special editon metro parent spring 2010

SPRING/SUMMER 2010

Surviving & thriving with

muscular dystrophy

TODAYJerry’s Kids

VACATION TIME

11 tips to help you make it happen

ANNABELLE’S STORYHow local charity can change lives

FREE

9 iPHONE APPSthat will make your life easier

ONLINE ONLY!Get our Special Edition

Events Guide in the Calendar section of MetroParent.com.

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

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

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INSIDE

ON THE COVER:

Features14 JERRY’S KIDS TODAY 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 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

Departments

6 EDITOR’S LETTER Got gumption?

8 MAKING PROGRESS The Miracle League, Autism ASK, My Great Kid Radio and more

13 HELP DESK Genetic counseling

SPRING/SUMMER 2010

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

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ONLINE ONLYCheck out our Special Edition Events Guide in the Calendar section of MetroParent.com. Find out about walks, charity drives and events for families who care about special needs.


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

Where to reach us:22041 Woodward Ave., Ferndale, MI 48220-2520

Phone: 248-398-3400, Fax: 248-399-4215E-mail: [email protected]

Web site: MetroParent.com Special Edition is published twice a year by Metro Parent Publishing Group.

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sibility for statements made by advertisers or editorial contributors. The acceptance of advertising by Metro Parent does not constitute an endorse-ment of the products, services or information being advertised. We do not

knowingly present any product or service which is fraudulent or misleading. ©2009 Metro Parent Publishing Group.

No portion of this publication may be reproduced in any way without written permission of the publisher.

STAFF

AdministrativePresident and Publisher • Alyssa R. Martina,

[email protected] President, General Manager • Alexis Bourkoulas,

[email protected] Publisher • Ruth Robbins,

[email protected] • Melissa McCrimmon, [email protected]

Accounting Clerk • Jacklene Johnson, [email protected]

Office Manager • Tracy Connelly, [email protected]

EditorialManaging Editor • Julia Elliott, [email protected]

Associate Editor • Kim Kovelle, [email protected] • Samantha Morton, Charmaigne Washington

Editorial Advisory BoardColleen Allen, Henry Ford Health System;

Stacey Bockmann, MyGreatKid.com; Carolyn Gammicchia, Association for Children’s Mental Health;

Denise Gant, Muscular Dystrophy Association; Stephanie Harlan, Autism ASK;

Anne M. Morris, Madonna UniversityContributing Writers

Lindsey Bennett, Maggie Boleyn, Eric Czarnik, Kristen J. Gough, Jessica Naiman

DesignSenior Graphic Designer • Jose Zamudio,

[email protected] Graphic Designer • Kelly Buren,

[email protected] • Stephanie Limon

Printer • Printwell, Taylor, Mich.Contributing Artist

Glenn Triest

Advertising/MarketingSales Director • Alexis Bourkoulas,

[email protected] Business Development Consultant • Linda Holland,

[email protected] Managers

Pat Davis, [email protected] Flusty, [email protected]

Michelle Gomez, [email protected] Levine, [email protected]

Deborah Jean Richmond, [email protected]

EventsEvents Director • Lisa Grace, [email protected] Events Coordinator • Marina Serafimovska,

[email protected] • Christie Taylor, Charlotte Johnson

DistributionTracy Connelly, [email protected]

One of my favorite words in the English language is gumption. First, I just like the sound of it. It’s jaunty and fun and sounds like something your grandpa would say.

But most important, I like what it stands for: initiative, resourcefulness, courage, spunk and guts. Dictionary.com gives this sentence as an example of using the word gumption:

“With his gumption, he’ll make a success of himself.”It’s kind of a lame sentence, but you get the point – gumption is good. It’s the kind of

trait that means you make the most of who you are, what you know and where you’re at in life to be your very best. It means not settling for what other people tell you is your destiny. It means living YOUR life to the fullest.

I think it’s a trait that a lot of kids with special needs have. It’s one their parents surely embody as they strive to get every resource available to help their children. And it’s what we hope this issue of Special Edition has, too.

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 old, Autumn already has a can-do attitude. And Josh took his passion for hockey so far he and his team won a tournament. Read more about these winning kids and the disorder that will not keep them down on page 14.

You’ll also find articles that help those with gumption get every opportunity. Perhaps assistive technology could help your child do better in school. Read more about it on page 18. Maybe there is a medical research study that could help your child get some answers and possible solutions to problems he or she is having. Check it out on page 23. Or it could be as simple as discovering an iPhone app that makes life a little easier. Read about nine contenders on page 29.

And last but not least, gumption is a major part of those involved with the myriad walks and charity drives held throughout southeast Michigan. All of these events are about making a change. Yes, many are seeking funds for a cure, which may be decades away. But even in the smallest achievement, there is big help. Take little Annabelle Murphy, who we feature on page 26. She was born missing her left forearm and hand. Through her mother Michelle’s gumption, little Annabelle was fitted for a state-of-the-art 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-ference – perhaps in the future, and definitely in the now – we hope more people will be inspired by the greatness of a little gumption.

The greatness of gumption

Get more at MetroParent.com!Visit MetroParent.com’s Calendar section for Metro Parent’s Special Edition Events

Guide, which includes a list of charity walks and special needs events throughout south-

east Michigan. Plus, find more special needs resources and articles at MetroParent.com.


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MAKING PROGRESS

Crain’s Detroit Business, is a longtime volunteer. He’s the Ernie Harwell of The Miracle League, offering play-by-play of the action on the field.

He usually announces the first two games on Saturdays. Trying to give the effect of a professional stadium, Doucette really plays up the enthusi-asm, playing from a catalog of 1,000 songs and sounds effects.

“I have so much fun that I am shocked that I haven’t been arrested,” he quips.

Doucette is fulfilling two dreams in one while volunteering for The Miracle League.

“Announcing the games allows me to give back to the community. Use skills that had been dormant since I left broadcasting,” he says. But it also allows him to participate in something that he wishes had existed decades ago when he was growing up.

“So that I could have been a play-er,” he says. “I was born with cerebral palsy, and had several foot and leg operations as a child.”

He tries to set an example by showing you can overcome a dis-ability and live a full life. Plus he gets inspired, as well.

“I’ve seen players go from a wheel-chair, to a walker, to crutches or canes, to walking unaided except for braces, in a season or two,” Doucette says.

The league truly is a miracle.To find out more information on

The Miracle League, such as how you can donate, volunteer, or join, visit www.michiganmiracle.org.

– Samantha Morton

OutfieldAngels

in theMiracle League offers a home

run for children with disabilities

Inspiration is like walking up to bat. You have an idea, but you have to follow through to get a grand slam.

And Steve Peck did just that.HBO’s show Real Sports with Bryant

Gumbel did a documentary in 2001 about a community in Georgia that began a program in 1998. The program allowed children who are physically or mentally challenged to play baseball.

