Williams Syndrome Wednesday: We get it wrong too

I have a confession to make. I seem to have a large foot stuffed in my mouth over and over again. I keep saying the wrong thing -particularly to one parent who has an older boy with significant physical disabilities and a second, a typical child Obi’s age. See, even that, is that the right way to say that?

The most recent foot-in-mouth incident arose when I was piping up in a conversation between said woman, another woman with a boy about Obi’s age who has similar developmental delays and myself.

The woman with the boy close to Obi’s age was asking the other about making the decision to have a second child when the first one has special needs. My addition to the conversation was that you’re making the decision knowing what lies ahead and what it means for your family. I found that when I had one typical child already then learned that Obi had special needs, I worried for the first. How would this change his life? What does it mean for him? We knew that we were pushing pretty hard to have #2 – (you can read all about that here) I wondered if we should have…

Now woman with older special needs boy and typical girl said “well it will only make him a better person” and walked away.

Hmmm. Didn’t mean for that to happen. Also didn’t mean to say that he wouldn’t be better for the experience of having Obi. Just meant to say that you have all the same doubts and feelings of guilt whether you plan to have a second after you have an extraordinary child or you find out that your family has grown by one and it’s taken you in an unexpected direction.

Just meant to say that when you’re in the throws of the ‘poor me’s’ a lot of things go through your head. For me, I wondered if it was my fault? (It wasn’t). If I had just been happy with one child would we have been better off? (We wouldn’t have.) Will Big Brother resent us and his sister later? (Perhaps, but if she was an Olympic Gymnast, one of those crazy med-school-at-15 kids, a kid who’s allergies keep peanut butter out of the house, outgoing while he’s shy…he might resent us/her too. Siblings resent all kinds of things.) If we, our family, our marriage, if I would survive this. (Well I will, our family likely will and our marriage? Well the statistics say no but I’m choosing to remain optimistic)

I was trying to say, there’s no right answer. You just have to do what feels right for you.

Instead she walked away and appeared appalled that I could ever thing my sweet baby was ‘less than’ and by association her boy was ‘less than’. (maybe I’m reading too much into that. maybe her baby girl, who wandered off, needed her).

Regardless, the moral of the story is We, us parents of special needs kids, we get it wrong too. When you’re talking about a child with an unfamiliar diagnosis we ask stupid questions we regret later. When we’re in a group with a child that exhibits behaviour that’s different or unexpected, we look ‘too’ long.

But we still ask. We still look rather than looking away. And that’s what we want you to do. Sure, you may stuff your foot in your mouth time to time. Been there. Done that! But please, ask questions. Make positive comments. Choose to learn rather than look away. When I say things that come out all wrong, I hope the parent knows I have the best intentions even if I don’t have the best expression of them. Just as I know you have the best intentions too.

If we get it wrong, you’re bound to get it wrong sometimes too. We’re all human. All just doin’ the best we can. So I urge you to keep trying to connect – foot be damned. It’s the only way any of us is ever gonna get it right.

PS: Mom at group, I’m sorry if I made you feel bad. It was certainly not my intention and I think my words just didn’t accurately express the emotion I was describing. People say stupid and inappropriate things to me all the time. But as long as they are trying to get it right, I keep listening. I hope you can understand this apology though my foot.

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