then… POWER ON! [email protected]

Much Love, 1.2.BKrridisgteint & Annie with little sister Grace
Kristin Hileman & Brynn
Chairman, Mothers' Advisory Board
Girl Power 2 Cure
[email protected]

“RETT GIRL (FALL) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED 1

Rett
GIRL

FALL

Guide

"October gave a party; The leaves by hundreds came
The Chestnuts, Oaks, and Maples, And leaves of every
name. The Sunshine spread a carpet, And everything
was grand, Miss Weather led the dancing, Professor
Wind the band." - George Cooper, October's Party

W e ’ v e b r o k e n o u r FA L L R e t t

Girl Guide down into seven

fa b u l o u s cat e g o r i e s .

Click the category to navigate to each section

3 EDUCATION Read about different types of education

10 THE IEP We have made the dreaded IEP easier!

13 EYE GAZE Learn how to get started with eye-gaze

16 RECIPES Delicious and easy-to-make fall recipes

21 Products Best functional and stylish fall products

24 OCT Awareness Let everyone know...It’s Rett Syndrome Month!

33 HAlloween Costumes, recipes, crafts and more!!!

Rett
GIRL

EduFAcaLtLio n

IF A CHILD CAN’T LEARN THE WAY THAT WE TEACH, MAYBE WE
SHOULD TEACH THE WAY THAT THEY LEARN.

-IGNACIO ‘NACHO’ ESTRADA

“RETT GIRL (FALL) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED 3

HOW DOES YOUR CHILD LEARN?

BACKTO SCHOOL

Catriona Moore, a Rett Mom, shares her Perspective on her
daughter’s new school year

No matter how well I think the school holidays have gone – how much fun we may have
had, how many of the things we’re supposed to do on a daily basis have actually have
been accomplished, how many meltdowns have been avoided (for both her and me) – my
eight-year-old daughter Amy is always indecently gleeful at the prospect of returning to
school.

Her excellent school gives a purpose and shape to her days that we just can’t replicate
at home. Her smile at the arrival of the school bus – with the familiar, lovely driver who
always calls her ‘Princess,’ and knows exactly how to position the sun-shade for her and
which radio stations are most likely to play her favorite Madness songs – is unequivocal.

Amy after school! It makes me smile too, knowing that she is part of a unique community at school where
she is so well known and understood. Where they believe in her abilities, and can see
past all the frustrations of her body that just won’t work as her brain would so much like
it to. Where the expectation is that every child will participate and make progress. Amy
thrives in this environment: she is confident and outgoing, and it is wonderful to see.

Handing her over each day is hard, and necessary. I wish I had all the answers on this. My
job as Amy’s mother and advocate, as I see it, is to make sure that she has everything she needs to be happy, to learn and to achieve her
potential – but not to try to do it all myself. Partly because I just can’t (I lack the skills, the patience and the time), and partly because developing
independence, and her own world away from us, is a vital element of childhood.

“Yes, even for a child like Amy, who, unless there is a cure for Rett Syndrome, is
unlikely ever to become ‘independent’ in any way that the world understands it.
For her, independence is a state of mind: an opportunity to spend time with her
buddies without her parents always hovering, to develop her own interests, to
present herself to other people, unmediated by me.”

School is her place. Whenever I go there, I’m in no doubt that she knows stuff I don’t, in just the

same way as her older sister at her school. She gets the routines, and what’s expected, and how

she fits in. She has friends, she has a favorite subject, she takes part in extra-curricular activities. Catriona reading to Amy
(She’s in the school choir!)

When she first started, I worried that she wouldn’t learn enough, that she would spend too

much time in an unchallenged sensory environment and wouldn’t do enough ‘real’ things. Those worries

were unfounded. She is doing very well indeed, and loves learning. In her end-of-year report, her teacher says that Amy shows

a real enthusiasm for words. (Like the rest of her family, she is much less motivated by numbers, and regularly falls asleep in Math lessons!)

Her teachers and support workers believe in her, enable her and celebrate her. They have high expectations of what she will learn and be
able to achieve – and she rises to these. They notice the things about her that I notice, and many other things besides. They have helped
me appreciate my unique daughter more fully.

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

yo u r d a u g h t e r i s n o w a n a d u lt

post -school

Shelley Schmidt Shares her story as her daughter begins the
adult transition program through special education

I’m not going to lie Wrightslaw
the word “transition” TrAIning 2015
scares me. It’s right
up there with the Special Education Law & Advocacy
much dreaded
word “change.” Sept. 24, West Columbia, SC

My daughter McKenna, now 19, has special education teacher who also specializes Special Education Law and Advocacy Training
technically finished high school. She in working with assistive communication sponsored by PRO-Parents of South Carolina.
went across the stage in her wheelchair, devices. There is a part-time speech and Speaker: Pete Wright.
wearing her cap and gown. She received language pathologist who comes into the
a folder, but there was no diploma classroom daily. There are also PT, OT, and music Oct. 9, Richmond, VA
inside. That’s because she moves into therapists who come in to provide related
the second phase of schooling-a services according to the students’ IEPs. There Private Training - Partners in Policymaking. Speaker:
transitional program. The transition are six non-verbal/limited verbal students in Pete Wright.
program provides instruction and the classroom. Each has a 1:1 assistant. Their
support for students with special needs entire day is spent learning to communicate Nov. 7, Bradenton, FL
ranging from age 18-22. The transition with their ACC devices using the Unique
program focuses on the acquisition of Curriculum. They go to PE with general Special Education Law and Advocacy Training
daily living and vocational skills that education high school students who assist sponsored by the Family Network on Disabilities of
lead to a successful transition to adult them. They have general education students Manatee/Sarasota, Inc. Speaker: Pete Wright.
life within the community. come into the classroom weekly to do music
and art activities and, of course, allow them to Nov. 23, Rye Brook, NY
From the age of 14, there has been talk practice their communication skills.
of what McKenna’s transition program Greater NYC Metropolitan area), NY- Special
would look like. Would she go out into When I think about McKenna’s future, I know Education Law and Advocacy Training sponsored by
the community? Would she prepare for that communication is the key. She needs to be On With Learning, LLC. Speaker: Pete Wright.
a job? None of those options seemed able to read, write, and express her needs and
quite appropriate for my non-verbal, wants. I am so excited that this transition Dec. 3, Oklahoma City, OK
non-ambulatory daughter who couldn’t program is going to focus on all of these things.
even use her hands. What type of job With children who have Rett Syndrome, we Special Education Law and Advocacy Training
could she really do? I expressed my constantly need to think outside of the box. sponsored by the Oklahoma Disability Law Center,
concerns often. Although it is difficult to start a new school and Inc. and Partners in Education Advocacy. Speaker:
make new friends, I have every confidence that Pete Wright.
Then, I was told there is a second option. this new transition program is exactly what
It is a different type of transition McKenna needs, and I can’t wait to hear what Dec. 7, Temecula, CA
program, and it is only a few miles from she has to say about it!
our house. It is a communication Special Education Law and Advocacy Training
transition program. There is a full-time sponsored by AOTS Group. Speaker: Pete Wright.