After watching the show, Peck was inspired to start The Miracle League of Michigan.

The league is now one of hundreds of similar organizations across the country that give kids with disabilities the chance to play some ball, soak up some sunshine and be a regular kid. Peck received funding from Walmart to build a specialized field just for the league, and the city of Southfield donated land to build the field on.

Kids with autism, Down syndrome and other disorders and disabilities that impair vision, walking, talking, etc., are encouraged to join.

“You don’t see the disabilities; you see the abilities,” says Peck.

In the non-competitive league, each child is paired with a volunteer “buddy” to help him or her get to the bases. Every child gets a chance to bat, run the bases and cross home plate. There are no outs.

The league also offers competitive play where outs and other traditional baseball rules are fair game. The “bud-dies” are not part of competitive play, and this league is for “high function-ing” players.

Vic Doucette, a copy editor at


autism, specializes in working with autistic

teens and adults, a group she says is

deeply underserved. And Harlan, a social

worker whose 10-year-old son Justin

used to be autistic, sees parents and fam-

ilies who need counseling or support.

In addition, they allow other profes-

sionals to use their office space as part

of their mission to make autism services

convenient and accessible to everyone.

Harlan and Kimmel will

even travel to clients if

necessary – a service

very few provide, says

Kimmel. The store

has hard-to-find merchandise for sale

and even a consignment shop for used

therapy materials.

The company website is also a rich

source of information. “People can look on

our website and get all they need and find

out what’s happening in the autism world,”

says Harlan. “We’re both parents of kids

with autism ourselves and know what it’s

like to not have a clue what to do or where

to go.”

For more information, visit www.autism-

ASK.com or call 248-618-1-ASK (1275).

– Jessica Naiman

Two metro moms want you to know

about their new business, Autism

ASK. The acronym ASK stands for

Advocacy, Support and Knowledge – three

things Stephanie Harlan and Beth Kimmel

hope to provide to individuals with autism,

their families and the community at large.

Autism ASK wants to be the “one-stop

shop” for autism information in southeast

Michigan.

“We’re hoping we

can be that place

where you can

find a real sense of

community,” says

Kimmel. “There are so many places that

have something to do with autism, but

there really isn’t any central hub.”

Curious about a gluten/casein-free diet

for your autistic child? Need an art thera-

pist? Looking for a speaker to talk to your

group about autism? Autism ASK is armed

with information on everything autism, and

will direct you to groups, doctors, social

workers and organizations that fit your

needs – for free.

Autism ASK also provides specific ser-

vices directly out of its Waterford location.

Kimmel, whose 18-year-old son Alex has

For parents with children

affected with autism or

other disabilities, going to

the movies can be difficult.

But not anymore.

AMC Entertainment and the

Autism Society have teamed up

to bring a wonderful movie experi-

Looking for help with autism?

Just ASK

ence for families through their

Sensory-Friendly Films program.

Each Saturday of every month,

a new movie is shown at 10 a.m.

The movie is played in a theater

where children are welcome to

dance, walk, talk or sing as the

movie plays, which is a departure

from typical movie screenings.

The lighting in the theater is

turned up and the sound of the

film is turned down to make the

experience more comfortable for

kids.

Parents can bring in their own

snacks if they prefer, and no pre-

Now showing: sensory-friendly filmsviews are shown before the films.

Get more information at par-

ticipating AMC theatres: AMC

Livonia, AMC Gratiot 21 in Clinton

Township, and AMC Forum 30 in

Sterling Heights. Or visit

www.autism-society.org or

www.amcentertainment.com/sff.

– S.M.

Temple Grandin speaks in DetroitOffers words of wisdom to families coping with autism

T emple Grandin is arguably the most

accomplished autistic person in the

world. She’s an author, an inventor, a

doctor and, most important, an inspiration.

She’ll also be the keynote speaker at this

year’s Living With Autism Workshop, pro-

duced by Metro Parent and sponsored by

Henry Ford Health System.

The workshop, on Thursday, April 29, at

the MET Hotel in Troy, also includes an array

of seminars taught by local professionals

and experts to help families and educators

get tools and information to better deal with

autism. It will pinpoint strategies for coping

with the challenges of raising a child with

autism.

Grandin, whose life was chronicled in the

recent HBO film starring Claire Danes, will

augment those lessons with her own story of

overcoming autism to achieve and succeed.

For more information about the workshop

or to register, visit the MP Events section of

MetroParent.com.

– S.M.


Turn up the volume on

this new radio show for

parents hosted by hus-

band and wife Steve and Staci

Bockmann. The My Great Kid

Radio Show airs live 8 a.m. to 9

a.m. Sunday mornings on WAAM

Talk 1600 AM, which services the

Ann Arbor/Detroit area.

The show is all about parents

helping parents and revolves

around topics including sensory

integration, reading and educa-

M ary Brown was just like any other expectant mother, preparing her baby’s room and growing more

eager to welcome her newborn to the world.But soon after the birth of her child, Brown

was faced with a difficult reality; her son had two congenital heart defects (CHDs).

After receiving open-heart surgery to cor-rect them, Brown realized that CHDs affect numerous people. She started It’s My Heart-Metro Detroit, a chapter of the 15 It’s My Heart nonprofit organizations throughout the country.

“Bringing awareness to the community in general and providing support to people who are affected by it (CHDs) is our goal,” says Brown, the president of the chapter.

The organization offers supports groups to families/parents to find out more information about CHDs and meet other families/parents going through the same situation.

Most people don’t know that heart defects are among the most common form of birth defects and more than 32,000 newborns are

Weekly radio show offers help to parents

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

tion, special needs, nutrition,

health and wellness, discipline

and parenting tips, with a fre-

quent focus on special needs

issues like ADD/ADHD, autism,

dyslexia, vaccines, advocacy,

social skills, nutrition, education

challenges and more.

The Bockmanns of Livonia

have gathered bundles of infor-

mation over the years parent-

ing their 11-year-old son with

autism.

“We’ve tried to find out as

much information as we can,

which led us to the radio show

to share with others,” says Staci.

“We thought, ‘How can we get

this information out to other par-

ents?’”

The show is a combination

of expert interview, opinion and

listener call-in.

Show highlights include the

weekly Wrightslaw IEP Tip of

the Week, presented by attor-

ney, author and children with

special needs advocate Wayne

Steedman of Wrightslaw.

Podcasts of the show are

available at www.mygreatkid.

com, together with a regularly

updated blog and an extensive

email database. You can get free

downloads on iTunes or search

for My Great Kid on Twitter,

Facebook and iPhone.

– Jessica Naiman

affected by them each year. That’s approxi-mately one out of every 125 to 150 babies, according to the American Pregnancy Association (APA).

According to the APA, teens and adults can have the defect, but it may not show up at birth.

