1. wabisabiFEB 2012 celebrating differences within
the special needs community
LAUREN
POTTERon fame, Down syndrom and LA
THERE’S NO
HOME
PLACE LIKE
Secrets to coping
with hospital living
5
living
spaces you
can make
more
accessible
Biking for a Purpose Baked
with Love
A community-
run bakery
begins to
thrive
Cody Poplin takes
America by storm
2. Be Mine
by Chloe, Age 6
Under the Sea by Ava, Age 5
Sunny Sunflower by Sha’taia, Age 6
Summer by Chase, Age 4
Yellow Bunny by Rebeka, Age 5
Crazy Crab by Riley,Age 4
wabi
art
This month, readers were
asked to send their best
Valentine’’s Day art to wabi
sabi. We received a lot of
love, but February’s feature
goes to Chloe from Iowa. Get
your crayons and markers
back out and send your best
St. Patrick’s Day artwork into
wabi sabi to be featured in
next month’’s issue!
FEBRUARY FEATURE:
10 wabisabi FEB2012 11
Want to submit
art to wabi sabi?
Email a scan or picture
of your art to:
wabisabimag
@gmail.com
3. 12 wabisabi FEB2012 13
February Calendar
Polar Plunge
3
Participants brave the icy water at
the 2011 Polar Plunge at Miller Park,
Bloomington, Illinois
PHOTOBYDOUGPIEPER
By Kelcie Landon
medford polar plunge
The Polar Plunge is a unique
opportunity to support
Special Olympics Oregon
athletes by jumping, walking,
or slowly crawling into the
frigid and icy Oregon waters.
The event is open to the
public, and all spectators are
welcome, free of charge.
Jackson Aquatic Center
Medford, Oregon
4 Polar PLunge winter
festival
The Festival is Special Olym-
pics Virgina’s largest fund-
raiser, attracting more than
10,000 people to an other-
wise deserted beachfront in
February. Crowd favorites
include a costume contest,
musical entertainment, a
sand sculpture and vendor
displays and giveaways.
Virginia Beach, Virginia
5 Lewes polar plunge
On the first Sunday in Feb-
ruary, thousands freeze
their fur off by jumping into
the frigid Atlantic Ocean to
support athletes in Special
Olympics Delaware.
Rehoboth Beach, Delaware
11 Laurel highlands
polar plunge
Join Special Olympics
Pennsylvania at the Polar
Plunge where individuals
from all walks of life have
committed to plunge their
hearts out for thousands of
Special Olympics athletes.
Quemahonig Reservoir
Boswell, Pennsylvania
17 Magnolia polar
plunge
One of many Polar Plunges in
Arkansas this year.
Magnolia, Arkansas
18 san diego polar
plunge
Those brave enough will take
the plunge into the Pacific to
raise money, win rewards and
have a good time.
Oceanside Pier
San Diego, California
25 Geneva polar plunge
Take this icy challenge to
support the 23,000 children
and adults with intellectual
and physical disabilities who
compete in Speical Olym-
pics Ohio. The plunge will
feature a costume contest
and post-plunge celebration.
Geneva, Ohio.
26 Eau Claire PolaR
Plunge
Support Special Olympics
Wisconsin by Freezin’ for a
Reason at Half Moon Beach.
Eau Claire, Wisconsin
The Polar Plunge is an
annual fundraiser to benefit
the Special Olympics.
Every winter, thousands of
individuals plunge into the
icy water at beaches and
pools across the country to
raise money and awareness
for these wonderful games.
Check out this month’’’’’’s
special edition Polar Plunge
calendar for an event
located near you!
FOR PEOPLEFOR PEOPLE
WITH DISABILITIESWITH DISABILITIES
WEWE
RAISERAISE
LEARN MORE AT UCP.ORGLEARN MORE AT UCP.ORG
LIVING STANDARDSLIVING STANDARDS
OF MILLIONSOF MILLIONS
4. 14 wabisabi
Askwabi
Dear CP Parent,
I understand that this is a challenging time for both your
daughter and your family. While Cerebral Palsy may have no
known cure, treatment such as occupational therapy will give
your daughter a good chance at participating in normal daily
activities. Research family support groups in your community
and connect with other parents. Do not hesitate to ask ques-
tions of your doctor or therapists. As long as you are there to
help your daughter, you will be supporting her.
Sincerely, Wabi
Have a
question for
“Ask Wabi”?
Send an email to:
wabisabimag
@gmail.com
Q: I’’’’’’’’’’’m 9 years old. My friends are coming over to my
house for my birthday party this year. It’s Kung Fu Pan-
da-themed – I love that movie! But my older brother,
who’ is 12, has m’’’’ental retardation. My friends have nev-
er met him. I love him, and I’’’’’’’’’’’’m not embarrassed by
him, but I don’t know what to tell my friends. Will they
think he’’’’’’’’’’’’s weird? How do I introduce him?
Sincerely, Little Sister
Hi Little Sister,
Happy birthday! A birthday is a fun day for you and your brother. Al-
though it may be difficult for him to show it, he is happy to be around
on your birthday! The best way to deal with your friends is to prepare
them for your brother by telling them how special he is! A good example
may be, “This is my brother. He has autism and sometimes he makes
strange noises, but he knows all the words to Kung Fu Panda!” I’m sure
your brother has things that make him special, and by mentioning
these, you are making your friends see your brother for more than any
“weird” habits he may have. Have a great party!
Sincerely, Wabi
My 1-year-old child was recently diagnosed with Cerebral
Palsy. My wife and I were caught slightly off guard by the
diagnosis. What would you recommend we do to best
support our baby daughter?
Sincerely, CP Parent
Q:
Write in! While wabi sabi may
not publish all of your ques-
tions, we would love to read
and answer as many as we
can. Please try to limit your
questions to 150 words.
FOR PEOPLEFOR PEOPLE
WITH DISABILITIESWITH DISABILITIES
WE AREWE ARE
ENACTINGENACTING
REAL CHANGEREAL CHANGE
LEARN MORE AT UCP.ORGLEARN MORE AT UCP.ORG
TODAYTODAY
5. 16 wabisabi FEB2012 17
Living Room
1
1
2
2
2
3
Bathroom
The bathroom door can be hinged to
swing out as well as in, so that physically
disabled individuals are able to exit
without trouble.
Railings can be placed near the toilet, in
the shower or in the bathtub to provide
easier access to those in a wheelchair.
1
2
Kitchen
BEDROOM
A trolley to transfer food from the oven to
the table can prevent epileptic individuals
from suffering burn injuries.
Clap-on lights are convenient for people
with mobility challenges.
A safety cradle for a teakettle allows
individuals to tip the kettle to pour water
instead of lifting it themselves.
Most walk-in closet doors are about 24
inches wide. However, for a person in a
wheelchair this can pose a problem.The
door can be widened and shelves and
rods lowered.
The smoke detector can be installed
with a flashing strobe light, which will
alert members of the family who are
hearing impaired.
1
1
1
2
2
2
3
Entryways
Widen door frames to allow wheelchair
users more mobility within the home.
Replace short stairs with ramps to
provide individuals in wheelchairs with
more mobility.
Door signalers emit flashing lights to let
hearing impaired individuals know when
someone is at the door.
1
2
3
If you or your family member is prone to
seizures, consider carpeting the floor and
covering sharp table corners
with Styrofoam.
Some visually impaired children have a
color preference. Use that color to call
attention to their belongings such as their
cup, toothbrush or chair.
1
2
By Isabella Cochrane
Check out the iPad edition to view a 3-D
model of the house featured here!
Accessible Living
Home: A haven tucked away from the stressful workday and the crowded
classroom. It’’’’’’’s a place you find comfort, a place you and your family share.
Personalizing this space is essential for you to be able to enjoy it - especially
if your loved one has special needs. Here are several ways to make
different living spaces more enjoyable for everyone.
1
3
1
2
6. 18 wabisabi FEB2012 19
The Discovery School
Serves teenage boys who are
experiencing emotional, behavioral
and learning problems using
group therapy and the natural
environment to promote a student’s
overall positive development.
PO Box 1160
Dillwyn, VA 23936
434.983.5616
Triad Academy
Helps bright children with
language-based learning differ-
ences succeed in school and life.
905 Friedberg Church Road
Winston-Salem, NC 27127
336.775.4900
Dore Academy
A community of innovative teachers
that has created an educational
experience for children with
learning disabilities and attention
deficit disorder.
1727 Providence Road
Charlotte, NC 28207
704.365.5490
Home Care Management
Corporation
Provides the services
necessary for people with de-
velopmental disabilities to be as
comfortable and independent as
possible in their own homes.
5505 Business Drive Suite A
Wilmington, NC 28405
910.796.6741
The Florida Special
Arts Center
Seeks the promotion of the
performing and visual arts
as well as the nurturing
of creative expression for
persons with developmental
disabilities.
10258 NW 46th St.
Sunrise, FL 33351
954.721.1020
Dolphin Research Center:
Special Needs Program
Helps guests with special needs
participate in Dolphin Research
Center’s interactive programs.
58901 Overseas Highway
Grassy Key, FL 33050
specialneeds@dolphins.org
305.289.1121
Babies Can’t Wait
A statewide service delivery
system that provides families
with early interventions to help
determine and meet the scope of
services needed.
Georgia
404.657.4855
Easter Seals of
Southern Georgia
Offers a variety of programs and
services that enable individuals to
lead lives of equality, dignity
and independence.
1906 Palmyra Road
Albany, GA 31701
229.439.7061
Meyer Center for
Special Children
Provides quality early childhood
and therapy services for children
with disabilities.
1132 Rutherford Road
Greenville, SC 29609
864.250.0005
Family Resource Center
for Disabilities and
Special Needs
Promotes opportunities for learn-
ing, inclusion and empowerment
for individuals with disabilities
and special needs, their families
and their communities through
such means as education, advo-
cacy and outreach.
1575 Savannah Highway Suite 6
Charleston, SC 29407
843.266.1318
What’s In Your Area?
By Kelcie Landon
southeast
The Discovery
school
Dillwyn, VA
Home care
management
corporation
Wilmington, NC
Dore academy
Charlotte, NC
TRIAD ACAdemy
Winston-Salem, NC
The Florida special
arts center
Sunrise, FL
Family resource
center for
disabilities and
special needs
Charleston, SC
Dolphin research center:
Special Needs Program
Grassy Key, FL
Babies can’t wait
Statewide in Georgia
Meyer resource center
for special children
Greenville, SC
Easter seals of
southern georgia
Albany, GA
Each month, wabi sabi
focuses on a region of the
U.S. and the services it
provides our families. The
March issue will feature
the Pacific Coast.
wabi tip:
There are plenty of re-
sources in your area, so
don’t be afraid to utilize
them. Do research, or
ask around!
