Allyson DuPont uses a laptop computer during class and for her homework. Photo by David Witbeck.

Most children with neuromuscular diseases can do the same level of schoolwork as their classmates; many are intellectually gifted. But in-class and homework assignments present special challenges for any child who can't lift or hold a book, or even a pencil.

Some kids with neuromuscular disorders can write an assignment by hand -- at the price of great fatigue for the rest of the day. Some can do math problems rapidly in their heads but need extra time to get them down on paper. As students progress through high school and college, finishing exams in the time allotted and writing long papers present new obstacles to weakened muscles.

Federal and state laws require schools to make necessary modifications to enable students with disabilities to do their work. Parents, teachers and students can work together to find and create modifications assuring that these children get the appropriate level of educational challenge.

THE MIND IS FASTER THAN THE HAND

In Jamie, a Literacy Story, teacher Diane Parker tells how first-grader Jamie Panui enjoyed writing. But because of spinal muscular atrophy, "she couldn't write as much as she wanted to because her arm muscles were so weak. It required a great deal of effort to exert enough pressure on her pencil to make her writing readable."

To prevent Jamie's disease from interfering with her academic progress, Parker allowed her to use pens or markers in class because they were easier for her to hold and manipulate than pencils.

Hand and arm weaknesses are typical challenges faced by elementary school students with neuromuscular disorders. But not all teachers are as perceptive or concerned as Parker. Often a parent has to help a teacher understand why such an exception should be made for a child with muscular dystrophy, especially if the child is bright.

Lina DuPont of Cranston, R.I., said her daughter Allyson "tends to be a bit confusing" to teachers. Allyson, 11, has SMA and is a fast learner.

DuPont told one teacher, "You need to remember that with Allyson her pencil weighs about 10 pounds after she's used it a while."

When Allyson was scheduled to take standardized tests that required filling in circles to indicate her answers, her teacher was concerned that she couldn't complete the test in the time allotted. Mrs. DuPont came up with a solution:

"She put just a little dot, a pencil dot, and her aide colored them in. And she finished ahead of most of the other kids. There was no time modification or anything that would invalidate her scores."

DESKTOPS AND LAPTOPS

The San Clemente, Calif., elementary school that Brandon and Bentley Lovrien attend has desks adjustable to their wheelchairs. A special needs teacher placed containers on their desks so "instead of having the boys reach under the desk, they could easily get their stuff off the top," said their mother, Lynn.

Lovrien anticipates that the boys, now 11 and with Duchenne muscular dystrophy, will soon need more assistance in class. They've begun to use laptop computers, which the school provides.

Bentley (left) and Brandon Lovrien have all their books and supplies placed on top of their desks. Photo by Linda O'Neill.

When Allyson DuPont was in second grade, her mother noticed that she was getting very low scores in math because she only did a few of the problems assigned. Allyson explained, "We only had a minute to do them and that's as many as I could write."

By fourth grade, "My homework was like double with work that I had to do because I didn't finish it at school," Allyson said. "Then I got my computer and it did go down. This year, I usually don't have more than two hours of homework."

The DuPonts first got an aide to assist Allyson in class. Then they looked into getting a computer for her to use during class. In 1997, the school purchased a laptop to meet the family's specifications, including some special features available to help people with disabilities.

Instead of a track ball or mouse, Allyson's computer has a touch pad. She'll soon be adding a scanner and E-Z Keys, a word recognition program that allows her to pick a word from a list, based on the first few letters, instead of typing the whole word.

"I use my computer every time I have any story to write or an essay, any kind of work in the book that you have to copy, anything that you have to write out the answers for," Allyson explained.

For instance, if the teacher writes math problems on the board, Allyson's aide types them on her laptop, then Allyson types in her answers. She can write down words for spelling and fill in short answers by hand, but generally uses the laptop to write a sentence or more.

To prepare to use the computer in school, Allyson took some classes and practiced on the family's home computer. A home health aide helps with homework by typing what Allyson dictates.

QUALITY, NOT QUANTITY

At times, Allyson is allowed to do a smaller volume of work than her classmates. This modification of assignments, in which the student with a disability does just enough work to show understanding of the topic, is often used in elementary, middle and secondary schools.

Evan Stutman's primary modification is reducing the amount of work he does. A seventh-grader in a gifted program in Denver, Evan does his own handwriting and gets a copy of notes from his teacher. But his Duchenne muscular dystrophy causes him to get tired quickly. He has an hour's rest built into every other day at school and occasionally needs to lie down for a while.

To keep his fatigue at a minimum, Evan, 13, uses a scooter at school, though he's still ambulatory. He also leaves one set of textbooks in the classroom and keeps another set at home for homework so he doesn't have to carry heavy books around.

