The Two Words I Say When People Comment They Don't 'See' My Child's Disability


When people see my 2-year-old-daughter thrashing around and screaming in the grocery store, it’s easier to assume I’m a bad mother, not that my child’s nervous system is glitching out and telling her the flickering, fluorescent light is a sign of the impending apocalypse. It’s easier to assume I’m pandering to her when I let her hang from the cart — as often as she wants — because most people do not know what “proprioception” is.

My daughter, Elise, has sensory processing disorder (SPD), and it has changed our entire life. Like autism, ADHD, and countless other “invisible” disabilities, SPD has no physical mark that discerns it. Kids with this disorder look like neuro-typical children, but they do not function like neuro-typical children do.

Of all the challenges that SPD has presented me and my child with, I think the one that used to hurt me the most was other people’s reactions. When people failed to acknowledge that something was different — that stung more than anything else I had to go through. What I’m talking about are the dismissive people — the people who think they understand better than I do — or better than my child’s therapists and doctors do. I can explain the diagnosis and quote our pediatric neurologist, and people will dismiss me by saying, “Every child has their quirks,” or, my personal favorite, “She seems ‘normal’ to me — having children is just difficult.”

I used to get frazzled or defensive, until the one day I stayed calm. Instead of getting mad, I said: “Thank you!”

That’s right, “thank you.” Just two, simple little words.

Then I explained, “We’ve spent countless hours researching coping strategies, tracking down a diagnosis and working with therapists to help her function at as high of a level as possible. I’m so glad her disabilities are not obvious to the untrained eye!”

Can I be perfectly honest with you? The first time I said this, it was more of a retort than a response. There was some anger in my tone. And yes, I still went home fuming. Then I realized…we had spent hours developing coping strategies, getting a diagnosis, and working with therapists. My hopes and dreams are that one day, when we send her off to school, she can rise to the challenge, make friends and participate without anyone knowing anything is different unless she chooses to share it with them.

That means these one or two people who were trying to belittle me were actually giving me a huge complement! And that’s exactly how I decided to take it. Now when I am confronted with a situation that would have previously left me feeling bad about myself and my parenting, I can say, “Thank you!” and mean it.

There are always going to be people in the world who choose not to “see” my child’s disability. It will always be easier for them to assume I am a bad parent than to look a little deeper. But now, I realize what they mean as an insult is actually a huge complement and I can simply thank them for their encouragement!

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

TOPICS
,
JOIN THE CONVERSATION

Related to Sensory Processing Disorder

Sensory-Friendly Halloween Costume Ideas for Kids

My youngest daughter has sensory processing disorder. She is particular about the clothes she wears. She doesn’t like the feel of tags, prefers cotton and soft fabrics, and has never worn a pair of jeans. Some mornings, we go through a few different outfits until she finds the one that feels “just right.” She is [...]

The Shofar's Too Loud, but Your Sensory Child Is Just Right

When my daughter was 2, she was terrified of the shofar (the shofar is a special ritual horn made from the horn of a ram, blown in the synagogue on the Jewish New Year to symbolize the coronation of G-d as the King of the Universe, and to recall the biblical story of the Sacrifice [...]

How the New Hulu Interface Fails Users With Sensory Processing Disabilities

When it comes to disabilities and chronic illnesses, things that many people take for granted can often wreak havoc in our lives. We find ourselves creating environments that can best suit our needs. By taking charge of our environment, we can provide ourselves with the best quality of life possible in our situations. This includes [...]
Rachel and her daughter holding hands.

5 Things I Want to Tell You as a New Parent With Sensory Processing Disorder

Half a year and a lifetime ago this week, our strong, clever, curious, gorgeous little daughter was born. I was at the time – and I still am – a mom who set out on the journey of parenthood knowing that I was wired differently. I have sensory processing disorder (SPD), a neurological condition that [...]