SweeTrigrmahotirnseilansgwc.ahceto:dmuled

“RETT GIRL (FALL) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED 5

School can be Different

HOME SCHOOL

Bridget MacDonald shares her experience with the
school system and how she decided to home school

Chhoaemctker-eostuctthgooiorullir.nogrggrteiapts battle in the school system, my were always reading and learning
anxiety was at an all time high, how to spell and count and read.
School looks a We tried to make things work in Annie was declining and I was at
little different our school district but very the school almost every week The second year we really
to us than it quickly we discovered that it was fighting for something. I can't tell worked on not just teaching
does for most just not a good fit for our Annie you how liberating it is to not Annie things but really trying to
kiddos. This and in 2011 we decided have to research, gather find a baseline of where she was
September reluctantly to home-school her. professionals, and meet to battle at educationally. We discovered
Annie will not I say reluctantly because I was the school for PT time, OT time, that Annie could read and our
hop on a terrified to leave a team of inclusion, and the list goes on. goal was to determine exactly
school bus professionals and take on the job what reading level she was at and
and go to a of educator, PT, OT, SLP oh yah, The very first year we what she was comprehending.
brick and and MOM all by myself. I thought home-schooled strictly on our The overall focus shifted from
mortar school for sure I would let Annie down own, we didn’t use a full feeding her information to
like her brother and that I wouldn’t be able to curriculum for Annie, we just getting more information out of
and sister will. keep up. I was wrong! looked at the State standards for her. We found that she was very
general education and tried to smart indeed! Reading and
Annie and I are enjoying a much find materials that we were able incredibly comprehending at
more relaxed atmosphere and to adapt that would help us teach almost grade level!
the entire family is enjoying an these things. We would adapt
overall much happier, calmer different workbooks and Once we determined that Annie
household. We had a heck of a assignments so that Annie could was able to understand and
use eye gaze to answer questions comprehend grade level work we
(always low tech). We also used switched her from home
apps like Brainpop Jr. and Raz schooling to on-line schooling.
Kids. Kindergarten was pretty This was great! It took a HUGE
easy to do at home, I was used to burden off of me to find many
having little ones around and we curriculum's and keep up with all
the subjects. Of course we still

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

had adaptations and parts of the where Annie may be able to do PRESUME
curriculum were removed (hand- therapy but can't really COMPETENCE!
writing for instance) but she was concentrate enough to do school,
able to keep up with the work for days where she can concentrate Here are just a few tips for working with girls
grades 3 and 4! on school but is too weak to do who have Rett Syndrome in any educational
therapy and days where she is setting: (from teachinglearnerswithmultipleneeds.com)
This Fall when we go back to exhausted and her body just
school I think we will move back needs to rest on the couch but • Remember that apraxia is a key component
to straight homeschooling. I’m one thing is certain, she is doing of Rett Syndrome.
finding that the math curriculum leaps and bounds better than she
is getting really hard to do was in the brick and mortar • Hand wringing and related stereotypes are
(especially for a kiddo who can’t school setting and we will a hallmark of Rett Syndrome. Functional
write down their work), and the continue to fight daily to educate hand use is occasionally possible for some
writing assignments are getting her and keep her strong and girls with Rett Syndrome, however, as a
longer and longer. It takes us healthy until God's perfect time general rule, goals that work towards hand
about 5 times longer to do any when He reveals a cure. use should be re-thought.
sort of assignment so we need to
streamline our day a bit. This Tr y tmhai st heby eo agradz eTeisanc’ht iacnbagnlembteaotahmbtaointsicpohumallaelteoennageipnweghn!ocil • Because you can't measure her knowledge
year we will work hard on fully due to the combination of hand
communication, reading and stereotypes and apraxia of speech, even
writing and of course to math, using high technology, you must assume
science, and history but not make that she is competent to avoid causing a
those subjects such a focus. developmental disability through
educational neglect.
Homeschooling does take a lot of
time and a lot of patience. I don’t • Anxiety is a massive issue in Rett Syndrome.
recommend it for everyone, each The girls are often times unable to
family is different, each child is communicate their anxiety or ask questions
different but it works for us. to clarify situations, which may be causing
Annie is FLOURISHING! She is anxiety.
much happier, much more
engaged, calmer, more social and • Eyes are usually the best means of
all around just more aware. I communication.
attribute a lot of this to her now
being surrounded by people who • Although a few girls can speak some words
believe in her, people who and a few others can use their hands or
believe she is an intelligent girl switches to activate augmentative
trapped inside a body that communication devices, most girls do best
doesn't work. when using eye gaze as a way to
communicate.
One last bonus to at home KateBAilheorDfno’RswignChlootmasdmHuneircaetion
schooling is that we get in a TON • Literacy is a human right! Rett Girls can
of PT during the day. We do read!
school work in her stander, doing
tummy time, on her vibration • Start teaching girls with Rett Syndrome
platform, on her squishy disk, letters, letters sounds, letter blending and
anytime we can do two things at word segmenting along the same time line
once we do it. Especially if it’s as typical peers.
less demanding work. Of course
not every day is spent being so
productive. We have lots of days

“RETT GIRL (FALL) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED 7

E D U CAT I O N

RESOURCES

SOME COOL WEBSITES TO HELP YOUR RETT GIRL Throughout THE
SCHOOL YEAR!

ONGOING BRAIN POP JR. Barefoot Books
LEARNING!
This Website or App allows you to A great site for all our bookworms
These resources have been either buy full access or share free out there! They focus on themes
hand-picked to help your information. Brain Pop Jr. is used in that encourage independence of
child throughout the year. many public schools, offering short spirit, enthusiasm for learning and
You will find everything animated films that teach all sorts respect for world’s diversity. Books
from books, videos and of subjects from art and music to range from birth up to age 12 and
games that help your Rett math and spelling, from preK to 3rd up. Check out their Fall/Winter
Girl practice her reading Grade. jr.brainpop.com Collection! barefootbooks.com
and math skills to just
having FUN while learning! DO 2 Learn SYMBOLWORLD

Check out Rettgirl.org for Educational games and printables, This website is created by Widgit
more resources throughout picture cards and hands-on resources Software specifically for symbol
the year. to educate on social skills and users. It has material for all ages
behavioral regulation activities and and includes news, personal
guidance, learning songs and games, contributions, stories and an array
communication cards, academic of learning materials that can be
material, and transition guides for personalized! symbolworld.org
employment and life skills.
do2learn.com

Choose it Maker SPECTRONICS

TVoisfiintdtohuet More great rseistoeurHceesre A great site that enables teachers This is an AMAZING resource for
Rett Girl and parents to turn their personal communication – everything from
photographs, symbols, text and activity exchange for devices to
sounds into engaging cause and complete lists of communication
effect or choice-making activities, apps to new product features, this
games and quizzes for children with site has everything!
special educational needs. spectronics.com.au
chooseitmaker3.com

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

one place for special needs Teach to talk OTHER GREAT
WEBSITES
You can spend hours here finding Offers educational resources for
resources on absolutely everything. children which target core speech 1. raz-kids.com
Education, Apraxia, IDEA law, and and language, play and social skills 2. theteacherscorner.net
products. using techniques including video 3. toonuniversity.com
oneplaceforspecialneeds.com modeling. Educational products 4. earobics.com
include videos, audio compositions, 5. mothergoose.com
Songdrops books, games, toys, flash cards and 6. senteacher.org
other educational materials. 7. sillybooks.net
Youtube channel introduced to us by teach2talk.com
one of our speech therapists. It has
lots of silly songs by Brian Oden that HelpKidzLearn
will make your little girl giggle!
youtube.com/songdrops This is a fantastic site for adapted
learning! $99 for a subscription of
STORY BOTS 80+ Games & Activities that can be
accessed using mouse and keyboard,
Great website that lets you customize switch(es), touch screen, interactive
a book with your child's face and classroom displays, joy stick, roller
name! The first book is for free and ball and eye gaze.
then there is a $4.99 monthly fee to helpkidzlearn.com
access 41 other books! TOO FUN!!
They also have an app!
storybots.com

SMARTY EARS APP Che&ckedouuctatoiuornawl hwoleeblsisitteosfHaeprpes!

Smarty Ears are Educational Apps
for promoting speech and language.
Smarty Ears has created over 50
applications for children and adults
with speech and language delays
and disorders such as stuttering,
articulation delays, autism, down
syndrome, and language disorders.
smartyearsapps.com

“RETT GIRL (FALL) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED 9

Rett
GIRL

FALL
e IEP

AN INDIVIDUALIZED EDUCATION PROGRAM (IEP) IS A WRITTEN
STATEMENT OF THE EDUCATIONAL PROGRAM DESIGNED TO MEET
A CHILD’S INDIVIDUAL NEEDS.

