A Teacher's Guide To Duchenne Muscular Dystrophy by Patricia B. Porter, Ph.D Colin D. Hall, M.D. Faye Williams, M.A.

Potential Problems Affecting School Behavior and Attendance

Medical Issues

When a child with Duchenne muscular dystrophy enters a school, it is important for the teacher to be familiar with aspects of the child's medical condition that could affect school experiences. Such information can help a teacher plan and support the child's school involvement.

 Q  How can a child's muscle weakness affect school participation?

The child's muscle weakness may be visible in a variety of ways such as the manner in which he walks, uses leg braces or uses a wheelchair. However, the rate at which this muscle weakness progresses and the loss of functioning that results will vary from year to year or month to month. Therefore, it is important to notice changes in a child's ability to do various activities.

Potential obstacles in school include: difficulty in taking notes quickly or for a long period of time, slowness or inability to get ready for class (lifting a book and opening it to the correct page, getting out a pencil and paper, etc.), need for assistance with toileting, and inability to rise from a seated position on the floor or in a chair to a standing position. The most effective way of determining the limits of a child's physical abilities is to discuss them sensitively and openly with the child and parents. Contact with medical staff who are familiar with the child can also provide such information.

It can be frightening for a child to realize that his physical abilities are becoming more limited. A supportive relationship with the teacher can allow discussion of feelings in a non- threatening environment.

 Q  How can visits to the medical clinic affect a child's behavior at school?

Children with Duchenne muscular dystrophy who receive consistent medical care have more medical clinic visits than the average child. They may visit clinics three or four times per year, or even more often, depending on the child's individual needs. These clinic visits may affect each child in a variety of ways. For any child, visits to medical clinics are a change in routine from daily attendance at school. A child may anticipate this cheerfully, or may feel a great deal of anxiety related to an altered schedule. During clinic visits medical staff are prepared to support the child in various ways. They're able to give him and his family medical information to help them understand the progression of muscular dystrophy. They'll encourage the child to focus on cognitive rather than motor abilities and give him ways to use the strength remaining in the muscles for as long as possible. In clinic, the child has the opportunity to see others who are affected with the same disease. This can create shared feelings about similar frustrations and adaptations, but may also be difficult should one child see another whose muscular dystrophy has progressed to a more severe degree.

The teacher can play an important role in a child's experiences at the medical clinic. Contact with parents can encourage their sharing with the teacher how they and the child feel about the clinic visits. Both before and following clinic visits, the teacher can recognize behavioral changes and may be able to make accommodations by allowing a child to express feelings about the experience.

 Q  How can adaptive equipment affect a child in school?

At various stages in the progression of Duchenne dystrophy, a child may use leg braces or a wheelchair. Many types of adaptive equipment may also be used to help the child function as independently as possible despite a physical disability. Adaptive equipment may include items such as feeding utensils and special cups, a foam rubber cylinder that fits over a small pen or pencil to make it easier to grasp, tape recorders, jar openers, and devices to aid buttoning and zipping. Although these devices are not familiar to most people, a teacher who is familiar with adaptive equipment can facilitate acceptance and use of these "tools" that encourage the child's independence.

Non-Medical Issues

In addition to medical concerns, many questions arise in the minds of classmates, parents and teachers when a child affected by muscular dystrophy attends their school. There may be questions about the child's adjustment to muscular dystrophy and uncertainties about how to interact with the child. Some frequently asked questions are addressed in the following section.

 Q  How much does/should the child know about the disease?

Children are usually best able to cope with their disease and treatment if they know as much as possible about it. Parents and the child are usually told by the clinic team what is known about the diagnosis, methods of treatment, and the chances of controlling or curing the disease.

It is not generally prudent to assume that a child has been told about the disease. A teacher may obtain information about the student by asking his parents, who can be an excellent resource. The medical clinic staff can also provide general information about Duchenne muscular dystrophy, as well as about a specific child, if parental permission is given for the exchange of such information between the school and the clinic.

Openness with the child who has Duchenne muscular dystrophy is very important. When a teacher shows sincere interest and feels comfortable speaking with the child about his abilities, the child is likely to feel comfortable about asking questions and expressing his own feelings, which might not otherwise be acknowledged.

 Q  How should the teacher respond to classmates' questions regarding a child who is affected by muscular dystrophy?

Accurate information is also very important for peers to cope with a classmate's disease. The child may be reluctant to have his disease discussed and some parents may be hesitant for others to know about their child's disease. Discuss with the child and his parents their feelings about this before giving information to classmates.

