Why education is so important

School teaches children independence, provides them with opportunities to learn and helps them meet friends – skills that will help shape their lives.1 There is no reason why children with Duchenne muscular dystrophy (DMD) should not have aspirations for the future. In fact, many young adults with DMD attend university, have careers, get married and have children.

Adjustments at school1,2

Most children with DMD can attend pre-school and primary school without any problems. However, as the condition progresses, some adjustments may need to be made.

It is important that you contact the school and provide them with as much information as you can about DMD. That way the teachers can:

  • Provide special equipment
  • Arrange transport to and from school
  • Adapt the curriculum to the individual
  • Monitor any needs throughout the school year
  • Offer extra support for any learning or behavioural problems
  • Provide additional time for schoolwork
  • Be flexible with attendance
  • Educate other students about DMD (with your permission)

Talking to teachers – where to start1,2

Request a kick-off meeting:
with the members of staff who will be involved in your child or young person’s education.

Openly discuss:
any concerns, special needs or ideas you may have.

Provide information:
about DMD and the treatments/therapies your child or young person is receiving.


What does the school need to know?1,2

The needs of a student with DMD may be very different from those of other children. Be sure to tell the teacher whether your child or young person:

  • Needs classroom accommodations, e.g. space for a wheelchair
  • Requires tutoring or special education
  • Needs assistance getting around, eating or going to the toilet
  • Has any emotional or behavioural problems
  • Needs to bring adaptive equipment to school
  • Needs to take medications during the school day
  • May need special considerations about lateness and missed classes and/or homework
  • Is open about discussing DMD with classmates, other parents and other teachers

Common assumptions to rethink about DMD at school

If your child or young person has DMD, the thought of sending them to school can be daunting. You may worry about them falling, being bullied or going through the unnecessary stress of exams and other assignments.

While it is perfectly normal for parents, caregivers, teachers and even the child with DMD to have fears around school, it is important to understand that they are not always based on reality.

Separating fact from fiction can make a huge difference in helping your child or young person get the best educational experience possible.

Assumption

Because my child or young person has DMD, they will be better off in a special education school

Reality2,3

While you may think that a DMD diagnosis means attending a special education school, if possible children with DMD should attend mainstream schools. This is so that children with the condition can experience and learn from the ‘real world’.

However, keep in mind that, as the disease progresses, an alternative or specialised school that can support the needs of your child or young person may be your best option.

Assumption

Because my child or young person has DMD, they should not participate in school activities or trips

Reality1–3

Having DMD does not mean that your child or young person should be excluded from participating in school activities.

Openly discuss your child or young person’s capabilities and limitations with the school. Together, you can decide whether any modifications or special adjustments can be made. For example, building ramps for wheelchairs, providing more time for exams or finding games that do not require physical strength.

Assumption

My child or young person will be teased or bullied about DMD

Reality1–3

Research has shown that children are less likely to tease and more likely to defend a student with DMD when they understand the condition. Talk to the school about how to raise the topic of DMD with other students.

To help teachers discuss DMD in the classroom, refer them to Parent Project Muscular Dystrophy’s resources for teachers here.

Assumption

The teacher will know exactly what to do

Reality1,2

This may or may not be the first time your child or young person’s teacher has had a student with Duchenne in their class. Be prepared to openly discuss your child or young person’s condition and provide teachers with guidance and information about Duchenne.

To help inform teachers about Duchenne, refer them to Parent Project Muscular Dystrophy’s resources for teachers here.

Assumption

My child or young person will not be able to keep up with their classmates

Reality1,3

While it is true that children with DMD may need assistance with physical activities and help to address learning disabilities, they can still follow the classroom curriculum and participate in class activities.

Rather than focusing on the disability and what the student cannot do, focus on what the student can do. Work with your child or young person’s teacher to set realistic goals and focus on the student’s strengths. You could also talk to the school about developing an individualised education programme (IEP).


More resources

To help teachers understand DMD and meet your or your young person’s needs in the classroom, refer them to Parent Project Muscular Dystrophy’s resources for teachers here.

To learn more about how to talk to teachers and school staff, look at Parent Project Muscular Dystrophy’s ‘Education Matters’ guides, here. These guides are aimed at parents and teachers, and are organised by age group.

Find out more about DMD with these tips for daily life

1. Parent Project Muscular Dystrophy. An introduction to education matters for parents. Available at https://www.parentprojectmd.org/wp-content/uploads/2018/04/EdMatters_Parents.pdf [last accessed March 2021].
2. Parent Project Muscular Dystrophy. Education matters: a teacher’s guide to Duchenne muscular dystrophy. Available at https://www.parentprojectmd.org/wp-content/uploads/2018/04/EdMatters_Teachers.pdf [last accessed March 2021].
3. Muscular Dystrophy UK. Inclusive education for children with muscle-wasting conditions: a guide for schools and parents. Available at http://www.musculardystrophyuk.org/wp-content/uploads/2016/09/Education-Guidelines-in-full.pdf [last accessed March 2021].

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