Education Supports

What you need to know

It is important to have HIGH LEARNING EXPECTATIONS for children who have Neuromuscular Disorders. Encourage use of the core educational curriculum and modify it in order to meet the individual needs of the child.

It is important to have high expectations for children who have neuromuscular diseases. Some students will need physical or learning supports, based on their particular condition and stage. It is important to discuss the child’s individual needs as a team. Many of these conditions are progressive.  It is important to have high but realistic expectations for each child.

Even with normal intelligence, individuals can have muscle weakness and fatigue.  This can make it hard for students to keep up with physical demands of handwriting, completing their assignments, and organizing materials.

This may affect learning to read, understanding math or different concepts. Unlike muscle weakness, cognitive effects usually are not progressive over time. 

What you can do

Consider therapists and specialists to consult and support the classroom teacher.

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  • Help ease the side effects of neuromuscular diseases by keeping the body flexible, upright, and mobile.
  • Help prevent contractures or “freezing” of the knee, hip, feet, elbow, wrist, and finger joints by employing range-of-motion exercises and stretches.
  • Swimming pool exercises are often effective, especially in a warm pool.
  • Safe transfers of non-ambulatory students is critical. Aides, teachers, and other caregivers should receive appropriate training.
  • Ensure the student has appropriate musculoskeletal support and on-going treatment for prevention of scoliosis related complications.

  • Ensure child has special feeding utensils and cups as needed.
  • Hand splints keep the wrists and fingers in a good position.
  • Work on dressing and daily skills to keep independent.
  • Adapt play, environment, and routines as needed.

  • Encourage use of assistive technology such as tape recorders
  • Alternative communication system may be needed.
  • Assistive/augmentative devices for communication may be needed.

  • Communication devices
  • Computer adaptations and software
  • Tools to help with everyday tasks
    • Special feeding utensils and cups
    • Straws
    • A foam rubber cylinder for grasping pens and pencils
    • Tape recorders
    • Slanted desk top
    • Trays, may need sides
  • Standing frames allow non-ambulatory students to continue to bear weight on their legs which promotes:
    • Better circulation
    • Healthy bones
    • Straighter spine.
  • Transfer boards and mechanical lifts make it easier and safer to move a non-ambulatory student.
  • Walkers, wheelchairs, and foot, ankle and leg braces keep children safely mobile and enables them to interact and play with their peers.

General  Accommodations for Neuromuscular Dystrophies

Consider these ideas in supporting the children who have muscular dystrophy:

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  • Special transportation
  • Physical and occupational therapy
  • Minimize exposure to infection
  • Curriculum modifications (as needed)
  • Aides and note takers
  • Tutoring
  • More time on tests
  • Adapted keyboards, software and calculators
  • Adaptive physical education
  • Rest time
  • Bathroom assistance
  • Field trip assistance
  • Extra time to pass between classes
  • An extra set of textbooks to keep at home to minimize carrying a heavy load
  • Classroom and school campus accessibility modifications
  • Assistance in making friends and maintaining social relationships
  • Alternative ways to demonstrate understanding of a concept
    • Oral report instead of a written report
  • Peer supports and using computer-assisted learning
  • Using special education strategies for:
    • Learning
    • Memory
    • Language-processing difficulties
  • At-home instruction for children who miss school due to illness, etc. requires:
    • Consistent support
    • Communication between school and home
    • Follow-through and high expectations
    • Inclusion of students with disabilities in social and extracurricular activities
  • Allow children as much independence as possible
    • Especially for those in middle school and high school, but for all ages
    • Make sure they have chores like everyone else
    • Allow individuals to develop emotional and social independence while physical dependence may be decreasing.

Boys with DMD have an increased chance for developmental, cognitive, learning, and behavioral problems. Boys with BMD may have cognitive impairment however it is not as common or as severe as in DMD. They often have difficulties with active working memory and executive memory.

