I have a confession…
I have had the privilege of serving as an advocate for families whose children have Duchenne within school systems for more than 20 years, have attended hundreds of IEPs and 504 Plan meetings, and have given even more school presentations, assemblies and in-services about Duchenne… but this year is completely different. This year I find myself walking past my son’s elementary school with intense mixed emotion because this year I am sending MY child to school for the very first time. And wow – just wow.
Last March, I sat before an application that was longer than any college or graduate school application I’d ever seen and complete page after page of information about my child, and I deliberated about the ramifications of each and every box that I checked. I ran around town delivering forms to pediatricians and dentists -- and then delivered additional sets of forms when the first sets were misplaced… It’s enough to make a person insane! And then last month, I did it all again for his before and after care program. Seriously? Parenting is not for sissies.
And now that the paperwork is completed, and the perfect backpack has been selected, and the exact binder that was specified as required for all kindergarteners has been stuffed into said backpack, the reality is setting in. My baby is about to go to school - real, bonafide, big-kid school - for the very first time.
So, before I come unglued as I watch my little guy dash off on his first day (or maybe meet some other parents for mimosas after 1st day drop off to toast to ourselves?!), our PPMD team wanted to make sure that families within our Duchenne community are equipped with as many tools as possible to ensure a smooth start to the school year. Because it’s hard enough just to figure out the secret code to get through the front entrance, let alone to have to navigate considerations around IEPs, accessibility, and what information to provide to whom about your child’s medical care. So, consider this your Back-To-School Survival Kit (at least related to Duchenne). As for finding the perfect backpack and deciding between hot lunch or bringing something packed with love & nutrition from home, well… good luck!
And to all those families in our Duchenne community who’ve served as MY mentors over the years by showing me what gracious, yet effective advocacy looks like within the context of your child’s school life, thank you!
To better assist parents and teachers in providing a quality education for the student with Duchenne, PPMD has created Education Matters Guides specifically for teachers and physical education teachers. The guides cover everything from the basics of Duchenne and its progression to specific classroom accommodations organized by age group.
We also recommend that teachers familiarize themselves with Learning & Behavior issues children with Duchenne may exhibit.
'Chocolate Chip Cookie' Class Presentation
The 'Chocolate Chip Cookie' Duchenne Class Presentation (download) can be used to familiarize students with Duchenne at an age appropriate level (best suited for children in grades 1-3), covering what Duchenne is and how someone gets Duchenne.
The presentation explains that children with Duchenne have an ingredient missing from their muscles that makes their muscles work differently and get tired more quickly. The group draws the comparison to chocolate chip cookies and what happens if they are missing an ingredient like the chocolate chips. You get a different cookie like sugar cookies, but those are awesome too!
Children also learn how peers should treat children with Duchenne. For example, children with Duchenne may need the door opened for them, just as any student would like done for them. Children with Duchenne may need help of some sort, just as any student may need help from peers too. Simply put, the students should treat children with Duchenne the way they want to be treated.
Sample Letter to Accompany the Chocolate Chip Cookie Presentation
You can also download a sample letter that was sent from a school when one of our PPMD community’s families worked with the school to have the Chocolate Chip Cookie presentation conducted as an assembly at their child’s school. The school’s guidance counselor took the initiative to send the letter – and the day was a tremendous success! Of course, you can tailor it however you wish.
BrainPop Animated Video