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

I T ' S T H AT T I M E O F T H E Y E A R A G A I N

Navigating the IEP

EXPECT PROGRESS! These are our tips for a more positive
experience!

The IEP process can be so frustrating and confusing. It’s intimidating to sit at that meeting with so many professionals
but always remember that YOU are the EXPERT on your child. Take a deep breath, collect your thoughts and get
ready. This may feel like a fight but resist that temptation, try to leave some of your emotions at the door, this is
a partnership that you will form with the team to ensure that your child is getting all the support she needs to
learn and progress.

The very first thing to do at an IEP is to educate your team about
Rett Syndrome. We all know that we are dealing with a rare disease.
Most times your Rett child may be the only Rett child in the school.
Don’t expect the team to know what Rett Syndrome is, be the one
who educates them! After educating them on Rett Syndrome,
educate them about your child.

IEP CARE NOTES IEP GOALS & OBJECTIVES

After learning about Rett Syndrome and your You may want to include some Every child with an IEP has goals
child, you and the team need to come up with “care notes” in your IEP so your and objectives for the year. Goals
goals for your child to meet. These can include Rett Girls teachers and paras know and objectives are written
education goals, OT, PT, communication goals, exactly how to care for her. Some statements in the IEP. They
and don’t forget to include social and inclusion things to INCLUDE ARE: describe what the child will learn
goals. I know, I know, this sounds like a LOT and or focus on in the upcoming year
it is, but with some resources it is VERY •Her communication preferences in school.
obtainable! •A message to the PT
•Her feeding schedule •Goals look at big steps. They
•Hygiene state what the child is expected
•A message to the OT & ST to learn during the year.

CLICK TO DOWNLOAD •Objectives (or in other cases,
AN EXAMPLE benchmarks) are smaller steps.
They break the annual goal down
into smaller pieces.

CLICK TO CHECK OUT
EXAMPLES

HeRreettarKeidsSdoomhs!aersHeaamvietpleawnIEitePfhsfeUcftrsiov!me IoEtPh?er 11

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

A LIST TO HELP YOU

IEPS "DO's & DONT'S"

The following list of IEP “do’s and don'ts” is excerpted
from The Everything Parent’s Guide to Special Education

by Amanda Morin:

KNOW THE LAW! Every meeting is different, but there are some basics of etiquette that you should try to stick
to. It’s easier to remember them as the do’s and don’ts of a meeting. Hopefully, everyone in the
meeting follows these basic rules.

In preparing for your child’s IEP team 1. DO be respectful of other people’s opinions. Being rude or attacking a person for her
meeting, it is important to consider opinion will not be helpful in coming to an agreement. It’s more likely to make other
how the services you are requesting people defensive and not as willing to listen to your own opinions.
are specifically tied to your child’s
ability to succeed in the classroom. 2. DON’T accept opinion as a fact. Feel free to ask for clarification or for the evidence that
backs up an opinion.

Therapy services, as well as other 3. DO ask questions. If there’s something you don’t understand, speak up. You’re

supports, when provided in the probably not the only person around the table who doesn’t understand, and even if

school setting, are implemented you are, you have to completely understand what’s going on to make informed
based on the existence of measurable, decisions about your child’s education.
education-based goals related 4. DON’T be intimidated. Staying silent because you’re worried about what people will
directly to your child’s ability to think or because you think the professionals know best is more likely to lead to
function at school. resentment and misunderstandings.
5. DO give people the benefit of the doubt. Making accusations or assuming that the

READ IDEA 2004 school is going to oppose your ideas just because they can isn’t fair. Unless you have
clear reason to believe otherwise, it’s better to assume that everybody there wants to

help your child.

6. DON’T be accusatory. Even if you encounter differing opinions or opposition, try to

stay firm but fair. Until you ask directly about the motives behind a decision or

opinion, you can’t know for sure what somebody else is thinking.

7. DO keep your temper. It’s okay to be emotional at an IEP meeting, and it’s even okay
to cry; most people will be sympathetic and understand that it is difficult to sit in a
CHomemreunairceatsiooWnmreisitginKrgEeaYItEPcwoiGmthomaouulnsricRatetiotnGtiirplss!! meeting and hear about your child’s weaknesses. But it’s essential to keep your
temper under control. It may not be easy to do, especially if you feel like your parent
ing is being questioned, you’re not being listened to, or an inaccurate picture is being
painted of your child. But losing your temper may also cause your point to be lost as

well.

RwMeiittnathfkoGeyrDoimirtualas,eitlacytiohsenCeaycocakfmhboeomroruuutyttnootihuchseraisrhtaidosrnaaeymLopgle 8. DON’T hesitate to disagree. If you think a goal isn’t appropriate, you have every right
to say so. If you think a teacher isn’t seeing the full scope of your child’s limitations,
speak up and explain what other teachers have seen in the past and what you see at
home. Disagreement doesn’t necessarily have to cause strife. It’s a way to make sure
all the issues and angles are thoroughly explored.

Excerpted from: Chapter 19: Attending and Participating in an IEP Meeting | Copyright © 2014
F+W Media, Inc. All rights reserved

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Rett
GIRL

FALL
Eye Gaze

NOT BEING ABLE TO SPEAK IS NOT THE SAME THING AS NOT
HAVING ANYTHING TO SAY.

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

some great info on how to get started

EYE GAZE

Navigating the confusing world of eye gaze

Navigating through the world of technology and eye gaze devices can seem like aover- MEDICAL
whelming obstacle! We’re here to help educate you a little on the whole process and NECESSITY
make the task a little less daunting! LETTERS

First and foremost don’t assume that just because your child has Rett Syndrome that Not much can make a
they automatically need an eye gaze computer. Yes, the vast majority of our kiddos do person’s heart skip a beat
very well with this type of technology but there are many ways to access more than the arrival of a
communication. The first step in determining IF an eye gaze device is right for your letter or explanation of
child is to make an appointment to see a Speech and Language Pathologist (SLP), one benefits (EOB) statement
that specializes in Augmentative Communication. An SLP with Aug. Comm. Experience from the insurance
would be able to show you different communication devices and will be able to company that denies a
evaluate your Rett child to determine which type of access is best. Options could claim, leaving the patient
include switches, touch screen, low tech eye gaze or an eye gaze computer. on the hook for tens of
thousands of dollars. With
Start your search for an SLP/Aug. Comm. Specialist with this in mind, we have
y o u r l o c a l C h i l d r e n ’ s H o s p i ta l . Some insurance carriers will be more compiled a few great
examples of successful
willing to accept a request for a speech generating device if the evaluation comes
from a reputable hospital versus a small independent clinic. HERE!sample letters

Some schools have Augmentative Communication Specialists

who may be willing to assess your Rett child in using an eye gaze computer, however,
be aware that IF your school does purchase one for your child's use, it is the school’s
computer and your child may not be able to use it on extended leaves summer break,
etc. or if you move schools it may not move with her especially if you move out of your
current district.

If it has been determined that an eye gaze computer is the best option for
your Rett Child the next step is to determine which device is best for her.
Check out our Eye Gaze Information Page for a listing of all the devices on
the market today. Your SLP can call each of the reps for the different
devices and set up a trial for your Rett child.

“RETT GIRL (FALL) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED 14

insurance companies will want to see that your child has trIAled several devices, so make
sure to document her ability with each one.

The third step in obtaining an eye gaze computer is approaching the insurance company. This is where things get a little tricky. Every
area and every insurance company is different. Some pick up devices no questions asked and others simply won’t cover it no matter
what documentation you have. These devices are NOT cheap though so running it through insurance first is always best. When
approaching the insurance company make sure to have a script written for a “speech generating device” (always use that terminology
when referring to an eye gaze computer). You should also have a letter written by your SLP that documents your child’s ability to use
the device, and the fact that the device is “medically necessary.” The more detail the better. Lastly, you should also have a letter from
your Rett child's neurologist or Rett specialist. Again, this letter should state the “speech generating device” is “medically necessary.”