Characteristic learning problems:

  • Difficulties due to short-term verbal memory
  • Deficits in visuospatial as well as verbal auditory
  • Generalized deficits in cognition and adaptive functioning
  • Problems with planning and organization
  • Difficulty with understanding complex verbal information
  • Expressive language delays
  • Difficulty with goal orientated behaviors and lack of mental flexibility
    • Get stuck on one idea and have a hard time shifting thinking away
  • Dyslexia
  • Dyscalculia (math disorder)
    • A weakness in math reasoning ability
      • Hard time with math concepts
      • Difficulty estimating amounts
      • Hard time with understanding value, greater than, less than, or understanding abstract math concepts
      • Hard time with math because memory for math operations is challenged
        • Difficulty remembering number fact (i.e. multiplication fact) steps in solving equation
        • Hard time computing in head
  • Dysgraphia: (disorder of written expression)
    • Requires many skills to be integrated
    • May be related to deficits in language skills
    • Executive functions difficulties
      •  Hard time starting, planning and organizing written projects
    • Problems with short-term memory (working memory)
    • Weakness in phonics
    • Rate of dyslexia is increased
    • Problems with motor planning that are separate from muscle weakness.  This can lead to
      • Clumsiness
      • Incoordination
      • Poor hand eye coordination
    • Sensory processing disorder

What you can do:

  • Help to keep up with classwork/homework
  • Be clear and concise
  • Have clear expectations
  • Provide supportive seating
  • Raised desktop
  • Special pencil grips
  • Note taking
    • Have helper
    • Allow more time
  • Allow extra time between classes
  • Peer supports to help with books etc.
  • Be aware of fatigue
  • May have difficulty paying attention and concentrating
    • Break down new information into small chunks
    • Summarize information
  • Transitions may be difficult
    • Provide advanced warning of upcoming transitions
  • Address math and reading difficulties and provide support​.
    • Use same strategies as other children with dyslexia
    • Use real life examples
    • Practice memorization techniques with the student
    • Help by allowing lots of space for work if needed
    • Allow use of calculator and/or number line
    • Reduce number of question
    • Give small amounts of information at a time
    • Introduce one concept at a time
  • Provide opportunities to participate in classroom activities
  • Provide help with social skills and facilitate peer relations.
  • Ensure the physical accessibility of the school paying particular attention to:
    • Doorway widths & weight (e.g. heavy doors)
    • Stairs
    • Heavy doors
    • Water fountains
    • Distances between classes
    • Aisles between desks
    • Accessible bathroom

Ages 4-7:

  • May need help getting up from seated position
  • May lose balance when:
    • Bending down to tie shoes
    • Picking something up from the floor
  • Can’t walk long distances and should avoid stairs
  • Steroid treatments may cause rapid weight gain and facial changes
  • Psychological effects of steroids
    • Difficulty concentrating
    • Sleeping
    • Controlling emotions
  • May have difficulties with language processing
    • May struggle learning to read

Ages 7-11

  • Leg muscles grow weaker
    • Trouble walking, standing and maintaining balance
    • Often can’t climb stairs
    • Needs help getting up
    • Assistance in restrooms
  • Breathing may become more difficult. This may lead to
    • Headaches
    • Mental lapses
    • Difficulty concentrating or staying awake
  • Executive skills may be delayed. This may cause problems with:
    • Planning
    • Organization
    • Initiation of tasks
    • Self evaluation
    • Processing large amounts of information or instructions 
    • Responses to questions
    • Verbal expression
  • Supportive ideas:
    • Allow oral testing
    • Dictate responses into tape recorder
    • Condense assignments
    • Verbal report instead of a written report
    • Explicit, concrete and specific instructions
    • Minimize written work

Ages 12+

  • Children are typically using wheelchairs
    •  Allow extra time to travel with wheelchair
  • Problems with complexity or work, and keeping track of assignments

You may want additional information about your child’s disability, early intervention, school services, therapy, local policies, transportation, and much more. Every state in the USA has at least one Parent Training and Information Center (PTI) to offer families just this kind of information. To find your state’s center, go to the Center for Parent Information and Resources.