The other day I was sitting in a diner in a suburb of Ft. Lauderdale, Florida, on a quick trip to take care of some business. I was taking a bite of salad when behind me and to my left I heard a sharp clinking sound. It was the distinctive sound of keys hitting marble. I turned my head and noticed that at a table nearby, someone had dropped their keys to the floor. I also had previously noted that both men at that table were in wheelchairs.
It is my usual practice to help folks, because, well, why not? So I put my fork down and slid out of the booth. I didn’t make a big deal out of it. I simply went over to their table and bent down for the keys. As I stood up, my eyes met one of the men’s eyes. He was a handsome guy, maybe in his mid-thirties with an engaging smile. I held the keys out to him. He said, “Thank you,” and proceeded to use both hands, with difficulty and no visible strength in his grasp, to hang onto the keys. Cerebral palsy? Maybe. Anyway, that was how it appeared.
I said, “My pleasure. You got them?”
He said, “Yes.”
I smiled at both men, went back to my table, sat down and picked up my fork.
It was no big deal and I wouldn’t even remember it right now except that was when my dining companion said in a quiet voice, “That is such a terrible thing.”
“What is?” I asked.
“Having to live that life. It’s such a terrible life,” he said.
This floored me.
My son, Kai, is seven years old and has special needs. We have wracked up eight different diagnoses so far, including PVL (Periventricular Leukomalacia), Duplicate Chromosome 16, Autism, Apraxia, Sensory Processing Disorder, Speech and Feeding Disorders and more, plus developmental delays in all areas. Often, when we go out in public, he will stim and make loud noises. He will lay on the floor or sometimes the ground, because that is where he is comfortable. Adults look at him and then look away. Sometimes they give me a quick smile first. They often look as though they feel awkward. Kids stare at him and will often come up to me and ask, “What’s wrong with him?” I love it when they ask because then I get to introduce them to Kai and explain that he has a special brain and probably won’t talk to them but that he is very happy to meet them. The adults with those kids usually hush them because THEY feel uncomfortable.
It never occurred to me that other people might think that because Kai has special needs, he has a terrible life.
Kai has a WONDERFUL life. You have never met a more content and happy little boy. He has very simple needs. He wants milk in a sippy cup, his tablet for educational videos and cartoons, his favorite foods including canned pasta, vanilla wafers, bananas, pudding and applesauce and a chair that rocks. He is extremely affectionate and as long as he has his family around him, or is on the school bus that he loves or in his classroom with his favorite teachers (on a special ed campus, no inclusion for him), Kai is good. He wakes up with smiles and kisses for us every day. Sometimes if he can’t communicate what he wants he may get frustrated but tantrums are short and usually get resolved well.
Does Kai suffer? Well, he has had two mild seizures, both of which he has come out of well, even increasing his verbal word usage the next day. Other than that, no. He is blissfully unaware when people look at him. He is not interested in parties and doesn’t know if he’s not invited to one. If he is invited to one, he will stay to himself and smile, content. He likes people, but other then family, he’s not really interested in people. He doesn’t care about presents. It is hard to buy him anything because he has few needs and even fewer wants. He doesn’t want to unwrap a gift. He doesn’t care if other people get gifts.
Yet, he is a gift.
He spreads sunshine wherever he goes. His smile and laugh are infectious. For everyone who stares, there are just as many, if not more, who smile when they see him.
But I guess, upon further thought, maybe people think that because he has special needs, his life is terrible.
My dining companion thought those men in wheelchairs had terrible lives. Is it true? Who knows? But that is kind of the point. Disability does not mean a terrible experience. And, further, the most able-bodied, able-brained (is that a word? I may have made that up) person in the room could have a terrible life. Or a great one. Or an average one. There is just no way to know by looking.
So, my point, in a nutshell, can be summed up by my nine year-old typical daughter who recently said to me, “You can’t judge a book by its cover and you can’t judge a child [or a person] by their difference.” How do you like that for wisdom?
As for me, when things fall, I will continue to quietly pick them up. I invite you to do the same.
Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!