To the Parent Whose Child Has an IEP


We recently received my son’s latest Individualized Education Plan (IEP) report with his reevaluation results and official dual diagnosis: Down syndrome and autism.

When I first received the IEP, I didn’t fully read through the report because of self-preservation and because there are only so many deficits you can read about at one time.

But it forced me to ask myself some hard questions: Do these reports ever get easier to read? Why do they affect me so much? Do they affect how I define success? How do I define success?

You could say nobody ever wants to be on that left side of the bell curve, especially more than two standard deviations.

So I sit here with the report tossed behind me, my journal in front of me and my sweet boy next to me. When I went to get him from quiet time in his room, he clearly said, “Downstairs. Let’s go. To couch. Want snack.” Completely unprompted. That’s a darn big deal. Those kinds of moments don’t show up on reports like these.

These reports don’t measure value. They don’t measure joy. They don’t even really measure true growth. It’s impossible for them to show the amount of growth that one strong little boy has made. They don’t talk about resilience or perseverance, about hard work or limitless love.

Oftentimes I wonder if we really need all of these assessments and ways of sorting. I know his teachers don’t define him through these assessments. I don’t define him through these assessments. But it forces us to look at him through that lens.

And each time I read one of these reports, I think about my own days as a teacher. I wish I would have had the deeper perspective I have now when delivering these kinds of assessments about a child — especially one with a disability — whether it was on paper or not.

To those parents of my beautiful former students, I hope I conveyed these things to you, but if I did not:

I wish I could tell you I know how much you worry and how hard you work.

I realize how much you’ve entrusted me to let your baby shine when you can’t be with them.

And how much you would prefer not to create waves or go against the grain.

How you know how much teachers have on their plates, but your biggest responsibility is to stand up for your baby who is your whole world.

I wish I could tell you how your child is far more than any deficit a report lays out.

And how I pray they find their perfect place in life, that they’re happy and shine like the bright star they are.

And sure, there’s a place for assessments and numbers and data. When used appropriately, they help us plan. They allow us to receive services we need. They help us grow.

But they in no way measure the love and purpose your child has brought into the world.

Nor do they measure the love and work that you and your child’s teachers have poured into them.

And they certainly don’t measure how hard your baby has worked, how much they have grown and how they have blessed those around them.

Sending you so much love, a big high five and if I could, a glass of wine.

A version of this post published on www.thequestforhealing.com

We want to hear your story. Become a Mighty contributor here.

Getty image by DenKuvaiev


Find this story helpful? Share it with someone you care about.


Related to Down Syndrome

What You Might Want to Know About My Son With Down Syndrome

I felt the need to write this after reading about a comedian that defends using the “R-word. Let me tell you a little something about my precious little man. He is a super hero (he wears a “Red Hot Chili Peppers” shirt because he’s cool, too). I just had a long, wonderful talk with his [...]
Baby boy with Down syndrome sitting on his high chair and smiling at the camera

When People Use the R-Word

Sticks and stones have never broken my bones but words have been known to hurt me. I am a bit of a sensitive soul. I can be brought to tears through a musical montage, an old photo or a beer commercial. While this is my truth, it is also true that I love a good [...]

LulaRoe Chooses to Back Up Retailer Mocking People With Disabilities

LulaRoe — do you know who they are? Probably. They’ve exploded as one of America’s most successfully deceitful fashion pyramid schemes, capitalizing from their own employees and boasting high margins of profit as a result of cheap material and competitive third-world labor costs. I know this because my wife and I lost thousands, struggling to [...]
Shanna's family at Tokyo Disney Sea.

Why I'm Horrified by LuLaRoe's Actions as the Mom of Kids With Disabilities

LuLaRoe is one of the most well-known clothing companies today, and have made their success in the world of buttery soft leggings. The company has not been without controversy, facing pyramid scheme allegations and claims of leaving their consultants to hang out to dry after changing their refund policies. Recently though, they have come under [...]