7. 2 wabisabi FEB2011 3
Strength in Every Pour™
25 grams of soy protein a day, as part of a
diet low in saturated fat and cholesterol, may
reduce the risk of heart disease. A serving of
Silk Vanilla supplies 6.25 grams of soy protein.
Also avalable in Chocolate and Original.
Pour on the power to
help support your heart.
Silk is made from one of Nature’s
Perfect Proteins to fortify your body,
and delivers a smooth vanilla taste
that keeps you deliciously satisfied.
8. 20 wabisabi FEB2012 21
Readers may know Rachel
Simon for her bestselling memoir,
Riding the Bus With My Sister,
but her latest novel, The Story of
Beautiful Girl, may soon become
her claim to fame.
The Story of Beautiful Girl follows
the lives of three people who share
a night together in 1968.Lynnie,the
story’s “Beautiful Girl,” and Homan
just escaped from the School for
the Incurable and Feebleminded
and found momentary refuge at
the home of Martha, a widow and
retired schoolteacher. Lynnie is a
young white woman born with
a developmental disability; she
speaks only a few words. Homan
is an African-American man who’s
deaf.They’re in love.They recently
delivered Lynnie’s child, but Homan
is not the father – somebody else
from the school is.
Soon after Martha welcomes
them into her home, the authorities
find the couple. Lynnie is captured,
but Homan is able to get away.The
authorities, unaware there is a baby
in the house,take Lynnie back to the
institution,leaving Martha to care for
Lynnie’s child. For the next 40 years,
The Story of Beautiful Girl traces
their attempts to be reuinited.
Some authors would use Lynnie
and Homan’s disabilities to garner
sympathy, but Simon uses them to
empower her characters.It’s through
adversity that Lynnie, Homan and
Martha gain strength and develop a
special bond.
Simon’s novel
flows from Martha, Lynnie and
Homan’s points of view, letting the
reader know that though miles
and years separate them, they are
constantly in one another’s thoughts.
This technique also gives a voice
to these characters, who, before the
night they met, were voiceless.
Simon cleverly plays on
perception, describing characters
by a sole trait, such as “a widow”
or “the woman,” before revealing
their names. This allows readers
to recognize the perceptions they
make of others and see they must
look beyond labels to find all that is
beneath the surface.
You don’t have to be a part of
the special needs community to
enjoy this beautiful and intriguing
novel. The Story of Beautiful Girl
reinforces an important lesson we
should all follow: Don’t judge a
book by its cover.
Inspiring people don’t always
make for the most inspiring mov-
ies. Luckily, this is not the case for
Temple Grandin.
In this biopic, Claire Danes stars
as the titular characterTemple Gran-
din — an American doctor of ani-
mal science, professor at Colorado
State University, best-selling author
and noted authority when it comes
to animal behavior questions. The
catch? Grandin suffers from high-
functioning autism.
If she were born today, Grandin
would be diagnosed with autism;
however, when she was a child, her
condition was considered a form of
schizophrenia. Life is not only rough
for Grandin, but it’s also emotional
for her mother, Eustacia, played by
Julia Ormond. Eustacia, like other
mothers of the 1950s, is blamed for
her child’s disabilities. Mothers of
children with disorders were called
“refrigerator mothers,” because soci-
ety viewed them as cold and aloof
toward their children. Eustacia refus-
es to accept that stigma and does ev-
Temple Grandin
wabi This month, we’ve chosen our most in-
spiring books and movies. Curl up with
your loved one or family and enjoy!
THE TOP
MOVIES
5Flicks that
inspire you to
get up and face
adversity head-
on. Take part
in the struggle
and triumph of
these lovable
characters.
my left
foot
Directed by: Jim
Sheridan
Starring: Daniel
Day-Lewis, Brenda
Fricker, Kirsten
Sheridan
Released 1989
Rating: R
front of
the class
Directed by: Peter
Werner
Starring: James
Wolk, Treat Wil-
liams and Patricia
Heaton
Released 2008
Rating: N/A
(Made-for-TV
Movie)
adam
Directed by: Max
Mayer
Starring: Hugh
Dancy, Rose Byrne,
Peter Gallagher
Released 2009
Rating: PG-13
The king’s
speech
Directed by: Tom
Hooper
Starring: Colin
Firth, Geoffrey
Rush, Helena Bon-
ham Carter, Guy
Pearce
Released: 2010
Rating: R
Rory O’Shea
Was Here
Directed by:
Damien O’Donnell
Starring: James
McAvoy, Romola
Garai and Steven
Robertson
Released 2004
Rating: R
erything she can to help her daugh-
ter adapt.
The film begins with Grandin vis-
iting her aunt’s farm. It is here that
she falls in love with two things: ani-
mals, because they think “like her,”
and a machine that “hugs cows,”
calming them down.
This concept reoccurs throughout
Grandin’s life, calming her during
panic attacks in her childhood, col-
lege years and beyond. She designs a
similar “squeeze machine,” made for
people who suffer from a sensory in-
tegration dysfunction.
Her many inventions and theo-
rems highlight Grandin’s revolution
of the cattle and slaughter industries.
The film culminates in an emotional
and inspiring speech from Grandin
at an autism convention.
Claire Danes dazzles the audience
and raises the standard of Hollywood
actors who play characters with spe-
cial needs. She breathes life into her
character and delivers not only a be-
lievable portrayal, but also an inspir-
ing one.The audience feels the emo-
tional struggle Grandin faces and
joins in her successes and triumph
over adversity.
If you are in need of a rousing film
that will leave you in good spirits,
check out Temple Grandin.
BOOKS
MOVIES
Reviews
Reviewed by Rachel Bennett
Reviewed by Carson Blackwelder
The Story of Beautiful Girl
By Rachel Simon
5
THETOP
BOOKS
house rules
By: Jodi Picoult
Released: 2010
THE Memory
By: Kim Edwards
Released: 2006
up high in the
trees
By: Kiara Brinkman
Released: 2008
the story of
By: David Wroblewski
Released: 2009
handle with
care
By: Jodi Picoult
Released: 2009
These books had us
laughing, crying and
ultimately celebrating
these strong
and charismatic
characters, so we
wanted to share them
with you.
NYT
Bestseller
NYT
Bestseller
Keeper’s
Daughter
edgar sawtelle
9. 24 wabisabi FEB2011 25
All About Allergies
GLUTEN-FREE
Check out the iPad edition for
the recipie for this gluten-free
Valentine’s day treat!
Here is some advice you will learn from this program:
The NAMI Family-to-Family Education Program is a program taught by families who have been there before.
We are a free 12-week course that offers advice and support as you move forward with the daunting and
rewarding task of helping your loved one treat their mental illness.
Please contact us at namieducation@nami.org for more information about classes in your area.
We want you to be the greatest caregiver you
can be for your loved one with mental illness.
Friends and family can be powerful allies in providing help and support. With our
course, you will meet others in the community who are facing the same issues as you.
You cannot effectively care for others if you forget how to care for yourself. We will
teach you how to focus on coping with stress, worry, and emotional overload.
The diagnosis of mental illness can sometimes be difficult and confusing, but is a
vital step towards treatment. Learn how to ask the right questions and get the facts
on what your loved one is going through.
PhotobyChristinaEllis
This month wabi
sabi explores an
increasingly common
food allergy that
trims regular wheat
products out of a
person’s diet.
By Chelsea Bailey
10. 24 wabisabi FEB2011 25
What is it? Celiac disease is
an autoimmune disorder that causes
the body to attack itself if gluten is
ingested.This causes an inability to
absorb the nutrients needed to stay
healthy.There is no cure, but the
disorder can be managed by changing
a diet.
what are the symptoms
in children? When children are
diagnosed really young, they look like
the malnourished children you see in
poor countries – they are really skinny
and their stomachs are very bloated. It
shows up like that in young children
because their intestines are really small.
what are the symptoms
in adults? Adults can have a range
of symptoms from gastrointestinal
issues, to neurological problems,
reproductive difficulties and
osteoporosis. In adults, 50 percent of
all the newly diagnosed do not have
classic symptoms because they can be
so easily be overlooked.
UNDERSTANDING
CELIAC DISEASE
We spoke to registered dietitian, health and
wellness coach, and mom Debbie Jongkind
about living with celiac disease. Here’s what she
had to say about adapting to gluten-free life:
Who gets it? In the healthy
population, the risk of having celiac
disease ranges from 1 in every 100
people to 1 in 133. If you are a first-
degree relative, your chances of getting
the disease increases to 1 in 18.
What to look out for:
Gluten is in a lot of products you
wouldn’t necessarily associate it with,
like soy sauce and marinade. It can be
in lunchmeat and even “play” dough.
how should i change? It’s
really expensive to be on an entirely
gluten-free diet – just a loaf of bread
can cost up to $8. We did not make
our whole family go gluten free.
Instead, to prevent cross-contamination,
we have separate toasters and jars for
food.
on a brighter note: I try
to empower all the folks I work with
because you have to be able to live
your life. Resources for celiac patients
have exploded in the last five years.
Q
A&
ham wheels
Directions: Spread cream cheese
on tortilla and top with layers of
sliced ham. Roll the tortilla into a
log and secure with toothpick if
needed. Cut into half inch pieces.
To ensure wheels stay together,
chill overnight or secure with
toothpicks.
Cook Time:10minutes
Makes: 4 per tortilla
What’s needed:
• Thinly sliced ham
• Gluten-free tortillas
• Cream cheese (sun-
dried tomato or
scallion)
All about allergies: GLUTEN-FREE
What’s Needed:
• 4 egg whites
• 3 egg yolks
• 1/8 teaspoon cream of
tartar
• 1 tsp Splenda sugar
• 1 pinch salt
• 2 tbsp dry, grated
parmesan cheese
• 1 tsp garlic powder
• 4 oz fat-free cream cheese
Directions: Beat the egg
whites andcreamoftartarwith
mixer until stiff. In a seperate
bowl, beat egg yolks, Splenda,
salt, garlic powder and cream
cheese until smooth. Gently
fold the egg yolk mixture into
the egg whites (be careful not
to deflate the whites). Spray
cooking spray in medium-
sized pizza pan. Spread the
mixture into pan. Sprinkle with
parmesan cheese. Bake at
300F for 20 minutes. Remove
from oven.
Add desired toppings and bake
for an additional 7-10 minutes
or until done.
flourless pizza
crust substitute
Cook Time: 20 minutes
Makes: 1 pizza crust
Lunches your kids won’t want to trade
If you’re living with a child who has celiac disease, you know how difficult
packing a lunch can be. Here are a few ideas to shake things up and make
sure your child stays healthy and happy at lunchtime.
All about allergies: GLUTEN-FREE
5
2
3
4
1
Sandwich
Celiac disease
does not have
to rule out this
lunchtime favorite.
