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4 Things I Wish People in My Daughter's IEP Meetings Knew

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I’m the mother of a medically fragile child who is just starting her school career. She’s very bright, curious and eager to learn. But because of her unique medical needs due to cerebrocostomandibular syndrome (CCMS), there need to be some procedures in place to keep her safe and help her do well in school.

She has an Individualized Education Program (IEP) for speech, but it’s also coded “Other Health Impaired” because of the medical concerns. In addition to her IEP, we also have an Individualized Health Plan in place with many specific protocols to follow in case of emergency. Her medical concerns are pretty unusual, and the school system often isn’t sure how to handle them. We’re certainly all heading into unchartered territory together.

As a teacher, I have been on both sides of the IEP table. I’m well aware of the conversations some therapists, teachers and administrators can have as they roll their eyes regarding that parent who called again. I have attended many “pre-meetings” to discuss everything that will be shared at the IEP — but before the parent is present. I know how many students therapists have on their caseloads and how much paperwork is involved in writing goals and progress reports.

But I feel it’s tougher being on the parent’s side of the IEP table. As much as I love my students, my daughter has my heart. I am her advocate; if I don’t speak up for her, who will? Here are a few things I would tell you if I could:

1. I know my daughter better than anyone.

When your child has an extremely rare syndrome and there is no specialist for it, you get used to becoming the expert. I may not have a medical degree, but I’m an expert in cerebrocostomandibular syndrome!

I have poured over medical journals, researched various symptoms, connected with other CCMS parents, been part of genetic studies and taught every one of my daughter’s doctors about her syndrome. I take notes from one specialist to the next, clarifying conflicting information and relaying suggestions other doctors have given. They look to me as the one who knows her best, so why shouldn’t you?

2. Sometimes you have to throw out the protocols.

I know there are many protocols related to how and when a student receives services. But sometimes kids don’t fit into the neat little protocol box. Then it’s time to think outside the box! If you are uncertain about the legal ramifications of not following a protocol, take it to a district supervisor.

3. I really want to work with you! 

Trust me on this one. I really do want us to all be on the same team. Why do you think I bring cookies to every meeting? I love my little girl and I just want to make sure she’s safe. I’m not trying to be difficult or annoying. I’m a helicopter mom by necessity. When I put her on that school bus, I need to know that she will be safe for the next seven hours until I pick her up.

4. My daughter is worth the fight.

Since she was born, I’ve been fighting for her. I fought for aggressive treatment in the NICU, rather than going with the suggested “let nature take its course.” I fought for early intervention therapies when the doctors told us she would never walk, talk, hear or see. I fought for her to try to be weaned off of a ventilator when we were told she would be vent-dependent for life. I fought for her to be placed in a traditional public school setting because that was the least restrictive environment for her. And you know what? She rose to every single occasion and proved I was right to fight for her.

So the next time we’re sitting in an IEP meeting together, think about these things. Then remember every single thing I say or do in that meeting is because I love my daughter to the moon and back. And enjoy the cookies!

Follow this journey on Life as a Leach.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

Originally published: March 19, 2016
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