Special Editon Metro Parent Spring 2010

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SPRING/SUMMER 2010

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Jerry’s Kids
TODAY
Surviving & thriving with
muscular dystrophy

9
VACATION TIME ANNABELLE’S STORY iPHONE APPS

11 tips to help you
make it happen
How local charity can
change lives
that will make
your life easier

2 SPECIAL EDITION • SPRING/SUMMER 2010 • METROPARENT.COM

METROPARENT.COM • SPRING/SUMMER 2010 • SPECIAL EDITION 3

INSIDE SPRING/SUMMER 2010

Features
14 JERRY’S KIDS TODAY

23
Muscular Dystrophy Association still
striving for understanding and help

18 LEARNING TO ADAPT
Can assistive technology help
your child learn better?

20 YES, YOU CAN HAVE A
FAMILY VACATION!
11 tips for traveling with children
with disabilities

23 TESTING ON KIDS
Should your child participate in
10
medical research?

26 ANNABELLE’S STORY
One local girl shows how charity
walks can make a difference

29 iPHONE TO THE RESCUE
Nine nifty apps to help make
your life easier

20
Departments
6 EDITOR’S LETTER
Got gumption?

8 MAKING PROGRESS
The Miracle League, Autism ASK,
ONLINE ONLY
Check out our Special Edition Events
My Great Kid Radio and more
Guide in the Calendar section of
MetroParent.com. Find out about walks,
13 HELP DESK charity drives and events for families
Genetic counseling who care about special needs.

ON THE COVER: Josh, 12, of Troy; Autumn, 5, of Taylor; Zachary, 10, of St. Clair.
10
Photographed by Glenn Triest.


LOOKING FOR MORE
SPECIAL NEEDS
RESOURCES?

Visit the Special Needs section of
MetroParent.com.
Advice. Insights. All the Time.


EDITOR’S LETTER
By Julia Elliott

STAFF
Administrative
President and Publisher • Alyssa R. Martina,
amartina@metroparent.com
Vice President, General Manager • Alexis Bourkoulas,
abourkoulas@metroparent.com
Associate Publisher • Ruth Robbins,
rrobbins@metroparent.com

The greatness of gumption Controller • Melissa McCrimmon,
mmccrimmon@metroparent.com

O
Accounting Clerk • Jacklene Johnson,
ne of my favorite words in the English language is gumption. First, I just like the jjohnson@metroparent.com
sound of it. It’s jaunty and fun and sounds like something your grandpa would Office Manager • Tracy Connelly, tconnelly@metroparent.com

say. Editorial
But most important, I like what it stands for: initiative, resourcefulness, courage, spunk Managing Editor • Julia Elliott, jelliott@metroparent.com
and guts. Dictionary.com gives this sentence as an example of using the word gumption: Associate Editor • Kim Kovelle, kkovelle@metroparent.com
Interns • Samantha Morton, Charmaigne Washington
“With his gumption, he’ll make a success of himself.” Editorial Advisory Board
It’s kind of a lame sentence, but you get the point – gumption is good. It’s the kind of Colleen Allen, Henry Ford Health System;
trait that means you make the most of who you are, what you know and where you’re at Stacey Bockmann, MyGreatKid.com;
Carolyn Gammicchia, Association for Children’s Mental Health;
in life to be your very best. It means not settling for what other people tell you is your
Denise Gant, Muscular Dystrophy Association;
destiny. It means living YOUR life to the fullest. Stephanie Harlan, Autism ASK;
I think it’s a trait that a lot of kids with special needs have. It’s one their parents surely Anne M. Morris, Madonna University
embody as they strive to get every resource available to help their children. And it’s what Contributing Writers
Lindsey Bennett, Maggie Boleyn, Eric Czarnik,
we hope this issue of Special Edition has, too. Kristen J. Gough, Jessica Naiman
For one, the local kids on our cover display all levels of gumption. Despite a muscular
dystrophy diagnosis, Zachary bobsleds and is an “extreme” sports lover. At only 5 years Design
Senior Graphic Designer • Jose Zamudio,
old, Autumn already has a can-do attitude. And Josh took his passion for hockey so far he jzamudio@metroparent.com
and his team won a tournament. Read more about these winning kids and the disorder Junior Graphic Designer • Kelly Buren,
that will not keep them down on page 14. kburen@metroparent.com
You’ll also find articles that help those with gumption get every opportunity. Perhaps Intern • Stephanie Limon
Printer • Printwell, Taylor, Mich.
assistive technology could help your child do better in school. Read more about it on Contributing Artist
page 18. Maybe there is a medical research study that could help your child get some Glenn Triest
answers and possible solutions to problems he or she is having. Check it out on page 23.
Advertising/Marketing
Or it could be as simple as discovering an iPhone app that makes life a little easier. Read Sales Director • Alexis Bourkoulas,
about nine contenders on page 29. abourkoulas@metroparent.com
And last but not least, gumption is a major part of those involved with the myriad Senior Business Development Consultant • Linda Holland,
lholland@metroparent.com
walks and charity drives held throughout southeast Michigan. All of these events are
Account Managers
about making a change. Yes, many are seeking funds for a cure, which may be decades Pat Davis, pdavis@metroparent.com
away. But even in the smallest achievement, there is big help. Take little Annabelle Wendy Flusty, wflusty@metroparent.com
Murphy, who we feature on page 26. She was born missing her left forearm and hand. Michelle Gomez, mgomez@metroparent.com
Joanne Levine, jlevine@metroparent.com
Through her mother Michelle’s gumption, little Annabelle was fitted for a state-of-the-art Deborah Jean Richmond, drichmond@metroparent.com
prosthesis. Through the efforts of the local Kids Helping Kids walk, that prosthesis was
paid for. And through this story, this example of how charity drives really can make a dif- Events
Events Director • Lisa Grace, lgrace@metroparent.com
ference – perhaps in the future, and definitely in the now – we hope more people will be Assistant Events Coordinator • Marina Serafimovska,
inspired by the greatness of a little gumption. mserafimovska@metroparent.com
Interns • Christie Taylor, Charlotte Johnson

Distribution
Tracy Connelly, tconnelly@metroparent.com

Where to reach us:
22041 Woodward Ave., Ferndale, MI 48220-2520
Phone: 248-398-3400, Fax: 248-399-4215
E-mail: metroparent@metroparent.com
Web site: MetroParent.com
Special Edition is published twice a year by Metro Parent Publishing Group.