That’s why It’s My Heart-Metro Detroit is even starting a teens and young adult support group for those affected by CHDs.

Surgery is often the best option to correct the defects. The organization supplies comfort bags to surgical patients and families before the operation.

The comfort bags includes items like “stuffed animals for the patient, coloring books, activities for parents, like Sudoku, to do while waiting through the operation, fact about CHDs and information,” says Brown.

For anyone who would like to find out more information or join, help and support the efforts of It’s My Heart-Metro Detroit, visit www.itsmyheart.org/metro-detroit or email [email protected].

– Samantha Morton

MAKING PROGRESS


Weekly radio show offers help to parents

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LOOKING FOR MORE SPECIAL NEEDS RESOURCES?

Visit the Special Needs section of

MetroParent.com.Advice. Insights. All the Time.

Call today! 248.496.0150

OPTIMINDS©

The next generation of brain fitness

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Plus Recommendations on Diet, Physical Exercise and More

Cognitive Camps

Jane H. Stewart, Ph.D www.optimindsct.comE-Mail: [email protected]


HELP DESK

By Lindsey Bennett, MS, CGC

phy should do is to seek help from a certified genetics counselor or clinic specializing in the discipline. One such clinic is the Muscular Dystrophy Association (MDA) clinic located at the Children’s Hospital of Michigan. It offers comprehensive medical services utilizing a multidisciplinary approach with expertise from physicians, nurse practitioners, physical therapists, occupational therapists, dieticians and genetic counselors to treat a variety of neurological disorders.

Genetic counselors at the MDA work with the family to construct a genetic history to identify how a particular condition is passed from one family member to another. This family genetic history can also help determine if other family members are at risk of getting or passing a condition to others. Family his-tory, along with a clinical exam, can help lead to a diagnosis that may not be immediately apparent.

When appropriate, this history can also help guide genetic testing. If the diagnosis is known, genetic counselors can assist families in understanding a condition’s genetic cause – and even offer information about potential inheritance and chance of recurrence. In some cases, if no diagnosis has been made, counsel-ors can help parents understand why.

Anxiety and apprehension are common if a doctor decides that genetic testing is the best option for the child. Helping parents understand the importance of testing and the significance of the results, along with guidance from genetic counselors to help navigate them through the process, often helps alleviate the anxiety.

DON’T PANIC. YOU CAN GET HELP AND ANSWERS FROM GENETIC COUNSELORS

Genetic counselors are

available to guide you, so you’re

informed and can do the best for

your child and your entire family.

Genetic conditions can affect the entire family. Part of the role of a genetic counselor is to help families cope with the range of emotions that may be experienced when liv-ing with a genetic condition or having a child with a genetic condition. These counselors also have access to resources, including sup-port groups or networks that may be benefi-cial to the family.

While there are many benefits of genetic testing, there are also risks and limitations, which should be discussed with parents. Parents should also be aware that genetic test-ing is costly and may not be covered by some insurance care providers.

So what should parents do if their child is diagnosed with or suspected of having a genetic disorder or condition? Breathe, and remember that you are not alone. Genetic counselors are available to guide you through the process, so you are informed and can do the best for your child and your entire family.

Contact the MDA at 586-274-9000 to sched-ule an appointment. To find a genetic counselor in your area, check out www.nsgc.org.

– Lindsey Bennett, MS, CGC is a certified genetic counselor at MDA-Children’s Hospital of

Michigan.

The concept of genetics has increasingly been a part of our lives since the dis-covery of the genetic code, but the con-

cept remains challenging for many to grasp. Medical strides are continually being made within the field, yet they make it even more difficult for parents and health care providers to keep up.

What are parents to do when the pediatri-cian suspects their child has a disease or dis-order that may be genetic? Let’s look at that scenario as it applies to muscular dystrophy to get an idea. Numerous clinical trials are emerging within the context of muscular dys-trophy, and many are dependent on knowing the genetic basis of the condition.

The first thing a parent of a child diag-nosed or suspected of having muscular dystro-

What if doctors suspect genetics?


TodayJerry’s Kids

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.

By Kristen J. Gough


proteins, or building blocks, to support and main-tain the growth of muscle tissue in the body. As a result, the muscles begin to weaken and deterio-rate as a child grows older. Some forms, like BMD and DMD are more common in boys.

Muscular dystrophy is sometimes confused with Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig’s Disease. This disease also leads to an inability to control muscle movement, but the cause is different. With ALS, the brain’s signals to the muscles become weaker over time, so that brain can’t control muscle movement. The MDA also actively supports research efforts to find better treatment options and cures for ALS.

In fact, Denise Gant, health care services coor-dinator of the Michigan MDA, says the organiza-tion services a total of 43 neuromuscular diseases, including muscular dystrophy, amyotropic lateral sclerosis, spinal muscular atrophy and others.

What are the signs?Children with MD usually develop normally

during their first few years of life, and then begin to exhibit signs of muscle problems. For example, a child might have difficulty walking or getting up from a sitting position. The child will also walk on her toes instead of the heels of her feet and have a tough time climbing stairs. Often parents approach their child’s primary care provider with these concerns. The provider evaluates the child and then, based on his or her findings, will refer the child to a specialist.

Dr. Gyula Acsadi is such a specialist. As a pedi-atric neurologist, he’s co-director of the Muscular Dystrophy Association Clinic at Children’s Hospital of Michigan. He notes the average age when kids are referred to his office is 4.

“But the diagnosis could be made much ear-lier,” says Dr. Acsadi, who believes there needs to be more awareness of the signs and symptoms. At his office, kids get an extra physical examination and blood test, which looks at the levels of certain proteins, to confirm the diagnosis.

And even once a specialist has determined that a child has MD, additional evaluations and tests

Today, one out of every 3,500 boys will have Duchenne muscular dystrophy (DMD),

the most common – and most severe – form of the disorder. Despite the high incidence of Duchenne, many people would be hard-pressed to describe the condition. But they could probably readily recall one of muscular dystrophy’s biggest advo-cates, Jerry Lewis.

Since 1966, Lewis has hosted a Labor Day telethon to raise money to support research and help families dealing with muscular dystrophy (he’s been involved with fundraising efforts since 1951). In its first year, the telethon raised over $1 million. Last year, that figure reached just over $60 million. The telethon’s stage has played host to a who’s who in music and Hollywood. Diverse talents like Celine Dion, Michael Jackson, John Lennon and Led Zeppelin are just a few of the many who’ve lended their names and fame to support The Muscular Dystrophy Association (MDA) and Jerry’s Kids.

This year, the telethon celebrates its 45th year – an important mile-stone for an effort to not only gener-ate money for a worthy cause, but also to put names and faces to a dis-ease that is so often misunderstood.

Defining MDDuchenne is just one form of mus-

cular dystrophy. There are several. A milder-but-less-common form, which is similar to Duchenne, is called Becker muscular dystrophy (BMD). The first symptoms develop later in childhood.

