How I’d Like You to Treat My Son

With apologies to those readers who know this all too well, one of my three sons, James, has a Ridiculously Rare Chromosomal disorder. He is 4, non-verbal, non-ambulatory, fed via feeding tube, very social and friendly, and apt to attempt to give people giant kisses.

My life, with James in it, is far far far better than I thought it would be when I got the diagnosis. I love that little guy to pieces, and would love him to pieces if he never learned to walk, talk, or do anything he doesn’t already do now. I can’t imagine I would be happier if he were typical.

But, of course, there are some things that bother me.

When I take him out in public, it’s not like strangers yell insults. I have never heard anyone ask me to take my special kid to go be special somewhere else. (A couple of people have gotten up and moved away, but that is very rare.) Indeed, some people are very kind. Some are surprisingly tolerant when he suddenly holds their hand, or pats their bellies. But the vast majority of people look, notice him, look away and pretend they saw nothing. I really really hate this.

This is exacerbated at social events where I know some of the people, but not all of them. People glance at James and then pretend they don’t see. I went to a birthday party for one of my older son’s friends today. I arrived first with just my oldest. Everyone was very chatty, and then my husband showed up with my two youngest, and handed off James to me. Total silence, except for the people I know already.

I took James into a moon bounce. A father was clearly worried that his girl would jump too near James. I assured him that James had two brothers and was used to regular maulings. He’s tougher than he looks. The father seemed to appreciate this. But the mother of the girl pulled her girl close and started whispering and looking at us. I see this whisper all the time. I imagine they are telling their kids, don’t stare, don’t say anything, don’t mention that he’s disabled, etc.

So there are lots of lists of what you are not supposed to say to people who, say, have cancer. Or a child with disabilities. I probably made one at some point. But I am rethinking this. (Except if you tell me that God doesn’t give you anything you can’t handle. Then I go ballistic.) I think these lists have made people so afraid to say the wrong thing, they’re afraid to say anything.

So let me tell you what I would like. In social situations, it is always my job to put you all at ease, start conversations, make reference to my son’s disability so it’s out in the open. I would like some of you to take that job. Even if you say the wrong thing. I’d like you to try.

Of course, I cannot speak for every parent of every kid with special needs, just as I cannot speak for every parent of typical kids (although I have two of those guys, too). But I can tell what I would like.

Don’t pretend you don’t see him. That’s aggravating beyond belief. Recently, a guy came to our house to install a new dishwasher. He looked at James and said, “So what’s wrong with your kid?” Honestly, after so much tiptoeing and pretending-not-to-see, I found it so refreshing.

Of course, you don’t have to say that. Just come over and say hello. Ask how old he is. Where he goes to school. What he’s into now. Anything you would ask for any other kid. There have been plenty of more polite ways to engage in conversation than the dishwasher installer. People often tell me of a relative with special needs. One woman just asked, “How do you communicate with each other?” Some just say, “Wow, you’re a friendly guy!” and start goofing around with him. I love you people.

Most importantly, say hi to him. I can’t tell you how many people don’t do this. Just because he is non-verbal and looks kind of spacey does not mean he doesn’t understand language or hear you. He understands quite a bit. And no, I’m not delusional for thinking this. Also, please wait for a few seconds for a response. Messages don’t really zoom around his brain. Rather, they mosey. So it might be several seconds before he responds to a hello. But he often does after someone who has just said hi has turned away.

I don’t mind if anyone asks me questions, and neither do most of the parents of special needs kids I know. Some do. So, that’s hit or miss. I certainly don’t mind pretty much any question a kid asks. One of my older son’s friends today was asking if James can say anything, and if he would talk when he was a grown-up. I love that he asked. I’ve had kids ask why his eyes are shaped differently, why he eats through a tube, why he acts like a baby. Whatever. Those are all totally legit questions. I wish like anything people would not tell their kids not to mention anything.

In short, we’re here, we’re queer (in the old-fashioned sense of the word), and I would love it if you got used to it and started to talk to us.