Maybe her stubbornness isn’t at all related to her cognitive challenges, maybe it’s a whole separate thing like the hugginess of some DS people — but, if disciplinary consequences only work when they’re immediate and super-consistent (administered by robots in some parallel universe where consistency always happens?), isn’t that a cognitive challenge, absolutely open for discussion?

And I totally do the same thing on FB for the same reasons. I totally get it. (And I just asked you to be my friend.) /dork

Chris, you make some really excellent suggestions. I have done exactly the same thing as the principal, by the way — when a friend with a kid with autism shares a concern, I’m apt, I am now realizing, to simply say, “Oh, I know, Annabelle does the same thing!” It may or may not be the same thing (probably not) and that may make the parent feel better — or worse.

I think as parents we all subscribe to the “misery loves company” motto — in fact, Maya and I say just that several times a week! — and there’s some real truth to that. There’s also truth in the fact that all (or most, anyway) kids can be stubborn. In Sophie’s case, it’s severe. It happens many times a day (often many times an hour). It’s extreme. It’s not constant, it mostly happens when there are lots of transitions going on or she’s tired, hungry bored. (I know, just like the rest of us, huh? Not quite.) With Sophie it gets in the way of her education, her socialization, her quality of life. It’s going to have to be a topic on the table at our meeting tomorrow, in a way that stubborn-ness rarely gets brought up in other education discussions, I’m guessing. I suppose that maybe it doesn’t matter that it’s related to the fact that she has Down syndrome — certainly she’s unlike any other kid, Down syndrome or not, just as all kids are unique.

But something in me says that downplaying Sophie’s stubborn behavior is not serving her well, and it seems to me that if we can recognize it’s a different kind of behavior than I’m guessing the principal/teachers/therapists see in typical kids on a regular basis then maybe we can find some strategies to address it. We know that kids with Down syndrome have a higher incident of certain heart defects and a greater chance of thyroid problems. We are at the ready with surgery and medicine. We don’t deny that those situations occur more frequently. Why deny that some kids with Down syndrome are extra-stubborn, and work to figure out ways to address it instead of spending so much time making each other feel better?

I try to treat Sophie as a typical kid — and, you’re right, Chris, to ask the world to see her as typical, well, maybe not typical but as a kid with Down syndrome who also has more going on than that — and on a lot of fronts that works and it has made her a better, stronger kid for it. But as her mom, I feel an obligation to face reality, too, and it seems weird to pretend that (at least some) kids with DS aren’t extra-stubborn.

Clearly I’m overthinking this! Maybe I’d be better ignorning the stubborn-ness. I don’t know. I do know that if I’m going to blog about this and try to be honest, the bad’s got to come with the good.

Was it the “I know just what you mean” part of her statement that got to you? Because she can’t know JUST what it’s like? I agree that she can’t. And that as an educator, she ought to know that she can’t.

I guess I can’t see how Sophie’s stubbornness that day was absolutely unrelatable to ANY other parent, which is what you’re saying– you can’t imagine that the principal’s daughter ever had a day like that? Even one day? I get, absolutely, that her daughter didn’t have as many days like that as Sophie does and will.

It just seems to me that at the end of the day, the principal’s instinctive first impression of Sophie in that minute as “stubborn child” instead of “stubborn DS child” might bode well for the future. Not just for Sophie but for all kids with DS. I know it struck you as her skimming over, as just a daily occurrence, something that is much more for you and Sophie than the usual hassle of kids and parents. But maybe it’s a necessary step in the long road of getting people to recognize that they don’t have to treat kids like Sophie as 100% different from all other kids?

My sweet tempered girl gets ” stuck” on ideas, or emotions sometimes- and can’t find her way getting unstuck. What others may not get is that it is a processing thing, and at that moment she doesn’t have the ability to reason her way out of it. Sometimes I think that is the biggest difference…

great piece.

sorry your morning was so rough, for all of you. i’m sure you are not the only DS mom with this concern, I bet her therapists would have some good ideas.