According to the National Institute of Neurological Disorders and Stroke (NINDS), the term muscular dys-trophy “refers to a group of more than 30 genetic diseases that cause progressive weakness and degenera-tion of skeletal muscles used during voluntary movement.”

MD is a genetic disorder where the body doesn’t produce the necessary

Autumn PersingerAt age 5, Autumn likes to

color and play Littlest Pet Shop.

Her spinal muscular atrophy

keeps her in a wheelchair, but

she’s still ready to move. Her

mom hesitated taking her to

a McDonald’s PlayPlace. But

Autumn didn’t mind, pointing

out there were parts for “walk-

ing kids” and “wheelchair kids.”

Every night, Wendy or her

husband, Brian, help Autumn

with her equipment. Braces

attach to her legs both at the

calf and thigh. A breathing tube

helps her sleep, and a feeding

tube provides nutrients.

Wendy recalls asking Autumn

once if all this stuff was a lot to

deal with. Her daughter said,

“It’s kind of a headache, but I

know it makes me feel better.”

Zachary DavisWith a mischievous smile,

Zachary, 10, dons his racing gear

and rides a four-wheeler in his

own division of motorcross. He

participates in a special needs

ride with other kids. He has

Duchenne muscular dystrophy.

Zachary loves sports – espe-

cially extreme sports, notes

mom Tori. During the February

Winter Olympics broadcast, he

loved watching high-speed bob-

sledding. He participates in the

Special Olympics, Harley events,

MDA programs like summer

camp and more. His big brother,

Dominic, age 14, is one of his

biggest fans – and best buddy.

“He’s full of life,” says Tori.

“He’s a very, very special little

boy. He’s not letting anything

hold him back.”

Josh CueterJosh’s sport of choice is

hockey. He plays year-round on

two teams – one that travels.

His mom, Kris, says he started

Wheelchair Hockey in late 2008.

Josh, a seventh grader, has

Spinal Muscular Atrophy.

Kris says hockey has “given

(Josh) the confidence to go out

and try something new and not

let his physical needs get in the

way.” After a year, he was asked

to join the Michigan Mustangs.

They play three teams (10

games a season) and then travel

to tournaments. Last summer,

it was North Carolina (his team

won!). This year, Toronto.

Josh also does adaptive skiing

and plays the clarinet. “He basi-

cally does what every other 12

year old wants to do,” says Kris.


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.

TreatmentsChildren 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 likeMD 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

Jerry’s Kids


are able to tap into support networks and pro-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.

Is there a cure?The short answer is no. But the more com-

plete answer is that researchers and doctors are making strides every day toward increasing a person with muscular dystrophy’s life expec-tancy – and even their quality of life. “In the past 10 years, the standard of care for these children has evolved,” says Dr. Acsadi.

For example, in the past, kids diagnosed with DMD were often told they had a life expectancy of 18 to 19 years. “Today, about 30 percent of those with Duchenne reach 30

years of age. That’s a major improvement.” He points out that doctors work in a multi-disci-pline approach now in treating kids with MD. Instead of just receiving care from one physi-cian, a team of specialists including therapists are often involved in a child’s care.

Even seemingly small steps equal huge gains when it comes to treating muscular dystrophy. Dr. Acsadi explains that the MDA has been instrumental in putting together a database of children with MD, specifying their particular form. With this database, researchers can reach out and find people to participate in clinical trials of new drug therapies more easily – and quickly. (See article on studies on page 23.)

Currently various research facilities are work-ing on a variety of treatments including drug- and cell-based therapies, gene replacement and gene modification therapies, and more.

The hope, of course, is that there will even-tually be no need for Jerry Lewis’ perennial muscular dystrophy telethon.

“We’d all like to see a day when we have a cure,” says Gant. “But until then, we have to do whatever we can to give support and help to those with MD, so they can live the best lives possible.”

– Kristen J. Gough is a mother of three and former Detroiter who now lives in Colorado.

Researchers and doctors are making strides every day toward increasing a person with muscular dystrophy’s life expectancy and quality of life.


AdaptLearningto

Assistive technology is leveling the educational playing field for kids with special needs. Could it help your child?

Bloomfield Hills Schools speech and language pathologist Diane Abrahamian says.

“Many of our students need help with accessing their environment,” she says. “Often, switches are used with our students to help them have a point of control. They may be able to move their arm or their hand.”

According to Abrahamian, switches tend to make life easier for students in wheelchairs or those with conditions such as cerebral palsy. When activated by a child’s finger or joint, the switch can turn on computer programs, appliances or toys.

And switches on single message communication devices can help nonverbal students express themselves with programmed

technology for the ABCs, but we also use adaptive technology for daily living activities.”

Gittleman says A.T. is a common part of academic life at Wing Lake, which is managed by Bloomfield Hills Schools but serves students from ages 3-26 from districts across Oakland County. The center helps people with severe physical or mental disabilities, she says.

Tech and toolsAccording to Wing Lake instructors, one of

the most versatile forms of A.T. is the button switch, which can simplify complex tasks for students with limited mobility. Switches often come in button or toggle form, but they often can be modified to suit a student’s needs,

Backpacks, pencils, books. For decades, kids have packed such school supplies before heading to class. But for some

young metro Detroiters with special needs, it takes a special set of educational tools to succeed. And even while many school districts are struggling to balance budgets in the current economy, they’re acquiring or borrowing the right equipment to help kids learn, grow and conquer their limitations.

Assistive technology, or A.T., comes in all shapes – from everyday utensils to cutting-edge computers, says Barbara Victor-Gittleman, an occupational therapist at Wing Lake Developmental Center in Bloomfield Township. “We not only use adaptive

By Eric Czarnik


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.

Wing Lake educators say they’re using Promethean interactive whiteboards, too. The high-tech machines can send computer images onto the whiteboard, which creates an excellent focal point for visual learning, says Wing Lake speech and language pathologist Karen Natoci Florka.

“More than half of our students have visual impairments, and the size of the Promethean boards helps. We can magnify pictures to a huge size, so that all students can be exposed to symbols in this way, at the same time.”

Florka says the school also combines switches with the whiteboards, so the students can turn the pages on an ebook displayed on the board. The process rewards students with more control over their learning.

“For students who have profound orthopedic impairment and have difficulty moving to operate a switch, it is wonderful that we can provide such huge feedback for the tiniest of movements that they are learning to control,” she says.

But A.T. doesn’t have to involve computers. For instance, students who struggle to grasp objects may use modified utensils, like cups with built-in handles or plates with suctioned bottoms, Gittleman says. Or it may be as simple as providing jumbo-sized crayons or weighted pencils designed to allow easier grip.

These tools are often as helpful as the most state-of-the art equipment, she says. “Not everything has to be on the very high end.”

