I was enjoying a friendly woman's interaction with Collin at a store last week, when I felt my smile tighten.
"I have a friend who has a special needs kid," she said. "I know they can't focus [visually], but the way they recognize voices is so cool."
This was a kind person. She was stepping out of her comfort zone to interact with a little boy who could not respond to her in a way she would understand. I was very thankful for her effort. But I still stiffened at her words and I had to think through why.
Long, long ago - back in the earliest days of the Collin era - a friend shared an article with me about people-first language. This was back before we had even thought about the term "special needs," when we were just surviving the first horrors of seizures and their treatments, trying not to think about what it would mean long term; but, somehow, this friend had the foresight to interject into our lives this idea that Collin is "first and foremost, a person who has individual abilities, interests, and needs."
So, just like it's untrue to say things like
"Those autistic kids are loud, but they're geniuses when it comes to state capitols."
or "Those food-allergy kids are scary. They can't even be in the room with a peanut."
or, "Those neurotypical kids have it easy. They don't have to struggle in school."
It is similarly unhelpful (and silly) to refer to "disabled kids" or "special needs kids" and what they do or don't do, what they are or are not like.
I know it's not easy. It's one more thing to think through in an already-complicated and sometimes uncomfortable social situation. But I would argue that it's worth it. Not only does it attribute the respect any person would want, but it also orients your own mind and attitude with an openness that leads into a deeper relationship with the person you are describing or addressing.
Because, if you are lucky enough to know Collin, you know that he is NOT a special needs kid. Besides the fact that there really IS no such thing, there is also nothing about him that can be accurately generalized to a bigger group. He is an amazing four year-old kid. He works hard and laughs big and enjoys life with much gusto and very little complaining. He loves swimming and swinging and iPad videos and playing outside. He needs to use a wheelchair. And a feeding tube. And a breathing machine while he sleeps. And a special diet and various medicines. He needs people to stand still and close so he can see them. He needs help using his hands. He can't communicate his thoughts in words yet.
Yes, these are all needs that most other kids don't have. But they don't define him. He, like you, is much more than what he can or cannot do.