Hot on the heels of her presentation to the group of Trainee Physiotherapists last week, Lynnette donned her Advocacy hat again and travelled to the North West to meet with a Duchenne family and school yesterday.
The school had approached Action Duchenne to help the team gain more knowledge and understanding of Duchenne muscular dystrophy since one of their year 4 students lives with the condition.
Lynnette worked with the SENCo to arrange a good time to tie in an informal meeting with the family, followed by a round table meeting with the year 4 teaching and support staff and SENCo team.
Supporting the Duchenne family
Lynnette was delighted to meet with the family of the little boy prior to the larger meeting to offer them support, information and help. They discussed topics such as the diagnosis, building the team around them, talking with children about Duchenne, sleep patterns, gaming, the genetics behind the condition, what life is like with Duchenne and housing adaptations.
Advocating at school
Lynnette talked to the teaching and support staff and SENCo team about how they can support the student most effectively.
In school, it is useful for staff to understand the following aspects of living with Duchenne;
- Fatigue and how that may effect mood and behaviour in Duchenne muscular dystrophy.
- Working with an Occupational Therapist to provide specialised seating to reduce fatigue.
- Encouraging positive language to empower the student to ‘own’ his condition.
- Learning differences in Duchenne and how the lack of dystrophin effects the brain.
- Practical tips such as using flash cards rather than phonics to learn to spell, using a balance bike at playtime, or creating a class owned ‘playground pack’ that the class take responsibility for and that all children can access to encourage quieter play if needed.
- The Duchenne muscular dystrophy journey and how it can effect families, such as the level of appointments, balancing work and care and relationships.
Impactful
It is always a privilege for our team to support Duchenne families in their journey. As part of our vision of ‘A world where lives are no longer limited by Duchenne muscular dystrophy’ one of our clear aims is to build a community and educate people about Duchenne. In presenting to the school yesterday, Lynnette was able to give real insight into life as a Duchenne family, to help the school give the child the best support to achieve his full potential in school.
I just wanted to say a huge thank you for coming to see us yesterday. We all found it extremely helpful and I think you really helped (the child’s) parents. You really helped the team think about how we can support (the child) better and I think it has really helped the family understand that we are all working together to support (the child). We are so lucky to have a charity like Action Duchenne to support us.
SENCo, North West primary school
Practical tips at the Conference
On Friday 15 November, join our team at the Action Duchenne International Conference 2019 for the Practical Tips session with Jane O’Connor.
Find out more and read the full agenda.
Get in touch
Contact us to get help, support and find out more about how Action Duchenne can work with you to and your school.
Roche halts development of myostatin inhibitor
