Tuesday, February 21, 2012

The elephant in the room

The older my boys get, the more I find myself in public with them, knowing the person next to me is in the process of figuring out that there is something not quite right about one of them.

Today I went to a library storytime for babies. For most of it, Malachi was in my arms while Jaden roamed the room, but that wasn't too unusual; many other children were in laps as well. But at a certain point the storyteller brought out a bucket of toys for everyone to play with. This apparently was the cue for the moms to start chatting while their children were happily distracted. I spent a few minutes helping Malachi pick out and play with toys, but I had come with another multiple mom and I wanted to chat, too. So I left him laying on his back on the floor in the middle of the room.

I'm probably being paranoid, but it seemed like I could feel, one by one, the mothers in that room asking themselves and each other a silent question: "What is wrong with that kid?"

They didn't act weird towards me or towards Malachi; they acted like everything was normal. But we all knew there was an elephant in the room and no one knew how to bring it up.

I've heard enough times by now that people take their cue about how to react to your child's disability from you. If you act like it's no big deal, they will too.

I guess I'm just not sure what the best way to "act like it's no big deal" is. If it truly is something that doesn't matter and isn't shameful, doesn't that mean you talk openly about it? And since people aren't going to ask you directly because they are worried about offending you, should you just be upfront and boldly answer their unspoken question? How do you do that in a way that doesn't seem self-conscious? How do you do that in a group situation?

Recently, I tried to "break" the news to a twin mom who was praising my courage for getting out by myself with the two of them. "Well," I laughed, pointing at Malachi, "he doesn't move very fast." She didn't laugh. She was just confused and unsure if it was something OK to laugh about.

Another time, a dad asked what was "up" with Malachi. Relieved, I launched into an explanation about his CP only to realize he wasn't asking about that at all.

Many other times, I've sat silently, wondering if they are wondering. I think about how I would want to be asked, but nothing sounds good. I don't envy their role any more than mine.

Does anybody really know? How exactly does one address the elephant in the room?


19 comments:

  1. Hi Shasta! I think you should check out my friend Alissa's blog (http://www.notavisitor.com/). She deals with a different elephant in the room, but I think you would like her approach to motherhood, adoption and life in general.
    xAndrea

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    1. Cool, thanks! I'll check her out!

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  2. I'm sure people wonder. I would wonder. But I wouldn't ask, because I'd figure whatever, the kid has some type of disability. Whoop-di-do. I've had people ask, not meaning to be rude (though they're phrasing could have used some work), and I just say "she has cerebral palsy." And if they don't know what that is, or wonder how it was caused, I give them the answer. In 10 words or less.

    I don't think we are under any obligation to just make an announcement. It's nobody's business.

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    1. True. But I *hate* the silent question. I feel like by not saying anything about it I'm acknowledging that it's something that shouldn't be talked about. I hate how it's such a huge part of my life and yet this blog is the only place I feel like I can really talk about it. When people say "Oh, twins, that must be hard!" I want to say "Not really. Try having a son who can't move independently! THAT'S hard!" But I can't, because they would have no idea what to say to that.

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    2. I was going to reply and say exactly what PDX said below - by acknowledging it even without someone asking, to me it's saying their cerebral palsy is all they are. When I know that is the exact opposite of how you want him to be viewed.

      And I have had people say "oh two, it must be hard", and I've said "Well, Julia's not walking yet, so I'm not chasing two around the house."

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  3. You are spot on with this post, Shasta. And I agree with you - neither role is easy. And this is why I love reading your posts. You do a beautiful job of expressing your reality - and in this one, you expressed mine, too, as the "other mom." The mom wanting to ask, wanting to show my interest, but not wanting to overstep or offend or appear nosey. And I love that you say you don't know how you'd want to be asked about Malachi. I appreciate that honesty. It confirms that it's not all in my head - or "just me." It's a really interesting dynamic. How is it overcome?

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    1. Thank you, Jill. I love that you're willing to explore these questions with me.

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  4. I think by not saying anything about it, you're acknowledging that it's your normal, rather than something that shouldn't be talked about. It would be more awkward to "announce" that Malachi has an issue, every time you were in a public setting. That would make it seem like the most important thing about Malachi is his disability, that it defines him. Malachi is a person with a disability, rather than a disability first.

    But yes, it's hard, from both sides.

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    1. Yeah, I wasn't really suggesting that I would stand up in a room full of people and make an announcement. Just, what are ways that I can break the ice? How can I let people know that it's OK to talk about?

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  5. You know I think it gets easier when they are older and it is more obvious. When my girls were younger it was harder because you could see people wondering what was going on. Now it is just obvious. For some reason it is easier - for me anyway!

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    1. I can definitely see that. There's less of a question mark.

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  6. I think people skirt us when they are unsure so I tell them right away in a brief and cheerful way. Otherwise, it is just in the back of everyone's mind festering. "He has Cerebral Palsy so it takes him a minute to wave. The more I do it the easier it is. I don't really have to think about it first anymore.

    I agree it gets easier the older he gets.

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    1. I like your approach Kristine. I'll have to try that.

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  7. You know, I think sometimes you just don't have to say anything. And I think the elephant in the room that YOU feel doesn't feel like anything to anyone else, it's just that WE notice more than other people. But I also agree - it IS your normal, and no one else goes around explaining what their kids are or aren't doing and announcing the differences, so why should you? I also make people ask if they really want to know, and I smile and nod a lot. It's my normal. Also, as these kids get older, how YOU react will also be passed on to your kids - they understand and will be doing this too. If you want your kids explaining about CP in all of these situations then you should too, but I believe maybe they should see the person first, and then you can round out with details, especially as both the boys learn to communicate for themselves.

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    1. Hmm.. I definitely want people to see the person first, but I wonder if the unknown would be too frightening or uncomfortable for them to really make a connection. With it out of the way, would it be easier to see him as a person? Or, like you say, will it brand him?

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  8. It does get a bit easier as thye get older...that's one reason I really like the wheelchair...there is no more elephant. People just know that Ben is disabled. Yeah, they don't know why or what, but there doesn't seem to be any more awkwardness.

    We used to go to an indoor playpark when the boys were little and that was always awkward. But eventually, I just said, Ben has Cerebral Palsy which means he can't walk. And left it at that.

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    1. Playgrounds are always tough on so many levels....

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  9. It seems like you've gotten some good advice from the comments above. I don't have any advice since I would be the uncertain bystander. Though I agree mostly with the poster above who said the you probably notice it more than anyone else.

    In the situation you described, I might wonder what was up, but probably only for a moment. I might notice a difference, but since it's not a disturbing difference, I wouldn't think a whole lot of it.

    Sorry you're dealing with this!

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    1. I think you're right that I think more about it than anyone else. It's much more important to me than anyone else that Malachi be seen as an equal.

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