The Good and Bad of IEP Meetings

At least once a year, parents of disabled children sit down with teachers, therapists, and other important people at an individualized education plan (IEP) meeting. While IEP meetings are meant to be genuinely helpful, they can take a toll on special needs parents. 

During the meeting, parents and therapists are typically asked a multitude of questions about the child’s skills and abilities. These answers are used to determine what is needed to accommodate the child’s disability. This is great because it allows parents to make sure their child is getting everything they need while receiving their education. 

Many people don’t realize the gut-wrenching feeling that comes with answering each question. As special needs parents, we watch our children struggle every single day. However, when you sit back and think about everything they can’t do all at once, it can be overwhelming. 

My son Cayden’s most recent IEP meeting almost left me in tears. He started preschool a few months ago, which required an updated IEP. During the meeting, they asked if he could do things that a typical 3-year-old can do. It felt as if I were a broken record that kept repeating the word no.

“Can he walk?”

“No.”

“Does he talk?”

“No.”

“Does he eat anything orally?”

“No.”

“Can he stand up with assistance?”

“No.”

The list goes on and on.

The majority of the meeting consisted of listing off everything that my child physically can’t do. It’s heartbreaking because I know that these are all things that he so badly wants to do. But due to his Pompe disease, he’s unable to. 

I had to sit back and take a deep breath after the meeting was over. During that time, I reminded myself of everything that Cayden can do. He can give the best hugs and kisses when I need them the most. He loves to act silly just to see other people laugh. He also has mastered the alphabet and is working on learning colors now. These may sound like small things, but to me, they mean the world. 

Instead of focusing on the things he can’t do, I have to focus on what he can do. Pompe disease has left him unable to walk. But he doesn’t let that stop him from having fun. And although he doesn’t talk, he has found other ways to get someone’s attention. We’ve also been working with an eye-gaze device to help him with communication. After all, there is more than one way to communicate. Sign language has also been very helpful. 

Not every part of the IEP meeting is hard. In the meeting, you also determine what goals you’d like your child to meet that year. Usually, these goals can be met with the help of therapists. For example, you can determine what measurable goals you’d like a speech therapist to help your child reach. 

During the IEP meeting, we’re able to recognize Cayden’s strengths and weaknesses. Although I dread the meeting each time, I’m thankful that my son is given the federal right to an IEP meeting. Even if it causes me to become emotional, it’s been very helpful.

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Note: Pompe Disease 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 other 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 Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.