Get more at MetroParent.com! Articles and advertisements in Special Edition or Metro Parent do not
necessarily reflect the opinion of the magazine. We do not assume respon-
sibility for statements made by advertisers or editorial contributors. The
Visit MetroParent.com’s Calendar section for Metro Parent’s Special Edition Events acceptance of advertising by Metro Parent does not constitute an endorse-
ment of the products, services or information being advertised. We do not
Guide, which includes a list of charity walks and special needs events throughout south- knowingly present any product or service which is fraudulent or misleading.
©2009 Metro Parent Publishing Group.
east Michigan. Plus, find more special needs resources and articles at MetroParent.com. No portion of this publication may be reproduced in any way without
written permission of the publisher.


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MAKING PROGRESS

Angels
in the
Miracle League offers a home
Outfield

run for children with disabilities

I
nspiration is like walking up to Crain’s Detroit Business, is a longtime
bat. You have an idea, but you volunteer. He’s the Ernie Harwell of
have to follow through to get a The Miracle League, offering play-by-
grand slam. play of the action on the field.
And Steve Peck did just that. He usually announces the first two
HBO’s show Real Sports with Bryant games on Saturdays. Trying to give
Gumbel did a documentary in 2001 the effect of a professional stadium,
about a community in Georgia that Doucette really plays up the enthusi-
began a program in 1998. The program asm, playing from a catalog of 1,000
allowed children who are physically or songs and sounds effects.
mentally challenged to play baseball. “I have so much fun that I am
After watching the show, Peck was shocked that I haven’t been arrested,”
inspired to start The Miracle League of he quips.
Michigan. Doucette is fulfilling two dreams
The league is now one of hundreds in one while volunteering for The
of similar organizations across the Miracle League.
country that give kids with disabilities “Announcing the games allows me
the chance to play some ball, soak up to give back to the community. Use
some sunshine and be a regular kid. skills that had been dormant since
Peck received funding from Walmart I left broadcasting,” he says. But
to build a specialized field just for it also allows him to participate in
the league, and the city of Southfield something that he wishes had existed
donated land to build the field on. decades ago when he was growing up.
Kids with autism, Down syndrome “So that I could have been a play-
and other disorders and disabilities that er,” he says. “I was born with cerebral
impair vision, walking, talking, etc., are palsy, and had several foot and leg
encouraged to join. operations as a child.”
“You don’t see the disabilities; you He tries to set an example by
see the abilities,” says Peck. showing you can overcome a dis-
In the non-competitive league, ability and live a full life. Plus he gets
each child is paired with a volunteer inspired, as well.
“buddy” to help him or her get to the “I’ve seen players go from a wheel-
bases. Every child gets a chance to bat, chair, to a walker, to crutches or
run the bases and cross home plate. canes, to walking unaided except for
There are no outs. braces, in a season or two,” Doucette
The league also offers competitive says.
play where outs and other traditional The league truly is a miracle.
baseball rules are fair game. The “bud- To find out more information on
dies” are not part of competitive play, The Miracle League, such as how you
and this league is for “high function- can donate, volunteer, or join, visit
ing” players. www.michiganmiracle.org.
Vic Doucette, a copy editor at
– Samantha Morton


Temple Grandin Looking for help with autism?
speaks in Detroit Just ASK
Offers words of wisdom to
T
wo metro moms want you to know autism, specializes in working with autistic
families coping with autism about their new business, Autism
ASK. The acronym ASK stands for
teens and adults, a group she says is
deeply underserved. And Harlan, a social

T
Advocacy, Support and Knowledge – three worker whose 10-year-old son Justin
emple Grandin is arguably the most
things Stephanie Harlan and Beth Kimmel used to be autistic, sees parents and fam-
accomplished autistic person in the
hope to provide to individuals with autism, ilies who need counseling or support.
world. She’s an author, an inventor, a their families and the community at large. In addition, they allow other profes-
doctor and, most important, an inspiration. Autism ASK wants to be the “one-stop sionals to use their office space as part
She’ll also be the keynote speaker at this shop” for autism information in southeast of their mission to make autism services
year’s Living With Autism Workshop, pro- Michigan. convenient and accessible to everyone.
“We’re hoping we Harlan and Kimmel will
duced by Metro Parent and sponsored by
can be that place even travel to clients if
Henry Ford Health System.
where you can necessary – a service
The workshop, on Thursday, April 29, at find a real sense of very few provide, says
the MET Hotel in Troy, also includes an array community,” says Kimmel. The store
of seminars taught by local professionals Kimmel. “There are so many places that has hard-to-find merchandise for sale
and experts to help families and educators have something to do with autism, but and even a consignment shop for used
there really isn’t any central hub.” therapy materials.
get tools and information to better deal with
Curious about a gluten/casein-free diet The company website is also a rich
autism. It will pinpoint strategies for coping
for your autistic child? Need an art thera- source of information. “People can look on
with the challenges of raising a child with pist? Looking for a speaker to talk to your our website and get all they need and find
autism. group about autism? Autism ASK is armed out what’s happening in the autism world,”
Grandin, whose life was chronicled in the with information on everything autism, and says Harlan. “We’re both parents of kids
recent HBO film starring Claire Danes, will will direct you to groups, doctors, social with autism ourselves and know what it’s
workers and organizations that fit your like to not have a clue what to do or where
augment those lessons with her own story of
needs – for free. to go.”
overcoming autism to achieve and succeed.
Autism ASK also provides specific ser- For more information, visit www.autism-
For more information about the workshop vices directly out of its Waterford location. ASK.com or call 248-618-1-ASK (1275).
or to register, visit the MP Events section of Kimmel, whose 18-year-old son Alex has
MetroParent.com. – Jessica Naiman
– S.M.

Now showing: sensory-friendly films
F
or parents with children ence for families through their from typical movie screenings. views are shown before the films.
affected with autism or Sensory-Friendly Films program. The lighting in the theater is Get more information at par-
other disabilities, going to Each Saturday of every month, turned up and the sound of the ticipating AMC theatres: AMC
the movies can be difficult. a new movie is shown at 10 a.m. film is turned down to make the Livonia, AMC Gratiot 21 in Clinton
But not anymore. The movie is played in a theater experience more comfortable for Township, and AMC Forum 30 in
AMC Entertainment and the where children are welcome to kids. Sterling Heights. Or visit
Autism Society have teamed up dance, walk, talk or sing as the Parents can bring in their own www.autism-society.org or
to bring a wonderful movie experi- movie plays, which is a departure snacks if they prefer, and no pre- www.amcentertainment.com/sff.

