Why I Want Kids to Ask Questions About My Son With Disabilities
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The ground is covered in a thin layer of crunchy early winter snow. I walk along a slippery path with a hundred other people toward the horse-drawn sleighs of a rural farm theatre company. The ease of movement is so freeing. I have left my 5-year-old son with disabilities at home this evening so I can take my other children to this magical theatre experience. We find our spot crowded on hay bales and I am sitting at the front closest to the horses. A 13-year-old boy climbs up onto the wagon. He is friends with some of the other children sitting across from me. He looks at me and asks for my spot, because he loves horses. I move over, and he squeezes in beside me.
We had met earlier that day. I was sitting in a crowded shoe changing room of a roller skating arena tube feeding my son. While taking off his skates, this child noticed the large syringe I was pushing into a tube leading under my son’s shirt. After asking many anatomical questions about tube feeding, this child asked, “so this is what they mean by force-feeding, I guess?”
I had to laugh, “Yes, this is the ultimate in force-feeding, you could say.” From the first conversation, I recognize this child as probably being on the autism spectrum. He is curious, and his questions are penetrating and unfiltered. My eldest son has autism and I have met a wide range of individuals on the spectrum. I find his curiosity endearing.
I am sitting beside this child on the sleigh ride around the farm and he remembers meeting my son and asks where he is. Then he starts asking, “why doesn’t he walk? Why doesn’t he talk?” These are typical questions I answer for all children on a regular basis.
I say, “He has seizures. They are like a lightning storm inside your head. When you try to learn something, they blow up the pathway that you just learned.”
Then he asks, “What is a vegetable?” and I say, “well a vegetable is a plant that we eat, what is your favorite vegetable?” I am trying to steer this conversation away from what I suspect he is addressing. He is not thrown off. “No, I know that. I mean what is it when people say someone is a vegetable?” This feeling of dread and sadness is welling up inside me. Vegetable is such an offensive, outdated term. He must have heard children referring to my son as a vegetable at the roller rink that afternoon.
I explain, “It is a cruel, very old word that comes from the word vegetative to describe when a person is in a state where they cannot respond. Kind of like being in a coma.” He says, “but your son does respond. He makes noise and rocks back and forth in his chair.” “Yes,” I answer, “he is definitely not in a coma, is he?” “No!” he laughs. “I guess vegetables look like they are in a coma, like carrots don’t respond, but I wonder what they are thinking? I wonder why they said vegetable instead of fruit, fruits are the same, what is the difference between a vegetable and a fruit?” And we slide into a different line of questioning.
Since becoming the parent of a child with a disability, I have never encountered outright cruelty. Sure, people say things that hurt, without understanding how their off-handed comments trigger my emotional pain. But I have never heard anything but sweet things about my son who is very easy to identify as having disabilities. It took a child with no filter to remind me that the world is cruel. That to overcome that cruelness, people need teaching. They need their questions answered, questions they are not bothering to ask and instead answering them with their own set of assumptions.
This child was not cruel, he was caring. He asked a simple question about a word so he could better understand the world around him. Of the group of kids that day at the roller rink, he was the only one who wanted to know more, who asked difficult questions and who saw my son as a person. He approached my son as someone who was different, yet worth wondering about and not just writing off as a “vegetable.”
This child has something to teach about how we can interact with people around us who are living different experiences. Ask the questions, interact, see the difference, see the ability. When you sit back and don’t notice that my son’s reality is so much different, it hurts. It hurts more to be ignored than having to answer the difficult questions.
Getty image by Bokan76.