How to get itDespite the plethora of adaptive educational

tools out there, experts agreed that parents and teachers must be aware and willing to use the technology in order for it to do any good.

Christine Brown, director of student services at Macomb County’s Lakeview Public Schools, stresses that A.T. regimens are highly individualized. She also says “assistive technology” is a broad term, because it can

even include pencil grippers or spell checkers.“I’ve got a student who’s visually impaired

in a drafting class, so we have to order a bigger monitor for him,” she says.

Brown says Macomb County uses a standard individualized education plan (IEP) form that includes a section to discuss the need for an assistive technology evaluation. From there, the school could examine the student to determine whether any challenges the child has could be solved with a device.

Brown notes that sometimes, a teacher may take the initiative on employing simple A.T. solutions, such as offering a pencil gripper to a student with a writing problem. However, Brown says, the district knows the importance of keeping all parties in the loop, particularly when dealing with the education of a special needs child.

“The parent is alerted,” Brown says. “Parents and teachers communicate a lot.”

Carla Harting, principal of special education at Wyandotte Public Schools, says her district has no problem matching special needs students with A.T. She said it often borrows materials from the Wayne County Assistive Technology Resource Center (ATRC).

The resource center, located in Lincoln Park, is like an A.T. library complete with representatives that teach people how to use them, Harting says. She adds that the teacher and therapists are usually the people who make the recommendation to seek devices from the resource center.

“The parent would say, ‘My child is having this type of problem,’ and then we look at what we can do to help,” she says.

After the school requests a device, the resource center’s representatives may meet the special needs student. If a trial shows that the technology is helpful, then the district would ask to loan it, she says.

Like Wyandotte, Dearborn Public Schools borrows equipment from the Wayne County ATRC. Kathleen Gabe, the district’s special

education director, says assistive technology has found ways to work around more severe disabilities over the last 10-20 years.

Gabe says her district is currently teaching a student who became deaf in high school. “Her first language was English talking, so when she went deaf … she had never learned sign language in her life,” she says.

So the district installed software on the student’s laptop that interacts with a microphone near the teacher. When the teacher speaks, the software translates speech into text and images of sign language. “That’s a real advance in technology,” Gabe says.

Equal opportunity for all?The digital age and the Internet have leveled

the playing field for struggling students by giving them more options than just a hard-copy textbook, says Judy Arkwright, an A.T. consultant who is associated with the Wayne County ATRC.

Arkwright says children who have reading problems may now use digital literacy software that audibly reads computer text from electronic books or the Net. Websites such as YouTube and portable devices like the iPod Touch also build new avenues of learning.

“The host of digital tools is endless,” Arkwright said. “We need to step back, review what our students need to learn, define the barrier to learning and access the tools to support the learning process.”

But despite the advantages of the Internet and digital literacy tools, Arkwright says school districts still vary in their ability to help special needs children take advantage of A.T.’s maximum potential.

“It is not just a matter of infrastructure and tools,” she says, “but the support systems to guide educators across time on how to use the tools in authentic application in their classrooms.”

– Eric Czarnik is a freelance writer from Madison Heights.

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

kids, visit www.ablenetinc.com or www.sammonspreston.com.LEARN MORE


Family

Planning on taking a trip with your children? If so, you no doubt have

a checklist written or in your head of what you need to do before you

go. Extra diaper wipes? Check. Favorite teddy bear? Check. But for

families traveling with children with disabilities, the checklist is lengthier. The

intricacies of planning ahead with the proper medications and equipment such

as ventilators and wheelchairs may make running away to some island para-

dise seem impossible. Yet more and more travel providers – from hotel staff to

resort managers – are making travel for the disabled easier. Their efforts have

been spurred on not only by tourism dollars, but also through additional regu-

lations from the U.S. federal government that ensure those with disabilities are

able to have the same opportunities as those without – even if that opportu-

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.

Yes,You Can Have a

Vacation!Enlist the help of your young travel agent.1

Maybe the best part of a vacation is the anticipation, and that may be even truer for a child with special needs. If your child is old enough, let her do research online about your travel destination. Print out pictures and information about the spots that you’d like to visit. For younger kids, check out books from the library about the locale and read them to them at night. And don’t forget to take plenty of pictures during your vacation – you can chose one or two images to enlarge to poster size so that your child can remember your special trip.

By Kristen J. Gough


10

Pack a ‘survival’ kit.2 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.

Keep it cool.3If 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.

Become an airline expert.4 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


King, senior vice president of accessibility ser-vices at Able to Travel, a travel provider associ-ated with United Spinal Association.

To board, you should be able to take the wheelchair to the gate – and even sometimes right up to the aircraft. Once at the airplane, you’ll need to have the wheelchair stowed. Manual chairs can usually be stored on the airplane. Heavier power chairs need to be placed in the cargo area.

Airlines usually offer helpful tips about how to check your wheelchair during a flight. Continental Airlines suggests having writ-ten instructions about various items on your device; that assists airport personnel as they load and unload it. Or design your own (visit www.continental.com and search for “wheel-chairs” to find a helpful form). Fill out as much as you can and attach the card to the device. Make a copy for yourself, just in case.

Keep in mind that your child’s wheelchair is not considered checked baggage. You can’t be charged extra to have it stored.

Find the right security.5 Children in wheelchairs don’t have to go

through regular security scanners, says Kleo. Instead, she recommends you ask the screen-ing representative for a “private screening.” If the airport staff person voices an objection, ask to talk to his or her supervisor, who often has more training and familiarity accommo-dating those with special needs.

Kleo points out that she’s also worked with clients who’ve had metal plates placed in their body to treat certain conditions. She suggests they carry a doctor’s note explaining the sur-gery or metal part to alleviate any confusion.

Get professional help.6 Even if airline or hotel websites include

thorough descriptions of disabilities services, harried staff or uninformed personnel may not understand how to meet the needs of trav-elers with disabilities. Several travel agencies, including Able to Travel, can help arrange trips for you and your family. These represen-tatives are well-acquainted with what services to ask for – and how to ask for them. Equally

important, if anything goes wrong with your trip, the representative can step in on your behalf to help. Able to Travel charges $25 per person to arrange trips.

Expect some hassles.7 Delays, frustrations, inappropriate ques-

tions or comments. No matter where you travel, there’s bound to be a few hiccups. Instead of getting upset – or planning for the worst – figure that a few difficulties are part of the adventure. If you keep a smile, chances are the rest of your family will, too.

Break it up.8An all-day marathon tour of a quaint tour-

ist town may sound good on a travel site, but children need breaks. And, depending on your child’s special need, he or she may need even more breaks. Plan down time into your sched-ule. For example, if you’re going to a theme park, play for an hour or two and then return to your hotel and watch a movie. Go back later in the day for another hour or two.

