“You can do this. Remember to breathe. If you feel like crying, don’t try to stop yourself. But an IEP meeting is not a funeral. You can do this!” I gave myself a pep talk before walking out to the van.
My first IEP meeting as a parent. Not the teacher. And I was so nervous I could barely function.
It was the 3 year anniversary of learning that Adelaide could not be ‘fixed’ by surgery. It was the 3 year anniversary of learning that Adelaide would always have a severely malformed brain.
There wasn’t a cyst, like our local hospital thought. Not something that could be surgically repaired to alleviate pressure and give Adelaide a chance to have a healthy brain. A normal life.
We wouldn’t even know until our second neurologist that Adelaide had polymicrogyria. Enlarged ventricles. Missing matter. Thinning corpus callosum. Flattened pituitary gland.
Our situation was unfixable. And that first neurologist, the one we basically fired, said, “She’s not that far behind anyway,” as we carried a non-rolling, non-standing, non-cooing 9-month-old girl from his office.
During our IEP meeting, I chuckled. Adelaide qualified for the maximum individualized therapy time in three areas, plus a dedicated 1:1 paraprofessional. And I thought back to that doctor. Three years before, he said he couldn’t give us any prediction, but she didn’t even need therapy. But I called our local pediatric therapist as soon as I could and asked for an evaluation. He was so very wrong and I knew it in my mom gut that she needed therapy.
Adelaide’s therapist of three years was at our IEP meeting. Some people take lawyers or advocates. Dave and I take the person who has worked with Adelaide the most in her short life. The person who let me sob onto her scrubs when we failed to reach yet another milestone. When another realistic expectation went unmet. When bills and stress were competing to see which could be higher. When our genetics journey ended.
And she sat next to me as I listened to a team of sweet, competent women explain what they thought was best for Adelaide. And we gave input and filled in the blanks. And I almost cried only one time. I looked down at some data. Adelaide is in the 2nd percentile here and the .3rd percentile there. And it was a bit lower than I thought she would be. And it turned out that she is the lowest in the school.
All those assessments were necessary to figure out what Adelaide could and couldn’t do. What we needed to work on. What the school could offer us. But nothing prepares you for seeing such tiny numbers assigned to your child. One of them is not even a whole number. Three-tenths of a percentile.
We approved most of the goals outright. So many goals in physical therapy, occupational therapy, speech therapy, adaptive behavior. Plus her academic goals. We tweaked a few. We added some things. Adelaide’s physical therapist approved certain goals, while changing others.
And there is actually a goal about Adelaide not eating poop. It’s written better than that. But the gist: Adelaide will learn to stop eating poop. And I laughed out loud. Because it’s not what I pictured for my life at all. And in the midst of something so difficult, there’s at least a chance to smile when an official document is stating that our tax dollars are going toward training my daughter to not eat feces. C’mon. It’s pretty funny.
For the very first time, I was in an IEP meeting where the child would be in a special needs environment 100% of the time. I had never marked that self-contained box in all my years as a teacher. But here was my daughter, labeled Other Health Impaired, getting the maximum services and the maximum minutes in a highly specialized environment.
In that very moment, as we marked that box, I thought I was going to vomit. I almost did vomit. But I remembered my pep talk.
“An IEP meeting is not a funeral. An IEP document is not a death certificate. It’s a birth certificate. Think of all the new things Adelaide will learn. Think of all the new things she will experience. New. Birth. You can do this.”
Our meeting went so smoothly. We had already toured the building and met all the staff. We had already been in the therapy rooms and met most of her therapists. We had no red flags or checks in our spirits or hesitations. We knew it was going to be a fantastic experience for Adelaide to attend school. We enrolled her right after the IEP meeting. She started 5 days later.
She has learned something new everyday. She has done something new in every therapy session. She is surprising everyone with her remarkable adaptability to the hardest thing she’s done in her life. And her smile allows me to drop her off three mornings a week and breathe. She makes it easy to breathe.