Navigating the Negativity: Parenting a Child with a Disability

As I gear up for Brooklynn’s annual review, I find myself in a bit of a dark place. I mean, as I write, it is literally gray and cloudy with a cold wet rain pattering against my kitchen windows– like a scene in a bad rom-com movie where the lead character rides the bus, staring out a rain-streaked window– *cue sad music*.

For those of you who haven’t had the privilege of sitting in one of these meetings, an annual review is a meeting of the Committee on Special Education (CSE) that meets yearly to hear updates on progress and present performance levels from her teachers and service providers, as well as goal planning for the year to come. As a special education teacher myself, I’ve participated in countless CSE meetings for my students. Sometimes I sit through three days of meetings in a row to cover my caseload, so I am not new to the rodeo. But, sitting on the other side of the table– or screen (thank you Zoom) – has wildly changed my perspective.

Here’s the format of a typical spiel from each provider:

“Your child is so sweet and cute.

Here is a list of 30 things they aren’t able to do.

No, but really, it’s a pleasure to have them.”

Being totally honest, this is the format I’ve used for almost 10 years as a special education teacher. After sitting through 6 hours of meetings, you just want to hit the salient points that need to be addressed in the IEP and move on– and it makes sense; that’s what the meeting is for.

But here’s the rub.

Parents of kids with a disability are keenly aware of all of the things their child cannot do. We see all the ways they don’t measure up to their peers. Between countless doctor’s appointments with every type of specialist, meetings with special education teachers, occupational-, physical-, and speech- therapists, we are constantly bombarded with negativity. Appointments with our developmental pediatrician often follow with me concealing tears on the drive home. CSE meetings have me gripping the table and blinking back tears so they don’t see me getting emotional.

Sitting on the other side of the table has changed me as a special education teacher. It has given me a softened heart for the parents of my students. I can imagine everything they must have endured up until this point and the heaviness that it can sometimes bring.

So, how do I manage all of the negativity?

It’s a work in progress, but for now, this is how I try to navigate it.

I’ve heard, “remember that your child is not their diagnosis”, and I agree with this in part. Brooklynn’s diagnosis does not define who she is, but it is a closely-intertwined part of who she is.

Her diagnosis has global affects on her development and has an impact on the way she thinks, moves, speaks, and regulates her body and emotions. This has a direct impact on who she has developed to be. In navigating tasks that are challenging for her, she has grown to be incredibly persistent and tenacious. She is acutely aware of others’ emotions and is abundantly empathetic. She finds joy and humor in the small things in life and her uninhibited laugh is infectious.

These are the qualities that we admire about her.

These are the qualities that make her a unique individual.

These are her superpowers.