Rent instead. 9 Hemenway has found renting a house is

better option for her family, versus checking in to a hotel. A house provides more space – and a kitchen – which makes traveling with her disabled daughter and her service animal much easier. A home can be more relaxing than a cramped hotel room. Plus, Hemenway says she’s able to find deals for four-bedroom homes that meet or beat the cost per night in

a resort hotel. Added bonus – many Florida homes also have a pool! Be aware, though: You should work through a reputable source for renting a home. Ask a travel agent or other travel professional for recommendations.

Give Mickey a head’s up.10 Most big theme parks and resorts offer ser-

vices designed to make traveling with children with disabilities more convenient. Zoraya Suarez, a spokesperson for Walt Disney World Resort, explains that guests can call ahead and let Disney personnel know what kind of services they may need, from special dietary concerns to wheelchair equipment and more.

“For children with autism, we have alterna-tive park entrances, so they don’t have to stand in crowded queues,” says Suarez. Hearing-impaired children can request interpreters. Suarez also points out that almost half of the rides at Disney World have been designed to be wheelchair accessible. She recommends parents call 407-824-4321 with questions. They should ask for “Guest Relations” and explain their child’s particular needs.

Don’t worry if you don’t remember to contact the park before you arrive; ask at the check-in gate to find out what accommoda-tions are available.

Be realistic. 11 You might want to seek out additional tips

and guidance from support groups or other organizations that service those with your child’s particular needs. But keep in mind that no matter how much planning you do, no trip is perfect. The whole point of traveling is to create lasting memories with your children.

Sure, your plans to play outdoors might get stalled by unexpected rain showers, but you’ll also have unexpected delights. Perhaps a favorite cartoon character will just happen to pass by and stop for a photo while you’re standing in line for one more trip on “It’s a Small World.”


Most big theme

parks and resorts

offer services

designed to make

traveling with kids

with disabilities

more convenient.

FamilyVacation!


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

The 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-ies on how the product did or did not work in kids, what kinds of reactions they might have, or what the proper dose would be.

In 2003, the Journal of Pediatric Hematology and Oncology reported there are frequently “enormous problems recruiting and selecting eligible patients for clinical research projects,” particularly studies involving kids.

That’s because parents are sometimes unwilling to allow their children to take part in medical research, fearful their kids may be harmed or used as “guinea pigs,” according to a report issued in 2008 by researchers at the University of Michigan Health System.

The U-M report also found a large gap between the proportion of parents who want safe medicines for their children, and those who are willing to allow their kids to partici-pate in studies. Although more than three-fourths of parents surveyed want only FDA-approved medicines, just one-third are willing to have their kids take part in research that could produce medicine safety information.

“We know that parents, quite reasonably, may be concerned,” says Matthew M. Davis, M.D., associate professor of general pediatrics 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 and helped lives. Research has led to the cre-ation of vaccines, many of which have helped eradicate diseases like diphtheria, polio and small pox within the borders of our country.

“That’s all thanks to vaccines that have been tested in clinical studies in which chil-dren have played a major role.”

Still, the U-M study also found that the majority of parents say that the reason their child has never participated in a research study is simply because they’ve never been asked.

The FDA’s pediatric program has helped drive more clinical trials to be conducted in children. So more parents, particularly those with children who have special health needs,

Benefits and risks of participating in clinical research Benefits

• Participants play an active role in their health care.

• Gain access to new research treatments before they are widely available.

• Obtain expert medical care at leading health care facilities during the trial.

• Help others by contributing to medical research.

Potential risks

• Side effects resulting from the experimental treatment.

• The experimental treatment may not be effective for the participant.

• The study may require more time and attention than current treatment,

including trips to the study site, hospital stays or complex dosage requirements.

Source: National Institutes of Health

may be considering whether to enroll a child.Some doctors say that studies specifically

geared toward special needs kids is an area that needs more attention

“There is definitely a scarcity of research being done for children with special needs,” says David R. Rosenberg, M.D., professor and chief of Child Psychiatry and Psychology at Wayne State University and Children’s Hospital of Michigan. He said there is an “urgent need” that is gaining increased atten-tion. Rosenberg is the director of obsessive-compulsive disorders (OCD) study.

Why should parents involve kids? “Having your child participate in clinical research is one way to help with the availability of medi-cations the FDA approved for children,” says Jenny LaChance, a certified clinical research coordinator specializing in pediatric clinical trials at Hurley Medical Center in Flint.

“I think the greatest and most important benefit from participating is the satisfaction that I am helping many people, so that they do not have to go through all the pain and suffering that my family and I went through,” says Angela Campau, who participated in clinical studies conducted by Rosenberg at

WSU. “We had no clue what was wrong with me and how to fix it. By doing all the studies and interviews, I can be helping at least one person, which makes it all worthwhile.”

Research studies test how well new medical approaches work. Each study answers scien-tific questions and tries to find better ways to prevent, screen for, diagnose or treat a disease. Clinical trials may also compare a new treat-ment to a treatment that is already available.

“Participating in clinical research provides parents an opportunity to learn much more about their child’s condition and options,” LaChance says. “Part of the informed consent process is to discuss treatment options other than the research study. Also, a lot of time in research studies with children is spent on par-ent and child education.”

By taking part in a trial, your child could be offered a new treatment that may or may not be better than those that already exist.

“Many of our parents are grateful to know that their child can receive ‘state of the art’ therapy when participating in such clinical trials,” says Gregory Yanik, professor at the Department of Pediatrics and Communicable Diseases at C.S. Mott Children’s Hospital at the University of Michigan Health System.

Your child can also help the medical com-munity understand how the treatment works


and how it should be used in children. “The reason my family and I decided to

participate was so that people going through the same thing that we did could get help,” says Campau. “There was not a lot of infor-mation about this type of OCD around when I needed it. So I believe the more studies and interviews I do, the more information there will be out there to help more people.”

As of February 2009, labeling changes have been made to more than 260 products that were studied in children – including new safety information for use in children and dos-ing changes. In addition, 50 drugs were found to be not effective in kids.

“Before these drugs were studied in chil-

dren, we were giving children the wrong dose for at least some part of the pediatric popula-tions,” says Murphy. Also, “we found that one-third of them didn’t work in children and one-fourth raised a new pediatric safety issue.”

LaChance says that parents should also take comfort in knowing the extra attention that kids participating in research studies are given.

“Because there is a high concern for the safety of the participant in research, there is much closer oversight of the child than if the child was taking most medications,” she says.

That’s part of why Campau encourages parents and children to become involved in studies.

“I would definitely recommend it to other parents and children, because the more people that participate in these studies, the more information they can conclude about OCD

(and other conditions),” she says. Researchers feel strongly that participation

could help a child – and certainly can help the advancement of medical science.

“Many parents have come to the realization that clinical trial participation has far reaching effects, extending beyond their own child’s welfare,” adds Yanik.