If your insurance company denies coverage you
can always appeal.

You may want to send more information, an additional letter from
another specialist or another SLP. You could include a DVD with
videos of your child using an eye gaze computer. You may also want
to include this article that discusses the use of eye gaze computers
and cognition with girls with Rett Syndrome.

If you have determined that you will need to private pay for your Rett

Girl’s eye gaze computer you may find funding assistance through

one of the organizations listed on our Grants and Funding Page.

Some families have been able to utilize Make A Wish or other wish

BRoeDattIgrMYidrla.oHEkryegEeyRGoEua!rzoewn granting organizations to obtain a computer and others have set up
fund-raisers to assist with funding.

Check with your local Lions Club, Rotary Club
or other local service organizations

They may be able to assist with funding or fund-raisers. Now that you
have determined the right device for your daughter and navigated

the funding aspect what do you do in the mean time while waiting for

your device to arrive? First, check with the company that you are purchasing through, some of them will loan you a device while you are

waiting for yours, that way you can get started right away! If that’s not the case then continue to work on communication through eye

gaze. You may be able to download and print some of the pictures that will be on your child’s computer. You can make your own Eye

Gaze Flip Chart or Eye Gaze Board and some families have had a lot of luck with using PODD in low tech and then moving it to their

computer. Your child’s SLP may be able to give you additional ideas as well. For online training check out Rett University.org.

Communication is life changing for our Rett Girls. This is a long process but well worth the effort. We hope this has been a valuable

resource to you and has given you a good starting base for obtaining your child’s device. Good Luck!
disTca&ukscesoiagnngloittoihokena.utCstleihcioksfHaerEytReicEgleaze RIseatIntCndsGhuefircrulakn’sndocieuneytgedopeuganraygzgeinergfadonerytvoshiucerelp?.1 5
“RETT GIRL (FALL) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED

Rett
GIRL

FALL
R e c ip e s

GOOD FOOD IS ALL THE SWEETER WHEN SHARED WITH GOOD
FRIENDS.

“RETT GIRL (FALL) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED 16

School Lunches

BLENDED FOODS

A HEALTHY ALTERNATIVE FOR RETT GIRLS WITH A G-TUBE

IMPORTANT Packing lunches should be easy, but with dietary restrictions, chewing and
TIP! swallowing difficulties and tube feedings school lunches get pretty tricky.
We’re here to help with recipes for school lunches that ALL our Rett Girls can
A regular blender is NOT the enjoy!
same as a HIGH SPEED blender
such as a Vitamix or Blendtec. PumPkin Smoothie Banana Almond smoothie
A Cuisinart or KitchenAid are
fine normal blenders but do Makes roughly 300mls Makes roughly 300mls
not have the power you will
need for fine blends. •1/2 cup Whole Milk Yogurt •1/2 cup vanilla yogurt (85)
or cottage cheese (85) •1/4 cup rice or hemp milk (32)
You can however, use a regular •1/4 cup Pumpkin (70) •1/2 banana (80)
home blender if you are using •1 (28 g) walnuts (oz) (200) •1/2 Tbsp raw honey (30)
finely pureed baby foods as •1 pear (100) •1 Tbsp almond butter (100)
your ingredients because the •4 ounces of rice or hemp milk (65) •1 cup spinach (80)
blender then doesn't have to
be capable of pureeing whole *Mix on soup setting in a Vitamix *Mix on soup setting in a Vitamix
foods. This method is not as or Blendtec blender until it is thin or Blendtec blender until it is thin
easy as using a high-speed enough to use with a feeding enough to use with a feeding
blender but is a good way to pump! pump!
get started without a large
cash investment. *Raw, local honey can be used to help with *Raw, local honey can be used to help with

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

FaorqbunolieuecenrkddRleutednotctdbhiGeeitdirreHlesafErotRinhgaEetr'Sadtoeaeds!n’t TIPS FOR TUBE FEEDING AT SCHOOL:
1. Always have feeding protocols spelled out in your child's IEP
2. Set Clear instructions on safe handling procedures as well as clear

directions of how to deal with a tube that has been pulled out
3. Make sure that food or formula is in a cool pack with an ice pack if it

needs to remain cool during the day
4. Write down the instructions for your child’s feeding regimen and

be specific about volume , over what period of time, etc.

5. Offer to train staff – and make sure at least 2 people are trained

IcfhRyecoekuurosuRatebtttlheeGiFSrl oiqsoudoonoPasohpuiucrheeedsd! iet 6. If you are sending in supplies – make sure they are clean and
clearly labeled

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

recipes

GLUTEN-FREE FOODS

Perfect recipes for the school year that she will love!

Because our girls have limited hand use some times finger foods are easier, they’re usually already in
bite size pieces so there’s no cutting and chopping for whoever is feeding them. That’s why we have
compiled a few Gluten-Free and GFCF Lunch ideas to send to school with your Rett Girl! She will not only
find them delicious, but easy to eat too!

DEVILED EGGS - from PALEOCUPBOARD.COM

Serving Size PREP TIME TOTAL TIME Ingredients

8 15 20 • 8 large eggs
• 1/3 cup paleo mayonnaise (or
MIN MIN
1 medium ripe avocado)
• 1 tbsp. prepared mustard
• Sea salt and ground pepper to

taste
• Paprika for garnish (optional)

Equipment

• Medium saucepan
• Ice cubes
• Knife
• Medium sized bowl
• Piping bag (optional)

DIRECTIONS 18

Museum

Add eggs to a medium sized saucepan and fill the pan with enough water to cover the eggs. Place the pan on the
stove over medium-high heat and bring just to a rolling boil. Remove the pan from heat, cover, and let sit for 12
minutes. Place the eggs in a bowl of ice water for 3 minutes to stop the cooking process. Roll each egg back and
forth gently on the counter with the palm of your hand to create small cracks across the egg, then gently slip off
the peel (sometimes it helps to peel them under a gentle steam of water). Cut the eggs in half lengthwise and
scoop out the yolk of each egg into a medium sized mixing bowl. Place the egg whites on a tray or plate, round
side down. Add the mayonnaise and mustard to the egg yolks and mash together with a fork. Make sure that you
get a creamy consistency and that all of the lumps are removed. Add salt and pepper to taste. Scoop a spoonful
of the egg yolk mixture into each egg white and top with a couple dashes of paprika.

Place in the refrigerator until ready to serve.

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

The fiber, complex carbs, and protein in the chickpeas combined with heart-healthy olive oil are what
make hummus such a perfect snack food. The mild flavor of this hummus makes it a definite
kid-friendly option. Serve with glutten free crackers or cut-up vegetables like cucumbers. Prepare and
refrigerate it a day ahead; let it stand at room temperature for 30 minutes before serving.

5-minute hummus - from Realsimple.com

Serving Size PREP TIME TOTAL TIME Ingredients

2 05 10 • 15-ounce can chickpeas,
rinsed
MIN MIN
• 1 clove of garlic
• 1⁄4 cup olive oil, plus more for

serving
• 2 tablespoons fresh lemon

juice
• 2 tablespoons tahini (sesame

seed paste; optional)
• 1 teaspoon ground cumin
• Kosher salt
• 1 tsp walnut oil
• 1/4 tsp of paprika

DIRECTIONS

In a food processor, puree the chickpeas and garlic with the olive oil, lemon juice, tahini (if using), cumin, and ¾
teaspoon salt until smooth and creamy. Add 1 to 2 tablespoons water as necessary to achieve the desired consis-
tency. Pulse until smooth, scraping down sides as needed.

Transfer to a bowl. Drizzle with olive oil and sprinkle with the paprika before serving.

