Sensory Issues Suck, and Gapers Make Things Worse

Dear Tables of People Gaping at Us in the Restaurant,

I know what you saw.  You saw one of my three daughters jump abruptly up from the table during lunch, knocking her chair to the ground.  You saw her rip at her clothes, trying to remove them from touching her skin.  You saw her lash out at me as I kneeled in front of her with a napkin, trying to dry her off.

I know what you heard.  You heard my daughter screaming, admittedly very loudly.  Okay, I’ll grant that it was piercing.  You heard me urging her to take a deep breath, to stay calm while we took care of the problem.  You heard her hollering her head off.

And I heard you too.

I heard you say that some kids shouldn’t be at restaurants.  I heard you say that some parents don’t know how to discipline their kids.

But here is what you don’t see or hear:

My daughter has sensory issues, and one of the sensations that she finds most intolerable is wet clothing.  Two seconds before her meltdown, I had accidentally tipped over my glass of iced tea, and it dumped into her lap.

As soon as the cup tipped, I knew.  I knew how this would play out.  I didn’t have any extra clothes with us, but I managed to grab a number of thick, dry napkins to place inside her pants and shirt.  The napkins formed a barrier between her and the wet clothes, and she instantly calmed down and resumed eating.

You were briefly inconvenienced, and I am sorry about that.  But that is no reason to make sweeping judgments and assumptions about the child and the parent.  It is not about discipline.  Yelling at or punishing a kid who is having a sensory meltdown is not going to make it stop.  It will only make things worse.

And here is what you don’t know:

Things are actually better, because whereas punishment is not the answer, treatment is.  I felt pretty good about this episode, considering it only lasted 90 seconds and ended with her happily eating again, as compared to the days when I used to have to carry her kicking and screaming from the restaurant.  (I usually give a two-minute window, and then if she is still yelling, we leave, because it means she will need a longer time to recover, and I don’t want to subject other people to the meltdown).

What you don’t know is that my daughter has worked with occupational therapists and physical therapists for much of her life.  She used to recoil from the sensations of sand under her feet at the beach and grass under her feet at the park.  Any exposure would lead to horrible eczema outbreaks, which made things even more difficult.  Now she happily plays alongside her friends at these places, and we dab her with steroid cream to control the reactions of her skin.

She used to scream from the feeling of food on her hands or from the texture of solids in her mouth.  This, along with severe food allergies, led her doctors to diagnose her with “failure to thrive” when she was a young baby.  She subsisted primarily on a special liquid diet for much of her life, until months of feeding therapy taught her to tolerate eating food.  She carries an Epi-Pen and has learned what foods to avoid.

So I was feeling pretty damn good about the fact that my daughter pulled it together after the iced tea episode and was eating some mac and cheese, and clearly enjoying it.  I felt less good when I heard the rumblings from disgruntled diners and noticed the harsh glances being thrown at us.

I know it hurt your ears when she screamed.  It hurt mine, too.  But did you know that she was actually in far more discomfort than you or I?  She was in sensory agony, and her misery is what caused her to erupt in screaming and thrashing.

Empathy is described as “the identification with and understanding of another's situation, feelings, and motives.”

Empathy is the antidote to judgment.  It is the answer to much of what causes intolerance, entitlement, bullying and ostracism.

Next time you see a child thrashing and screaming, try having a little empathy.   Maybe instead of staring with open hostility, you could offer a smile or a kind look.   You will find that you no longer feel annoyed, which means that you will benefit too!  Such a simple cognitive change, but one that makes all the difference in the world.

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  • Carrie,
    Thank you for expressing what a lot of us parents of kids with sensory processing disorders wish we could say to onlookers who are clueless! My son is more of a sensory seeker... the dirtier the better... so I get the nasty looks from people who assume that I don't bother to clean or bathe my child or teach him about using an inside voice. They don't know that he struggles with SPD and Asperger's. They don't see the therapists, the doctors, the diagnosis, the constant discussions with his teachers. I wish all people would remember that there are "invisibile" disabilities out there before judging a child and his/her parents!
    I think it's awesome that it only took 90 seconds for her to calm down. :) That's a huge accomplishment!

  • In reply to miltownmama:

    Thanks, miltownmama, for your kind words of support! Good luck with your son!

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    I could not agree more. And, as you have pointed out...not only with our little ones with sensory/anxiety/other issues, with ANY situation. Show a bit of empathy, people! :(

    I could not agree more with the statements you made, "Empathy is the antidote to judgment. It is the answer to much of what causes intolerance, entitlement, bullying and ostracism."

  • In reply to Elena Boudreaux:

    Thank you, Elena, for reading and supporting!

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    Oh how I remember the early days of Asperger's with my Jay. The nasty glances when the noise level in a restaurant was just too much for him or when the waitress just couldn't understand why he needed his order just so. I couldn't even take him to a church function without somebody/thing touching him that set off the siren wail of discomfort. I was judged harshly. I lived the life of a hermit because I couldn't handle the judgmental stares! I dreaded answering the phone because I just knew it was his teachers again telling me how rotten of a parent I am because my child was just too much to handle. "Have you tested him for ADHD? I think the tests are wrong because he clearly has ADHD!" Add in the countless skin irritations and I feel your pain, Carrie. Just a tiny bit of empathy goes so far!

  • In reply to Cindy Spicer:

    Cindy, I can imagine how hard it must have been (and still must be). Thank you for reading and sharing your story!

  • Carrie I know you have plenty on your plate, but awareness of and empathy towards these ill-understood issues must be spread far and wide, to the "Chicago Now" readership and beyond! I absolutely respect people who choose not to have children or even dislike children, but when you are lacking in empathy or at least tolerance towards children, you are rejecting the society from whom you are going to expect nurturing and empathy in your old age: doctors, engineers, scientists, artists, writers, musicians, lawyers, name it.

    I hope the next time "gapers" encounter such a situation, they will try to see that the parent is not relishing the circumstance either and is doing his/her very best to make it better for the child (first and foremost) as well as everyone else.

    Thanks for the education, Carrie - I will do my best to forward your post so it at least reaches a few more folks beyond "Chicago Now!"

  • In reply to jiyer:

    J, I can always count on you to have an intelligent, well-thought out comment. Thank you for sharing and as always, for being such a great reader!

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    I cannot tell you how much I've loved to read your posts so far. This one should be read far and wide. We do not gain anything as a society when we are assumptive and judging. While I can be guilty of forming an opinion, I always ask myself if I am the expert (usually I'm not because it isn't my business) and if it is needed or helpful (and not in the "I'm just trying to help" way either). Well written - and thank you!

  • Michelle, welcome to Portrait, and thank you for reading and enjoying!

  • Carrie, this is a wonderful description of two perspectives on a situation. Sensory issues are so little understood by those not experiencing them. It sounds like you and your family have come light years along in understanding, and helping, your little daughter. Good work, and good luck. (I know this sort of thing stays hard, even after you figure out how to "handle" it.) Happy Mother's Day!

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    We teach our children to treat others the way they want to be treated, yet many adults have forgotten this simple truth. I wish your family didn't have to be exposed to such behaviour by the other adults, however I am glad that you took the time and patience to write this entry/article to benefit the rest of us. *hugs*

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