– S.M.


MAKING PROGRESS

A cause close to the heart
It’s My Heart-Metro Detroit offers support to those with
congenital heart defects.

M
ary Brown was just like any other affected by them each year. That’s approxi-
expectant mother, preparing her mately one out of every 125 to 150 babies,
baby’s room and growing more according to the American Pregnancy
eager to welcome her newborn to the world. Association (APA).
But soon after the birth of her child, Brown According to the APA, teens and adults
was faced with a difficult reality; her son had can have the defect, but it may not show up
two congenital heart defects (CHDs). at birth.
After receiving open-heart surgery to cor- That’s why It’s My Heart-Metro Detroit is
rect them, Brown realized that CHDs affect even starting a teens and young adult support
numerous people. She started It’s My Heart- group for those affected by CHDs.
Metro Detroit, a chapter of the 15 It’s My Surgery is often the best option to correct
Heart nonprofit organizations throughout the the defects. The organization supplies comfort
country. bags to surgical patients and families before
“Bringing awareness to the community in the operation.
general and providing support to people who The comfort bags includes items like
are affected by it (CHDs) is our goal,” says “stuffed animals for the patient, coloring
Brown, the president of the chapter. books, activities for parents, like Sudoku, to
The organization offers supports groups to do while waiting through the operation, fact
families/parents to find out more information about CHDs and information,” says Brown.
about CHDs and meet other families/parents For anyone who would like to find out
going through the same situation. more information or join, help and support
Most people don’t know that heart defects the efforts of It’s My Heart-Metro Detroit,
are among the most common form of birth visit www.itsmyheart.org/metro-detroit or
defects and more than 32,000 newborns are email metrodetroit@itsmyheart.org.

– Samantha Morton

Weekly radio show offers help to parents

T
urn up the volume on tion, special needs, nutrition, “We’ve tried to find out as ney, author and children with
this new radio show for health and wellness, discipline much information as we can, special needs advocate Wayne
parents hosted by hus- and parenting tips, with a fre- which led us to the radio show
Steedman of Wrightslaw.
band and wife Steve and Staci quent focus on special needs to share with others,” says Staci.
Podcasts of the show are
Bockmann. The My Great Kid issues like ADD/ADHD, autism, “We thought, ‘How can we get
available at www.mygreatkid.
Radio Show airs live 8 a.m. to 9 dyslexia, vaccines, advocacy, this information out to other par-
a.m. Sunday mornings on WAAM social skills, nutrition, education ents?’” com, together with a regularly

Talk 1600 AM, which services the challenges and more. The show is a combination updated blog and an extensive
Ann Arbor/Detroit area. The Bockmanns of Livonia of expert interview, opinion and
email database. You can get free
The show is all about parents have gathered bundles of infor- listener call-in.
downloads on iTunes or search
helping parents and revolves mation over the years parent- Show highlights include the
for My Great Kid on Twitter,
around topics including sensory ing their 11-year-old son with weekly Wrightslaw IEP Tip of
the Week, presented by attor- Facebook and iPhone.
integration, reading and educa- autism.
– Jessica Naiman

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LOOKING FOR MORE
SPECIAL NEEDS
RESOURCES?

Visit the Special Needs section of
MetroParent.com.
Advice. Insights. All the Time.


HELP DESK

By Lindsey Bennett,
MS, CGC

What if doctors
suspect genetics?
DON’T PANIC. YOU CAN GET HELP AND
ANSWERS FROM GENETIC COUNSELORS

T
he concept of genetics has increasingly phy should do is to seek help from a certified
been a part of our lives since the dis- genetics counselor or clinic specializing in the
covery of the genetic code, but the con- discipline. One such clinic is the Muscular
cept remains challenging for many to grasp. Dystrophy Association (MDA) clinic located
Medical strides are continually being made at the Children’s Hospital of Michigan. It
within the field, yet they make it even more offers comprehensive medical services utilizing
difficult for parents and health care providers a multidisciplinary approach with expertise
to keep up. from physicians, nurse practitioners, physical Genetic conditions can affect the entire
What are parents to do when the pediatri- therapists, occupational therapists, dieticians family. Part of the role of a genetic counselor
cian suspects their child has a disease or dis- and genetic counselors to treat a variety of is to help families cope with the range of
order that may be genetic? Let’s look at that neurological disorders. emotions that may be experienced when liv-
scenario as it applies to muscular dystrophy Genetic counselors at the MDA work with ing with a genetic condition or having a child
to get an idea. Numerous clinical trials are the family to construct a genetic history to with a genetic condition. These counselors
emerging within the context of muscular dys- identify how a particular condition is passed also have access to resources, including sup-
trophy, and many are dependent on knowing from one family member to another. This port groups or networks that may be benefi-
the genetic basis of the condition. family genetic history can also help determine cial to the family.
The first thing a parent of a child diag- if other family members are at risk of getting While there are many benefits of genetic
nosed or suspected of having muscular dystro- or passing a condition to others. Family his- testing, there are also risks and limitations,
tory, along with a clinical exam, can help lead which should be discussed with parents.
to a diagnosis that may not be immediately Parents should also be aware that genetic test-
apparent. ing is costly and may not be covered by some
Genetic When appropriate, this history can also insurance care providers.
help guide genetic testing. If the diagnosis is So what should parents do if their child
counselors are known, genetic counselors can assist families is diagnosed with or suspected of having a
in understanding a condition’s genetic cause genetic disorder or condition? Breathe, and
available to guide – and even offer information about potential remember that you are not alone. Genetic
inheritance and chance of recurrence. In some counselors are available to guide you through
you, so you’re cases, if no diagnosis has been made, counsel- the process, so you are informed and can do
ors can help parents understand why. the best for your child and your entire family.
informed and can Anxiety and apprehension are common Contact the MDA at 586-274-9000 to sched-
if a doctor decides that genetic testing is the ule an appointment. To find a genetic counselor
do the best for best option for the child. Helping parents in your area, check out www.nsgc.org.
understand the importance of testing and the
your child and your significance of the results, along with guidance – Lindsey Bennett, MS, CGC is a certified
from genetic counselors to help navigate them genetic counselor at MDA-Children’s Hospital of
entire family. through the process, often helps alleviate the Michigan.
anxiety.


