It’s that time of year again – the start of another school year. While we put our faith in schools to provide a proper, inclusive education for our children, faith is not all we have in our arsenal for ensuring this is the case for students living with Duchenne.
As parents, you are constant advocates for your children; this is especially true with education. We all hope for teachers that are willing to learn about Duchenne and understand how if affects your child on a day to day basis, though it is not always the case (airing on the side of optimism). Many tools are available for parents and teachers to ensure the best possible experience for both.
You should not be alone in your advocacy – of course you want to find willing partners in the educators who are with your children throughout the school year. Meeting with your child’s teachers and other key staff is one of the most important things you can do for your child to be confident when sending him off to the first day of class.
PPMD has an abundance of materials available to help bolster that confidence. Please feel free to add additional resources in the comment box so we can add to the growing list.
Education Matters Guides
To better assist parents and teachers in providing a fulfilling education for the student with Duchenne, PPMD has created the following helpful guides:
PPMD’s Duchenne BrainPop: BrainPOP's beloved animated duo, Tim and Moby, present the topic of Duchenne in this short, animated movie. Produced in partnership with Parent Project Muscular Dystrophy, this four minute video strives to provide kids of all ages with a clear understanding of Duchenne. Watch on PPMD's YouTube channel.
Learning and Behavior
Psychosocial health (also called “mental health”) includes behavior, emotional adjustment, learning/school success, and relationships. These things are very important for overall well-being and quality of life. Addressing the psychosocial needs of a person with Duchenne is an important part of his medical care. Be sure to check out our new care section of the website which includes information on learning and behavior.
Additional helpful resources:
Education Matters: Learning and Behavior in Duchenne (download) (written by James T. Poysky, PhD)
The Psychology of Duchenne Muscular Dystrophy (download) – (written by Jos Hendriksen, PhD)
An Individualized Education Program (IEP) is the guiding blueprint that oversees your son’s education program. Developed by parents, together with teachers and other school staff, the IEP is designed to give your son the maximum benefit from the school curriculum, and to help him to participate, as much as possible, with his non-disabled peers. – Read More
Find out what resources exist in your individual state for Education.
by Jill Anne Castle, Educational Consultant and PPMD FACES of Arizona Volunteer Coordinator
The following is a list of helpful resources on education, school issues, and assistive technology. Please don't hesitate to contact Jill Castle with any questions.
Webinars and Presentations