What I’ve learned after years of attending my sons’ IEP meetings

A mother of 3 boys with DMD has some hard-earned wisdom to share

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by Betty Vertin |

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My oldest son, Max, is graduating from high school this year. I know I’ve shared that repeatedly, but the long list of lasts he’s experiencing as a senior continue to inspire my writing.

I have three sons with Duchenne muscular dystrophy (DMD): Max, 17, Rowen, 14, and Charlie, 12. Recently, I attended Max’s last individualized education program (IEP) meeting.

I reminisced as I drove into his high school parking lot. His first such meeting occurred when he was in preschool, almost 13 years ago. Back then, it was called an individualized family service plan.

Max and I have been through a lot as we’ve learned to navigate his educational journey and work with teachers and administrators. Although there’s always more to learn, the following are my biggest takeaways.

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We’re the experts on our kids

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. I know everything, and I impart the essential information to the people with whom my boys spend several hours a day.

There’s no one-size-fits-all plan

One might assume that because my three sons with DMD have similar underlying needs, their plans look alike. But all three boys are different, so each plan contains accommodations specific to each boy’s needs. Life would’ve been easier if Max’s plan worked for Rowen and Charlie, but that’s not the case.

Have your child attend

If your children are young, they may not have attended an IEP meeting yet. But my boys were attending theirs by the time they reached fifth grade. I want my sons to have as much independence as possible, especially once they’re adults. IEP meetings are a perfect place for them to practice advocating for themselves.

Next year, Max will be in college, where it’ll be his turn to take the lead. He’s ready for it.

Dress for a business meeting

I can’t speak on behalf of the educators and administrators who attend our IEP meetings, but I’ve always thought that if I showed up in my everyday leggings and messy bun, they might not give me enough credit. It’s a business meeting, I think, so I’ve always dressed accordingly.

Plus, I’m sometimes nervous and often emotional before these meetings. If I look the part, I feel better and more prepared.

There will be people who are hard to work with

The majority of people we’ve worked with over the past 13 years have been excellent advocates for our sons. Not everyone is easy to work with, however. I can feel anger coloring my cheeks as I reflect on a meeting where a staff member said they’d only help my child if he helped himself first. That misunderstanding made it difficult to have a good working relationship.

Consistent team members are valuable

My boys have all had the same occupational and physical therapists throughout their education. These individuals are now experts on how to serve a student with DMD. They know all of my boys well and recognize their different needs.

I’ve grown close enough with these therapists that a text is all it takes to make adjustments to equipment at school. This year, as Max continues to learn how to maintain independence as a nonambulatory student, he was comfortable enough to ask them for specific equipment for the bathroom.

Even the best-laid plans don’t always work

Sometimes plans don’t work as we hope. We’re about eight weeks into the current school year and have had to make new plans twice: once for Max and once for Rowen. The school installed a new stair lift over the summer to allow wheelchair users better access to the art wing. Something about its movement freaks Max out, and he refuses to use it. We had to drop art and add another class.

We’ve learned to roll with these changes. If something doesn’t work the first time, we try again.

Note: Muscular Dystrophy News Today 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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