It can help a class to know about the type of muscular dystrophy that affects their classmate, the nature of treatments such as physical therapy, and ways the disease may affect a child's appearance, abilities and behavior. This open approach can be useful, particularly in helping children develop an understanding of matters such as why an affected child can do some things one month and may not be able to do the same things two months later. With accurate knowledge about muscular dystrophy, peers are less likely to tease and more likely to defend the affected child against inconsiderate remarks from others as visible changes occur.

 Q  What possible visible changes might occur?

• Walking on tiptoes.
• Large calf muscles, but weak legs.
• Leg braces.
• Use of wheelchair.
• Slow movements.
• Becoming tired easily.
• Use of adaptive equipment.

 Q  What classroom activities can the teacher use to convey information?

• Lectures and presentations of various types of adaptive equipment.
• Experiential presentations (allow classmates to sit and ride in wheelchair and use adaptive equipment).
• Small group discussions (have classmates brainstorm ideas about how to adapt to physical disabilities with examples such as a broken arm).
• Question and answer sessions.
  Many children with dystrophy prefer direct questions. A remark such as "You can't walk. How come?" may seem rude or cruel to some adults. However, children with disabilities often prefer such a question to a mute stare or someone turning away from them.

 Q  Does Duchenne muscular dystrophy affect mental development?

Some children with Duchenne muscular dystrophy also have cognitive difficulties. However, this is by no means always the case, and many children with Duchenne muscular dystrophy have above-average intelligence. Several researchers have suggested that mental problems among children with Duchenne may be particularly common in areas of verbal learning abilities. It is extremely important to evaluate each child independently, and to keep in mind that slowness and limitations in physical abilities can often be misinterpreted as a cognitive problem. If a child takes several extra minutes to get his paper and pencil ready to write, he may have missed the instructions that other children were prepared for. Timed tests and those that require a great deal of writing often penalize a child who is unable to write quickly or for long periods of time.

Intelligence testing methods are often not appropriately adapted for children with physical disabilities. Some children lack exposure to formal education or are inappropriately placed for an extended period of time due to misinformation on the part of schools, parents or professionals in regard to the needs and abilities of the child with muscular dystrophy.

Speech, language and learning disabilities, or emotional disturbances among children with Duchenne are often assumed to be directly related to muscular dystrophy. Although some children with muscular dystrophy may exhibit these difficulties, they are not symptoms directly caused by the disease.

It is important to recognize that, if children with Duchenne dystrophy do have cognitive problems, these are stable and do not get worse as the disease progresses.

 Q  What school services should be provided for a child with Duchenne muscular dystrophy ?

Every child with muscular dystrophy should have an Individualized Education Plan that is updated with psychoeducational testing, teacher reports and an annual parent conference. Each child should receive adequate services based on measured rather than assumed capabilities. Information from an orthopedist or physical therapist on the child's medical team should be taken into consideration in order for an adaptive physical education program and/or physical therapy to be provided as part of school services.

Dealing with a progressive, chronic illness requires some form of coping on the part of a child with Duchenne dystrophy. The pervasive impact of such a disease can make individual guidance and counseling a very important aspect of the child's school experience. In some instances, the teacher may be able to provide for the child's needs in this area. In others, coordination of classroom experience with additional individualized counseling may be appropriate. The child's emotional needs are certainly a necessary consideration in providing services in the school setting.

 Q  What physical barriers might limit school participation of children who are affected by muscular dystrophy?

A child with muscular dystrophy faces increasing numbers of architectural barriers as the disease progresses. As muscles weaken, heavy doors, steps and long distances all become obstacles. There are additional considerations for a child who uses a wheelchair. Doorways must be wide enough for the wheelchair, privacy for toileting needs should be provided, water fountains must be at wheelchair level and going through the lunch line in a cafeteria should be facilitated. As the child weakens to the point of being unable to propel his own wheelchair, responsible students and adults should be conscious of providing the child with choices about where he wants to go when choice is possible.

Since a child with Duchenne dystrophy has decreasing control of physical activities, allowing choices and some form of control is extremely important.

Physical education is often denied children with muscular dystrophy. However, this is an important aspect of their school experience. For physical and social reasons, the child should be encouraged to participate. Keeping score for games such as volleyball and basketball can give the child an opportunity to participate in these activities with classmates, and to share his enthusiasm with success and his disappointment with failures. In every situation, lighter weight equipment and modified activities should be explored as options for the child with muscular dystrophy. For example, have a student push the child in a wheelchair from base to base and have another student bat for him.

