6 Ideas for Back-to-School Success
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My kids return to school next week. As always, there is so much to do to get ready.
In addition to back-to-school shopping and open house, I have to ensure Max, Rowen, and Charlie, my sons with Duchenne muscular dystrophy (DMD), will be successful and that their school is ready for them. Heading back to school is stressful, especially when special needs, modifications, and rare disease are involved.
There is no how-to book for this. I’ve learned through trial and error, and a network of Duchenne parents have shared what they’ve learned, too. My three boys with Duchenne have unique and ever-changing needs at school.
My oldest son with DMD, Max, is a sophomore in high school and has anxiety that affects his school day. Besides the academic and physical modifications, he needs a safe place to go when he feels anxious, and someone to talk with to make sure he gets back to class. It took us many tries to find the right support for him. However, we have learned to be patient and have adapted as he navigates school.
Rowen, a seventh-grader, has high-functioning autism spectrum disorder, which comes with its own requirements. His day needs to have order and structure, and he requires notice if things will change in his schedule. Rowen has a paraprofessional but refuses to let them help him in the bathroom. He fatigues more easily than my other boys and needs a modified schedule for the days when his fatigue is too much.
My youngest son with DMD, Charlie, is in fifth grade. He is verified for special education services in math and needs extra time with other subjects. I am hoping it will be a good year for him.
He has been in the same building since kindergarten — where his brothers spent most of their elementary years — and his older brothers had two of the same teachers. If there were ever a building experienced with Duchenne, he is in it.
Every year, we encounter unexpected challenges, and I assume this year will be no different. Nevertheless, our experiences have provided us with some basic understandings and thought processes that work for us, including the following:
1. Communication is key. We are constantly talking with the people involved with our boys at school. We email, text, and talk on the phone whenever something comes up, if there are changes to their health, if they are having a bad day, if they have upcoming appointments, and so on.
2. As a couple, my husband, Jason, and I lean on each other. Our strengths balance each other in both Duchenne life and other areas. As a result, we are stronger advocates together.
3. A team approach is the best approach. It is important for everyone to work together. Jason and I know we can’t make the school year successful for our kids by ourselves. Sweets and treats also go a long way in starting off a relationship with our child’s educators on the right foot. It doesn’t have to be expensive, just something that says “Thank you” and “I appreciate you.”
4. We try to remember that there was a time when we knew nothing about Duchenne, and realize this is the reality for most educators and school personnel when they first meet our sons. Providing them with the information they need to be successful in educating our children is essential.
We have mostly done this ourselves by scheduling meetings before the school year with everyone who interacts with our kids. However, there are plenty of other ways to do this. Duchenne education can be teacher-initiated; if teachers have a great idea, go with it! Parent Project Muscular Dystrophy also provides Education Matters Guides.
5. We talk about everything we can think of, starting with academic and physical accommodations, and go from there. We plan for field trips, anxiety attacks, bus rides, extracurricular activities, fire drills, evacuation drills, recess, and much more. We’ve learned that the more these discussions happen before they are necessary, the better prepared everyone is.
6. We include our sons in whatever we’re comfortable with that is appropriate. We hope our sons can go to college and live independently someday. Involving the boys will help them learn how to advocate for themselves.
Every child is different. If you have a child with DMD, it is important to find what works best for them and your family. Chances are, it will look different from what works best for my guys. Regardless, I wish you a wonderful new school year, with limited challenges and boundless successes!
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Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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