Check your local
grocery or deli for
gluten-free lunch
meat, cheese and
specialty breads.
We suggest:
Boar’s Head®
brand
Hormel®
Brand
Carrots &
Hummus
Instead of packing
ranch dressing,
enjoy your favorite
veggies dipped in
hummus, cheese
dip or spinach dip,
guacamole or even
some salsas.
We suggest:
Athenos®
brand
Marzetti®
brand
mixed fruit
Fresh fruits are
all naturally
gluten-free so
eat up! When
eating canned or
packaged fruit
products, be sure
to check the label
for the ingredients.
We suggest:
Sunmaid Raisins®
Fruit by the Foot®
apple Juice
Some fruit juices
contain gluten, so
be sure to check
the label before
taking that first
sip. Other drinks
like milk, tea and
water are naturally
gluten-free.
We suggest:
Country Time®
juice
Snapple®
drinks
candy bar
Speciality allergy-
free chocolate
bars are available
at most grocery
stores now, but
many common
candy bars are
naturally gluten-
free as well.
We suggest:
Butterfinger®
bars
Snickers®
bars
21 3 4 5
11. 26 wabisabi FEB2012 27
How Adults with Special Needs are
LBy Rachel Bennett
Looking at Kerry Hagner’s
Facebook profile, one can tell she
is not the average 27-year-old. She
has attended the Emmys; is
friends with Disney stars
Joe Jonas, Dylan Sprouse
and Cole Sprouse; and
is a gold medalist in
cycling. But there’s
another, perhaps more
obvious, reason why
she’s not like most
27-year-olds: She has
Down syndrome.
But Hagner, a
resident of Chapel
Hill, North
Carolina, is
determined
to show she
can do what
some think
she can’t.
Hagner is an athlete in Special
Olympics, and competed as a member
of the USA cycling team in the 2007
Special Olympics World Summer
Games in Shanghai, China.
“I like to go fast downhill and
have the wind blow in
my hair,” Hagner says of
cycling, her favorite
sport. In China, she
and her teammates
each won a gold and
silver medal.
Cycling is not
Hagner’s only sport. She
also trains year-round for
basketball, skiing, swimming,
horseback riding and soccer.
“The only sport I have not
done in Special Olympics is golf,
and I plan on doing that next
year,” Hagner says.
Hagner is only one of about 49.7
million Americans with a disability.
Whereas Hagner has accomplished
much as she’s become an adult, many
others with disabilities are not as
successful during their transition from
childhood to adulthood. Opportunities
for adults with disabilities, while
growing, are still not widely available.
In the 1940s and 1950s, adults with
disabilities were largely pitied, and it
was rare for children with disabilities
to ever meet successful adults with
disabilities. Parents of children with
disabilities came together to advocate
for more services and education for
their children.The results of this
advocacy spilled over into helping
those children later in life as well.
Most notable of these organizations is
The Arc, which is the largest national
community-based organization that
helps people with disabilities and
their families.With chapters across
the country,The Arc provides those
with disabilities help with finding
employment, job training, locating and
keeping a home and getting access to
transportation, among other services.
As a result of advocacy, Congress
enacted such legislation as the
Architectural Barriers Act of 1968,
the Education of All Handicapped
Children Act of 1975 and the
Americans with Disabilities Act of
1990.These acts provide more access
to employment, technology, education
and transportation.
In 1963, Eunice Kennedy Shriver
began a summer day camp for children
with intellectual disabilities.The
concept of Special Olympics originated
from this camp, leading Shriver to
organize the First International Special
Olympics Summer Games in 1968.
At this event, 1,000 people with
intellectual disabilities competed in
swimming and track and field.The
U.S. Olympic Committee officially
approved of Special Olympics in 1971.
In North Carolina, more than
38,000 people participate in Special
Olympics, and more than 3.5 million
people participate worldwide. For
many contestants, Special Olympics
is greater than a hobby: It’s a social
life, a career and a source of pride,
responsibility and independence.
Finding a Voice
Empowering
a New
Generation
12. 28 wabisabi FEB2012 29
Breeding Self-Confidence
“Winning the medals, going into
work – it really breeds huge self-
confidence,” says Megan O’Donnell,
the vice president of communications
for Special Olympics North Carolina.
“They take that confidence and
independence they gain through
Special Olympics, and they’re able to
take it out into real life and be able
to hold down a job and have that
responsibility.”
O’Donnell says many athletes
consider Special Olympics to be a
career, even if they have jobs outside
of it, because they compete in multiple
sports that keep them busy throughout
the year. Many athletes even formally
retire when they decide to stop playing,
O’Donnell says.
Family members, whom O’Donnell
calls the backbone of Special Olympics,
also participate in the games as
volunteers, coaches, officials or Special
Olympics coordinators for various
counties. Even though families are
heavily involved, Special Olympics
provides athletes a chance to become
less reliant on their families and gain a
sense of community.
“For many athletes, Special
Olympics provides a means for them
to gain just leaps and bounds of
self-confidence, and their self-esteem
improves so much,” O’Donnell says.
“But also for many, it’s the first time
parents sort of let go of the reins a
little bit and let them really find their
independence.”
Special Olympics provides several
contestants the opportunity to travel
away from their hometowns for the
first time without their parents – a
feat many parents and athletes do not
think they can handle until they do it,
O’Donnell says.
Finding a Community
Transition, the process of aging out
of high school and having to adjust to
an adult world, is scary for adults and
their families, says Joshua Strasburg,
the supervisor of adult services at
the Orange County, North Carolina,
branch of The Arc.“There’s a lot of
uncertainty because you’re going from
a highly structured support network
to not really knowing what’s next,”
Strasburg says.
A large part of making transition
successful depends on adults finding
a social community. Special Olympics
offers this community by allowing
athletes to meet people from different
places, O’Donnell says. Kerry Hagner
says she has many friends inside and
outside of Special Olympics, and she
tries to be social with everyone. She
also has a boyfriend, who is on her
cycling team.
“For many parents, they tell us,‘We
never thought that my son would play
softball ever, that he’d never be on a
sports team, and now, for me to see
him on a sports team…’” O’Donnell
says.“It overwhelms them:They’re just
so pleased and happy and proud.”
Special Olympics is one of a few
places in North Carolina where adults
with disabilities can find a community.
Strasburg, who plans adult nights
and Friday activities for adults with
disabilities, says he thinks the Orange
County, North Carolina, community
could reach out more to create a social
structure for these adults.“It can be
difficult enough for someone without
a developmental disability to be social
and see what’s out there and to really
go out and get out of their comfort
zone,” Strasburg says.
Yasmine White, the founder and
CEO ofVoices Together, a regional
organization, agrees, saying there are
not enough opportunities for adults
with disabilities after they leave school.
Voices Together uses innovative
approaches to help those with
disabilities develop social skills. Started
in 2006,Voices Together hosts weekly
hour-long sessions, during which music
therapy helps participants communicate
with one another.
“It’s really fun, and at the same time,
we’re using really targeted educational
and developmental goals,”White says.
White saysVoices Together’s
approach is to value the individual
and give participants a greater sense
of independence and autonomy. She
says she has seen great results, such as
having people share their emotions for
the first time.This can range from a
participant telling others their thoughts,
needs and feelings to describing what
skills they have and where they’d like
to work.
However, these
emotions can be
more complicated.
White says adults
with disabilities need
to be able to say how
they’re feeling when
difficult situations
arise in their lives.
“If you’re in a job,
and you’re frustrated,
or you’re tired, or
something’s going
on, and you can’t
express what that
is, it’s not going to
benefit [adults with
disabilities],”White
says.“It’s not going
to help them sustain
their vocational
opportunity.”
FOstering
independence
AND INCLUSION
Finding one’s
voice is also crucial
outside of the
workplace for adults with disabilities.
“I guess another thread is fostering
independence: empowering them to
have a voice, have charge over their
own lives,” Strasburg says of helping
people through transition.
Strasburg works with adults
with disabilities in what he calls a
partnership: He helps them to realize
what their choices are for housing, jobs
and day-to-day life and shows them
they have the power to make these
choices for themselves.
Like Special Olympics,Voices
Together aims to provide a social and
interactive environment for adults with
disabilities.According to Strasburg, a
large misconception about adults with
disabilities is that they don’t want to
take part in social situations.
“It’s like anyone else in our
community:There should never be
‘others,’”White says.“And the minute
you get to know someone that seems
Kerry Hagner poses with her medal after the 2010 Special Olym-
pics Fall Tournament in North Carolina. Hagner competes in six
Special Olympic sports, her favorite being cycling.
Eunice Kennedy Shriver, organizer of the First International Special Olympics Summer Games in 1968, joyfully celebrates a gold-medal
winning athlete at the 2005 Special Olympics World Games.
“For many athletes,
Special Olympics provides
a means for them to gain
just leaps and bounds
of self-confidence, and
their self-esteem
improves so much.”
PHOTOSCOURTESYOFSPECIALOLYMPICS(LEFT),SPECIALOLYMPICSNORTHCAROLINA(RIGHT)
different than you, you see all the
things that are more like you than not
like you.The moment that happens,
you get inclusion.”
Employment Opportunities
One Chapel Hill-based organization
that provides a social environment and
interaction with the community, as well
as careers for adults with disabilities, is
ExtraordinaryVentures. Extraordinary
Ventures is a nonprofit that employs
adults with disabilities.A group of
parents who were worried about what
their children, who had developmental
disabilities, would do after high school
started ExtraordinaryVentures in 2007.
In addition to limited social
opportunities, jobs are hard to come by
for adults with disabilities.According
to the U.S. Bureau of Labor Statistics,
in December 2009, the unemployment
rate for those 16 years old and older
without a disability was 9.5 percent;
13. 30 wabisabi FEB2012 31
After working hours, Extraordinary
Ventures turns from a workplace into
a social setting, hosting holiday parties,
trips to the local lake and Friday Night
Live!, a Friday night party with video
games, karaoke and dancing.Almost
all ExtraordinaryVentures employees
come to the events, Hatchell says,
creating that social community that is
so often lacking in the lives of adults
with disabilities.
Overcoming Obstacles
Of course, Hagner is an exception
among most adults with disabilities,
and she has found a social community
in Special Olympics.Aside from being
a Special Olympics athlete, she is an
advanced global messenger for Special
Olympics. Calling this one of her
biggest successes, Hagner is trained to
be a spokeswoman and ambassador for
Special Olympics, helping to recruit
athletes, sponsors and volunteers by
making speeches. She loves talking in
front of people and says she got her
speaking skills from her dad.
Hagner is also taking a class on self-
advocacy at the Carolina Institute for
Developmental Disabilities. Once she
finishes in May, she says she will go on
the job hunt and hopes to get a job in
self-advocacy.