“The majority of parents find comfort in knowing that their child’s therapy has the potential to help other children, both in the immediate present or in the distant future.”

That’s certainly true for Cummings.“The reality is that I’m not sure this has

helped my daughter at all,” she says. “But that’s OK. We tried and we’ll keep trying.”

– Maggie Boleyn, RN is a school nurse and freelance writer from Oak Park.


Annabelle’s Story

Looking back at all the questions that rushed through Michelle Murphy’s mind, she says the most important one was: What can I do to help her reach her potential?

By Kristen J. Gough

Like 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 important one was: What can I do to help her reach her potential?

“As a teacher, I’d worked with students who faced a variety of issues,” explains Murphy, who had been an English teacher at Warren Mott High School before Annabelle’s birth. “I’d seen students with disabilities who, when faced with challenges, would just rise to the occasion.” But that realization took time to sink in. And she

Ever wonder if charity walks make a differ-ence? One local girl shows just how much.


pondered what she could do to help her little girl that first night, after family and friends had left the hospital, and the room was quiet, and she finally had a chance to gently unwrap her baby and take a closer look at where her left forearm should have been. The next day, when Murphy checked out of the hospital, the doctors and the hospital staff gave little direc-tion about how she could help her newborn. She left feeling lost.

Murphy and her husband, David, debated about what to do for their baby girl. One doctor offered that Annabelle was healthy, other than her missing limb. The advice: Perhaps later in life a prosthesis might be a good option, but for now she’d learn to make do with one hand. Murphy felt like there was more they could do as parents than wait.

“Thank goodness for Google,” says Murphy, who stumbled upon a children’s charity called Variety that helps youngsters with a range of special needs, including prosthesis. It also happened that Variety had offices within a short drive from her home.

Variety’s history and helpThe organization, officially titled Variety,

the Children’s Charity of Detroit, is part of an international conglomeration of volunteers that started in Pittsburgh in 1928. Variety’s connection to prosthesis began in the early 1970s with the efforts of Milt London.

London, an active member of Detroit’s chapter of Variety, believed that children would benefit from a central location to be fitted for myoelectric limbs. These artificial limbs were different from the previous pros-thesis, which had hooks and clamps to act as hands. Myoelectric limbs used sophisticated electronic chips to make it possible for wearers to move a lifelike hand. London approached Dr. Lawrence Morawa, a well-known ortho-pedic surgeon and the director of the Pediatric Amputee Clinic at the Detroit Institute for Children for help. In the late 1970s, the Variety Myoelectric Center opened its doors. Today, the Center is housed at the Children’s Hospital of Michigan’s Novi campus.

Murphy explains why Variety’s services are

so unique and essential: “Most insurance com-panies consider a myoelectric prosthesis a lux-ury,” explains Murphy. Even if the insurance covers part of the cost of an artificial limb (like those with hooks), they usually don’t cover a specialized prosthesis like a myoelectric arm, which can cost upwards of $25,000.

Add to that, kids grow quickly, meaning that they don’t just need one arm, like an adult might, but they need a new fitted limb every 12 to 18 months. Murphy was lucky that her insurance did cover part of the costs of Annabelle’s prosthesis, while Variety kicked in the rest – and also covered 100 percent of her daughter’s weekly therapy sessions.

At 7 months old, Annabelle was fitted with her first artificial arm. The hollowed out limb couldn’t move, but instead was designed to help Annabelle develop the muscle strength she’d need to use her heavier myoelectric arm. It also helped her become comfortable using two hands. After only a couple months wear-ing her new arm, Annabelle became an expert.

“I’ll never forget the day when Annabelle was just sitting on the carpet and she picked up her bottle with her two hands, lifted it over her head and just guzzled it.”

When she was 19 months old, Annabelle was fitted with her myoelectric arm, which taps into the brain’s signals to move limbs (the brain continues to send signals even if a limb is absent). The myoelectric arm interprets those signals into movement. Murphy expect-ed the process of learning to move the hand to take Annabelle months, despite the doc-tor’s advice that kids usually get the hang of it immediately. Annabelle was no exception and was able to manipulate her new hand after just a few minutes of wearing it. (Once a child is done using a myoelectric prosthesis, Variety reuses parts from one limb to build others.)

Raising awarenessMurphy sees several milestones in

Annabelle’s still-short life. She credits the people at Variety with helping her daughter become fully mobile. When Variety asked Murphy to share Annabelle’s story at a meet-ing of their board of directors, she agreed. “I

Get out and walk with your child

for a good cause on Sunday, April 25.

Registration starts at 9 a.m. and the

walk begins at 10 a.m. Kids can chose

to trek for one, two or three miles; the

walk starts and ends in downtown

Birmingham, near Shain Park.

The walk encourages children to

actively support other children by

soliciting donations from family, friends

and neighbors. Together, the four

children’s charities that support the

walk fill the needs of more than 20,000

children. More than 93 percent of the

funds raised are used for children’s

programs, with administrative expens-

es maintained at less than 7 percent.

The coalition of children’s charities that

are involved in the walk include:

CARE House. The home of the Child

Abuse & Neglect Council of Oakland

County provides prevention, interven-

tion and treatment services to over

4,000 child victims of abuse and their

families. www.carehouse.org

The Community House. Offers more

than 800 free and low-cost educa-

tional, social and cultural programs to

children and families annually. www.

communityhouse.com

Orchards Children’s Services. This

leader among Michigan’s child welfare

agencies is the largest foster care

and adoption agency in the state of

Michigan. www.orchards.org

Variety, the Children’s Charity.

Dedicated to promoting and protecting

the well being of children, Variety offers

financial assistance and services to

over 10,000 children and organizations

that serve children with special needs.

For more information on the walk, visit www.childrenscharitiescoalition.org.

Get Involved: Kids Helping Kids


gave the talk, they were very receptive, and things spiraled from there,” says Murphy. “I took it as an opportunity to raise awareness and show Annabelle that her journey is some-thing she can be proud of, and Variety was able to use Annabelle’s story as a first hand account (literally) about the power of charity and a unique program.”

To date, Annabelle and Murphy have spoken to a range of service groups, doctors and schools. Together they’ve answered ques-tions from school groups that topped 200 students, but they’ve also talked to Girl Scout troops and small church groups. Murphy says Annabelle hasn’t done much speaking, yet. “She’s answered questions about what her favorite color was – purple! Or what is the name of her bunny that she carries everywhere – Nee!” explains Murphy. “I think what is most interesting is the other children’s reac-tions to her. They ‘ooh’ and ‘aah.’ They think it’s just awesome that she has a magic arm.”

