Janet Hoskin is a Senior Lecturer in Special and Inclusive Education, at the University of East London. After her son Saul was diagnosed with DMD in 2001, she co-founded Action Duchenne. Janet designed an online literacy intervention for young people with reading difficulties, called Decipha, which can help children with Duchenne who have learning differences. Janet has kindly provided the information below on learning and behaviour differences in DMD. Decipha CIC gives support to children and young people and offers training to schools on DMD.

You can find out more about Decipha here

Learning and Behaviour Differences in DMD

The protein dystrophin is present in the brain as well as muscle cells, and so there can often be differences in the way children and young people with DMD learn about and view the world.  

Although all children and young people with DMD are unique, published literature has shown delays and/or differences in the following areas:  

  1. Speech and Language

Many young people with DMD develop speech late or find it more difficult to articulate words. It is important to ask for a referral to a Speech Therapist if you notice this. Remember to speak in short chunks rather than giving a long line of instructions.

  1. Literacy and Numeracy

Many young people with DMD struggle with learning to read. All schools should now be using a structured synthetic phonics approach which has shown to be most effective with poor readers and those with DMD. Difficulties with working memory (holding one thing in your head while doing something else) often makes numeracy problematic.

  1. Social Communication and Interaction

Some children and young people struggle to understand ‘the rules’ of social situations, and others find it difficult to make and keep friends. Many can show inflexible, repetitive or ritualistic behaviours which sometimes leads to a diagnosis of Autism Spectrum Condition (ASC). Sometimes this can appear as stubborn behaviour.

  1. Self Regulation

Some children with DMD struggle to keep their emotions in control, and ADHD is an established link with DMD. Some children take medication to help control their behaviour and concentration.

  1. Adjustment

Some research suggests that young people have difficulty adjusting to their disability, particularly when they begin to use a wheelchair. If your child seems to internalise his feelings it would be a good idea to talk to school about getting a mentor or counsellor. However other research suggests that young people with DMD adapt very well to their impairment and milestones such as using a wheelchair can be liberating as it gives them back a lot of independence.

However that’s not the whole picture….

Don’t forget that boys with DMD also have strengths such as knowing and remembering lots of facts and knowledge, being good abstract thinkers.

Most importantly

Early intervention is always best, so if a young person appears to have any difficulties it’s very important that you talk to the SENCO at nursery or school, or to your GP about referral to a Speech therapist or other professional. Talk to school about how they can support your child’s learning and/or behaviour challenges on a day to day basis.

Education Health and Care Plans

Every young person with DMD should have an Education Health and Care Plan (these now replace Statements of Special Educational Needs) because DMD is a complex impairment that involves input from a range of different services and professionals. Education Health and Care Plans are for anyone in education from 0 - 25 years and are developed through a process called ‘Person Centred Planning’ which means that a young person and his family MUST now be at the centre of planning for school and beyond.

As your child gets older you will qualify for social care support to enable your young person to go out and about, and for supporting his care needs such as getting up in the morning or going to bed. Make sure you contact your local Children’s Disability team if you want to find out about the sort of help you can get. Also check out your Local Offer on your Local Authority website for activities and information.

Transition to Adulthood

As young people with DMD are now living into adulthood it is essential that appropriate plans are put in place that can support young people to reach their dreams. During Transition to Adulthood (14 - 19 years in school), it is a requirement that discussions take place about:

  • the sort of career a young person wants to follow in the future
  • how he can become more independent and where he might want to live
  • how he can keep in control of his health care
  • what sort of social network /friendship group he can continue to develop.

It is now more important to think about the ‘outcomes’ a young person wants to see from school and college, so talking to your child from an early age about what he wants to do when he grows up is important.

And Finally….

Make sure you speak to your child about Duchenne. It is important that he is aware that he has DMD and that there is a reason why he isn’t able to do some of the things other people can do. This doesn’t mean he can’t still have a fulfilling and happy life.  

I would encourage anyone to stand for Head Boy. Don’t let DMD get in your way.

Saul Catlin: 16 years living with DMD.