Navigating the Educational Journey: A Mother’s Insights from Years of IEP Meetings
In a heartfelt column on Muscular Dystrophy News Today, Betty Vertin, a mother of three sons with Duchenne muscular dystrophy (DMD), shares her experiences and lessons learned from years of attending Individualized Education Program (IEP) meetings. Her insights provide a unique perspective on the challenges and triumphs of advocating for children with DMD in the educational system.
HCN Medical Memo
Healthcare professionals play a pivotal role in the lives of patients with Duchenne muscular dystrophy (DMD), extending beyond medical care to include support for educational and psychosocial needs. Understanding the intricacies of Individualized Education Program (IEP) meetings, as shared by Betty Vertin, can equip healthcare providers with valuable insights to better advocate for their patients within the educational system. This knowledge can also foster improved communication and collaboration with parents, enhancing the overall care and support provided to patients with DMD. Remember, your role as a healthcare professional can significantly impact the educational journey of a child with DMD, ultimately contributing to their quality of life.
- Betty Vertin has three sons with DMD: Max, 17, Rowen, 14, and Charlie, 12.
- She has attended IEP meetings for her sons for almost 13 years.
- Vertin emphasizes that parents are the experts on their kids.
- Each child is different, so each IEP contains accommodations specific to each boy’s needs.
- Vertin encourages parents to have their children attend IEP meetings by fifth grade to practice advocating for themselves.
- She advises parents to dress for a business meeting when attending IEP meetings.
“In all my years of IEP meetings, I’ve been the only adult attending who has extensive experience with Duchenne. My knowledge base has been vast compared with that of other team members. Not only that, I know my kids better than anyone. I know what color their cheeks turn if they get too hot, whether they can hold a pencil, and how often they pee.”
— Betty Vertin, Mother
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