Jerry’s Kids

Today By Kristen J. Gough

For 45 years, comedian Jerry Lewis has

hosted a Labor Day telethon for muscular

dystrophy to raise money and

awareness for the disorder that

affects some 30,000 people

in the United States. And

though many lives have

been helped, there

is still confusion

about the condition,

little awareness of

its symptoms and an

ongoing need for

help.


T
oday, one out of every 3,500
boys will have Duchenne
muscular dystrophy (DMD),
the most common – and most severe Autumn Persinger Zachary Davis
– form of the disorder. Despite the
Josh Cueter
high incidence of Duchenne, many At age 5, Autumn likes to With a mischievous smile, Josh’s sport of choice is
people would be hard-pressed to color and play Littlest Pet Shop. Zachary, 10, dons his racing gear hockey. He plays year-round on
describe the condition. But they Her spinal muscular atrophy and rides a four-wheeler in his two teams – one that travels.
could probably readily recall one of keeps her in a wheelchair, but own division of motorcross. He His mom, Kris, says he started
muscular dystrophy’s biggest advo- she’s still ready to move. Her participates in a special needs Wheelchair Hockey in late 2008.
cates, Jerry Lewis.
mom hesitated taking her to ride with other kids. He has Josh, a seventh grader, has
Since 1966, Lewis has hosted a
a McDonald’s PlayPlace. But Duchenne muscular dystrophy. Spinal Muscular Atrophy.
Labor Day telethon to raise money
to support research and help families Autumn didn’t mind, pointing Zachary loves sports – espe- Kris says hockey has “given
dealing with muscular dystrophy out there were parts for “walk- cially extreme sports, notes (Josh) the confidence to go out
(he’s been involved with fundraising ing kids” and “wheelchair kids.” mom Tori. During the February and try something new and not
efforts since 1951). In its first year, Every night, Wendy or her Winter Olympics broadcast, he let his physical needs get in the
the telethon raised over $1 million. husband, Brian, help Autumn loved watching high-speed bob- way.” After a year, he was asked
Last year, that figure reached just over with her equipment. Braces sledding. He participates in the to join the Michigan Mustangs.
$60 million. The telethon’s stage has attach to her legs both at the Special Olympics, Harley events, They play three teams (10
played host to a who’s who in music calf and thigh. A breathing tube MDA programs like summer games a season) and then travel
and Hollywood. Diverse talents like helps her sleep, and a feeding camp and more. His big brother, to tournaments. Last summer,
Celine Dion, Michael Jackson, John
tube provides nutrients. Dominic, age 14, is one of his it was North Carolina (his team
Lennon and Led Zeppelin are just
Wendy recalls asking Autumn biggest fans – and best buddy. won!). This year, Toronto.
a few of the many who’ve lended
their names and fame to support The once if all this stuff was a lot to “He’s full of life,” says Tori. Josh also does adaptive skiing
Muscular Dystrophy Association deal with. Her daughter said, “He’s a very, very special little and plays the clarinet. “He basi-
(MDA) and Jerry’s Kids. “It’s kind of a headache, but I boy. He’s not letting anything cally does what every other 12
This year, the telethon celebrates know it makes me feel better.” hold him back.” year old wants to do,” says Kris.
its 45th year – an important mile-
stone for an effort to not only gener-
proteins, or building blocks, to support and main- during their first few years of life, and then begin
ate money for a worthy cause, but
tain the growth of muscle tissue in the body. As a to exhibit signs of muscle problems. For example,
also to put names and faces to a dis-
result, the muscles begin to weaken and deterio- a child might have difficulty walking or getting up
ease that is so often misunderstood.
rate as a child grows older. Some forms, like BMD from a sitting position. The child will also walk
and DMD are more common in boys. on her toes instead of the heels of her feet and
Defining MD Muscular dystrophy is sometimes confused have a tough time climbing stairs. Often parents
Duchenne is just one form of mus- with Amyotrophic Lateral Sclerosis (ALS), or approach their child’s primary care provider with
cular dystrophy. There are several. A Lou Gehrig’s Disease. This disease also leads to these concerns. The provider evaluates the child
milder-but-less-common form, which an inability to control muscle movement, but the and then, based on his or her findings, will refer
is similar to Duchenne, is called cause is different. With ALS, the brain’s signals the child to a specialist.
Becker muscular dystrophy (BMD). to the muscles become weaker over time, so that Dr. Gyula Acsadi is such a specialist. As a pedi-
The first symptoms develop later in brain can’t control muscle movement. The MDA atric neurologist, he’s co-director of the Muscular
childhood. also actively supports research efforts to find better Dystrophy Association Clinic at Children’s
According to the National Institute treatment options and cures for ALS. Hospital of Michigan. He notes the average age
of Neurological Disorders and Stroke In fact, Denise Gant, health care services coor- when kids are referred to his office is 4.
(NINDS), the term muscular dys- dinator of the Michigan MDA, says the organiza- “But the diagnosis could be made much ear-
trophy “refers to a group of more tion services a total of 43 neuromuscular diseases, lier,” says Dr. Acsadi, who believes there needs to
than 30 genetic diseases that cause including muscular dystrophy, amyotropic lateral be more awareness of the signs and symptoms. At
progressive weakness and degenera- sclerosis, spinal muscular atrophy and others. his office, kids get an extra physical examination
tion of skeletal muscles used during and blood test, which looks at the levels of certain
proteins, to confirm the diagnosis.
voluntary movement.”
MD is a genetic disorder where the
What are the signs? And even once a specialist has determined that
Children with MD usually develop normally a child has MD, additional evaluations and tests
body doesn’t produce the necessary


Jerry’s Kids
are needed to pinpoint which of the many
forms the child has. Understanding the form
helps doctors determine how to treat a child.
Currently, there are three clinics in the
metro Detroit area that treat both children and
adults with muscular dystrophy: the University
of Michigan Children’s Hospital, the Wayne
State/Harper University Hospital, and the
Michigan Institute for Neurological Disorders
in Farmington Hills. Around 2,500 people
seek out care in these clinics each year.