"It's in his IEP [Individualized Education Plan] that his assignments can be modified; that as long as we cover the content matter, if we have to shorten an assignment, it can be done," his mother, Judi, said. If he's fatigued, Evan may do about half the number of math problems his classmates do, or write a five-page paper instead of a 10-page one, she said.

But not all teachers "do this willingly," and Stutman herself usually decides what part of an assignment is "busy work" that Evan doesn't need to do. It's a matter of constant and frequent negotiation.

"If there's enough notification on the assignment, if they can tell us there's a paper due in a month and the length of the paper, then you can space it out 10 to 15 minutes a day. When they give short notice, that's when there's problems," Stutman said. "One of the things in his IEP is, give us the information as soon as it's possible."

The Lovrien twins also get very tired by the end of a day at school. "They would write all day in school, and when they came home it seemed they would peter out on me with their homework. It was a real obvious fatigue," Lynn Lovrien said. "They really verbalize, 'Mom, I'm tired. All these sentences today and my hands are really tired.'"

Lovrien lets the boys rest a while at home before doing their homework. She also encourages them to let others push their wheelchairs so they can keep their arms and hands rested for writing.

RIGHT-HAND ASSISTANT

For many students with neuromuscular diseases, having a one-on-one aide in the classroom proves the best solution, beginning in elementary school and continuing through college. Over time, student, aide and teacher figure out how the aide can provide the most assistance and the least interference.

Ian Newman of Scotia, Calif., used an aide in school from sixth grade until he graduated from high school this spring. Public schools must provide an aide to meet the needs spelled out in the IEP.

Cheryl Christina was Ian Newman's school aide throughout high school. Photo by Brandi Easter.

"I had the same assistant all through high school. She took notes, transcribed whatever I would dictate to her, organized my books. She was with me all the time, except for lunch," Ian said.

Ian, who has congenital muscular dystrophy, said he and his assistant, Cheryl Christina, developed a system for taking notes as he wished. "At first I had to tell her, and then she began to see how I thought and vice versa. This last year I really haven't had to direct her very much. All in all, it's way better than if I tried to do it on my own. We were like a well oiled machine."

Ian's aide also wrote papers he dictated, got books out of his backpack and helped him with tests.

"I cleared it with my teachers at the beginning of the year that, especially for essay tests, I would need to leave the classroom with the aide and go to the library and dictate there. The teachers were fine with that," he explained.

Ian's teachers were usually happy to approve of his accommodations because he was an exceptional student. He skipped three grades during his school career and will enroll as a freshman at the University of California at Berkeley this fall, at age 15.

But some students resist having an aide in class.

Judi Stutman said Evan doesn't like his disability to make him conspicuous. "If we were to ask Evan if he wanted an aide, I think he would say no just because he wants to be like all the other kids. He's real independent and I think we have to nurture independence. I think an aide sets them aside one step further from the other kids."

TAKING NOTES

Adam Schumacher developed his own note-taking shorthand system for college.

College students frequently have a note-taking assistant in lecture classes, generally available through the college's program for students with disabilities. Others request that teachers provide written copies of notes, use tape recorders or copy another student's notes.

Adam Schumacher of Minot, N.D., had an assistant in elementary school to whom he dictated workbook answers. Later he developed other modifications.

"I was always mainstreamed. I never did any less work than other students. I compensated by being able to work a lot more efficiently," he said.

He tried using a tape recorder in seventh grade but found it to be "more work than it was worth. The problem was transcribing took so much time." A laptop computer worked better.

Retaining some use of his hands, by high school, he preferred taking his own notes. "The notes were on the board. I could keep up," said Adam, 22, who has SMA.

When he entered Georgetown University in Washington, D.C., Adam tried note takers but didn't like that system. Instead, "I take my own notes," he said. "I have someone to help position my arms. I've developed a good personal shorthand. I learned to get the gist of it, write what's important."

Between his own shorthand in a small notebook and use of the laptop, he was able to get the class notes he needed in college. "About five times a semester a professor gets ridiculously fast. Then I photocopy someone else's notes," he said. For some mid-term and final exams, he was allowed to take the test in his own apartment, using a computer and under the eye of a proctor.

Adam graduated from Georgetown this spring with a degree in economics. He was hired by a Washington economic consulting firm. The working skills he developed in school will no doubt help him on the job.

RESOURCES

"The ABCs of an IEP," Quest, no. 3, 1996

"The Brain in Duchenne Dystrophy," Quest, no. 1, 1997

"First Day of School," Quest, no. 4, 1997

Jamie: A Literacy Story by Diane Parker, 1997. $14. Stenhouse Publishers, P.O. Box 360, York, ME 03909; (207) 363-9198.

MDA's brochure, "A Teacher's Guide to Duchenne Muscular Dystrophy"