If you have a child with Duchenne muscular dystrophy (DMD), it is important to establish clear communication with their teachers and school at the start of the school year, to inform and educate them on the disease.
Open communication will help school staff understand the disease, how it affects your child and how they can be of support. Navigating school with a disability can be daunting, but having the active involvement of the school staff will help your child to thrive, despite the daily challenges.
Talking to teachers
Schedule appointments with school staff before the start of the school year. Talk to your child’s teachers, year coordinators, school nurses, physical education coaches, special needs’ educators and administrators. Create an open dialogue, share information on your son’s daily reality of living with DMD and ask for their support.
It may be the first time they have heard of DMD, but for them to play a positive role, they’ll need to be properly informed and aware of what to expect in terms of your child’s symptoms and limitations.
How does DMD progress?
DMD is usually diagnosed in early childhood (3-6 years), when symptoms are identified, such as a delay in walking, frequent falls, clumsiness and difficulty climbing stairs or running. As muscles progressively weaken in childhood, a waddling gait and toe walking become evident, as well as learning difficulties and speech delays. Between the ages of 10 and 14, mobility challenges become more pronounced, with the onset of scoliosis and breathing difficulties. Decreased leg muscle strength leads to leg braces, walking frames and wheelchair use. In the teenage years, cardiac and respiratory function is increasingly affected and autonomy is significantly impacted. In the early twenties, assistive technology plays a key role in ventilation and mobility. Risks include lung infections, respiratory failure and heart failure.
There are a variety of resources available for teachers, with factsheets and clear explanations of DMD and its impact on the child and their family. Sharing them will help school staff support your child so they can reach their full potential.
How teachers and school staff can help with DMD
The physical implications of DMD mean the school will likely need to make adjustments for ease of accessibility, especially as your child grows older. Any related cognitive and learning difficulties will necessitate a personalized approach.
Learn more about DMD treatment and care
Your child’s school can help build a welcoming and enjoyable environment for your child in many ways. When talking with teachers and school staff, you may want to discuss:
- Mobility and access to facilities: Ease of access when moving around the school campus and classrooms can help on a daily basis, whether your child uses a walking frame or a wheelchair.
- Adaptive equipment: Modified desks, chairs and bathroom facilities will be easier for your child to use.
- Assistive technology: Voice- or breath-activated assistive devices, such as laptops with modified software, touch pads etc., can provide valuable support as DMD progresses.
- Scheduling rest breaks: Fatigue is a common symptom of DMD, and children living with the disease need regular rest breaks during the day. This helps improve concentration levels and helps avoid emotional or behavioral reactions.
- Extra support with learning: A special needs educator can offer important learning support. Your child is likely to be eligible for an Individual Education Program (IEP).
- Encouraging social interaction with peers: Children with disabilities often find it difficult to integrate into friendship groups. The school can help by showing an inclusive approach and encouraging shared playtime and social interaction.
As your child’s disease progresses, muscles weaken, mobility is reduced, learning difficulties will require more support and fatigue and breathing difficulties will impact overall well-being. The support of the school personnel will be key in ensuring your child gets the most out of their school experience, both academically and socially.
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