Make the Most of School - Living with CMT

[Guest guest]

QUEST Volume 2, Number 2, 1995

MAKE THE MOST OF SCHOOL - LIVING WITH CMT

by Lori Hungate

What do stairs, heavy doors, hallways filled with rushing feet and leg braces

have in common? They're some of the obstacles youngsters with

Charcot-Marie-Tooth (CMT) disease and other disabilities must face at school.

Schools are an ideal learning environment to develop social skills, to gain

knowledge for future jobs and to better understand our world. However, they can

be filled with barriers and be more than a little intimidating for those who

have physical disabilities.

Barriers are falling thanks to passage of the Americans with Disabilities

Act, the Education for All Handicapped Children Act (now known as the

Individuals with Disabilities Education Act, IDEA) and the Carl D. Perkins

Vocational and Applied Technology Education Act. These legislative measures are

giving people with disabilities the same public school opportunities as

able-bodied people.

However, students with CMT and other neuromuscular disorders continue to face

challenges at school. An understanding of CMT is the first step to dealing

with these problems.

Charcot-Marie-Tooth disease is a neuromuscular disorder that strikes the

peripheral nerves. CMT was named for the three physicians who first identified

it. The disorder most commonly affects the muscles of the feet, lower legs and

hands. Symptoms may include frequent stumbling caused by lack of muscle

strength to hold the foot flat (sometimes called " drop foot " ) as well as by

toes

curving downward. Very thin lower legs are often a visible characteristic of

the disorder.

Some children show few symptoms and their conditions may not be diagnosed

until late adolescence or early adulthood when the disease progresses. Others

have more pronounced disabilities, such as tripping, stumbling, grasping

difficulties and trouble walking long distances.

____________________________________

A STUDENT'S PERSPECTIVE

Margy Spezia, 36, a working mother with CMT who is pursuing a management

degree in Illinois, vividly remembers her early school years at a two-story

Catholic school. " The biggest physical obstacles I faced at that school were the

stairs, " she says.

When Spezia was in elementary school, she was able to walk fairly well with

braces, but was glad the teachers allowed her to leave early or come in late

to avoid stumbling or falling in crowds. There were no elevators, and only by

navigating slowly up and down the stairs was she able to receive a

" mainstream " education.

Steps, heavy doors, long distances between classes, and crowded hallways and

classrooms are only some of the obstacles youngsters with disabilities

encounter. As an adult continuing her education, Spezia now deals with a

different

set of problems prejudices of fellow students, lack of mentors with

disabilities, shortages of public transportation and a need for financial help

such

as scholarships and grants.

____________________________________

HOW KIDS CAN HELP

The most formidable obstacle Spezia faces now is the misconception ablebodied

students have about her disability. Spezia recommends communication to solve

this problem. She says her childhood friends understood her difficulties and

eagerly helped carry books or do anything else she needed.

For example, when she and her friends played in the school yard and were

called by the teacher, the solution was simple. " Some of my buddies would link

their arms together with me supported in the middle, " Spezia says. " We'd run

back to the classroom, laughing all the way. "

Spezia now volunteers with the Partnership Reading Program in St. Louis to

teach kids about differences among people. Believing it's important to share

information about disabilities because it leads to acceptance, she speaks to

MDA support groups and civic groups. She recently received an MDA Personal

Achievement Award.

Children in the reading program openly ask about her wheelchair and what she

can or can't do. With communication, understanding follows. " Now, " says

Spezia, " these children practically fall over themselves to be the one selected

to

help carry my books. "

Spezia tells students and their families to keep a good attitude, but don't

be shy. Voice your needs and be flexible. " I'm a great believer, " she says,

" that improvising is the best way to overcome obstacles. "

____________________________________

A TEACHER'S PERSPECTIVE

Harrington, an instructional assistant at the Danberry Orthopedic

School in Claremont, Calif., helps prepare children for mainstreaming in public

schools or, in cases of extreme mental disabilities, helps them learn life

skills.

The children in her class are 9 to 13 years old, with a variety of

disabilities. One of the most important ways a teacher can help them get the

most out

of school, she says, is to give love and security and provide a sense of

accomplishment through assigned projects.

" I believe they should be treated as children before they are treated as

handicapped, " Harrington says. She enjoys watching them learn. " But, like all

kids, they want to have fun, too. "

____________________________________

HOW FAMILIES CAN HELP

Harrington works closely at school with the teacher, nurse, occupational

therapists, physical therapists and many others to ensure that a program is

suitable for each student. " It's important that families stay involved with

staff

meetings, " she recommends.

The family can be the biggest source of encouragement for a student, but only

if they understand the strengths and weaknesses of the child. Family members

can learn much by attending scheduled school meetings with the staff. They

can find out about the child's accomplishments and limitations; how to qualify

for financial assistance; how to find public transportation; how health

agencies such as MDA can help; and much more.

Harrington says that one of the biggest barriers teachers face at school is

understanding each child's disease. " It's hard to know, for instance, the best

way to move them or pick them up. "

" It's another important reason, " she points out, " to have family input. "

Parents can pass information learned from doctors or clinicians along to the

teachers.

____________________________________

HOW MDA HELPS

Useful information developed especially for teachers can be found in MDA's

free brochure, " A Teacher's Guide to Duchenne Muscular Dystrophy. " It covers

issues relating to Duchenne, but much of the information pertains to other

disorders, including CMT.

MDA also shares information about the latest research findings by scientists

seeking the causes of, and treatments and cures for, the 40 neuromuscular

disorders in the Association's program. MDA provides diagnostic services and

therapeutic and rehabilitative follow-up care, support groups, summer camps and

also assists with the purchase and repair of wheelchairs. Numerous

educational materials and resources are available through local MDA offices

nationwide

or from MDA National Headquarters.

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