Treatments
Children with MD receive both medical
care and physical therapy to keep their muscles
as strong and flexible as possible. Doctors may
prescribe steroids to help slow the rate of mus-
cle deterioration. But these drugs can cause
weight gain, which can lead to further strain
on the child’s weakened muscles, so doctors
carefully monitor the child’s development.
Physical therapy and braces can help a
child’s muscles from becoming locked into
position. As a child’s muscles weaken, it
becomes harder for the muscles to move and
the joints to function, potentially leading to
what’s called joint contractures. Braces placed
in the proper position can support the muscles
and joints and stave off contractures.
Spinal surgery may also be required to cor-
rect a curvature of the spine, known as scolio-
sis. The muscles of the back may not be able
to properly support the weight of the spine, so
surgery can help straighten it, making it easier
for the child to sit up straight and breathe.

What life is like
MD may barely affect one child’s lifestyle,
while in more severe forms, a child may be
confined to a wheelchair and experience other
physical difficulties.
Dr. Acsadi says there’s a misconception
that muscular dystrophy only affects skeletal
muscles. But the disorder can also weaken
muscles like the heart and those within the
gastrointestinal system. Breathing can be com-
promised; some children may require the help
of a ventilator to breathe properly.
Children with muscular dystrophy may
experience learning delays or disabilities, too.
Many families with children with muscular
dystrophy and related neuromuscular disorders


Researchers and doctors are making
strides every day toward increasing a
are able to tap into support networks and pro- person with muscular dystrophy’s life
expectancy and quality of life.
grams that allow their children to participate
in sports, camps and more. The MDA actively
supports these organizations and tries to help
families find the kind of programs that will
not only help their child’s physical develop-
ment, but also help them just be kids. years of age. That’s a major improvement.” He Currently various research facilities are work-
points out that doctors work in a multi-disci- ing on a variety of treatments including drug-
pline approach now in treating kids with MD. and cell-based therapies, gene replacement and
Is there a cure? Instead of just receiving care from one physi- gene modification therapies, and more.
The short answer is no. But the more com- cian, a team of specialists including therapists The hope, of course, is that there will even-
plete answer is that researchers and doctors are are often involved in a child’s care. tually be no need for Jerry Lewis’ perennial
making strides every day toward increasing a Even seemingly small steps equal huge gains muscular dystrophy telethon.
person with muscular dystrophy’s life expec- when it comes to treating muscular dystrophy. “We’d all like to see a day when we have a
tancy – and even their quality of life. “In the Dr. Acsadi explains that the MDA has been cure,” says Gant. “But until then, we have to
past 10 years, the standard of care for these instrumental in putting together a database of do whatever we can to give support and help
children has evolved,” says Dr. Acsadi. children with MD, specifying their particular to those with MD, so they can live the best
For example, in the past, kids diagnosed form. With this database, researchers can reach lives possible.”
with DMD were often told they had a life out and find people to participate in clinical
expectancy of 18 to 19 years. “Today, about trials of new drug therapies more easily – and – Kristen J. Gough is a mother of three and
30 percent of those with Duchenne reach 30 quickly. (See article on studies on page 23.) former Detroiter who now lives in Colorado.


Learning to
Adapt Assistive technology is
leveling the educational
playing field for kids with
special needs. Could it
help your child?
By Eric Czarnik

B
ackpacks, pencils, books. For decades, technology for the ABCs, but we also use Bloomfield Hills Schools speech and language
kids have packed such school supplies adaptive technology for daily living activities.” pathologist Diane Abrahamian says.
before heading to class. But for some Gittleman says A.T. is a common part of “Many of our students need help with
young metro Detroiters with special needs, academic life at Wing Lake, which is managed accessing their environment,” she says. “Often,
it takes a special set of educational tools by Bloomfield Hills Schools but serves switches are used with our students to help
to succeed. And even while many school students from ages 3-26 from districts across them have a point of control. They may be
districts are struggling to balance budgets in Oakland County. The center helps people with able to move their arm or their hand.”
the current economy, they’re acquiring or severe physical or mental disabilities, she says. According to Abrahamian, switches tend to
borrowing the right equipment to help kids make life easier for students in wheelchairs or
learn, grow and conquer their limitations. Tech and tools those with conditions such as cerebral palsy.
Assistive technology, or A.T., comes According to Wing Lake instructors, one of When activated by a child’s finger or joint,
in all shapes – from everyday utensils to the most versatile forms of A.T. is the button the switch can turn on computer programs,
cutting-edge computers, says Barbara Victor- switch, which can simplify complex tasks for appliances or toys.
Gittleman, an occupational therapist at Wing students with limited mobility. Switches often And switches on single message
Lake Developmental Center in Bloomfield come in button or toggle form, but they often communication devices can help nonverbal
Township. “We not only use adaptive can be modified to suit a student’s needs, students express themselves with programmed