“It’s changed my life by seeing a
whole lot of great opportunities for me
and seeing myself grow as a person,”
Hagner says of Special Olympics.“If
I hadn’t joined the Special Olympics,
I would have been an overweight, fat
person who wouldn’t get exercise.”
Hagner is not like most 27-year-
olds, and she is certainly not like most
27-year-olds with a disability.
However, Strasburg says, more adults
living with disabilities could become
just as successful as Hagner.“I think
that given the right supports, given
the right amount of instruction, they
can overcome certain obstacles and
can be successful contributors in the
community.”
for those 16 years old and older with
a disability, the unemployment rate
was 13.8 percent.Additionally,Van
Hatchell, the director of marketing
and communications at Extraordinary
Ventures, says that most jobs for adults
with disabilities are either volunteer or
pay below minimum wage.
Despite limited employment
opportunities, these parents refused
to accept that their children wouldn’t
be able to have a career.They started
ExtraordinaryVentures, which began
solely as an event center, and hired
adults with disabilities to maintain, set
up and clean the space.
Since its foundation, Extraordinary
Ventures has created and operates other
businesses within the organization,
including graveside maintenance,
laundry services and football game day
parking at the University of North
Carolina at Chapel Hill. Extraordinary
Ventures has 45 employees, 23 of
whom work on a regular basis, and all
of the services are performed by adults
with disabilities.
“Some people, it’s hard to
communicate the value that our
employees can still create, even though
it shouldn’t be,” Hatchell says.“Our
guys are very talented at everything
they do.”
Hatchell says his employees are
particularly good at patterns, data
entry and attention to detail. He
points to bracelets his staff made
earlier in the day, saying that while his
employees were able to make bracelets
with recognizable patterns, their
accompanying job coaches were not
able to make such discernible patterns.
It’s not unusual for Extraordinary
Ventures employees to have job
coaches to help them. Hatchell says
many high-functioning adults with
disabilities don’t have as much trouble
finding their own employment
elsewhere compared to lower-
functioning adults with disabilities.
While ExtraordinaryVentures hires
adults with both high-functioning and
low-functioning disabilities,“We’re
trying to find that middle ground,
where people that can be employed
and have a job coach can come in and
be successful,” Hatchell says.
One goal of ExtraordinaryVentures
is to teach its employees, who are
paid $7.25 an hour, skills they need to
transition to a full-time job. Employees
go through an interview process,
clock in and out of work and follow a
checklist. Not everyone who applies is
hired, and while Hatchell says it’s hard
to turn people away, no one is declined
for an interview.
For those who are hired,
ExtraordinaryVentures is meant to
be a springboard between school
and full-time employment elsewhere.
However, some employees will stay
indefinitely at ExtraordinaryVentures.
“Some will never move on, but that’s
OK,” Hatchell says.“We just want to
empower our guys. If they need to, if
they want to move on, they could.”
One problem many adults with
disabilities face as they transition
into the adult world is where to
live. As other adults are going to
college or moving away, some
adults with disabilities do not have
the capability to do so. As a result,
these adults continue to live with
their families.
Of the 47 adults with disabilities
whom Joshua Strasburg assists
as the adult services supervisor
at the Orange County, North
Carolina, branch of The Arc, he
estimates that six to 10 people
live on their own. The Arc is
the largest community-based
organization that serves people
with disabilities.
Megan O’Donnell, the vice
president of communications for
Special Olympics NC, says many
athletes she meets live on their
own.“Some live with their parents,
but they’re very independent at
the same time,” she says.
Special Olympics medalist
Kerry Hagner lives in Chapel Hill,
NC, with her mom and dad.“I plan
to move out sometime, but not
right now,” she says.
THE TAMMY LYNN
CENTER
Another housing option for
adults with disabilities is group
homes. The Tammy Lynn Center
for Developmental Disabilities in
Raleigh, NC, provides education,
family support and residential
services to those with special
needs. While some adults live
at the center, others live in the
community as a part of the NC
Community Alternatives Program
(CAP). This program allows adults
with disabilities to go from living
in an institutionalized setting to
a community setting while still
receiving 24-hour care.
Beverly Harris, the community
residential program manager at
the center, oversees the center’s
three community group homes.
Four people live in each home,
which she says look just like any
other house in the neighborhood.
The adults who live in the homes
have mental disabilities, Harris
says, but they are able to live on
their own because staff members
are at the homes to help.
Harris and her staff help
residents transition into the
neighborhood by taking them
out to public places, such as
restaurants and movie theaters,
to learn how to interact in the
community. Residents are then
taken to the home they will be
living in, so they can get used to
their new surroundings.“Once
they move in, they absolutely love
it,” Harris says.
Harris says that despite the
adults’ constant need for a
caregiver, the center promotes
independence. Residents visit the
center for day activities, where
they learn useful life skills.
Harris says it’s rare that
residents move back in with their
families, so their home through
the Tammy Lynn Center becomes
their permanent home.
“We’re the best neighbors you
could ever have,” she says.
Participants of Voices Together gather for one of the organization’s weekly music therapy sessions. Voices Together, begun in 2006, uses
innovative techniques to promote communication among adults with disabilites.
Home Sweet Home...But Where Is Home?
PHOTOBYLINDACHEWNING
“[Special Olympics]
changed my life by see-
ing a whole lot of great
opportunities for me
and seeing myself grow
as a person.”
14. 32 wabisabi FEB 2012 33
S
By Carson Blackwelder
Lauren Potter - a young woman taking on the entertainment industry - portrays a cheer-
leader with special needs both on and off camera. The effects of her role as an activist for
the special needs community are felt worldwide, and her bravery and strength of charac-
ter shine through. In a time when people are worried and self-conscious about how they
look in front of others, Lauren urges you to stand up for what you think is right.
LAUREN
POTTER
ACTRESS.ACTIVIST.CHEERLEADER.
South Africa. New Zealand.Australia.
England. France.What do these places
have in common? They have all been
touched by a young woman with
Down syndrome who is using her rise
to fame to speak out against the mis-
treatment of people with special needs.
Lauren Potter — a girl who dreamed
of being an actress in her favorite mov-
ies — is making her mark on Holly-
wood and speaking out against the one
thing she cannot stand: bullying.
High schooland beginning
asanactress
The world knows her as Becky Jack-
son, the witty cheerleader on the hit
Fox comedy Glee. But to those closest
to her, Lauren will always be the little
girl who dreamed of the “spotlight.”
“She would say,‘Here, I have an act
for you Mommy.Watch,’” says Robin
Sinkhorn, Lauren’s mother.“She would
dance to music that was on, and she
was always wanting to act out every
little scene for us when she was in her
playpen.”
The desire to be in the spotlight was
not something that Lauren lost as she
got older.
Lauren attended Riverside Poly
High School in sunny Riverside,
California. It was there that she first
began to put her acting chops to the
test as a member of the school’s drama
club, participating in as many plays as
possible.
“Now that I think about it,” Robin
recalls,“Lauren wasn’t in any of the
plays.They weren’t very inclusive then,
but they are making strides toward be-
ing more open now.”
When she was 14, Lauren and her
mother discovered Heart & Halo Tal-
ent, a special talent agency out of the
Down Syndrome Association of Los
Angeles organization.
Robin says that she knew her daugh-
ter wanted to pursue acting, but she
also knew cruel industry.
“Lauren said,‘I want to do that, I
want to do that,’ and as a parent you
kind of try to let them down easy,”
Robin explains.“I told her,‘Lauren,
that’s fine, but there are only a few
people that get in and make it.’”
But less than two years after sending
in her headshots, Lauren got her first
big break: an audition for the movie
Mr. Blue Sky.
PhotocourtestofGETTYIMAGES
15. 34 wabisabi FEB 2012 35
Auditionsand breaking
into the industry
Directed by Sarah Gurfield, Mr. Blue
Sky is a coming-of-age story of three
friends who struggle with life, love and
the stigma society places on people
with Down syndrome.
Lauren still gushes about landing
her role as Andra Little in the film.“I
did want to be an actress for years, and
I did Mr. Blue Sky when I was 16,”
Lauren says.
On the set of Mr. Blue Sky, Lauren
realized she enjoyed the show business
atmosphere.“Lauren loved it,” Robin
says,“but she really enjoyed that the
cast was like a family.They still keep in
touch to this day.”
Still excited from the success of her
first film, Mr. Blue Sky, Lauren decided
to try out for a chance to be on the
Riverside Poly high school cheerlead-
ing team.
Robin says she had a few reserva-
tions about Lauren trying out.“The
assistant coach had told me that if
Lauren went to all of the tryouts and
was pretty good, that they would find
a spot on the team for her — it was an
inclusive thing they were going to try,”
Robin says.
“So instead of giving Lauren the
reality that she may not make the team,
I just let her go right on and try out …
I mean, I had already been told that she
was going to make it.”
So Robin was surprised when she
received an email from the school saying
Lauren hadn’t made the cut.“The coach
had decided that it would be too much
for a competitive team for Lauren to be
on it,” Robin says, adding that she felt
bad because she hadn’t prepared Lauren
for the sting of rejection.
“I felt really bad, and I really wanted
to compete,” Lauren recalls.
Little did she know her fortune was
about to change.
“My agent told my mom about
Becky Jackson on Glee and that she was
a cheerleader,” Lauren says.
“I showed everybody. I proved it to
them!”
“When I was a little
girl, there were bullies,
and they would beat
me down and make me
eat sand … and they
called me the ‘R-word.’”
PhotoScourtesYofFOXENTERTAINMENTandRobinsinkhorn
Glee: The opportunity of a
lifetime
The cheerleading odeal had taught
Robin to be realistic about the possi-
bility of Lauren being denied.
“When Glee came up, I told her that
there were 13 other girls trying out and
that she probably wouldn’t get the role,
but that you can try out and do any-
thing you set your mind to,” Robin says.
“The rest is history on that one.”
Lauren beat the 13 other girls for the
coveted role on Glee.And as she walked
onto the set for the first time, Lauren
could not believe it — she had arrived.
“It was like a family there, and it was
totally awesome,” she says.“My favorite
part is working with the actors and the
crew.”
Robin says the thing she enjoys most
about the show is that it blurs the line
of inclusion.
“We would love to see more people
with disabilities in roles onTV and in
movies,” she says.“We want it to be
focused on the talent of the individual
rather than some disease or handicap
that will help them play the role better.”
Lauren and her mother are thrilled
with the opportunities Glee has
opened up for them.They say they
can’t help but do everything they can
to give back to children with special
needs and try to help them realize their
big dreams.
Lauren has since transformed her
role as a star into an opportunity to be
an ambassador for others in the special
needs community.
CONFRONTING BULLYING
Of all of the issues the special needs
community is faced with, Lauren is
most intrigued and involved with the
isue of bullying.