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

APPLE CINNAMON MUFFINS - from deliciousobsessions.com

Ingredients

Serving Size PREP TIME TOTAL TIME • 1 cup unsweetened coconut
shreds
12 05 30
• 1 cup blanched almond flour
MIN MIN • ¾ cup tapioca flour
• 2 tsp. cinnamon
DIRECTIONS • ¼ tsp sea salt
• ½ cup avocado oil. (Costco), or
Preheat oven to 350
melted butter or melted
Museum coconut oil
• 3 pastured eggs
Butter the silicone muffin cups or cupcake pan. Alternatively you can • 3-4 tbsp. honey
also use cupcake pan liners. • 1 tsp almond extract (Vanilla
would work fine too)
• 1 TB apple cider vinegar (Don’t
leave this out! It reacts with
the baking soda and helps with
the rise
• 1 medium apple, chopped

Mix everything but the apple into a mixing bowl and combine with hand
beaters. Fold in the chopped apples. Scoop into silicone muffin cups or buttered cupcake pan.

Bake at 350 for 25-30 minutes....

Let cool. Then eat them. They’re just heaven.

Have a great recipe?
Email us & it could
be featured in our
dPheotloiscbiyousobsessions Holiday Guide!

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

20

Rett
GIRL

FALL
Pro ducts

WHILE STUDENTS RETURN TO SCHOOLS ACROSS THE COUNTRY
AND THE WEATHER BEGINS TO COOL, WE HAVE COMPILED A LIST
OF FALL MUSTS FOR YOUR RETT GIRL THAT ARE SURE TO MAKE HER
SCHOOL DAY EASIER AND FASHIONABLE!

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

B E S T FA L L P R O D U C T S

OUR TOP LIST

THE CLASSROOM WILL NEVER BE THE SAME!

CI SLFAUSNS!IN ANY CLASSROOM THESE WILL SURELY BE Self Inking Stamp
These limited Edition neon
A BIG HIT! stamps allow your daughter
to sign her name to all of her
Feeding Tube Backpack homework, valentines, or
Does your girlie need hernotes to her teacher or
friends! Cases are available
1tube feeding for school? in three flashy colors: Neon
Lime, Orange and Pink.
NO problem! She can look -$24.02 roanokestamp.com
super stylish with this
feeding pump back pack! Eye Gaze Board
(can be worn OR placed This device helps make eye-gaze communication more
on her wheelchair) accurate and understandable! It is made with clear,
-$45.00 shatter-resistant plastic. It comes with two self-contained
height adjustable triangle stands. Our daughter uses it both
32cutieptubies/etsy.com at home and at school to help make choices throughout her
4LilGadgets Children's Wireless day. -$79 enablingdevices.com

Headphones Weighted Lap Pad
We love these wireless, bluetooth The deep pressure of a weighted pad allows your
headphones designed to fit little daughters nervous system to better integrate
heads! touch, movement, position, and pressure. Lots of
moms feel they help calm their girls throughout
5-$49.95 Amazon.com the school day and allow them to better focus
-$29.95 LilliePads7/etsy

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

ST Y L I N GFunctional Styles for Tsukihoshi Shoes
These ADORABLE shoes fit over AFO’s!
your rett girl this These great shoes focus on the health,
protection and comfort of children’s
F A L LFALL season! feet.
-$58.95 Toddler -Youth
Medical Alert Bracelet badorfkids.com
Who wouldn’t love this Boho Wrap Beaded

6Medical Bracelet in shades of earth, gold, light

lemon and iridescent purple hued beads. Just
a casual wrap bracelet with a hint of glitz!
-$79 n-styleid.com
978Sweediebibs
Armbraces.com
Check out this super stylish bandana bibs! This great website lets you customize your
The clever design with extra fabric in the daughter’s arm braces with a large amount of
front makes sure to catch the drool. and thefabric options or you can even send them in your
super absorbent middle layer keeps own fabric! $22.95 - $25.95 armbraces.com
clothes underneath dry for as long as 8
Knot Genie
10hours. -$12-$14sweediekids.com Make getting ready for school a
whole lot easier and with no more
tears during hair brushing!
-$10.30 Amazon.com

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

Rett
GIRL

FALL

Oct. Awareness

OCTOBER IS THE OFFICIAL RETT SYNDROME AWARENESS
MONTH. FOR THAT REASON, RETT GIRLS’ FAMILIES ARE HOLDING
AWARENESS CAMPAIGNS AND FUNCTIONS AROUND THE WORLD
TO FURTHER RAISE AWARENESS AND RAISE FUNDS FOR RETT
SYNDROME RESEARCH. WON’T YOU JOIN US?

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

A s ta rt e r g u i d e t o r e t t sy n d r o m e

WHAT IS RETT?

HERE IS AN INTRODUCTORY GUIDE TO RETT SYNDROME YOU CAN
SHARE WITH FRIENDS, FAMILY AND TEACHERS

Rett Syndrome

Rett Syndrome is a neurological/movement disorder
which predominantly affects girls (approximately 1 in
10,000). Many attain developmental milestones from
birth to age two or three, but then begin to regress.
Others are slow to develop from birth. It affects all
aspects of motor control. In addition, there are cardiac,
respiratory, gastrointestinal and orthopedic concerns.
Rett is considered a "full-spectrum" disorder with varying
severity and phenotypes depending on the child's unique
genetic makeup, specific mutation, and/or percentage of
cells skewed to use the mutated vs. the healthy copy of
the Rett gene.

Most girls have repetitive hand wringing and/or mouthing,
although the age of onset varies. Another common
symptom is disordered breathing that can include
hyperventilating, breath holding and shallow breathing.
Teeth grinding is also prevalent.

Other facts:

• Caused by a single gene mutation that leads to underproduction of an important brain protein.
• The leading genetic cause of severe impairment in girls - most cannot speak, walk or use their hands.
• Despite their physical disabilities, girls with Rett Syndrome are believed to be functioning mentally at a

much higher level than previously thought.
• As prevalent as Cystic Fibrosis, ALS and Huntington's.
• Another little girl is born with Rett Syndrome every 90 minutes.
• Rett Syndrome is a potentially REVERSIBLE disorder. Research has proven once protein levels are back

to normal levels, symptoms subside.

Today, there is no cure. But Rett Syndrome is CURABLE!
Amidst the mass confusion going on within their central nervous systems, they are smart, strong, and waiting bravely for
us to unlock the door to their recovery.
Researchers at Harvard, Baylor, UVA, Weill Cornell, Emory, Salk Institute, University of Edinburgh and dozens of other
top-notch institutions are delving into Rett Syndrome.

Why?

Not only will their work help thousands of girls and women worldwide, but their findings have a direct impact on research
on Autism, schizophrenia, bipolar disorder, Alzheimer's and many other disorders.
In essence, our girls may hold the key to a cure for millions of people suffering from dozens of disabilities.

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

How is it diagnosed? RETT
SPECIALISTS
The diagnosis of Rett Syndrome will typically be given by a pediatric neurologist,
clinical geneticist, or a developmental pediatrician. Looking for a doctor in your area
who is familiar with Rett
A pediatrician or therapist familiar with Rett Syndrome may believe it to be the Syndrome? We have compiled a
cause of the child's low muscle tone, scoliosis, seizure disorder, and/or loss of list of doctors and therapists by
speech/mobility (among other symptoms), but will generally refer the patient to a region in the USA. Click HERE
specialist more familiar with neurological and genetic disorders. Once referred to
a specialist, they may look at all the symptoms presented by the patient and
suggest different tests to rule out other disorders or syndromes including, but not
limited to, Rett Syndrome.

