How To Respond When People Don’t “See” Your Child’s Disability

When people see my 2-year-old-daughter thrashing around and screaming in the grocery store, it’s easier to assume that 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.  Its easier to assume that I’m pandering to her when I let her push the cart–as often as she wants–because most people do not know what proprioception is.

My daughter Elise has Sensory Processing Disorder, 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 at all.

Elise can be a very happy, content child one moment, and then out of  nowhere, have a sensory meltdown that can last for hours.  She spent the first 15 months of her life crying if she wasn’t being held in my arms, and at 15 months the crying turned to screaming.  Light, sound, touch–even getting picked up too quickly were all moments in everyday life that she just couldn’t handle.

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 wrong–that stung more than anything else I had to go through.

To be clear, I’m not talking about the “Wow, I had no idea anything was wrong, thanks for telling me,” response.  I have been blessed with so many wonderful friends, family, and community who are so supportive of our situation when I tell them about it, and I hope you get the same support!  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.  These are the people that, when presented with the facts of the situation, do not listen to or hear you.  You may explain the diagnosis and quote your pediatric neurologist, and these people will dismiss you by saying “Every child has their quirks,”  or, my personal favorite, “She seems normal to me-having children is just difficult.”

After about the second or third time I heard this, I finally came up with the perfect response.  I stayed calm, and instead of getting mad or defensive, I said “Thank you! 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 snark 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 that 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, I can say “Thank you!” and mean it.  (No snark, either!)

There are always going to be people in the world who choose not to “see” your child’s disability.  It will always be easier for them to assume that you are just a bad parent than to look a little deeper.  Ain’t no body got time fo’ that.  Take heart, know that you’ve got this, and that’s all that matters.  And then be sure to thank them for their encouragement! 🙂

 

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