Lauren says she has not only wit-
nessed her fair share of people being
bullied, but she has also been on the re-
ceiving end of some of the worst, most
direct forms of torment and humilia-
tion that can be targeted at people with
special needs.
“When I was a little girl, there were
bullies, and they would beat me down
and make me eat sand … and they
called me the ‘R-word,’” Lauren says.
“Sometimes, mean kids would talk
about me behind my back, and this one
time, some boys were walking behind
me making weird noises and laughing
at me.”
Never one to take insults in stride,
Lauren confronted her tormentors.
“I turned around and asked them
why they would do something like
that,” she says.
“I told them to grow up.”
This was the one thing the bullies
didn’t expect. Robin says she is still
shocked every time Lauren stands up
to a bully.
“Lauren surprises me in everything
that she does,” Robin says.“Lauren is
definitely a spunky girl and isn’t afraid
to stand up for herself.”
Robin also says that growing up with
three brothers has made Lauren tough.
And Robin always knew there was the
chance Lauren would be bullied, so she
had instilled in Lauren the confidence
to stand up not only for herself, but also
for others who are bullied.
“Last year, I was with my mom in
Target, and I realized some girls were
talking about me.The girls were saying
‘retard’ in a sneeze,” Lauren says.
Age: 21
Birthday: May 10, 1990
Glee character: Becky Jackson
Favorite TV show: Glee (of course),
Pretty Little Liars and Shake it
Up
Favorite Glee character: Quinn Fabray
Favorite movie: Alvin and the
Chipmunks
Favorite book: The Secret Garden
Favorite song to dance to: “Crush” by
Selena Gomez
Favorite travel destination: New York City
Celebrity crush: Taylor Lautner
Role model: Jane Lynch
Dream role: Singing on Glee
Biggest dream: Having an amazing
man to love and spend my life with!
Wabi
Facts
Favorite color: Red
Favorite memory: Spending time with
my brothers and my mom
Favorite food: Junk food
Favorite animal: My cat, Oliver
Lauren Potter and the
cast of Glee, pose at the
68th Annual Golden Globe
Awards on Jan. 16, 2011
in Beverly Hills, California
where the show won three
awards.
16. 36 wabisabi FEB 2012 37
“I said,‘Hey, Mom, why do those
girls say I’m a retard?’Then I said to
them,‘Really? Are you kidding me?’”
Once again, Lauren had caught the
bullies off guard.
Robin says bullies are always shocked
when Lauren stands up for herself, but
she acknowledges that not everyone
has the ability or the confidence to do
the same.
“Glee gives Lauren the chance to
speak out and gives her a platform that
makes what she is working toward
that much more relevant,” Robin says.
“She has been speaking out for issues
that haven’t really been spoken about
before.And obviously, because of her
fame, people are listening. It has given
Lauren a voice.”
Lauren’s voice has involved trotting
her “R-word” Campaign around differ-
ent areas of the country.
She never knows who she will meet,
but often she finds exactly the kind of
people she wants to reach out to.
Robin recounts their recent trip to
Alaska in which a girl in the audience
— one without any recognizable dis-
ability — spoke up after Lauren’s speech.
The girl told Lauren how inspira-
tional she was to her, and that she was
grateful to have her as a role model.
Robin says the audience was moved to
tears by the girl’s story of feeling like
a social outcast and her struggles with
thoughts of suicide.
“I said that she can do it and that I’m
here to help her,” Lauren says.
Cyberbullying: Bullying in
the 21st century
Sometimes, the worst bullying occurs
under the cover of anonymity. Since
taking her role on Glee, Lauren says she
has been a victim of cyberbulling mul-
tiple times.
“It really hurts me,” Lauren says.
And it happens more often than she
would like. People have posted profane
things to Lauren’s Facebook wall, creat-
ing a mess for her mother to clean up.
Robin recalls one post that was espe-
cially cruel.
“It was really awful things, like a
poster that would say, ‘You just ran in
the Special Olympics,and you won.But
you are still a retard,’” Robin says.
Another awful bullying instance oc-
curred when someone online posed as
another one of the Glee cast members
and tried to coax Lauren into coming
to London.
“It was really a real lie,”Lauren says.“I
was crying,and I was like,‘Mom! Mom!
Help me, please.’”
When the constant harassment be-
comes too much to handle, Lauren’s
fans run to her rescue.
“Soon there were hundreds of mes-
sages from fans,” Robin says. “There
were hundreds of notifications of peo-
ple saying that they had Lauren’s back.It
was truly moving.”
Lauren was so gratified that she
posted a message on Facebook thank-
ing everyone for the support.Within
two hours, there were more than 100
messages from fans all over the world
reassuring her that she was right.
“People were standing up for her and
supporting her, so it ended up being a
good thing,” Robin says.
Bullying can still hurt, but mostly,
bullying fuels Lauren’s passion to stand
up,speak out and teach others that their
actions have hurtful consequences.
Robin stresses how she and Lauren
are not trying to be the “word police,”
but instead are trying to provide people
with a lexicon of words that are less
hurtful to people with special needs.
“It is then up to the person to either
Above: Lauren with Miss Maryland, Miss Teen USA and Miss District of Columbia at the
Audi Best Buddies Challenge in Washington, D.C.
Top right: Lauren and Capt. Chesley ‘Sully’ Sullenberer, who saved the lives of all 155
people on U.S. Airways Flight 1549 by landing in the Hudson River, on January 15, 2009.
Bottom right: Lauren jogs at the Audi Best Buddies Challenge: Hearst Castle, a 100-mile
cycling fundraiser, on Saturday, September 10, 2011.
take that to heart or to continue abusing
words that they now know, for a fact,
can hurt peoples’ feelings.”
“If Lauren can reach somebody that
needs help and give them the inspira-
tion and resources that they need, I
think that is the purpose of all of this,”
Robin says.
What the future holds
Lauren says she will continue to sup-
port organizations that she feels rep-
resent her passions and the things she
stands for.
At the 2011 VH1 Do Something!
Awards, hosted by Jane Lynch, Lau-
ren presented the night’s biggest award
to Sarah Cronk, a student at Whitman
College in Walla Walla,Washington.
Cronk has established an organiza-
tion called “The Sparkle Effect,” which
aims to provide special needs children
PhotocourtesYofBESTBUDDIESINTERNATIONAL
“Glee gives Lauren the
chance to speak out
and gives her a plat-
form that makes what
she is working toward
that much more rel-
evant. She has been
speaking out for issues
that haven’t really been
spoken about before.”
with disabilities from Downs syndrome
to autism an opportunity to be on an
inclusive cheerleading team.
“They go into cheerleading squads,
like the one at [Riverside] Poly, and
they have kids with special needs get to
be a part of the squad,” Robin says.
“They get to train with the cheerlead-
ers, wear the uniform and go out on the
field.It is an inclusionary process that lets
kids who want to be cheerleaders simply
be cheerleaders,rather than just the typi-
cal girls that get to go to competitions.”
Not only did Lauren present the
award to “The Sparkle Effect,” but she
also paid a surprise visit to one of the
squads on ABC’s Everyday Health.
Everyday Health,which airs Saturdays
onABC,showcasesAmericans who face
and overcome health issues, as well as
others who are just paying it forward.
“These kids are Lauren’s biggest fans,
STOP
BULLYING
Educate
Challenge the stereotypes and
misconceptions about disabilities
and special needs.
Ask questions
Frame questions that allow insight
into school or online activity.
Speak up
Nofity teachers, parents, politi-
cians or community leaders.
Build community
Reach out to families that are
affected by special needs and
invite them to participate in
community events.
Disable bullying
Share the possibilities and success-
es of people with special needs.
AbilityPath.org’s action steps
to disable bullying of children
with special needs:
Go to www.abilitypath.org
to see Lauren Potter’s
disable bullying video.
25 percent of the general
student population report being
bullied each year.
60 percent of students with
disabilities report being bullied
each year.
43 percent of kids report having
been bullied while online.
and they didn’t know she was coming,”
Robin says.
The representation of special needs
children in Hollywood is something
Lauren is passionate about. She is a part
of a committee that focuses on the rep-
resentation of people with disabilities in
film and television.
Lauren does not want to be known as
“that girl with Down syndrome.”
“I don’t want to be cast just because
of my disability,” Lauren says. “I would
love to play a romantic girlfriend in a
movie or show.”
But Lauren’s dreams go far beyond
that of the big or small screens.
“In my future, I would like to do
cooking, because I love to cook things,”
Lauren says. “And I would like to do
Broadway.”
“Oh, Broadway?” Robin asks.“That’s
news to me.”
AUDI BEST BUDDIES CHALLENGE
17. 38 wabisabi FEB2012 39
A
THE ACaDEMICS
OF INCLUSION
Are individuals with special needs treated fairly in schools?
By Kaelyn Malkoski
angela swanson has a college degree
and a disability.Angela is described as having the in-
tellect of a bright, young woman and the motor skills
of a small child.
Angela is a sister, a daughter, a fiancée, a friend, a
roommate, an enigma.
Angela was born with cerebral palsy, a disability
that caused severe impairment to her motor func-
tion but left her cognitive function untouched. It is a
“mind-boggle” of a disability, says her father, Jeffrey
Swanson of Chapel Hill, North Carolina.While her
motor functions have been damaged, hindering her
ability to move and speak easily, she is extremely
intelligent. Her condition is a riddle that pervades
every aspect of her life.
However, despite her puzzling state, she remains
optimistic.
“Sometimes I felt isolated. Sometimes I still do.
But most of the time, I’ve been lucky,”Angela says.
“Life is just my riddle to solve.”
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18. 40 wabisabi FEB2012 41
schools and smaller, self-contained
classrooms designed for children with a
severe learning disability and/or behav-
ioral problems, it is the “go to” option
for most public schools.
The bureaucracy behind academic
decisions made about the placement of
children with special needs is complex.
To some families, it is a straitjacket
that leaves their children trapped on a
path predetermined by school systems.
Fortunately, Swanson is happy with the
decision to mainstream his daughter.
In compliance with the U.S. Indi-
viduals with Disabilities Education Act,
schools are forced to incorporate the
least restrictive environment (LRE),
which provides free, appropriate, unre-
strictive, public education to individu-
als. Many times, this LRE comes in the
form of an individualized education
program (IEP).
Lois Miller, executive assistant to
the director of The La Grange Area
Department of Special Education
(LADSE), says an IEP is the best way to
ensure fair treatment of an individual
with special needs in school. LADSE
is a government-funded coopera-
tive in La Grange, Illinois, that works
with schools to specially design IEPs.
To achieve an IEP, she says, a team of
parents, teachers, school administrators,
LADSE representatives — and poten-
tially psychologists and physical, speech
or occupational therapists — complete
an evaluation of a child, based on ob-
servation and testing.
From here, the child receives an
IEP and is mainstreamed into public
schooling. Success is achieved, right?
