I've just returned home from California, where my son and I experienced a surreal and life-changing experience. We were blessed to be guests on the fabulous television show The Doctors. We appeared on the show to raise awareness for Prader-Willi Syndrome, a rare genetic disorder that affects my son.
One of his major struggles is sensory processing, and I explain his condition this way:
Say you're walking down a New York City street. It's springtime, 70 degrees and sunny. Hundreds of cars drive by, many of them honking their horns. A helicopter hovers above, its propellers whirling a deafening tune.
Your heart pounds faster with every step, and you suddenly feel a headache.
A couple stands in your path, fighting over a social media mishap. They're loud and the sound of their voices is attacking you right behind the eyes, traveling through your eardrums.
You're so upset you don't notice you're walking right into a construction zone. The noise from the jackhammer becomes a full assault on your organs and bones. Every vibration from the metal tool hits you like a bullet. Car radios are booming, skateboarders zoom down the street, and the jet engines from airplanes at 30,000 feet turn your world into a war zone.
You can't filter any of it out: Every sound, vibration, and speck of light is coming at you all at once. You stand there with nowhere to hide and every sensory input is hurling at you at the speed of light. There is nothing you can do. You're under siege.
Your body begins to shut down and you're in the midst of a complete full-fledged breakdown.
I know this may sound far-fetched, insane, a made up fairy tale. This is not a work of fiction; this is what life is like for an individual suffering with a sensory processing disorder. This is what it is like for many of those who have Autism, Prader-Willi Syndrome, Down Syndrome and the list goes on.
Can you imagine what it would be like to be held hostage inside your mind? You're a virtual prisoner in a world of sights and sounds and smells. The problem is: you can't filter out the ones that are unimportant; every sensation hit you all at once, leaving you in a state of panic and confusion.
I wish I could understand what it's like to live in a world like this—if I could, I'd make my son's life better.
As my sweet little angel walked out on stage at The Doctors, he had a complete nervous breakdown. His little heart was thumping a thousand beats per minute, his face turned bright red, he began yelling and holding his ears.
All he could do was yell out to the crowd, “you hurt my ears, you hurt my ears, stop it!”
It was heartbreaking to watch. He then did the only thing he could to release his stress; he let loose and slapped an unsuspecting woman in the crowd. Of course, she was kind and compassionate, but she looked completely shocked. I looked around at the eyes of those in the audience, it seemed that for many they had not ever experienced an incident like this before.
In reality, we've probably all have seen this before. Many of you have been in the grocery store and seen a screaming child. Many of us have probably walked past that child and thought they were unruly, cranky, or even disrespectful to their parents.
Statics show that sensory processing disorders are on the rise. So a vast majority of these children may not be acting out, but indeed might be having a breakdown because the surroundings they are in are overwhelming.
My goal in this lifetime is to help raise awareness for those who can’t speak for themselves.
In order to help raise awareness to my son’s plight, I chose to go on national television. It required me to be completely vulnerable and let people see the most private moments of our lives. It was incredibly painful and uncomfortable, but I was willing to do whatever it takes for my son.
As I sat in the studio with the audience and watched the reel play a montage of my son in his saddest moments, my heart was ripped open. It took all of my courage to sit in that chair and stay present to share our story with the world. This is my contribution to the cause, this is what I can do to help build community and compassion for my son and all those like him.
What can you do?
Are you capable of being part of a movement to create a world full of compassion for those who are different than us?
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