Meeting My Children’s Needs With Good School Relationships
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I have a decorative sign hanging on a wall that says, “Life starts all over again when it gets crisp in the fall.” The fall reminds me that we need to begin to prepare for school.
Every fall, my husband, Jason, and I attend individualized education program (IEP) meetings for our sons Max, Rowen, and Charlie, who have Duchenne muscular dystrophy.
These meetings are a lot of work, and I have always found them to be emotionally exhausting, but many good things come out of them. They set the stage for a year’s worth of services and support for our sons in their respective schools.
In each meeting, we talk about all the areas where they will need extra support. This means the conversation is centered on their weaknesses and struggles rather than their strengths. It has always been hard for me to have those conversations. It hurts my heart.
I’ve learned, for the most part, to keep my emotions in check. I am advocating for Duchenne students, so I will bring up their strengths and remind the team at the IEP meetings that my children are blessings, just like every child is. They are not to be treated like a burden.
A great relationship
Fortunately, we have formed a good relationship over the years with the school teams. The principals and caseworkers have come and gone, but the boys have had the same physical and occupational therapists since kindergarten. Because these therapists have worked with all three boys, we have a great relationship with them, and I donate all of the mobility equipment the boys have outgrown — like wagons and medical strollers — to them. The therapists use them with younger students all over town.
No school relationship is perfect. We are all human and we mess up, but overall, we have had good experiences because we’ve put in the work to help make those experiences positive. We call extra meetings, exchange countless emails, and constantly check in with the boys’ case managers and teachers, and they check in with us. Advocating for Duchenne students requires a lot of effort.
I think of an IEP as a relationship between the district, the school, the education team, and the family and students. Relationships require constant attention and work to be successful, and this one does, too.
Family engagement and educational advocacy are the keys. We can help our children, but it is better if everyone on the team is putting in the work.
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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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