 Q  Why is it important for the child affected by muscular dystrophy to remain in school?

Children who do not live to adulthood will spend a major part of their lives in school, and a good educational and social experience will greatly enhance the limited time available to them. Those who do survive into adulthood are rarely able to participate in demanding physical work, and will depend on educational skills to obtain gainful employment and personal satisfaction. Because of the variety of social and architectural barriers prevalent in many communities, school may provide the only opportunity these children have to interact with peers or adults other than their family members.

The numerous potential problems discussed in this booklet point to misinformation as the primary cause of school difficulties. If a teacher obtains accurate information and facilitates open communication between the school and the medical care team, as well as the parents, the child can and should continue to participate actively in school.

 Q  How does Duchenne muscular dystrophy affect a child's behavior in school?

The child with chronic illness has significant difficulties that require special services and attention. However, first and foremost, he or she is a child with needs common to any other child. There is no personality type or behavior associated with muscular dystrophy. There are some children with muscular dystrophy who are quiet and reserved, some who are very social and interact well with peers, and others who are not able to behave appropriately without specially structured situations. As with all children, it is important for the child with muscular dystrophy to be treated equally. Emphasis on abilities and praise for accomplishments are needed. Consistency in discipline and a clear explanation of rules should be provided. It is important for every child to feel that he is significant and also to know that behavioral limits have to be recognized.

Progression of muscular weakness may cause behavioral reactions at any stage of the disease, depending on the child and his means of coping. This is not abnormal behavior. It is a child's attempt to deal with a difficult situation. Support, understanding and consistency on the part of teachers and peers can facilitate healthy coping and adjustment.

Special Problems of Secondary School Students

Adolescence is a time of great change for all youngsters. Physical and emotional development often causes the young person, his family and his teachers confusion and frustration. But these changes are acceptable, tolerable and welcome when viewed from the broad total life perspective. Recognizing that this is a period of transition from childhood to adulthood and from dependence to independence allows the adolescent and those around him or her to better understand the changes that are occurring.

For the youngster with degenerative neuromuscular disease, however, the direction of these changes is not so clear. When most of his peers are becoming more independent, Duchenne muscular dystrophy challenges his attempts to do the same. As his friends prepare for long and healthy futures, the young adult with Duchenne muscular dystrophy faces the frightening prospect of a much shortened life span. Although many of the problems experienced by younger students with Duchenne muscular dystrophy are shared by the older student, the high school student experiences a set of unique concerns.

 Q  How does Duchenne muscular dystrophy affect an adolescent's attempts to become independent?

The disease often interferes with a youngster's attempts to gain independence. Lessening muscle control may limit the ability of the adolescent to move his wheelchair by himself, to take care of toileting needs, to feed himself, to turn pages of books or to write. The adolescent is often placed in a position of being cared for like a much younger child. The difficulties resulting from a youngster's limited muscle strength can be remedied in a variety of ways. Assigning a "buddy" to assist with toileting, feeding and classwork is an acceptable possibility. It is enormously important, however, to allow the youngster to have a say in how his difficulties are managed at school. Options for management should be reviewed by the medical and educational team -- occupational therapist, physical therapist, clinic-teacher liaison and classroom teachers. The ultimate decision, following presentation of the acceptable options by the team, must be the student's.

 Q  What are some practical suggestions to assist the secondary teacher in meeting the needs of a student with Duchenne muscular dystrophy?

Accept changes that are apt to be rapid and visible. Modify teaching methods in order to continue stressing cognitive aspects of learning; decrease emphasis on motor-dependent areas. Allow the student extra time to take tests and encourage the use of a tape recorder in class for note taking when writing becomes too difficult. Project the attitude that you are glad the student is in your class.

Continue participation in physical education classes. The student should be allowed to get class credit by writing reports, making presentations, constructing visual aids, and being scorekeeper or referee.

Allow the student who uses braces and a walker or wheelchair to leave classes a few minutes early in order to get to the next class on time.

 Q  What are the principal factors that influence an adolescent's ability to participate successfully in secondary school?

Junior and senior high schools are more complex than grade schools. The student will have to interact with several teachers in a variety of settings. The student may have particular difficulty moving around in a large school building and changing classes, especially when the halls are crowded. Also, the pace of academic work changes in the secondary grades. There are more deadlines and independent work is emphasized. It is important for all teachers working with the youngster to be aware of the disease, its course and the effects it has on physical abilities. It must be the responsibility of each teacher to see that appropriate adaptations are made in the classroom to accommodate the physical and learning capabilities of the student with Duchenne muscular dystrophy.

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