To learn more about assistive technology, visit Michigan’s
Integrated Technology Supports at http://mits.cenmi.org. To
further learn about products that are available for special needs
LEARN kids, visit www.ablenetinc.com or www.sammonspreston.com.
MORE
phrases like, “More, please.” A pressed button
or picture on the board often triggers a voice
or phrase. “You can hit one switch, and a
message goes out,” Abrahamian says. even include pencil grippers or spell checkers. education director, says assistive technology
Wing Lake educators say they’re using “I’ve got a student who’s visually impaired has found ways to work around more severe
Promethean interactive whiteboards, too. in a drafting class, so we have to order a bigger disabilities over the last 10-20 years.
The high-tech machines can send computer monitor for him,” she says. Gabe says her district is currently teaching a
images onto the whiteboard, which creates an Brown says Macomb County uses a student who became deaf in high school. “Her
excellent focal point for visual learning, says standard individualized education plan (IEP) first language was English talking, so when
Wing Lake speech and language pathologist form that includes a section to discuss the she went deaf … she had never learned sign
Karen Natoci Florka. need for an assistive technology evaluation. language in her life,” she says.
“More than half of our students have visual From there, the school could examine the So the district installed software on
impairments, and the size of the Promethean student to determine whether any challenges the student’s laptop that interacts with a
boards helps. We can magnify pictures to a the child has could be solved with a device. microphone near the teacher. When the
huge size, so that all students can be exposed Brown notes that sometimes, a teacher may teacher speaks, the software translates speech
to symbols in this way, at the same time.” take the initiative on employing simple A.T. into text and images of sign language. “That’s a
Florka says the school also combines solutions, such as offering a pencil gripper to real advance in technology,” Gabe says.
switches with the whiteboards, so the students a student with a writing problem. However,
can turn the pages on an ebook displayed on Brown says, the district knows the importance Equal opportunity for all?
the board. The process rewards students with of keeping all parties in the loop, particularly The digital age and the Internet have leveled
more control over their learning. when dealing with the education of a special the playing field for struggling students by
“For students who have profound needs child. giving them more options than just a hard-
orthopedic impairment and have difficulty “The parent is alerted,” Brown says. “Parents copy textbook, says Judy Arkwright, an A.T.
moving to operate a switch, it is wonderful and teachers communicate a lot.” consultant who is associated with the Wayne
that we can provide such huge feedback for Carla Harting, principal of special County ATRC.
the tiniest of movements that they are learning education at Wyandotte Public Schools, Arkwright says children who have reading
to control,” she says. says her district has no problem matching problems may now use digital literacy software
But A.T. doesn’t have to involve computers. special needs students with A.T. She said that audibly reads computer text from
For instance, students who struggle to grasp it often borrows materials from the Wayne electronic books or the Net. Websites such as
objects may use modified utensils, like cups County Assistive Technology Resource Center YouTube and portable devices like the iPod
with built-in handles or plates with suctioned (ATRC). Touch also build new avenues of learning.
bottoms, Gittleman says. Or it may be as The resource center, located in Lincoln “The host of digital tools is endless,”
simple as providing jumbo-sized crayons or Park, is like an A.T. library complete with Arkwright said. “We need to step back, review
weighted pencils designed to allow easier grip. representatives that teach people how to use what our students need to learn, define the
These tools are often as helpful as the most them, Harting says. She adds that the teacher barrier to learning and access the tools to
state-of-the art equipment, she says. “Not and therapists are usually the people who support the learning process.”
everything has to be on the very high end.” make the recommendation to seek devices But despite the advantages of the Internet
from the resource center. and digital literacy tools, Arkwright says
“The parent would say, ‘My child is having
How to get it school districts still vary in their ability to help
this type of problem,’ and then we look at special needs children take advantage of A.T.’s
Despite the plethora of adaptive educational
what we can do to help,” she says. maximum potential.
tools out there, experts agreed that parents and
After the school requests a device, the “It is not just a matter of infrastructure and
teachers must be aware and willing to use the
resource center’s representatives may meet the tools,” she says, “but the support systems to
technology in order for it to do any good.
special needs student. If a trial shows that the guide educators across time on how to use
Christine Brown, director of student
technology is helpful, then the district would the tools in authentic application in their
services at Macomb County’s Lakeview
ask to loan it, she says. classrooms.”
Public Schools, stresses that A.T. regimens are
Like Wyandotte, Dearborn Public Schools
highly individualized. She also says “assistive
borrows equipment from the Wayne County – Eric Czarnik is a freelance writer from
technology” is a broad term, because it can
ATRC. Kathleen Gabe, the district’s special Madison Heights.


You Can Have a
Yes,
Family
Vacation! By Kristen J. Gough

P
lanning on taking a trip with your children? If so, you no doubt have
Enlist the help of your young
a checklist written or in your head of what you need to do before you 1 travel agent.
go. Extra diaper wipes? Check. Favorite teddy bear? Check. But for Maybe the best part of a vacation is the
families traveling with children with disabilities, the checklist is lengthier. The anticipation, and that may be even truer for
a child with special needs. If your child is
intricacies of planning ahead with the proper medications and equipment such old enough, let her do research online about
as ventilators and wheelchairs may make running away to some island para- your travel destination. Print out pictures and
information about the spots that you’d like to
dise seem impossible. Yet more and more travel providers – from hotel staff to
visit. For younger kids, check out books from
resort managers – are making travel for the disabled easier. Their efforts have the library about the locale and read them to
them at night. And don’t forget to take plenty
been spurred on not only by tourism dollars, but also through additional regu-
of pictures during your vacation – you can
lations from the U.S. federal government that ensure those with disabilities are chose one or two images to enlarge to poster
able to have the same opportunities as those without – even if that opportu- size so that your child can remember your
special trip.
nity is a trip on a winding attraction at a favorite resort destination.
Here are some tips to keep in mind as you make your travel plans.


2 Pack a ‘survival’ kit.

Schedule an appointment with your child’s
doctor well in advance. In fact, you may want
to consult with the pediatrician about the best
places to travel and even ways to travel. You
may ask the pediatrician or other health care
provider to send a note explaining your child’s
disabilities. Nancy C. Hemenway, a Virginia
mom of an adopted child who suffers from
post-traumatic stress disorder, carries such a
note with her – just in case. New situations
can trigger her 9-year-old to have loud sob-
bing episodes or other emotional outbursts
that might confuse or concern bystanders.
Fill any of your child’s prescriptions and
carry a copy of that signed prescription if
you’re taking the medication on an airplane.
Keep the meds in the original packaging.
Along with your child’s usual medications, ask
your doctor’s recommendations for over-the-
counter medicines that might come in handy,
like anti-nausea, anti-diarrhea, fever reducers
or even headache medicines. Again, keep these
in the original packaging.
Your survival kit should also include some
handy distraction toys like paper and pencil,
Play-Doh or whatever sort of small items you
think would hold your child’s interest if you
happen to have unexpected delays.

3 Keep it cool.

If your child has prescriptions that require
refrigeration, make sure to check that your
hotel room has a refrigerator. Many theme
parks will also make refrigerators available to
patrons who need them. Call ahead to find
out where you can store prescriptions on site.

