Just How Politically Incorrect Is It To Point Out That Kids With Down syndrome Can Be Stubborn?
posted Tuesday August 24th, 2010
Tomorrow there’s a meeting of Sophie’s “team” — the therapists, teachers, even the principal, everyone who works to make it possible for her to be mainstreamed at a public school. It’s a good thing, this meeting. In fact, I demanded that it be written into her IEP (the document dictating her services) since typically the team meets in May and this is a much-needed chance to assess how things are going at the beginning of a new school year.
This meeting’s got me thinking about stereotypes.
(And now, please pardon me, I feel a few digressions coming on.)
Digression Number One:
Stereotypes are dangerous. I know that. For years I joked — in all seriousness — that Jews don’t like guns. I mean, I don’t like them. I’ve never held one, much less had the desire to use a gun. And all the Jews I know are just like me.
Then Ray, who does not happen to be Jewish and does not hate guns, interrupted my Jews-don’t-like-guns schtick one day with a single, show-stopping line:
“What about Israelis?”
Oh.
Digression Number Two:
When it comes to Sophie, I’m (almost) all about stereotype busting. Funny how suddenly Facebook has become such an important means of communicating in so many ways. I’m sure many (most?) of my 500-plus friends hid me long ago, simply because I post way too much about my kids, particularly Sophie. Call it parental indulgence, or simply the case of an obnoxious mom, but I prefer to think of it as a little social experiment. By cataloguing Sophie’s day to day activities — by showing the outfit she chose on a Friday or mentioning that suddenly she’s calling us “Mom” and “Dad” instead of “Mommy” and “Daddy” — I’m trying to take a Person with a Disability (the kind of person I’d have shirked from, 7-plus years ago) and make her 3-D. Not in a global sense, but in easy, bite-sized chunks. I wish I’d had that, pre-Sophie.
Does that make any sense at all? I’m not sure it came out right. But that’s the general idea.
OK, digressions over. Back to the stereotyping-at-hand.
Yesterday morning, Sophie was in a mood. She refused her Special K, turned my computer on when I told her not to, and demanded a lot of coaxing to get dressed. (This involved a “fashion walk” of five dresses, though she’d requested seven.) None of that is all that unusual, actually. But it was the crucial out-the-door moment that really snagged me, as it so often does.
While I was in the shower, Sophie grabbed one of her baby dolls. “I be a Mommy when I grow up!” she told me. “That’s so nice!” I called over the water, trying to push away the demons that whisper in my ear about the unfairness of the universe. A busy Monday morning is not the time to ponder the future — and possible procreation and all that entails — of your special needs daughter.
Apparently Sophie’s plans for the near future included a stint as a stay-at-home mom, because a few minutes later, I found her in my bed. Both she and the baby doll were tucked in, and I was informed that the baby was asleep and neither of them were going anywhere.
“That’s sweet, Sophie, but it’s time for school! We’re late!” I tried to say as kindly as possible. This turned into 10 minutes of cajoling, begging, yelling, counting, dragging and tears. Not good.
We got to school so late there were no parking spaces, which sealed our fate as Late. I marched the girls directly to the office, thinking along the way about how to turn this into a Teaching Moment. Most punishments slide right off Sophie’s back, but sometimes I can a get a message through. This morning I was going to try, at least. (Annabelle was in on the plan, by the way, as a fellow cajol-er. She gets it, probably better than I do.)
We skidded into the office just as the bell rang. “You can just go up,” the secretary told the girls. Oh no, I told her, adding that she should write “Because Sophie was not a good listener” on both late slips. She nodded, looking very serious. The principal walked by, and I even made Sophie tell her why we were late.
Then I kissed the girls, talked to Sophie about starting fresh for the day with a new attitude, and they both disappeared down the hall. It wasn’t even 9 and I was ready to go back to bed.
I smiled weakly at the principal. “I don’t know what to do,” I told her. “I know it’s a Down syndrome thing — Sophie can be so incredibly stubborn.”
“Oh, I know just what you mean!” she said. “My daughter was just the same at that age! It was terrible!”