Not exactly.
Although an IEP sounds like a
foolproof plan, it is highly criticized by
some psychiatrists, social scientists and
parents.This is because in most cases,
in order to receive an IEP, a child with
special needs is given a label.
Although Angela’s label, cerebral
palsy, was accurate, Swanson says it af-
fected her peer interaction. Sometimes,
he says, she was defined by her disabil-
ity and isolated by her peers. However,
he believes that her classmates grew to
be sensitive and tolerant of her special
needs.
“Tolerance is something special that
you can’t teach in a textbook,” Swan-
son says.“It needs to be generated from
experience.”
Labels, which define a child by a
concrete disability, delve into dangerous
waters, says social scientist Sue Estroff,
Ph.D.They may be permanent.They
enable skepticism.And they emphasize
difference.
It is quite the conundrum to Estroff,
who teaches a seminar about difference
at the University of North Carolina at
Chapel Hill.
“Nobody wants to be labeled with
a disability,” she says.“But if you want
help, you need a label.”
In order to receive any sort of schol-
arship or special treatment, usually in
the form of an IEP, an individual has
to “come out.” By accepting a label, a
person is forfeiting his or her individu-
ality to society’s predetermined defini-
tions.This leaves a person vulnerable
to isolation and discrimination because
a label means he or she has a concrete
disability that, by default, is associated
with difference in society’s eyes.
So, children with special needs are
faced with a difficult choice: to be iso-
lated from public schooling by not ac-
cepting a label and therefore not having
an IEP, or to be isolated from society by
accepting a label, an ensuing IEP and
the connotation of difference.
It seems to be an inescapable cycle, in
which a person with special needs will
forever be treated unfairly. If a person
decides to embrace a label in order to
achieve a fair education, Estroff ques-
tions the process of determining who
can receive one.
“Who is seen as deserving?” she asks.
She calls the process of granting
labels to children a “can’t v. won’t” situ-
ation. In her opinion, if a child can’t do
something, he or she will get help in
the form of a label and IEP.
“But if there’s just a hint of ‘won’t,’
the child is in trouble,” she says.“That’s
“Nobody wants to be
labeled with a disablilty.
But if you want help, you
need a label.”
She has certainly “solved the riddle”
of her long-distance relationship with
fiancé,Alexander, whom she met at St.
Andrews Presbyterian College.Al-
though he lives in Washington, D.C.,
Angela talks to him on the phone
every night and is able to visit him at
least once a month with assistance from
her parents.
Alexander has muscular dystrophy, a
degenerative disability that may have
crippled his body but has not affected
his love for Angela.
“He [Alexander] is the love of her
life,” Swanson says.“It doesn’t matter
that either of them is disabled — all
that matters is they are happy.”
Angela’s cerebral palsy has not
prevented her from living a happy and
successful life.The challenges her dis-
ability imposes aren’t about the deci-
sion of whether to allow her to partici-
pate in day-to-day activities; they are
about how to enable this participation.
“I had to ask myself with every deci-
sion I made,‘How do I include her?’”
says Swanson, a professor in psychiatry
and behavioral sciences at Duke Uni-
versity.“How can I help her meet her
full potential?”
To Swanson, this question was espe-
cially relevant when it came to Angela’s
education. Because she is intellectu-
ally able, she could not be educated
in a special education, self-contained
classroom, where students typically
have severe learning disabilities and
are enrolled in small numbers. She
didn’t need to take decelerated learn-
ing classes. She could not be included
in a generic special education program.
There was only one choice: She had
to be mainstreamed into the Chapel
Hill-Carrboro City Schools in Chapel
Hill with an individualized personal
care assistant.
Swanson and his daughter met with
the disability services director in the
Chapel Hill-Carrboro school system,
who helped guide Swanson’s decision
to mainstream his daughter.
“He was impressed by Angela be-
cause she is so sharp,” Swanson says.
“He [the disability services director]
says usually kids who are in the local
special education services have dis-
abilities that affect both physical and
intellectual deeds.”
Angela’s will and wit fueled her
achievement in high school and
ultimately propelled her to obtain a
bachelor’s degree from St.Andrews
Presbyterian College in Laurinburg,
North Carolina.As his daughter drove
her powered wheelchair across the
graduation stage in May 2008, Swanson
says he was overwhelmed with pride.
She had met her academic potential
— defying her disability and graduat-
ing with honors — and represented a
success story for everyone with special
needs.
The issue over mainstreaming an
individual with a special need is a hotly
disputed debate within the special
needs community. Oftentimes, main-
stream teachers are not trained to teach
a child with a disability, the school is
not equipped with proper funding
to support students’ needs and peer-
to-peer interaction is awkward and
intolerant.
However, because mainstreaming is
easier and cheaper than alternative op-
tions, including at-home tutors, private
PhotocourtesyofJeffreyswanson
Angela Swanson poses with her father, Jeffrey, outside of their Chapel Hill home. The two
have worked together to make sure that Angela reaches her academic potential and lives a
happy and successful life despite having cerebral palsy.
0
500
1000
1500
2000
2500
3000
2000 - 01 and 2009 - 10
2860
2000 - 2001
2009 - 2010
PercentageChangeOver10years
Developmental
Disorder
Other Health
Impairment
Emotional
Disturbance
Mental
Retardation
Special
Learning
Disability
Speech/Language
Impairment
Other
Disabilities
93
378
213
368
303
689
480
407
624
463
334
340
1388
1416
2431
2860
Number of students
in thousands
Special Education Population by Disability
72.7%
127.7%
-15.2%
25.8%
-15.0%
2.0%
-1.0%
Autism 306.4%
Source:Thomas B.Fordham Institute
19. 42 wabisabi FEB2012 43
placement in classrooms.Although
TEACCH is an organization with a
focus on the education of parents, she
says there are classrooms that use the
TEACCH approach. In these class-
rooms, teachers have been taught inter-
vention strategies specifically designed
for autistic individuals, an approach
called Structured Teaching.
“This approach allows the teacher to
understand where the child is coming
from and understand that a child may
not be doing something willfully or
purposefully — it’s an empowering ap-
proach,”Van Bourgondien says.
However, this approach mainly exists
in classrooms that are self-contained,
and therefore have a more restrictive
environment.Van Bourgondien says
it is hard to educate an autistic child
otherwise, because no classroom exists
for all people on the spectrum.Autism
can cause severe to mild learning dis-
ability, average intelligence or brilliance
in affected individuals. But because it
is such a broad spectrum, most teach-
ers are unequipped to properly under-
stand and teach autistic individuals.The
goal is to ultimately be able to train
teachers in both self-contained, special
education classrooms and mainstream
classrooms so they can understand all
children with special needs.
Because this goal is slightly utopian,
TEACCH’s main focus is parents.
TEACCH centers provide parents
with education about understanding
their child’s particular learning style
and how to use their strengths to learn
social skills at home.TEACCH then
encourages parents to talk to teachers
and employers to develop these skills at
school and in the workplace.
“We teach parents how to be their
child’s advocate,”Van Bourgondien says.
In addition to parent-focused ap-
proaches, IEPs and self-contained class-
rooms, many other resources exist for
children with special needs. Other op-
tions include small, transition schools,
such as Springer School and Center in
Cincinnati. Center program coordina-
tor Mary Ann Mulcahey, Ph.D., says
Springer is an attractive option for
parents of children with special needs
because it provides specialized services
that a child needs under one roof, takes
place between 8:30 a.m. and 3 p.m. and
serves as a transition school between
district and private schools, altogether
reducing stress on the family.
“Our students leave knowing HOW
to learn, not just how to get the work
done,” Mulcahey says.
Because so many educational re-
sources are available for children with
special needs, it was comforting to
Swanson to know that Angela would
achieve an education. He says that, as a
parent, he feels the struggles she faces.
He often worries about Angela being
included, being treated fairly and living
to her maximum potential. But he says
the wide selection of educational op-
portunities ensured that Angela had a
successful school experience.
“You’d think disability implies she
would be a ghost of herself,” Swanson
says.“But Angela isn’t that ghost. She is
who she is — she’s a beautiful, young
woman who has graduated college, is
engaged and is living on her own.”
Although Angela may not be normal
by societal definition, there is nothing
wrong with that.And, Swanson says,
she is certainly not just defined by her
cerebral palsy. Her disability is a part of
her but does not make her who she is.
Instead, Swanson has a different spin
on disability.
“I like to think that we are all dis-
abled,” he says.“Differently abled.”
Interested in learning more about what
it means to have a physical handicap?
Professor Jeffrey Swanson’s YouTube show,
“Blinding Insights,” tackles what it means
to have a physical handicap on the episode,
“Musically Impaired.” He plays four
goofy and distinct characters who inter-
view his daughter, Angela, and her friend,
Lola Victor-Pujebet from France about their
personal experiences with disability and
the unique friendship they have established
through Skype.
In Angela’s opinion, the show is “edgy”
and says things that other people wouldn’t
say in a less ridiculous context. She pokes
fun at her father’s characters but says
“Blinding Insights” is on the list of her
favorite shows.
Our new favorite show - BLINDING INSIGHTS
when he or she may not get the help
needed.”
She adds that some disabilities, in-
cluding fibromyalgia, Crohn’s disease,
migraines and chronic fatigue syn-
drome, have conditions that are debili-
tating but not often visible. In an article
published on Sept. 17, 2011,“Wave of
New Disabilities Swamps School Bud-
gets,” TheWall Street Journal writer
Amy Dockser Marcus highlights the
disadvantages “hidden diseases” pose
for those who have them. For example,
when a student has chronic fatigue
syndrome and cannot participate in
gym or make it to a 10 a.m. math class,
it doesn’t mean he or she “won’t” do
something — he or she physically can’t.
Taking Estroff’s “can’t v. won’t” de-
bate into consideration, does this mean
this student isn’t worthy of a label and
the resulting help? Estroff criticizes the
public school system for its method of
labeling in order to give a child help
and for its determination of granting
help.
Besides these inconveniences, label-
ing a child in order to give appropriate
education presents additional problems.
Dr. Sucheta Connolly says that unnec-
essary and unfair labeling has caused
an over diagnosis of disability and, in
some cases, prescription medicine.As
the director of the University of Illinois
at Chicago Pediatric Stress and Anxi-
ety Disorders Clinic, she has evaluated
many children with the intention of
prescribing medication and has found
that some of these children do not
actually need medicine.
“In our society, there is emphasis
on the connection between disability
and prescription medicine,” she says.
“Medicine isn’t the ‘easy fix.’”
In fact, she says, it’s dangerous. If a
kid has been labeled as having a spe-
cific disability, many times, treatment
for this disability includes the prescrip-
tion of medicine. But if this individual
doesn’t need the medicine, it could
have serious side effects. Connolly says,
for example, that the label and misdiag-
nosis of attention deficit hyperactivity
disorder could mean the misdiagnosis
of ADHD medicine, which could cause
serious health problems.
