“The moment you doubt whether you can fly, you cease for ever to be able to do it.”
― J. M. Barrie, Peter Pan
Every year, Mia’s school team meets to develop and discuss her Individualized Education Plan (IEP). And every year I leave the meeting feeling like I was just run over by a train.
Let me start by saying that Mia’s team loves her, they advocate for her, and they encourage her daily to be the best Mia she can be. But they are also professionals whose job it is to be honest with me. To assess her to the best of their ability and tell me where the gaps are and how we are going to move forward.
Then every few years we have a full assessment to continue to “qualify” her for an IEP. Mia has Down syndrome. It’s not going away, so she will never not qualify. But we go through this process dictated by federal and state law that assesses her abilities with age-level criteria. And I sit there and try not to hyperventilate while they tell me the results.
Extremely low. Extremely low. Extremely low. Did not participate. Could not identify. Did not answer.
I have to hear it because I love her and I want her to get the services she needs. But I hate it. I hate quantifying her. How do you quantify someone who fills your heart with joy?
But we have to because for Mia to have the best chance for independence, we can’t pretend now. We have to be realistic and honest and get the help for her that she needs.
But I still leave with a broken heart and the intense feeling of “this isn’t fair.” It isn’t fair that things don’t come easy to her. It isn’t fair that she has to work so hard to move just an inch. It’s just not fair.
I love and hate being an advocate. I hate always being “that mom” that puts up a fight. Sometimes I just want to be the mom that takes her work with the little gold star on it and proudly displays it on the refrigerator. But instead, I’m the mom who takes the work and wonders how much she did by herself.
Every time a mom tells me she has an IEP to go to, I feel that little feeling in the pit of my stomach, and I think, “Be strong, Mama. They are more than what’s on the page. So much more.”
I’m thinking about all the families going through IEPs. Who are brave enough to hear the truth and still not give up. Who brush themselves off and start working on those goals. Who celebrate with tears of joy when they have worked on a skill for a year and their child finally gets it, and try to ignore the bitter sweet feeling of knowing how far they still have to go.
We’re in this together. All of us who keep believing. Because. Love.