4 Become an airline expert.

Plane travel presents several challenges. To
keep difficulties at a minimum, explain when
you purchase your ticket that you are traveling
with a child with disabilities (this is not neces-
sarily required but can be extremely helpful).
If your child is in a wheelchair, let the airline
know that you’ll require assistance getting
your child on and off the aircraft, says Kleo 10

Most big theme
Family
Vacation! parks and resorts
offer services
King, senior vice president of accessibility ser- a resort hotel. Added bonus – many Florida
vices at Able to Travel, a travel provider associ- homes also have a pool! Be aware, though:
ated with United Spinal Association. designed to make You should work through a reputable source
To board, you should be able to take the for renting a home. Ask a travel agent or other
wheelchair to the gate – and even sometimes
right up to the aircraft. Once at the airplane,
traveling with kids travel professional for recommendations.

you’ll need to have the wheelchair stowed.
Manual chairs can usually be stored on the with disabilities 10 Give Mickey a head’s up.
airplane. Heavier power chairs need to be
placed in the cargo area.
Airlines usually offer helpful tips about
more convenient. Most big theme parks and resorts offer ser-
vices designed to make traveling with children
how to check your wheelchair during a flight. with disabilities more convenient. Zoraya
Continental Airlines suggests having writ- Suarez, a spokesperson for Walt Disney World
important, if anything goes wrong with your
ten instructions about various items on your Resort, explains that guests can call ahead
trip, the representative can step in on your
device; that assists airport personnel as they and let Disney personnel know what kind of
behalf to help. Able to Travel charges $25 per
load and unload it. Or design your own (visit services they may need, from special dietary
person to arrange trips.
www.continental.com and search for “wheel- concerns to wheelchair equipment and more.
chairs” to find a helpful form). Fill out as “For children with autism, we have alterna-
much as you can and attach the card to the
device. Make a copy for yourself, just in case. 7 Expect some hassles.
tive park entrances, so they don’t have to stand
in crowded queues,” says Suarez. Hearing-
Keep in mind that your child’s wheelchair impaired children can request interpreters.
Delays, frustrations, inappropriate ques-
is not considered checked baggage. You can’t Suarez also points out that almost half of the
tions or comments. No matter where you
be charged extra to have it stored. rides at Disney World have been designed to
travel, there’s bound to be a few hiccups.
be wheelchair accessible. She recommends
Instead of getting upset – or planning for the
parents call 407-824-4321 with questions.
worst – figure that a few difficulties are part of
5 Find the right security. the adventure. If you keep a smile, chances are
They should ask for “Guest Relations” and
explain their child’s particular needs.
the rest of your family will, too.
Children in wheelchairs don’t have to go Don’t worry if you don’t remember to
through regular security scanners, says Kleo. contact the park before you arrive; ask at the
Instead, she recommends you ask the screen-
ing representative for a “private screening.” If
8 Break it up.
check-in gate to find out what accommoda-
tions are available.
the airport staff person voices an objection, An all-day marathon tour of a quaint tour-
ask to talk to his or her supervisor, who often ist town may sound good on a travel site, but
has more training and familiarity accommo-
dating those with special needs.
children need breaks. And, depending on your
child’s special need, he or she may need even 11 Be realistic.
Kleo points out that she’s also worked with more breaks. Plan down time into your sched-
clients who’ve had metal plates placed in their You might want to seek out additional tips
ule. For example, if you’re going to a theme
body to treat certain conditions. She suggests and guidance from support groups or other
park, play for an hour or two and then return
they carry a doctor’s note explaining the sur- organizations that service those with your
to your hotel and watch a movie. Go back
gery or metal part to alleviate any confusion. child’s particular needs. But keep in mind that
later in the day for another hour or two.
no matter how much planning you do, no
trip is perfect. The whole point of traveling is

6 Get professional help. 9 Rent instead.
to create lasting memories with your children.
Sure, your plans to play outdoors might
get stalled by unexpected rain showers, but
Even if airline or hotel websites include Hemenway has found renting a house is
you’ll also have unexpected delights. Perhaps
thorough descriptions of disabilities services, better option for her family, versus checking
a favorite cartoon character will just happen
harried staff or uninformed personnel may in to a hotel. A house provides more space –
to pass by and stop for a photo while you’re
not understand how to meet the needs of trav- and a kitchen – which makes traveling with
standing in line for one more trip on “It’s a
elers with disabilities. Several travel agencies, her disabled daughter and her service animal
Small World.”
including Able to Travel, can help arrange much easier. A home can be more relaxing
trips for you and your family. These represen- than a cramped hotel room. Plus, Hemenway
– Kristen J. Gough is a mother of three and
tatives are well-acquainted with what services says she’s able to find deals for four-bedroom
former Detroiter who now lives in Colorado.
to ask for – and how to ask for them. Equally homes that meet or beat the cost per night in


It’s a scary proposition to allow your child
to participate in a medical treatment study.
But some parents see more rewards than
risks as they search for help and hope for
their kids with special needs. Could tak-
ing part in a medical research study be an
opportunity for your child?

By Maggie Boleyn, RN

T
he idea made Kristen Cummings sick.
Could she really allow her daughter to participate in a
research study that could potentially treat her symptoms of
autism? What if there were side effects? What if it made things worse?
“Then I kind of realized that it couldn’t get much worse,”
Cummings says. “What’s worse than having no options?”
For Cummings, the study conducted at Wayne State University was
a ray of hope. And even if it didn’t help her daughter directly, it could
help someone else’s child down the line.
“Isn’t this how all the great breakthroughs came to be?” she says.
“Without medical research, without people willing to put themselves
out there to be a part of looking for a solution, where would we be?”
Over the years, medical science has made great strides, coming up
with drugs to treat heart disease, high blood pressure, diabetes and
more. And that’s largely due to scientific research performed to test
new drugs and medical methods. Yet most research only involves adult
participants. Medicines and treatments are often not tested on children.
Until the last decade, kids were rarely included in studies of medical
drugs and treatments. As a result, much remains unknown about how
children respond. At nearly half of medical visits, kids are given a medi-
cine and 70 percent of those medicines have only been tested in adults.
“We had the peculiar situation of demanding a very high level of
proof before a product was marketed for adults, but then having it
used ‘off-label’ in children,” says Dianne Murphy, M.D., director of the
Office of Pediatric Therapeutics at the Food and Drug Administration.