Many girls can be given a clinical diagnosis based on observations by one of the hHiilmnetas/yvheoueusrar. kCganrlroiecewakat?HasbPepolreeueactisaelist
above specialists. A blood test can be preformed to confirm a gene mutations
known to be a factor in Rett Syndrome, including the main gene MECP2. There are
also individuals who have mutations in the CDLK5 and FOXG1 genes who are
diagnosed with atypical or congenital Rett Syndrome

Understanding their needs

What skills/strengths do these students have?

• Rett patients are generally social and respond favorably to touch and
interaction.

• They have a strong eye gaze which remains consistent despite motor
issues which can be leveraged for communication and computer access.

• They are capable of learning both physically and academically.
• They are able to communicate basic emotions through body language

and vocalizations.
• Their receptive learning/understanding level is high.
• Given a way to communicate they can indicate higher level reasoning

and learning.
• Usually love books and the computer.
• Able to persevere past the apraxia in a supportive, encouraging

environment.

What key things impede their ability to progress?

• Lack of stimulating environment (physical and academic)
• Severe apraxia
• People thinking it is more of a cognitive issue than an apraxic issue
• Poor balance
• Poor sensory integration
• Erratic breathing
• Disruptive, uncontrollable hand movements
• Extreme anxiety
• Seizure activity

What should I take into account when presenting tasks or trying to
educate a Rett student?

• Assume competence cognitively
• Look for things that are highly motivating to incorporate into the task or into the "reward" for

participating. (Food, music, favorite book
• Expect anxiety when presented with new things. Keep first exposure short and then increase

time at each subsequent session.
• Communicate with child what your expectations are.)

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

• To lessen anxiety, have a way for the child to communicate with you.
• Read their communication first – be a "meaning maker" to all their attempts
• Give fun ways to communicate: real comments, expressions, arguing, etc. -- not just requesting.
• Give them choices.
• Be sure they are properly/securely positioned.
• It helps to move items you want them to attend to in order to recapture attention
• Do not necessarily take non-response or frustration as a sign the child cannot do the activity.

Often, these girls are bored and unmotivated at the cognitive level being presented.
• Try not to "undershoot" the girls for example by putting them in repeated demand situations

(look at …., point to…)

What kind of pace is beneficial?

It is important to break down tasks into very small steps and stretch out over a long period of time with a lot of repetition.
Each step should provide an opportunity for success.
Example: Learning to use a light switch.

• Stage One: Approach switch with child and verbally talk about the switch and turn it off for them.
• Stage Two: After verbal prompt, use hand-over-hand to model.
• Stage Three: Approach light, give verbal prompt, but wait for ANY reaction (head turn, hand jerk, etc) before using

hand-over-hand.
• Stage Four: Follow above, but wait for increased reaction (hand touching anywhere on the wall).
• Stage Five: Follow above, but wait for increased more precise reaction (hand touching general

vicinity of switch).

*It is important to give enough time and wait for initiation of response from child. Sometimes their bodies are not able to
react for 30-60 seconds or more. If they look toward the item accept that as communication and build on it.

What should I take into account
when presenting tasks or trying to
educate a Rett student?

• Assume competence cognitively
• Look for things that are highly motivating to

incorporate into the task or into the "reward" for
participating. (Food, music, favorite book)
• Expect anxiety when presented with new things.
Keep first exposure short and then increase time
at each subsequent session.
• Communicate your expectations to your child
• To lessen anxiety, have a way for the child to
communicate with you.
• Read their communication first – be a "meaning
maker" to all their attempts
• Give fun ways to communicate: real comments,
expressions, arguing, etc. -- not just requesting.
• Give them choices.
• Be sure they are properly/securely positioned.
• It helps to move items you want them to attend
to in order to recapture attention
• Do not necessarily take non-response or frustration as a sign the child cannot do the activity. Often, these girls
are bored and unmotivated at the cognitive level being presented.
• Try not to "undershoot" the girls for example by putting them in repeated demand situations
(look at …., point to…)

What is the best environment to work in?

• The ideal setting would be a quiet place with little distraction or sudden noise.
• Avoid bright lights or shiny objects which can be very distracting.
• Keep the surroundings predictable for each session.
• Incorporating a sensory rich environment can increase success (music, rhythm,

deep pressure/weighted vest, etc)
• Incorporating a consistent mode of interactive communication for the activity

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

What do these students tend to enjoy? PURPLE
CARDS
Music, water, face-to-face contact, weight/pressure/massage, swinging,
small group or one-on-one interaction with normal peers. People who These amazing little personalized
are fun, funny, engaging, exciting, and those who wait for them and
believe in them.

What generally causes stress in Rett students? awareness cards are a great way to

• Not being able to communicate share your Rett Syndrome story

• Change / new things anytime, anywhere! Imagine never
• Sudden noise

• Physical pain from gas pains, air swallowing, constipation and other having to explain Rett Syndrome in
issues. front of your daughter ever again!.

• People who don’t talk to them like they are people

• Remember: Avoid negative comments/commentary in their presence –

they understand and will internalize the information. To celebrate during this October

Communication Awareness month, we are giving
away a set of 1,000 Purple Cards to

What kind of communication can I expect/work towards with a child with Rett? TWO lucky winners! Drawing will

Many of the Rett patients have had success with the following: Click Herebe held until Oct. 9!
• Big Mac and Step-by-Step switches
• Yes/ No cards to enter the drawing or visit our
• Boardmaker icons
• Eye-gaze computer systems Rett Girl Facebook page at

If they are not capable of "swatting" at a switch with their hand, FB.com/rettgirl and click on
consider other placements for access with their head or cheek.
• Look for every opportunity to assign meaning to their movements and the "giveaway" tab! "

vocalizations.
• Eye gaze systems (hi and lo tech) will be the most consistent over time.
• They are capable of symbol recognition as well as learning to spell/read.

Which key classroom/therapy supports may be needed?
• Positioning: chair with proper back and foot support with tray for

feeding and activities, stander with activity tray
• Communication: Various switches, eye gaze system (low tech

boards and hi tech infared computer systems are available)
• Sensory: Weighted vest, weights for wrists and ankles, swing,

music player

DOther:
id you k• Arm braces to give hands a break from mouthing and wringing
pu now tha• Small bite-size snacks and water should be available throughout the day
can rple c t the• Laminated materials
Goals 10Orddifebfreeryeponurtirnsltaetndogaduiranadygo!evesr?• Slant board for easier reading

What would be helpful in writing their IEP goals?
Progression in their learning follows the same patterns as "normal" children, it is the time line that is extended to a great
degree.
What is the long-term prognosis?
While many patients with Rett Syndrome live into their 40s and 50s, they require total, 24-hour-a-day care. Ongoing
therapy is critical to their well-being.

What is the research outlook?
Rett Syndrome is most often caused by a sporadic mutation in the MECP2 gene, causing underproduction or
misproduction of a protein that plays a key role in turning on and off other genes. In 2007, researchers were able to
reverse the symptoms of Rett in fully mature mice only days from death by reestablishing normal protein levels in the
brain. In 2012, researchers were able to replace the faulty gene in mice using gene therapy which led to a complete
recovery. It is possible that Rett Syndrome will be the first curable childhood neurological disorder.

“RETT GIRL (FALL) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED 28

PLANT FLOWERS FOR A CURE

Garden of hope

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

What a better way to raise awareness this October than to HOST a FiAndGoautrdmeHonreeorfeabHooupte
Garden of Hope. You've seen shamrocks, sneakers and hot air balloons
that you sign in exchange for a $1 donation...we have paper FLOWERS!

Together these flowers create a "Garden of Hope." Each garden not
only grows hope for Rett Syndrome, but awareness and funds. Start
one this month and watch how fast your garden GROWS HOPE for RETT
SYNDROME!

BE A GARDEN SPONSOR HOST A GARDEN PLANT A GARDEN

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

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

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

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

mail them in.

GET STARTED

29 We Gsuaprpdoernt oRfSHRopTe wfuitnhdso!ur

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

T H I S FA L L H O S T A N E V E N T w i t h u s

GP2C

HELP US RAISE AWARENESS FOR RETT SYNDROME

PUMPKINS FOR
RETT!