“In order to appropriately diagnose
a child with a disability, I look at the
severity of symptoms and monitor the
child very closely,” Connolly says.“I
would never prescribe unwarranted
medicine. I am a strict diagnostician
who believes the risks outweigh the
benefits.”
While Estroff, Connolly and oth-
ers criticize labeling a child to achieve
mainstream education, proponents of
such labeling, like North Carolina’s
Treatment and Education of Autistic
and Communication-Related Handi-
capped Children (TEACCH) clinical
director MaryVan Bourgondien, Ph.D.,
argue that if a label gets individuals
services they need, then labels must be
good.
“It isn’t the labels themselves that
stigmatize,” she says.“Children [with
special needs] are stigmatized when
they are in a setting where they are
failing or acting unusual.”
Van Bourgondien also says that some
teachers are, in fact, trained to work
with children with special needs, and
labels help to determine appropriate
“I like to think we are
all disabled.
Differently abled.”
Students who are disabled have the choice to be mainstreamed into regular classes at their
schools or to receive help after completing an assessment. Parents worry the “label” the chil-
dren receive to get help could actually be hurting them socially.
During the 20-minute episode, Swanson explores disibilities. The eclectic
characters of the show are involved in their own story lines, including settling
a lawsuit and embarrasing their children.
PhotocourtestofJeffreyswanson(Left),shutterstock(right)
Bill Clinton Hernandez Sgt. Sigurd Bjornstad
Jimmy Jay Viras Professor Wilfred Nader-Fonda
20. 4 wabisabi FEB2012 5
Contents Departmentsfeb 2012 Issue 1
9 Ed Letter
10 Art Submissions
12 Calendar
14 Ask Wabi
18 What’s In Your Area
20 Wabi Reviews
64 Dynamic Duos
FAMILY LET’S GO
HEALTH & WELLNESS
FUN
BULLETIN
pg 1 2
pg 66
pg 70
pg 14
pg 20
70 Spotlight
48 There’s No Place Like Home
16 Accessible Living
22 All About Alergies:
Celiac’s Disease
26 Empowering a Generation
38 The Academics of Inclusion
58 Navigating The Maze
44 Thriving In The Midst Of Mania
54 Against All Odds
66 Biking for a Purpose
78 Research In Motion
72 Fitting In And Having Fun
76 Becky’s Book Corner
80 Baked With Love
Cover Story:
Lauren Potter
PHOTO COUrTESY OF FOX ENTERTAINMENT
Using her
fame to fight
bullying
Find recipies
and more
on our iPad
edition!
One woman brings her bookshop
dream to the East Coast.
Several ways to make personal
living spaces more comfortable.
Cody Poplin and his experience
completing the 63-day Journey
of Hope.
Camp Twitch and Shout shows
campers how they can stand out.
22. 44 wabisabi FEB2011 45
JJULIA FARMER WAS diagnosed
with bipolar disorder in March
2010, but finally having a
medical name for her debilitating
depression did little to alleviate her
symptoms or feelings.
Scared and desperate, Julie
created a separate Facebook profile
from her personal page and began
to search through bipolar groups,
hoping to find a page that would
provide some resources to help her
cope with the disorder.
She discovered so much more.
“I went looking for sites to learn
from … and then this one popped
up with the word ‘thrive’ on it,”
Farmer says in a post.
“I liked the idea of thriving. It
sounds better than just dealing.”
Farmer had stumbled upon
Thrive With Bipolar Disorder,
a Facebook page dedicated to
providing a judgment-free space
for people with the bipolar
disorder to communicate and
connect.
The group is not for people
who are merely coping with their
diagnosis, but for those who wish
to thrive — to live a life beyond a
diagnosiss and stigma.
Farmer said within the first
month she knew she’d found the
one thing that had been missing
since she was diagnosed: a sense of
community among her peers.
“I found people who genuinely
love me, and I love them,” she
explains.
“I am proud that I am part of
something that will enable me to
turn around and help others.”
With more than 200 members
in more than 25 countries, team
THRIVE provides a safe space for
conversation among people who
are bipolar. Participants are able to
discuss their problems and coach
one another through manic and
depressive episodes — and it’s all
through Facebook.
Team THRIVE is the brainchild
of Los Angeles-based life coach
Robin Mohilner, who was
diagnosed with Bipolar I disorder
when she was 16.
Though a Facebook page cannot
replace the benefits of consulting
with a trained therapist, or taking
medication, Mohilner says she
created the group because she felt
that traditional therapy continually
fails people with the condition.
“I never trusted my therapist,”
she says.“It’s not easy for me to
trust people when somebody is
just a blank slate and wants me
to share my feelings.What we found
in THRIVE is that people are really
able to share and trust because I share
openly from my own experiences with
the disorder, and they know I’m not
going to judge them.”
Mohilner stresses that her work
with team THRIVE cannot be legally
termed therapy because she can
practice only in the state of California.
“Legally there is no confidentiality,”
she says.“But people have been
underestimated as human beings and
treated differently because they have
this disorder. I’m not here to force
people to take their medication. I’m
not in the role of therapist; I’m in the
role of coach.”
Mohilner says she knows firsthand
that bipolar people can feel alienated,
even among their own family, because
the disorder is difficult to rationalize
and explain.
“It’s like trying to explain the feeling
of water, or the ocean; you just can’t
comprehend what wet feels like if you
haven’t touched it,” she says.
“It’s such a complex disorder that
people do far better working with
their peers than with someone who’s
just going to parrot what they say. But
when they come to the Facebook page
— it’s the most connected they will
ever feel.
“Facebook’s where the power is.”
Pocket Therapy
Bipolar disorder, also known
as manic-depressive disorder, is
characterized by rapid shifts in mood
from extreme depressive lows to
vibrant and manic highs.
The National Institute of Mental
Health estimates that about 3.9 percent
of the adult population in America
lives with bipolar disorder and about
83 percent of these cases are classified
as severe.
Because manic and depressive
episodes are triggered by
environmental and social situations,
predicting when the next one will
occur is nearly impossible.
But Mohilner says the very
unpredictability of the disorder is one
of the reasons the concept of coaching
through Facebook is so successful —
when people do have manic episodes,
help is never more than a few clicks of
a mouse away.
In a world where people are
constantly connected to social media
and the Internet, team THRIVE
enables its members to receive an
almost immediate and empathetic
response to their needs.
But unlike what occurs in traditional
therapy, Mohilner chooses to share her
own vulnerabilities with the team. She
says she does so in the hopes that her
personal insight as a trained psychiatrist
will help others battling the disorder
conquer their own emotional demons.
“I don’t put myself in the therapist
position; I share my own growth as I’m
in it,” she says.
“Our wounds never fully go away, so
as I’m helping and giving to everybody
else, I’m also going through my own
healing journey.”
It’s this level of self-awareness
and introspection that allows team
THRIVE members to connect
with Mohilner, even when they
are separated by continents. It’s a
connection she’s fostered since her first
posting on the team THRIVE website.
Life beyond mania:
Robin’s Story
In her first blog post to team
THRIVE, Mohilner chronicled the
moments that precipitated her first full-
blown manic episode. She writes with
candor, humility and the retrospective
clarity of a woman far removed from
the 16-year-old girl whose emotions
rebounded like a yo-yo.
But it’s clear from her tone that
Mohilner’s emotional wounds still sting
like a paper cut, even after 15 years.
“For two weeks straight, every
emotion I ever had came exploding
out of my body,” she writes.“My
family was playing Russian roulette
How one woman’s journey of introspection helps
others struggling with bipolar disorder find a sense
of community
Thriving in the
Midst of Mania
Robin Mohilner, founder of team THRIVE, says
starting the Facebook page has given her a
refreshed sense of purpose.
HomeProfile
“I liked the idea of
thriving. It sounds better
than just dealing.”
Wall
Every day, Robin posts a coaching
exercise based on her personal
growth or topics proposed by team
members. Topics include building
self-esteem and managing hypo-
mania.
Discussions
The discussions section is used as a
vehicle for in-depth conversations.
Here members discuss topics
ranging from how they felt when
they first received their bi-polar
diagnosis to the best ways to discuss
their disorder when starting a new
relationship.
Links
THRIVE members share links to
websites that they find helpful in
coping with their disorder. Robin also
posts links to motivational videos
and blog posts that she creates for
the team.
Questions
Robin posts polls here for team
members to answer that help Robin
gauge her members and make
necessary coaching adaptations.
”“
By Chelsea Bailey
Mohilner posts calming images that she photographs to the team THRIVE Facebook page in order “to bring peace and inspiration.” Mem-
bers are asked to share their own images that help provide a similar comfort.
PhotocourtesYofRobinMohilner
23. 46 wabisabi FEB2011 47
with a ticking time bomb made of
their own flesh and blood.”
At the time, the Mohilner family
was reeling from a series of devastating
blows. Robin’s maternal grandmother
died shortly after her mother was
diagnosed with cancer.As the family
struggled to find equilibrium, Mohilner
says, her mania came to a head.
“My energy was like taking the
sun into a pitch black cave. It blinded
people,” she writes, adding that people
chose to dismiss her excitement as
teenage drama, despite the intensity of
her emotions.
Then, on a family vacation,
Mohilner experienced a textbook
manic episode — complete with
explosive rages, delusions of grandeur
and risky sexual behavior.
Her actions warped what could
have been a fun and memorable family
road trip into a nightmare of violent
outbursts, all directed at her dazed and
hapless mother.
In a later blog post, Mohilner’s
mother,Arlene, admits that her
daughter’s illness nearly tore them
apart. It transformed her child from a
bright, bubbly and vivacious teenager
to a girl who was inexplicably vicious
and violent.
“I thought I knew her, but my child
was a stranger to me and I didn’t like
her,” she writes.
At a loss for what to do, and
horrified by her daughter’s behavior,
Arlene began to journal her daughter’s
every action.
“When we were pulled over for
speeding, she yelled and cursed at the
highway patrolman,” she writes.“She
got into a fistfight with her friend who
was with us.
“She calmed down, but then became
more and more violent. I didn’t know
what to believe, but she needed help.”
Then, as suddenly as it came, the
tidal wave of explosive emotion
receded – washing away the anger and
malice and leaving behind the empty
shell of a once young, bubbly and
vibrant woman.
Overnight, Mohilner had crashed into
the deepest of depressions.
“It felt as though she didn’t wake up
from that sleep,”Arlene recalls.
“She could hardly move or
communicate. She’d get this look in
her eyes of terror. She knew something
was wrong with her. Sometimes she’d
mumble,‘I’m crazy.’”