This means the FDA didn’t have specific stud- may be considering whether to enroll a child. WSU. “We had no clue what was wrong with
ies on how the product did or did not work in Some doctors say that studies specifically me and how to fix it. By doing all the studies
kids, what kinds of reactions they might have, geared toward special needs kids is an area and interviews, I can be helping at least one
or what the proper dose would be. that needs more attention person, which makes it all worthwhile.”
“There is definitely a scarcity of research Research studies test how well new medical
being done for children with special needs,” approaches work. Each study answers scien-
says David R. Rosenberg, M.D., professor tific questions and tries to find better ways to
In 2003, the Journal of Pediatric and chief of Child Psychiatry and Psychology prevent, screen for, diagnose or treat a disease.
Hematology and Oncology reported there are at Wayne State University and Children’s Clinical trials may also compare a new treat-
frequently “enormous problems recruiting and Hospital of Michigan. He said there is an ment to a treatment that is already available.
selecting eligible patients for clinical research “urgent need” that is gaining increased atten- “Participating in clinical research provides
projects,” particularly studies involving kids. tion. Rosenberg is the director of obsessive- parents an opportunity to learn much more
That’s because parents are sometimes compulsive disorders (OCD) study. about their child’s condition and options,”
unwilling to allow their children to take part LaChance says. “Part of the informed consent
in medical research, fearful their kids may be process is to discuss treatment options other
harmed or used as “guinea pigs,” according to than the research study. Also, a lot of time in
a report issued in 2008 by researchers at the Why should parents involve kids? “Having research studies with children is spent on par-
University of Michigan Health System. your child participate in clinical research is ent and child education.”
The U-M report also found a large gap one way to help with the availability of medi- By taking part in a trial, your child could
between the proportion of parents who want cations the FDA approved for children,” says be offered a new treatment that may or may
safe medicines for their children, and those Jenny LaChance, a certified clinical research not be better than those that already exist.
who are willing to allow their kids to partici- coordinator specializing in pediatric clinical “Many of our parents are grateful to know
pate in studies. Although more than three- trials at Hurley Medical Center in Flint. that their child can receive ‘state of the art’
fourths of parents surveyed want only FDA- “I think the greatest and most important therapy when participating in such clinical
approved medicines, just one-third are willing benefit from participating is the satisfaction trials,” says Gregory Yanik, professor at the
to have their kids take part in research that that I am helping many people, so that they Department of Pediatrics and Communicable
could produce medicine safety information. do not have to go through all the pain and Diseases at C.S. Mott Children’s Hospital at
“We know that parents, quite reasonably, suffering that my family and I went through,” the University of Michigan Health System.
may be concerned,” says Matthew M. Davis, says Angela Campau, who participated in Your child can also help the medical com-
M.D., associate professor of general pediatrics clinical studies conducted by Rosenberg at munity understand how the treatment works
and internal medicine at the U-M Medical
School and director of the National Poll on
Children’s Health. “Parents, however, may not
realize how pediatric research has saved lives Benefits and risks of participating
and helped lives. Research has led to the cre-
ation of vaccines, many of which have helped
in clinical research
eradicate diseases like diphtheria, polio and Benefits
small pox within the borders of our country. • Participants play an active role in their health care.
“That’s all thanks to vaccines that have • Gain access to new research treatments before they are widely available.
been tested in clinical studies in which chil- • Obtain expert medical care at leading health care facilities during the trial.
dren have played a major role.” • Help others by contributing to medical research.
Still, the U-M study also found that the
majority of parents say that the reason their Potential risks
child has never participated in a research study • Side effects resulting from the experimental treatment.
is simply because they’ve never been asked. • The experimental treatment may not be effective for the participant.
The FDA’s pediatric program has helped • The study may require more time and attention than current treatment,
drive more clinical trials to be conducted in including trips to the study site, hospital stays or complex dosage requirements.
children. So more parents, particularly those
with children who have special health needs, Source: National Institutes of Health


and how it should be used in children. dren, we were giving children the wrong dose (and other conditions),” she says.
“The reason my family and I decided to for at least some part of the pediatric popula- Researchers feel strongly that participation
participate was so that people going through tions,” says Murphy. Also, “we found that could help a child – and certainly can help the
the same thing that we did could get help,” one-third of them didn’t work in children and advancement of medical science.
says Campau. “There was not a lot of infor- one-fourth raised a new pediatric safety issue.” “Many parents have come to the realization
mation about this type of OCD around when LaChance says that parents should also take that clinical trial participation has far reaching
I needed it. So I believe the more studies and comfort in knowing the extra attention that effects, extending beyond their own child’s
interviews I do, the more information there kids participating in research studies are given. welfare,” adds Yanik.
will be out there to help more people.” “Because there is a high concern for the “The majority of parents find comfort in
safety of the participant in research, there is knowing that their child’s therapy has the
much closer oversight of the child than if the potential to help other children, both in the
child was taking most medications,” she says. immediate present or in the distant future.”
As of February 2009, labeling changes have That’s part of why Campau encourages That’s certainly true for Cummings.
been made to more than 260 products that parents and children to become involved in “The reality is that I’m not sure this has
were studied in children – including new studies. helped my daughter at all,” she says. “But
safety information for use in children and dos- “I would definitely recommend it to other that’s OK. We tried and we’ll keep trying.”
ing changes. In addition, 50 drugs were found parents and children, because the more people
to be not effective in kids. that participate in these studies, the more – Maggie Boleyn, RN is a school nurse and
“Before these drugs were studied in chil- information they can conclude about OCD freelance writer from Oak Park.


Annabelle’s Story
Ever wonder if
charity walks
make a differ-
ence? One local
girl shows just
how much.
By Kristen J. Gough

L
ike any mother, Michelle Murphy had
visions of what life would be like when her
first child was born. She read books about
parenting and watched episodes of The Learning
Channel’s A Baby Story. During prenatal doctor
visits, when she’d hear her baby’s heartbeats, she
wondered: What will my daughter be like? What
will she sound like?
When delivery day finally came in November
2006, Murphy’s daughter was almost as she
had pictured – almost. Little Annabelle did
have round cheeks and a soft button nose, but
where her left forearm and hand should have
been, there was nothing. Murphy felt panicked,
confused and filled with questions: How did this
happen? Where is her hand? What will she do?
Looking back at all the questions that rushed
through Murphy’s mind, she says the most
Looking back at all the
important one was: What can I do to help her questions that rushed through
reach her potential?
“As a teacher, I’d worked with students who Michelle Murphy’s mind, she
faced a variety of issues,” explains Murphy, who
had been an English teacher at Warren Mott says the most important one
High School before Annabelle’s birth. “I’d seen
students with disabilities who, when faced with
was: What can I do to help
challenges, would just rise to the occasion.” But her reach her potential?
that realization took time to sink in. And she


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