Now, Murphy and Annabelle have been helping publicize one of Variety’s fairly new fundraising efforts. The Kids Helping Kids Walk is sponsored by four area charities, including CARE House, The Community House, Orchards Children’s Services and Variety. This year is the third anniversary of this unique fundraiser. As much as possible, the walk is publicized, organized and run by kids. In fact, adults aren’t even allowed to walk – unless accompanied by a child.

Kids helping kidsThe brainchild of Variety volunteers

Connie Beckett and Kelly Shuert, the Kids Helping Kids Walk reaches out to area schools to generate interest. Variety asks for interested students to act as fundraising leaders for their grades. These middle and high school student leaders then create their own posters to adver-tise for the event and talk to other students about the walk.

Beckett says that at one school, a student approached her teacher to ask if she could be a student leader again – her third straight year. “This is what we hope kids learn: That they can make a difference,” explains Beckett.

In the first year of the event, some 700 walkers turned out to raise money for the vari-ous children’s charities. Last year, about 1,200 participated. This year, the event organizers are anticipating 1,500-1,600 in attendance.

Since the event is completely focused on kids, the organizers try to keep that in mind with their planning. Face painters and DJs are on hand to keep the atmosphere lively, and sponsors like Mejier offer hot dogs and granola bars. Panera Bread is donating bagels, Plum Market is offering fruit and Cosi is giv-ing away chips and carrot sticks.

The length of the walk is also key to keep-ing kids, well, walking. “It’s tough to find a race or walk that isn’t a 5k or a 10k,” explains Beckett. “With Kids Helping Kids, the walk has three options – one, two or three miles, which is easier for kids.”

Tough terrainYet raising money for any charity during

a sagging economy and a crowded field of other charities can be a challenge. According to a recent report from the Internal Revenue Service, 1.2 million charities registered with the department last year. That’s a 5 percent increase from the two previous years.

Beckett believes that with the focus on kids, the event will continue to draw interest – and dollars – for children like Annabelle. “To have Annabelle involved, it’s just amazing. People need a visual to see what’s possible, to see what Variety offers children. To have Annabelle help get the word out about what our organization does is just huge.”

Murphy says that she’s happy that she and Annabelle have been able to share their story with others. “I don’t just throw it out there,” Murphy explains of Annabelle’s experiences. Yet through their involvement in Variety and the Kids Helping Kids Walk, she hopes that “Annabelle will learn to be proud of who she is and what she can share with others.”

Last year, Annabelle joined her parents and her younger brother on the two-mile route of the walk, crossing the finish line with her dad – hand in hand.


Annabelle’s Story


TECH TOOLS

By Kristen J. Gough

Attention parents of kids with special needs: You know that help you’ve been hoping for? The folks at iPhone may just have ‘an app for that.’

Nifty Apps9Last year, Apple introduced a new phrase

into popular culture: “There’s an app for that.” The commercial that carries the voiceover explains: Need to find a restaurant? There’s an app for that. Movie times? There’s an app for that, too. Finishing with the slo-gan, “There’s an app for just about anything.”

If you have an iPhone – or you’ve tinkered with one – you might think this tagline is be true. After all, there are more than 150,000 apps available, offering everything from the silly (think the Lightsaber app for Star Wars fans) to the serious, such as The Weather Channel, USA Today and countless others.

The possibilities for those looking for a convenient technology to make informa-tion readily available is just beginning to be

tapped. With some Wall Street analysts pre-dicting that iPhone sales will top 37.3 million this year, no doubt more and more innovative apps are on the way.

For parents with kids with disabilities, smart-phone technology is a real advantage: convenient capabilities in one easy-to-carry package. “The iPhone has really been a breakthrough for kids with disabilities,” says Suzanne Robitaille, author of The Illustrated Guide to Assistive Technology (Demos Health 2010), who also blogs at abledbody.com.

“It gives kids some control in their lives, whether to monitor a chronic illness or to better communicate and socialize with their peers.” Here, you’ll find a few apps that might make life a little easier.


1. iSignBy iDev2.com, Free lite version, $4.99 for full version

Using animated figures to show you how to sign, this app teaches American Sign Language and, according to Robitaille, lets “Deaf people communicate with their hearing peers.” The free ver-

sion of this app is fairly limited with only 25 signs; the full version includes 800.

2. Glucose BuddyBy oneAppOneCause, Free

Robitaille explains, “This is a smart way for diabetics to track blood glucose, food, exercise and medicine.” She points out that “it’s not really designed for kids,” but

parents can still benefit from it.

3. FastMallBy MindSmack, Free

This free app allows users to find wheelchair accessible routes through retail stores and shopping malls. And when your child needs to go the bathroom, just shake

the app and it will lead you to the nearest one (again, that’s accessible with a wheelchair). The big drawback to this app is it doesn’t include every mall, so you should check to see if your favorite is listed before downloading. More mall sites are constantly being added.

4. PillboxCommunity Health Network, Free

Instead of trying to remember which medication you gave your child – and when – Pillbox can keep track for you. If you need to give your child’s health care

provider a list of what medications he’s on or how frequently he takes them, this app can be a quick reference.

5. Polka HealthPolka, $0.99

This app allows parents to keep track of their child’s daily health progress. What’s helpful with Polka Health is you can allow others to view updates that you enter.

You can select updates to make private or even enable a link to a Twitter account. For families who are trying to keep track of their child’s care from a distance (think overnight stay at grandma’s), this app could come in handy.

6. iPrompts Handhold Adaptive, LLC., $49.99

For parents with children who are autistic, have atten-tion deficit disorder (ADD) or attention deficit hyper-activity disorder (ADHD), this app can make working

through a daily schedule easier. The picture scheduler helps parents to guide children from one event to the next.

7. IEP ChecklistNurvee, Free

Developed by the Parent Educational Advocacy Training Center (PEATC), this app pulls together all of the information parents need to keep track of their

child’s individualized education program (IEP). An IEP is an action plan that educa-tors, parents, state and local educational agen-cies put in place to help meet the needs of stu-dents with disabilities. The federal Individuals with Disabilities Education Act mandates that students with special needs have IEPs.

8. The Americans with Disabilities Act ReferenceConnecting People Software, $0.99

Often, securing ser-vices for children with dis-abilities can be a challenge. This straightforward app includes the actual bill, dividing it into sections. It’s

a handy reference if you need to explain your child’s rights to someone who is unfamiliar with the language of the bill.

9. Proloquo2goAssistive Ware, $189.99

The hefty price tag is actually deceiving – this app is a great deal! For chil-dren who need help speak-ing, larger products, called augmentative and alterna-

tive communication devices, or AAC devices, can cost well into the thousands. Add to that, some of the bulkier versions were a real drawback for users. But with this iPhone app, users have a 7,000-word vocabulary ready and available. Plus, Robitaille say,s one additional draw – “There’s the coolness factor.”


“The iPhone really has been a breakthrough for kids with disabilities.” – Suzanne Robitaille Author of The Illustrated Guide to Assistive Technology


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