JOIN US FOR OUR 2ND Submit your pumpkins HERE
ANNUAL PUMPKINS FOR Post Pumpkins to: www.FB.com/events/pumpkisforrett

RETT CONTEST! Want to host an event to benefit GP2C?
Girl Power 2 Cure's main goal is to raise
GET YOUR ARTISTIC FLARE awareness and funds for Rett Syndrome
ON AND GATHER YOUR research. Through grassroots fund raising
FAMILY AND FRIENDS events we are bringing the Rett Syndrome
TOGETHER TO DECORATE story to tens of thousands of people.
PUMPKINS AND SPREAD
AWARENESS FOR RETT This Fall we celebrate October Awareness and to kick off our fundraising, we invite
SYNDROME! you to join us in two awesome programs; Pumpkins for Rett and “Power the
Flower” Give Back Nights and help us raise funds for research!
THE CONTEST RUNS FROM
OCTOBER 1 – OCTOBER 31ST POWERTHE FLOWER GIVE BACK NIGHTS

THE WINNER WILL BE Join GP2C in our "Power the Flower" Give
ANNOUNCED ON MONDAY, Back Night Challenge, where YOU connect
NOVEMBER 2ND AT 3PM EST. with your local restaurants to power on
girlpower2cure.org/ptf-night and educate local communities about Rett
PRIZES WILL BE ISSUED FOR: Syndrome while raising funds for research. Last year was a success with 33
•MOST UNIQUE/CREATIVE Give Back Nights, our new goal is to reach over 50 restaurants with your help!
•MOST LIKES ON FACEBOOK It's easy... we have created a user friendly, step-by-step guide to help you work
•MOST RETWEETS directly with your local restaurants of choice. Visit us for additional details.

POST YOUR PUMKINS

HERE!

mwpahitokhteos#oupnruemoutprokiFpnosBsftoprarge.tt

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R U N T O R A I S E AWA R E N E S S & F U N D S

TEAM GP2C

This OCTOBER join us and help us run miles for a cure!

Team GP2C is committed to providing an opportunity for racers to be able to raise awareness and funds for Rett
Syndrome research as well as support for girls and their families affected.

REGISTER for OUR UPCOMING Cdlaictkeotno trheegirsatecre!
FALL RACES:

November 8

Please join us on the East Coast for the Across the Bay 10K over the

Chesapeake Bay Bridge.

Crown Point, IN - REGISTER [discount codes - half marathon (use

Sophia13) and 5K (use Sophia5)

NOVEMBER12-15

Find your inner superhero and run in Disneyland, CA for the
Avengers Superheroes Half Marathon Weekend!
Disneyland Avengers Super Heroes Race Weekend- 5k,10k & infinity
gauntlet challenge (10K +1/2 combined), Anaheim, CA

REGISTER TO RACE ANYWHERE!

Team GP2C offers the opportunity for you to spread awareness and raise money for Girl Power 2 Cure by running
the race of your choice anywhere you choose! For more info visit: girlpower2cure/teamgp2c.org

Select from two tiers:

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

T IER 2 Take advantage of our incentive plan where you could earn a reimbursement of over $600 to cover your
race entry fee, travel and hotel expenses.

Join US!

Click here for all the details and to register to join Team GP2C
and start spreading awareness and raising funds today!

HIKE FOR JULIE - HIKING THE APPALACHIAN TRAIL FOR RETT
SYNDROME

Father and son duo, Henry and Bennett, are hiking the Appalachian

Trail in honor of Julie, a young girl who is battling Rett Syndrome.

They started their 2,189-mile journey in Maine on June 29, 2015

and hope to finish in November by Thanksgiving. Bennett is a gFpo2rc.morogr/ehiinkeffoorvijsuliite:
recent high school graduate who is delaying his start to college to
complete this trek with his father. They are family friends of Julie
Grace and her twin sister.

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

E D U CAT I O N I S I M P O RTA N T !

RETT UNIVERSITY

LET EVERYONE KNOW HOW SMART SHE IS! WE HAVE THE TOOLS
TO TEACH OUR RETT GIRLS. IT’S JUST A CLICK AWAY.

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

Current courses

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

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

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

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

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

HAppening this FALL! 32

• New EYE GAZE course by Judy Lariviere (Oct. 2015)
• NEW Emergent Literacy Part 2 course by Susan

Norwell!
• NEW Communication Flip Books by Rett U & Susan

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

October.

CFhelicpkBouootRkoseutratvn-aeUiwlabSCletonomormweunaitcatthieon

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

Rett
GIRL

Ha Fl lAoLwLe e n

HALLOWEEN IS A FUN TIME TO EXPLORE YOUR CREATIVE SIDE –
EVERYONE CAN “DRESS UP!”

“RETT GIRL (FALL) GUIDE” © COPYRIGHT 2015. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED 33

Some great tips on how to Make Your OWN

COSTUMES!

Submitted by Mimi Burke

Most years my daughter Sophia together along the back, and wrap/ TRICK OR
doesn't actually get to go cover in wrapping paper. Attach TREAT!
trick-or-treating, either because of double sticky Velcro along the side
illness or our unpredictable Indiana of the tray, and to the wrapped The weather can be a bit “iffy”
weather. A few years after Sophia's cardboard (about 2 inches from the in late October! Avoid the worry
diagnosis we began taking fall top.) Stick cardboard to tray. Make a of cold temperatures and rain
photos with a local photographer. large gift tag, and attach to the front (or snow!) with these “Trick or
This has made Halloween fun for of the box, and put a big bow on a Treat” Alternatives:
our whole family again! We spend headband for your girl to wear. •Many Churches have a trunk
months discussing what her or treats where kids can dress
costume should be. Calan, her E.T. up and gather treats out of car
brother, usually picks out their trunks, this can easily be moved
theme, and coordinates his costume This was a last minute, SUPER fun inside if the weather is rough.
to match with hers. costume we put together for Halloween •Host a Halloween Party for
2014. The HARDEST part of this costume neighborhood friends or school
Here are two of our favorite costume was finding an ET stuffed animal. We friends! Your Rett Girl will stay
tutorials. All of Sophia's costumes improvised.... warm inside but still have a great
attach to her wheelchair tray, time!
making it easy to work on her For this one we took handlebars off •Trick or Treating at the Mall! Many
costume but keeping her chair free an old bike. We used bungee cords stores will pass out candy and
in case she needs it for something to strap them onto her tray. We then your Rett Girl will still be able to
while not in costume. took zip-ties and attached the milk enjoy dressing up!
crate to the handlebars. We had a •Attend a local event! Check your
SANTA & PRESENT hard time finding a big ET stuffed towns event’s calendar and make
animal so I simply printed a photo of plans to attend.
Place tray on chair. Cut 3 big pieces ET’s face, and taped it to a big stuffed
of cardboard. Two, the length for the animal. I wrapped the stuffed bear Sophia & Calan -E.T.
sides (I made them stop above the with E.T. face all in a white blanket,
wheel) and 1 longer piece for the and placed it inside the basket.
front, to hang long enough to cover Sophia wore a hooded red sweatshirt,
her foot rests. Duct-Tape all three (picked up at Good Will) and Calan
her brother who drove the bike, wore
an old jean jacket.

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

YOU CAN DO IT!

DIY HALLOWEEN!

Here are a few DIY projects to make this Halloween
spooktacular!

GLITTER PUMPKIN

This Glitter Monogrammed Pumpkin is a simple project that

adds some rustic glam to your front porch decor! Try hand

over hand with your daughter for shaking the glitter on!