For once I held my tongue around this woman, who tends to inspire too much honesty from me. What I wanted to say was, “That’s nice of you to say, but it’s not true! You are so condescending! Your typical kid was typically stubborn — and I know what that looks like. Yes, Annabelle’s well behaved, but trust me, she’s had her moments, and I’ve seen a lot of typical kids and I’m telling you, they don’t act like Sophie. Yes, other kids have issues. But this is one of Sophie’s issues. And to tell me it has nothing to do with Down syndrome, I mean, what am I supposed to do with that? Of course it does! You can’t pretend she doesn’t have it. That won’t make it go away. And it won’t make her behave. I know — I’ve tried that.”
I mean, really. I know the principal was trying to be nice, which is why I didn’t say anything, but I’m considering mentioning this stubborn thing tomorrow at our meeting, particularly since at least one therapist has already mentioned Sophie’s difficulty with transitions. (Code for “your stubborn kid with Down syndrome is driving me nuts.”) I know I’ll get dirty looks.
It’s not easy, navigating this P.C. Thing. I get that it’s not cool to stereotype Jews and guns (even if I maintain to this day that there’s some truth to my theory, some Israelis aside) but the truth is that kids with Down syndrome can be incredibly stubborn — maybe it’s not as strong a trait as snubbed noses and small stature, but to ignore that it’s a problem simply in the name of Political Correctness, now what’s correct about that?
Reading this, you probably thought, “I’m with the principal. Sounds like just another stubborn kid. With an insensitive mom.”
But I bet you didn’t think that if you a. have spent a hunk of time around Sophie or b. have your own kid with Down syndrome.
As for me, I’m not changing my mind. I’m stubborn that way.
This is truly a conundrum to me. I mean if you say something you risk the “oh now you want special privileges for THAT?” looks/attitudes/possible decisions.
Yet if you don’t, it’s almost like saying “oh yes Sophie can navigate the stairs like all the other kids” when you know she can’t.
Sophie to me just seems so much like a *normal kid* that I forget sometimes she does have unique needs/issues. I hope I never am insensitive about these things because of my own denial filter.
Good piece, it makes ya think.
ROTFLMAO! My gosh, you could be describing OUR child – with Down Syndrome – AND our Monday morning. So, I support your theory.
What I believe, however, is that our little girl’s greatest disability is, in fact, that she LOOKS like she has DS. She is, like your Sophie, apparently, not like the “typical” DS child. (really, is there one?)
Our girl does not do the “huggy, trusting, lovey” thing… instead she is gruff, headstrong, VERY determined. She’s quick to anger and slow to cool down. She knows what she wants and doesn’t… so NOT “DS”.
DS kids seem to fall on either of these extremes – but there is very little middle ground. Either way you get one in your life, however, these are wonderful kids that can sure teach us an awful lot, huh?
Oh man. I could have written this post. I know, SHOCK.
Of course I get it. Totally. I’ve had that same conversation you had with the principal. I think people are trying to be nice. Also they don’t know about the stubborn thing. She might truly think Sophie’s stubbornness is comparable. And I’m sure there was an element of “comfort the special needs mom.” I’m uncomfortable with stereotypes too but I’m sorry, the stubborn thing and DS? I just think it’s true. There, I said it.
If that makes me un-PC then oh well. Cause I live it every dang day.
Luckily, Leo’s stubbornness is tempered by incredible empathy, patience and the one of the biggest hearts I’ve ever known. Knowing this comes in handy on those mornings we can’t get out of the house and I want to bang my head against the mini van and then crawl back into bed.
Curious to know how the meeting goes.
it’s funny, because I don’t think of stubborn as part of the DS stereotype. It’s certainly nothing that leapt to my mind before having a kid with DS. Sweet, loving, all that, sure, but not stubborn.
It sure is true of Abby, though. and so freaking frustrating.
hee hee, i like the teaching moment, that’s the kind of thing I would have done.
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.
