Guest blog by Tiffany L. Cook, MS, CCC-SLP
Words of advice from Wil’s elementary school Occupational Therapist, Jessica Berger, MOT, OTR/L, “When there are little breaks taken throughout the day, people often have more energy left than when they plow through their day and rest at the end.”
As a school-based Speech-Language Pathologist for more than 20 years and a Mom of a 17-year-old son with Duchenne muscular dystrophy, I can truly identify with the importance of conserving energy. Especially for individuals with Duchenne muscular dystrophy, conserving energy involves physical energy as well as mental energy. For this reason, experts recommended that parents and school-based personnel develop a plan together for individuals with Duchenne muscular dystrophy. Participation and involvement of the individual is also key in ensuring the effectiveness of the plan. While the type of participation may differ based on factors such as age and cognitive ability, it is important that the child is included in the planning process.
My years of experience taught me that routine and consistency are essential components in a child’s school life. These not only assist with the day-to-day happenings at 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
Use of an activity log can provide useful information on how to best plan an individual’s school day. The purpose of the log is to identify daily school activities that result in increased fatigue. Here is a sample activity log that we used for my son when he was in second grade. Similar logs, modified for home-based activities, can also be used by families at home.
Partnering the individual with their teacher and parent is important for the accurate completion of the activity log. With the individual’s involvement, this collaboration is also beneficial in fostering independence and teaching self-advocacy. I suggest completion of the log at the start of a new school year and at fixed intervals throughout the school year (i.e. quarterly, every 6 weeks).
Once areas are identified, then accommodations and/or modifications can be put into place to continue to provide access for the individual. There are many accommodations and modifications that can be implemented to help individuals with energy conservation and work simplification.
Below is a sampling of accommodations and modifications related to energy conservation. To learn more, go to: https://cureduchenne.org/care/navigating-school/.
|Eliminate Extra Physical Effort
|Adjust work station so that elbows, hips,
knees, and ankles are positioned at 90 degrees
|Have child sit in a chair instead of on the floor
|Keep items within easy reach to avoid overreaching
|Decrease the weight of items carried i.e. lunchbox,
|Keep heavier items at arm level
|Use adaptive equipment i.e. rolling backpack
|Place desk straight in front of instruction.
|Use pencil grips or thick pencils/pens to avoid
application of excessive pressure
|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
|Encourage good posture i.e. use back supports on
|Encourage sliding objects when possible to avoid
|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
|Reduce tasks that are not necessary
|Help in gathering all material prior to starting
|Eliminate tasks that involve busy work i.e.
|Build in rest breaks into daily schedule.
Sometimes a few minutes will be enough.
Other times a longer nap will be required
|Allow oral test taking in lieu of written to aide with
|Stop an activity BEFORE becoming exhausted
|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