Navigating School

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Adapting Education for Those Impacted with Duchenne

Those who live with Duchenne muscular dystrophy have physical activity limitations that need to be addressed at school.  Parents are encouraged to work with their schools to assist with decision-making regarding the most appropriate activities for the student to participate in, typically through the Individualized Education Program (IEP) process.  The IEP team includes the child, his parents/guardians, at least one regular education teacher, at least one special education teacher (if applicable), a school district representative, and an expert who can interpret the evaluation results.  Other members can include the physical therapist and parent advocate.

The Importance of Energy Conservation for Individuals with Duchenne

School can be an exhausting experience for many individuals. For individuals with Duchenne muscular dystrophy, school can be exhausting both physically and mentally. The principles of energy conservation and work simplification can often provide ways to convert a school day from feelings of exhaustion to enjoyment. Energy Conservation, related to the human body, is the manner with which daily activities of an individual are performed using a reduced amount of energy/exertion.  For example, the act of tying shoes with laces requires much more physical exertion/energy than using Velcro closures.  For individuals with Duchenne muscular dystrophy, conserving energy can assist with prolonging his/her ability to actively participate in many tasks.

Below is a letter from Jennifer Wallace Valdes, PT, we recommend you download and print or otherwise share with your child’s teacher at the beginning of the school year. This will help familiarize them with your child’s special circumstances and needs.

Letter to Teacher

Routine and Consistency

Routine and consistency are essential components in an individual’s school life.  These not only assist with the day-to-day happenings of school, but also assist with teaching a core character trait of responsibility. For individuals with Duchenne muscular dystrophy, routine and consistency can assist with their ability to understand and recognize various needs of their bodies.

Where to Start

It is recommended that parents and school-based personnel partner together to develop a plan for individuals with Duchenne muscular dystrophy. Participation and involvement of the individual is also encouraged to ensure the effectiveness of the plan.  The type of participation may differ based on factors such as age or cognitive ability, but it is important that the individual is included in the planning process.

In order to plan an individual’s school day, it is important to capture information regarding activities, time of day, and tasks which lead to increased fatigue in an individual with Duchenne muscular dystrophy.  An activity log is a simple tool that can be customized to reflect an individual’s needs.

A sample activity log is included in this Duchenne overview for educators. This resource also has helpful information to share with teachers and school-based personnel to help students with energy conservation and work simplification.

Overview for Educators

It is important that an activity log is created in collaboration with the individual’s teacher, parent, and the individual. Once a customized log is created, the initial implementation should be completed over a pre-determined time frame (usually 3-5 school days). A review of the completed log should reveal the specific activities/tasks in need of energy conservation accommodations and/or modifications.

Incentives can also be embedded in the activity log in order to maintain buy-in from the individual and to teach him/her the importance of energy conservation.  With consistent use, an activity log can be a wonderful tool in fostering independence and teaching self-advocacy for the individual with Duchenne muscular dystrophy.

It is important to remember that, due to the nature and progression of Duchenne muscular dystrophy, a review of the log should be scheduled at pre-determined intervals (i.e. quarterly, every 6 weeks) over the school year.  Additionally, the log should be viewed as a fluid document in order to make necessary adjustments as needed.

Accommodations and Modifications

There are many accommodations and modifications that can be implemented to help individuals with energy conservation and work simplification. The sampling below includes ways to adjust the classroom set-up, ways to eliminate unnecessary physical effort while still being an active participant, advanced planning when possible, and ways to establish priorities.

Here is a sampling of Accommodations and Modifications related to energy conservation:

  • Adjust work station so that elbows, hips, knees, and ankles are positioned at 90 degrees
  • Keep items within easy reach to avoid over-reaching and bending
  • Keep heavier items at arm level
  • Place desk straight in front of instruction.  (Avoid side-facing)
  • Use of a chair instead of sitting on the floor. Consider having all students in chairs so as not to isolate the individual with Duchenne
  • Have child sit in a chair instead of on the floor
  • Decrease the weight of items carried i.e. lunchbox, backpack
  • Use adaptive equipment i.e.  rolling backpack
  • Use pencil grips or thick pencils/pens to avoid application of excessive pressure
  • Encourage good posture i.e. use back supports on chairs
  • Encourage sliding objects when possible to avoid lifting/carrying
  • Consider assigning a buddy to help i.e. to pick up items from the floor; tying shoes
  • Do not begin an activity that cannot be stopped
  • Help in gathering all material prior to starting a project
  • Build in rest breaks into daily schedule.  Sometimes a few minutes will be enough.  Other times a longer nap will be required.
  • Avoid rushing
  • Schedule adequate time for activities
  • Alternate tasks throughout the day- balance between level of physical intensity (low/high) For example, first snack time then PE.
  • Build in time for campus transitions.  If ambulatory, allow for rest stops along the route.
  • Avoid stairs as stairs increase the stress on the muscles and hastens muscle damage
  • Avoid overscheduling activities between home and school (maintain communication lines)
  • When scooter/wheelchair is part of equipment in use, utilize this for distances over 100 feet
  • Reduce tasks that are not necessary
  • Eliminate tasks that involve busy work i.e. homework
  • Allow oral test taking in lieu of written to aide with energy conservation
  • Stop an activity BEFORE becoming exhausted

Why is it so important to adapt physical education for individuals affected by Duchenne?

Squats, sit-ups, push-ups, pull-ups, running, and weight training are examples of typical activities incorporated into physical education.  With Duchenne muscular dystrophy, these types of activities lead to muscle damage.  It is recommended that such strenuous activities be avoided.

There are many appropriate and safe modifications that can be incorporated into PE activities to continue to provide access for those individuals affected by Duchenne. Examples include:

  • Allowing the individual to lead the class in stretching routines
  • Having the individual serve in the role of team “coach”
  • Participating as scorekeeper or timer

These modifications maintain the instructional expectation of learning and understanding athletics/sports while avoiding unnecessary demands on their bodies.

More Resources

The CureDuchenne Resource Library contains helpful videos and handouts on navigating school.

School Resource Library

Sources:
Tiffany L. Cook, MS, CCC-SLP
Jessica Berger, MOT, OTR/L
Doran, P. R. (2016). PANDAS and PAN in School Settings: A Handbook for Educators.

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