Ironic that when you meet to discuss an individualized education plan, there are so many stereotypes to consider- when really it is all about , the individual your child is- right or wrong, pink or blue, fast or slow.
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.
I don’t have a child with DS–I’m being educated by your blog. So I’m willing to admit I was thinking, isn’t it a good thing that the principal sees Sophie as “stubborn like a “regular” child” instead of “particularly stubborn?” Isn’t that what you’re trying to do on Facebook when you talk about Sophie’s choice of an outfit– trying to make people see the “normal” things that she does?
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?
Thank you for all of the comments on this — as you can see, I’m struggling to figure it as I go, so thanks for bearing with me.
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.
Thanks Amy for your honesty. Thanks for sharing your heart with us. My hope for you is that you have a good meeting and that everyone involved truly hears you – and that you are not brushed off. Way to go Mom! Oh and btw-I always use the phrase-”I’m so blonde” when I make a mistake…should I stop doing that? Maybe that isn’t P.C.?!?!? I don’t mean to offend anyone. Hee-hee.
One-Jew don’t like guns. Neither do Israelis. We use them only because we love our families enough that we do what we have to do. But the MACHO “Love Guns” is not part of Israeli society….. (Golda Meir once said she would forgive the Arabs EVERYTHING if peace came, except that they had made us kill.) (Killing effects a person , eveb when one has no choice.)
Two- It is a stereotype if one assumes that ALL kids with DS are terribly stubborn. But it is definately true that many (and probably most) OLDER kids with DS are stubborn. Thery tend to like to do things in a certain way or a certain order.(it is easier that way).
But with younger children with DS (including your daughter), I would first check if everyone in her life are working in a consistant way to prevent (lesson) disobedience. If she is not listening, you need a “say-warn- carry out ” system. You make your request. If the child does not comply, you repeat the request with warning of consequences for non-cooperation. If that doesn’t work, immediately carry out the consequence.
Well, interesting as usual! I kind of most agree with Suzanne and some with Chris’ points too. Knowing about the famous “S” quality of kids with DS we’ve really focused on “cooperation” and “good listening” as values to cherish in our house. Kayli can really have trouble processing sometimes when there is something going on in her head or environment that she is enjoying and transitions can be hard, especially when hungry/tired. In an ideal world ( when unstressed ourselves) my husband and I are able to use humor and participation (leaning into the fun thing for a moment rather than pulling against it). So,a version of rickismom’s system would be “say what it is you want, join in to the moment (ex. silly tickle or imagination) which kind of shifts Kayli’s gears a bit into her usual warm, want to please self, repeat request with warning etc….
Of course I’m not suggesting that this would work for Sophie or that you haven’t been doing that. At school, where there is less leeway for strategy and more need for automatic obedience we do alot of education of how to help Kayli (or the teachers) through transitions smoothly – routine is nice, giving her responsibility is great, reiterating the expectations prior to trying to do something is good too.
I think, personally, everyone has personality traits and with processing delays those traits can become magnified. So I guess stubborn is okay to say, but like lovey and huggy, it is kind of just another generalization which then leaves room for individuality – same with the heart/hearing/eyeglasses things.
I love how you put things out there Amy – stuff we all think about!
I just fell in love with you all over again. I haven’t been a good reader of blogs lately, but this is so worth the read and I have to catch up again. My Georgia is a stubborn bear, we didn’t get the happy-go-lucky sterotype that gets flung around, not by a long shot. My girl is a bear! And a mule.
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
I don’t know many people with DS — that’s part of why I love your blog & your facebook feed — but even before I read this post, reading your other stories made me think, wow, Sophie sure is sometimes truly difficult to handle. And a joy, and a fabulous kid, but, you know, apt-to-run-off-the-playground mischievous. I just assumed that Sophie has many of the motor skills & looks of a “normal child”, but not all of the long-range-planning reasoning skills that make it easier for me to explain rules to my own non-disabled child. I just assumed that this sort of extreme mischievousness is part of her disability. It never occurred to me that wasn’t PC.
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?
“3-D in easy bite sized chunks………”
exquisite