ADJUSTMENT TO SCHOOL

Starting kindergarten, or going to a new school, requires an adjustment for any child. For a boy with DMD, it may awaken anxieties about being away from home or feeling physically vulnerable. You can help ease these fears by expressing positive thoughts and assuring your son he'll enjoy and do well in school.

It also helps to prepare his teacher. MDA's booklet, "A Teacher's Guide to Neuromuscular Disease," provides an excellent explanation of the disease and how it affects the student daily. The teacher should be familiar with your child's condition from the IEP process.

Some parents choose not to tell teachers about their children's diagnosis until the symptoms affect their mobility or stamina. When you do speak with a teacher, emphasize that your son should have the same expectations and responsibilities as any other student in his grade, within his physical limitations. You'll want to be sure the teacher doesn't express sadness, pity or other attitudes about your child's condition that might embarrass him.

When teachers and classmates are given information about a child's muscular dystrophy, it helps the child adjust and make friends.

Your openness with the teacher about your child's needs will help her assist in his adjustment to school. Be sure she understands that his disorder is progressive, and his physical capacities may change in the course of the year. She can be reassured by you and by local MDA staff that having a child with DMD in her classroom won't make her job more difficult. With some patience on her part, it can be a great learning experience for the whole class.

Children ask very direct questions when they see something unfamiliar, so you should expect your son's classmates to want to know why he "walks funny" or has "those things on his legs" or uses a wheelchair. Direct, brief, accurate answers will generally satisfy youngsters.

Many parents of children with disabilities have found it helpful to go to school on the first day of class and introduce their child, briefly explaining in simple terms what his condition is and how his equipment helps him. MDA has two booklets, "Everybody's Different, Nobody's Perfect" and "Travis: I Got Lots of Neat Stuff," that help young children understand that they can be friends with kids with muscular dystrophy. You could read one of these books to the class or ask the teacher to do so.

After kindergarten or first grade, it's better for the teacher or the boy himself to make this presentation, because he may be embarrassed at having his parent "take care of him" at school. In the upper elementary grades, your son could give a report about his adaptive equipment or answer questions about his disease, if he's comfortable doing so. The more relaxed and accepting he -- and you -- are in talking about his condition, the more quickly other children will accept it as part of him, and forget their fears about it.

Classmates often enjoy helping a child with a physical disability.

Some schools welcome programs on disability awareness and will see your family and MDA as a great resource. With the help of your local MDA staff, you could arrange such a program, with speakers, demonstrations and lessons. You can raise the students' awareness of architectural barriers and help them understand that disability can happen to anyone. It's important that such programs cover several types of disabilities so your son won't feel singled out.

The health care service coordinator at your local MDA office is a good resource for solving adjustment problems or misunderstandings that arise. Sometimes an MDA person can help communicate your child's needs to teachers, school officials, students and their parents.

Your child's own personality will help him win friends. In elementary school, it isn't uncommon for classmates to compete for the opportunity to carry the books or lunch tray of a classmate who uses a wheelchair. They'll most likely come to like him and see "helping him" as an honor and a source of pride.

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