How a neuromuscular condition could affect a child’s education

There are several neuromuscular conditions that can affect children, infants and babies. Some conditions may be present at birth but others may be diagnosed during the early years of childhood. Each child can have different symptoms and challenges, depending on their condition and how quickly it progresses. Most neuromuscular conditions typically cause muscle weakness and fatigue, and over time some children may lose the ability to do things like walk, sit upright, breathe easily, and move their arms and hands.

These symptoms can make it difficult for the child to:

• keep up with the demands of the school day
• move around the school or classroom easily or independently
• participate in activities such as physical education and excursions
• attend school regularly due to illness and medical appointments
• independently take care of their personal care needs, such as toileting, eating, dressing etc.

Although many children with neuromuscular conditions are highly intelligent and do well at school, others can have learning difficulties or more severe conditions such as autism or attention-deficit hyperactivity disorder (ADHD). Depression, anxiety and behavioural problems can also be issues faced by families and schools.

But with the right support, school and early childhood education can be a rewarding time for most children with a neuromuscular condition.

What type of support a child with a neuromuscular condition might need in the school or classroom

Children with neuromuscular conditions have varying abilities and challenges so you will need to work in partnership with the child, their family and health professionals to support their educational needs.

In this excellent booklet from the Muscular Dystrophy Association (US) there are many practical tips for teachers and school staff working with children with neuromuscular conditions.

In general, students with neuromuscular conditions may sometimes:

• need an individual learning plan (note, the plan may be called different things in each state or territory) and support from an integration aide
• need adaptive or assistive technological devices in the classroom (such as a keyboard for writing)
• use equipment such as a wheelchair or mobility aids
• use a ventilator for breathing
• need additional time to finish work or take tests
• require additional time to get to other classes or use of an elevator
• need special considerations about late arrivals to school, absences, shortened school days, and missed class work and homework due to medical appointments, illness and hospital stays
• require tutoring or additional time to make up assignments
• need frequent bathroom breaks or help with toileting or personal care needs.

Resources for educators

The following resources have been developed specifically for supporting children with neuromuscular conditions:

• Save Our Sons Duchenne Foundation has developed a teacher resource for Duchenne Muscular Dystrophy. This resource provides information about supporting a child with Duchenne Muscular Dystrophy at school. It covers topics such as physical considerations, fatigue, equipment suggestions, physical education, falls, school inclusion, writing, learning support, behaviour management, allied health and excursions. It also has resources such as a template for an emergency medical plan.

• Muscular Dystrophy Association (US) has an excellent resource for teachers and school staff.
  

• A teacher’s guide to neuromuscular disease, Muscular Dystrophy Association Inc, 2017.

The Muscular Dystrophy Association (US) has also developed school recommendations for the following neuromuscular diseases:

• Charcot-Marie-Tooth Disease (CMT)
• Duchenne Muscular Dystrophy (DMD)
• Limb-Girdle Muscular Dystrophy (LGMD)
• Myotonic Dystrophy (DM)
• Spinal Muscular Atrophy (SMA)

Children’s books about neuromuscular conditions

Below are some books that could be used in a classroom or school library or with friends to develop an understanding of neuromuscular conditions.

• That’s What Wings are For by Patrick West and Daniella Germain

There are three things that all respectable dragons need: strong wings for flying, strong lungs for breathing fire, and strong, shiny scales. But Bluey the Dragon has none of these. Even so, Bluey has other abilities, some of them truly wonderful—if only he can work out what they are! That's What Wings Are For is a touching fable about discovering that thing that you do the best, and finding a way to do it.

• Zac’s Play Day by Patrick Guest and Charles Santoso

A beautiful story about Bluey the dragon who is a bit different, but is strong and amazing in so many other ways. This story was written by Patrick Guest – a physiotherapist with a passion to make people feel better inside and out. Pat lives in Victoria and has first-hand experience with Duchenne Muscular Dystrophy as one of his three children has the condition.

In 2018 SMA Australia worked alongside Biogen to produce this fantastic children’s book as a resource for the SMA community. SMA Australia has since worked with the Australian actress Virginia Gay to record a reading of that book.

If you are a playgroup, daycare, pre-school, kindergarten, school, library, or someone that would like a FREE copy of this resource please send an email to reception@smaaustralia.org.au.