Instructions and supply list here unoriginalmom.com

WITCHY WREATH

Under $5.00, this wreath project will delight your trick or
treaters! Let your daughter use eye gaze to pick what to put
on the wreath. Check it out HERE!

craftysistersnc.blogspot.ca

SPLATTER PUMPKINS cMofnaoatkrenesGdtsp!uu2PsrCeeo’sst#toPtpsouuumbtmhpmepkiitkGnisaPn2fspoCu4rmrFRpeekBttittnpg

Here’s another pumpkin craft you can do with your Rett Girl

Jackson Pollock style! Use hand over hand to create

splatters of paint on the pumpkin and have her use eye-gaze

to pick her favorite colors! babbledabbledo.com

HAlloween Lanterns

Rett Girls love lights! (We recommend the battery operated
candles for safety) These adorable Halloween lanterns are
really easy and fun to make! Find the instructions here

diyonthecheap.com

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Lets not get Sugared Up

CANDY

Alternatives to Passing out Candy this Halloween

Many of our Rett Girls have feeding restrictions OUR
or are tube fed so it may be fun to pick out an SUGGESTIONS
alternative to passing out candy! We are thinking
outside the candy dish and replacing it with some for
really great options like stickers, toys, rubber
duckies, mini games or even temporary tattoos THE NON
for children you know well. Amazon has a ton of CANDY
fun toy assortments (glow in the dark fangs, treat
anyone?) Oriental Trading Company has a wide
selection. Remember that Play Doh is NOT gluten 1. mini nail polish
free. Some treats are more expensive than candy, 2. potato chips
but it depends on how you Halloween treats look 3. fake jewelery
at it. When you average in, the bag of candy you 4. lipstick or chap-stick
bought on sale in September (and ate), the one in 5. popcorn
mid-October (trust me, that one will disappear as 6. bubbles
well) and the one you have to run out at the last 7. glow sticks
minute and buy, it evens out in the end! 8. Rett Girl tattoos

NOTE: FARE (Food, Allergy & Education.com) has
a program called the “Teal Pumpkin Project”, an
initiative for people with non-food treats to paint
a pumpkin teal and put it on the doorstep, so
children and parents know that safe options are
available.

Dowhnalonadd-oouutr HHEARl EoW! een aCwaens’otmgeoliwstitohfougtlcuatnednyf?rCeeheccaknoudtyo!ur MCMPAhaearnopsrcdzhpoimMpelaraaomtnlerleionL.w.it.c..Po.F.a.rl.uitcteiesglutenfreeonashoestring.comWCahnGetclukttoeonumt-Fatkhreeeesyeocuahronwdoyw-t?no’s!•

•
•
•
•

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

HALLOWEEN RECIPES

GLUTEN-FREE HALLOWEEN

This mix is perfect to make with your rett girl!

Get your Rett Girl involved in Halloween snacking by allowing her to help “make” this Fall Chex Mix. She
can “eye gaze” to the ingredients she wants included in the mix! Use the suggested ingredients or stir in
what she likes.

FALL C HE X MIX - F ROM bu d getsav v ydiva .com

Ingredients

• 2 cups Honey Nut Chex cereal
• 2 cups Rice Chex cereal
• 3/4 cup pecans
• 1/2 cup of dried cranberries
• 1/2 cup of golden raisins
• 1/4 cup salted butter, melted
• 2 tsp. vanilla extract
• 1/4 cup of brown sugar
• Sprinkles (Fall colors)

Serving Size PREP TIME TOTAL TIME

4 05 10

MIN MIN

DIRECTIONS

In a microwaveable bowl add honey nut chex, rice chex, anMdupseecuamns. In a bowl whisk melted butter and vanilla

and pour over the chex mix – softly mix so there is an even coasting. Sprinkle brown sugar over mix.
Microwave mix for 3 minutes. Stir every minute. Add golden raisins, dried cranberries, and sprinkles.

Stir lightly
Enjoy!

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Homemade caramel corn is buttery, crunchy, sweet, and best of all it's naturally gluten-free! Plus, when
you make your own, it's warm and fresh, a quality that's hard to find in a can or bag. If you would like, you
can use organic popcorn, butter, sugar and agave syrup for an extra special treat.

CARAMEL CORN - from glutenfreecooking.com

Ingredients

• 5 quarts fresh popcorn
• 1/2 cup agave syrup OR light

corn syrup
• 2 cups brown sugar
• 2 sticks (1 cup) butter
• 1/4 teaspoon cream of tartar
• 1 teaspoon vanilla extract
• 1 teaspoon baking soda

Serving Size PREP TIME TOTAL TIME

4 15 75

MIN MIN

DIRECTIONS

Preheat oven to 250°

Pop 5 quarts of popcorn and place in a large roasting pan.
Put butter, sugar, agave syrup OR corn syrup and cream of tartar in a large pan. Over medium heat, melt the
mixture, stirring to prevent burning.
Bring to a boil and cook for 5 minutes, stirring occasionally. Remove from heat.
Add vanilla and baking soda and stir to mix.
Carefully pour this mixture over the popcorn. Gently stir to thoroughly coat the popcorn.
Bake for 1 hour, stirring every 15 minutes.
Remove and pour on a large baking sheet to cool. Use a spatula to separate the warm clumps.
If you want to freeze your treat, first let the caramel corn cool completely. Seal tightly in freezer bags, and bring
to room temperature to serve.

Reminder: Always make sure your work surfaces, utensils, pans and tools are free of gluten. Always read product
labels. Manufacturers can change product formulations without notice. When in doubt, do not buy or use a
product before contacting the manufacturer for verification that the product is free of gluten.

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

Me r in g u e Ghosts - f rom ABOUT.COM

Ingredients

• 2 egg whites, room temp
• 1/8 tsp cream of tartar
• 3/4 cup powdered sugar
• 1/2 tsp flavored extract, like

vanilla or almond
• 8 oz semi-sweet chocolate
• Toasted nuts, coconut, or

sprinkles (optional)

Serving Size PREP TIME TOTAL TIME

24 40 120

MIN MIN

DIRECTIONS

Preheat the oven to 200 degrees.

Place the room temperature egg whites in the clean bowl oMfuassetaunmd mixer fitted with a whisk attachment.

(Alternately, you can use a large bowl and a hand mixer with whisk attachments.)

Turn the mixer to medium-high speed, beat until the egg whites are foamy.
Add the cream of tartar, and continue beating on medium-high until the whites have turned an opaque white and
hold soft peaks.

Start adding the powdered sugar a few spoonfuls at a time with the mixer running. Once all of the sugar has been
added, add any extracts you are using and turn the mixer to high speed. Continue to beat the egg whites until
they are very thick, glossy, and a shiny white color. When you stop the mixer and lift the whisk out of the whites,
the whites should have a very stiff peak -7-12 minutes in a stand mixer.

Cover two baking sheets with parchment paper. Scoop your meringue mixture into a piping bag fitted with a ½
inch round tip, or if you don’t have this, into a large Ziploc bag with a ½ inch hole cut in the corner.
Pipe your meringue into ghost shapes. Pipe 12 ghosts onto each baking sheet, for a total of about 2 dozen
meringue ghosts.

Bake the meringues in the preheated oven for an hour. After an hour, open the oven door and continue to cook
for 30 minutes, then turn the oven off, close the door, and allow the meringues to sit until completely cool, about
1 hour.

Once the meringues are crisp and room temperature, melt the chocolate in a microwave-safe bowl, stirring after
every 30 seconds to prevent overheating.

Dip the bottoms of the ghosts in the melted chocolate, immediately press the bottom of the ghost into the bowl
of toppings so they adhere to the wet chocolate. Dip a toothpick in the remaining melted chocolate and give
each ghost two dots for eyes and, if you desire, a mouth or other features.

Refrigerate the ghosts to set the chocolate, about 5-10 minutes. Do not refrigerate them any longer than

absolutely necessary, as they will absorb moisture from the refrigerator and lose their crispness.

Store Meringue Ghosts in an airtight container at room temperature. MUSEUM

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