Students with muscular dystrophy require expert teaching, as well as a great deal of understanding, support and empathy from their teachers. This article gives teachers the basics about muscular dystrophy - what it is, what you need to know, how to work effectively with students and their families.
What Is Muscular Dystrophy?
Muscular Dystrophy is not really just one condition, but more a group of conditions which vary in severity, age of onset, prognosis and presentation. Muscular dystrophy includes the following types:
- Duchennes Muscular Dystrophy
- Distal Muscular Dystrophy
- Becker Muscular Dystrophy
- Emery-Dreifuss Muscular Dystrophy
- Limb girdle Muscular Dystrophy
- Fascio-scapulo-humeral Muscular Dystrophy
Common to the muscular dystrophy group of conditions is the fact that muscles gradually weaken and waste over time. The period of time this takes and the age at which symptoms are first noticed varies from one person to another. There is also variation in the rate of progress of the condition, with types such as Duchenne (a terminal disability) being one of the most severe and distal much less so).
The types more typically seen in a school environment would include Duchenne (onset from around age 2-6 years), Becker (onset from ages 2-16 years), congenital (from birth), Emery Dreifuss (childhood to teens) and Fascioscapulohumeral (teens to adulthood).
Some of these types of muscular dystrophy are more common than others, and it should be kept in mind that in terms of the overall population, muscular dystrophy is a fairly rare condition. However, as a special education teacher, you need to have a reasonable understanding of the needs, characteristics and changing abilities of students who have muscular dystrophy.
Duchenne Muscular Dystrophy
Many teachers would have heard of Duchenne Muscular Dystrophy, and it is likely that in your career as a special education teacher you will work with students who have this condition. The realities of Duchenne Muscular Dystrophy are harsh, and do not make for easy reading.
- Most students with DMD will be diagnosed in early childhood, as symptoms often present prior to school start age.
- The condition progresses fairly steadily, as all the voluntary muscle groups are affected over time.
- The first muscles to be affected are those around the pelvis, upper arms and upper legs.
- Students will need to utilize a wheelchair for mobility in their primary years (elementary age) and will often use an electric wheelchair once they no longer have the strength to propel a manual chair.
- People with DMD rarely live beyond their 20's, so it is categorized as one of the terminal disabilities.
Teacher Tips for Working With DMD Students
Teaching will involve careful planning and goal setting to support the student and their family. This should focus around an individual education plan (IEP) which will allow all parties to share concerns, provide emotional support, update each other on progress and outcomes of treatment, and set educational and therapeutic goals. A team approach is vital, as is a caring, accepting nature and an overall awareness of the likely long term outcomes for many students.
Teachers need to work closely with therapists to ensure they understand the progress of the condition, and how it impacts on classroom activities, and particularly on safety for the student. Remember that DMD is not a condition where you will see physical progress -- the reverse is true and you will observe a decrease in physical condition and ability over time. As a teacher, your role involves:
- realistic planning and teaching of educational content.
- the ability to engage the student in suitable, productive and enjoyable tasks.
- the ability to adapt the content to suit periods of absence, illness and changing abilities.
- skills in providing age appropriate content that takes account of factors such as fatigue, variable attendance, changes in mood and frustration and distress at a deteriorating physical condition.
- needing to support other students and teaching staff in the school environment.
- having an awareness of the needs of students with terminal disabilities.
On a positive note, many young people with DMD develop an interest in sporting activities such as wheelchair sports and sailing in boats such as the Access dinghy which provides sailing experiences for people with disabilities. Many children are also interested and engaged in less physical activities such as hobbies, crafts, technology based communication, social networking and art and drama. By introducing a child with DMD to a new activity, you are providing them with an opportunity to learn, meet new friends and extend their abilities and interests.