By the time her parents decided to
take her to the doctor for a diagnosis,
Mohilner had sunk so far into a
depressive state that she was nearly
catatonic and unable to speak.
“My journal told her story,” her
mother writes in the blog post.The
notes that she scribbled were so
detailed, doctors were able to diagnose
16-year-old Robin Mohilner with
bipolar I disorder.
“When I looked into Robin’s
eyes, I did not see her,” her mother
recalls.“Her eyes were vacant.There
was nothing I could do to help her but
Bipolar disorder is a neurological disorder believed to
be caused by an imbalance in neurotransmitters in the
brain. As with most cognitive disorders, psychiatrists
can treat only the symptoms of the disorder, with anti-
psychotics and mood stabilizers such as lithium.
A manic episode can be characterized by extreme
optimism, inflated self-esteem, poor judgment and
irrational and overtly sexual behavior. These symptoms
are usually accompanied by a decreased need for sleep
and heightened creativity and efficiency.
If manic states are marked by frenzied states of
euphoria and an inexplicable behavior, depressive lows
can be described as an emotional coma. Numbness,
guilt and a pervasive feeling of alienation and loneliness
define these periods, which can last anywhere from days
to months. Sometimes only a relapse into a manic state
can release someone who is bipolar from the depths of
severe depression.
For some, shifts between manic and depressive states
can occur multiple times a day. Others may experience
a manic episode only once a year. But in either instance,
mood swings severely impact the ability to perform
normal day-to-day functions.
The American Psychiatric Association subdivides
bipolar disorder into two distinct categories based on
severity of symptoms. Bipolar I disorder is marked by
manic episodes that are severe and dangerous both to
the individual and to the people around them.
Bipolar II is a less severe form of the disorder.
Generally, a person with bipolar II disorder can
continue to carry out a daily routine, but mood swings
nevertheless affect the ability to rationally process
emotions. Instead of experiencing a full-blown manic
episode, a person living with bipolar II disorder
experiences hypomania – a milder form of mania,
marked by elation and hyperactivity.
For more information visit the National Institute of
Mental Health’s bipolar disorder page.
www.nimh.nih.gov
HomeProfile
Basic Information pray that the medications work and
that they work fast.”
Fifteen years later, Mohilner’s
voice still quakes as she attempts to
characterize her fear and the depths of
her depression.
“I was dead to the world, and I was
scared out of my mind,” she said.“All
the emotion I had was gone.”
Having gone through her own
experiences of mania and depression,
Mohilner says she knows firsthand how
aimless and lost bipolar people can feel,
and this fuels her passion to share as
much as she can, with whomever she
can reach.
And the members of the team
THRIVE community embrace
Robin’s candor.
“[Robin] shares with honesty and
empathy,creating a safe space for us to be
ourselves,”one user posted on the team
THRIVE wall.
“She guides the journey of self
discovery with honesty so we can get to
a better place...she helps find peace in the
chaos that is bipolar.”
During a recent coaching exercise,
Mohilner shared with others how
her life has been changed since the
inception of team THRIVE.
“Since creating and building ‘team
THRIVE,’ I have been going through
a transformation,” she writes.
“Before creating ‘team Thrive” I was
happy, but I was not fulfilled. I was in
love, but I was not truly loving myself
and I was not living my purpose.”
But that’s all changed.
“Now I look at pictures of myself
and I think ...‘I’m not even her
anymore,” she says.
“People use bipolar disorder as an
excuse to not rise in their lives; they
say,‘I can’t do anything in my life
because I have bipolar disorder,’ but
with [this] site it’s different. It leaves
me speechless at times and it’s truly
impacting people’s lives in ways that
I never and couldn’t have imagined –
people are truly thriving.”
Likes
Members
Countries Represented
Launch Date
About
Email
Phone
Website
487
200
25
April 28, 2011
team THRIVE is a Facebook page that provides
coaching, education and community for those
affected by bipolar disorder.
thrivewithbipolardisorder@gmail.com
1-310-339-4613
www.thrivewithbipolardisorder.com
Likes Defining A Disorder
NAMI
DBSA
Depression Awareness
Non-Profit Organization
Non-Profit Organization
Community
“Our wounds never fully
go away, so as I’m
helping and giving to
everybody else, I’m also
going through by own
healing journey.”
24. 48 wabisabi FEB2011 49
M
THERE’S NO
PLACE LIKE
HOME
Many days, Maura Kane is awakened
at 6 a.m. by fluorescent lights and the objective
eyes of a medical student. She is perused for
unstable vital signs and any cause for alarm in
her 6-year-old body.
Every four hours, 16-year-old Lauren
Coombs is awakened for pain medications,
regardless of the fact that it is 2 a.m., and she
had previously been soundly sleeping through
any pain.
Maura and Lauren have grown up within
the walls of a hospital. They have spent months
navigating their childhoods around scheduled
craft hours and treatment times, knowing that
at any second they may have to stop what they
are doing so a doctor can examine them.
And through it all, their parents are behind
the scenes, battling against the invisible hand of
illness to create a home within and in spite of
the hospital.
By Kelcie Landon
A sense of home is an integral part of child-
hood, but parents of children with special
needs have to get creative to be able to keep
that stability in their uncertain lives.
25. 50 wabisabi FEB2011 51
Maura steals the show at
the NC Children’s Hospital
Children’s Promise. The
Kanes participate every
year in the radio fundrais-
er by giving interviews and
telling their story to raise
money for the hospital.
Home Away from Home
Maura, who lives with her family in
Fayetteville, N.C., has been a regular at
the N.C. Children’s Hospital in Chapel
Hill since she was 13 days old, when
she underwent heart surgery. Though
they found it difficult to watch the
doctor’s comparatively giant hands
work on their daughter’s miniscule
heart, her parents thought this hospital
stay would be an isolated experience.
But they were wrong.
“On our first unexpected hospital
stay, we thought that would be the
extent of it,” says Kate Kane, Maura’s
mom. “But as different issues came
up, we became a little more used to
the hospital.”
Maura has been diagnosed with
stage IV neuroblastoma, a cancerous
tumor that develops from nerve tissue;
cerebral palsy, a group of non-progres-
sive, non-contagious motor conditions
that affect development; and Weaver
syndrome, a rare, congenital disorder
that causes rapid growth. As a result,
Maura has partial left-sided paralysis,
severe epilepsy and other conditions
that send them to the hospital almost
every other week.
“It gives you a whole new perspec-
tive when it comes to planning a vaca-
tion or something where you’re going
to be out of town. You always need to
figure out where the nearest hospital
is,” Kate says. “If we have two solid
weeks where we’re not in the hospital,
we’re really lucky.”
learning to cope
The hour-and-a-half trips to Chapel
Hill and extended stays are difficult on
their own, but Kate and her husband
Kevin have to divide their attention
between Maura and their other daugh-
ter, 3-year-old Maggie, who is brim-
ming with energy and an intense and
apparent love for her older sister. Dur-
ing Maura’s scheduled hospital stays,
Kate’s mother, Joan Foody, travels the
more than 500 miles from Pennsylvania
to take care of Maggie.
“Kate really makes the best of the
situation and tries to make everything
as comfortable and homey as possible,”
Foody says. “I couldn’t be more proud.
She has never taken any of this on as a
burden. She tries to lead as normal of
a life as she can.”
There have been plenty of times
when Maura’s hospital trips were
unplanned, leaving little time to find a
babysitter let alone buy a plane ticket.
Kate says that living in a largely mili-
tary neighborhood has been helpful
when it comes to finding help; many of
their neighbors are craving family set-
tings and are more than willing to help
out. But often, trips to the hospital are
a family affair.
“Both kids have grown up in the
hospital,” Kate says. “We try to focus
on making the hospital home and do
whatever will make the kids the most
comfortable.”
For the Kane family, this means
knowing exactly what items to bring
from home: a binder with Maura’s
medical information, a toy computer,
Maura’s favorite ball and a cellphone.
It means celebrating major holidays
no matter what – even if they have to go
to the hospital in their Christmas dresses.
It means finding comfort and friend-
ship among the hospital staff.
“We can’t say enough about the [N.C.
Children’s Hospital] staff,” Kate says.
“There are at least four or five people
at UNC who know that our daughters’
favorite song is ‘Party in the USA.’”
But for the Kanes, and other families
in their position who want to spend ev-
ery minute with their sick child,“home”
sometimes needs to be more than just
a hospital room, especially when there
are other children involved. This is the
niche that the Ronald McDonald House
Charities strives to fill.
“We have a place for families to
come and stay that is close to their child
that’s in the hospital,” says Cathy Hall,
volunteer coordinator for the Ron-
ald McDonald House of Chapel Hill.
“We allow families to stay together as a
unit. We believe that having loved ones
around when you’re ill speeds the healing
process.”
The Ronald McDonald House of
Chapel Hill looks like a life-size play-
house about a mile from the hospital. It
offers entrancing aquariums, spacious
rooms and playrooms that entertain
children and teenagers alike. It takes
away some of the worry from parents by
providing meals, a pantry for families to
fix their own meals and activities in the
evenings that are often geared toward
siblings.
And, most thrilling to Maggie Kane, it
has an enviable playground.
Kate says that one of the things that
keeps her grounded is being able to leave
the hospital, while someone else watches
Maura, and take Maggie to play on the
playground.
“I think a lot of parents forget to give
themselves a break. As much as you
understand that the rest of the world is
going on, your world is in the hospital
room,” Kate says.
The Kane family has made the most
of their world inside the hospital. Both
kids look forward to the noise-making
A Perfect Escape
Ronald McDonald House
Charities (RMHC) strives
to create, find and sup-
port programs that directly
improve the health and
well-being of children. They
do this by providing a safe
and affordable place for
families to stay while their
child is in the hospital. They
also provide vital support
for the family by offering
home-cooked meals, private
bedrooms, playrooms for
children, recreational ac-
tivities and sibling support
services.
RMHC believes that
children heal faster when
they are surrounded by
people who love them. With
309 houses near major
children’s hospitals all over
America and in 53 other
countries, they are providing
an outlet for families to be
near their children to love
and support them through
the most difficult time of
their lives.
Guests at RMHC are
asked to make a donation of
$25 per night but are never
turned away because of
their inability to pay. RMHC
is largely funded through
individual and corporate
donations, which alleviates
much of the burden of pay-
ment from the families that
stay there.
For more information on
the many ways to get in-
volved with RMHC, please
visit www.rmhc.org. The or-
ganization invites everyone
to become involved though
donations, volunteering,
sponsorships, fundraisers,
and more.
Read other stories from families that make use of the
Ronald McDonald House on our iPad app.
By Kelcie Landon
PhotocourtesyofdanielLEbates(RIGHT)andKATEkane(Left)
Source:www.rmhc.org
“We focus on
making the hospital
home and do
whatever will make
the kids the
most comfortable”
