Whine

With Mojo Jojo in tow, I took B in for an ENT appointment today.  There was a long wait, which meant that there was plenty of time to spend in the waiting room observing other children.  And while it started off well, by the end I was having one of those moments.  I've written about these before.  The moments when everything is going along fine and then suddenly I'm sad about B.  Grief sneaks in. 

She's different.  I've known this for a long time, of course.  But what hit me today is that it's not simply a matter of her delays.  The evaluations that place her, as I predicted, at about 12 months developmentally for language skills and 19 months for fine motor skills, give me this sense that she's just like other kids except delayed, but really, she's not.  Today she was waving hello at everyone and grunting, "uh uh uh."  It's the sound she makes when she wants to get someone's attention and I'm so used to it that I don't even notice it anymore, but today I realized that it's kind of weird.  I mean, she can say something much closer to "hi", but instead she was waving, smiling, and grunting.  The other moms were nice and smiled and waved back, but I could feel them watching me and I felt self conscious, and for the first time, I realized that I was feeling self-conscious about B's behavior.  It wasn't just the grunting.  I gave her some paper to play with and she kept putting it in her mouth.  I'm trying to teach her not to put everything in her mouth, but she does it anyway and I end up saying "No" nonstop or taking away the very thing I just gave her to keep her occupied.  (Although I have to add that when she wasn't putting it in her mouth, she was trying to put it on top of her head like a hat, which was damn cute if I do say so.)  So after I took the paper away and she was getting restless, I thought maybe I should use this time well and practice her walking, since it was a huge waiting room and there was plenty of space.  But she did not like that idea and she flopped down on the floor and rather than tell me, "No!" which she is able to do and which would have been appropriate, she did her whiniest grunt.  Loudly.  And people turned to look.  Or maybe they didn't and I just felt like they did.  And I found myself wishing that I had brushed her hair better and dressed her in something cuter and that I hadn't tried to make her walk, thus drawing attention the fact that she can't. 

I was feeding J a bottle (I'm really bad at public nursing) and holding B on my lap, and she was waving at this adorable little girl who must have been just over one.  The girl walked over to us and was smiling.  I think she wanted to see the baby, so I said something about the baby drinking her milk.  I was totally welcoming toward this girl and B was all smiling and waving, but the mom kept urging her to come away and not bother the baby while she's eating.  It was so obvious that we were happy to talk with her, so did the mom really think she was being a bother?  Maybe. Some moms are quick to think that.  Or maybe the mom didn't want her to go up and talk to strangers like that.  Reasonable enough.  But of course I end up wondering if the mom felt uncomfortable because of B. 

And this is what I hate about the special needs parenting thing.  It's not B herself -- she's great, usually.  The whiney grunting thing is annoying, but every kid whines and it's always annoying, so I don't hold that against her.  It's that it adds all of these layers of interpretation to inconsequential interactions.  It’s exhausting.  And I feel like I have to put on this show.  I don't want people to pity me, and I want them to feel positively toward people with Down syndrome, so I have to present an image of What It's Like.  Because that's what they're all wondering, isn't it?  What's that like?  And even though lots of other kids might be whiney at a doctor's office, when my kid whines (in her special way), I have to carry the burden of not wanting other people to think that this is What It's Like.  And if I'm in a hurry and don't fix up her hair, I end up feeling like I've let down the whole DS community by not being a good enough advocate, even if my own hair is an unshowered mess.

I’m not sure I’m articulating this very well.  I just want us to be us, and I don’t want to feel like everywhere we go, we stand for Down syndrome.

And as for the whining?  You can see where she gets it from.

Comments

[Erin]

I have read your blog for a while and I have never commented before, but I have two kids, neither of whom have Down's, and they are huge whiners. Like you, in public I am very welcoming with other kids coming over and I find that other mothers do the same thing and I wonder, am I offensive? Are my kids not dressed right, etc. I bet it was not because Miss B had Down's, it was probably because she was one of those moms. The non-friendly kind.

[Jen]

"It's that it adds all of these layers of interpretation to inconsequential interactions. It’s exhausting."

You totally hit the nail on the head right there. That's exactly what it's like. I guess the key is to just not care what other people think. I don't know about you, but I'm not there just yet.

But, bravo to you for venturing out in public with both of them. I don't have the stamina for that.

[Anne]

Oh, but you did articulate it well! And thank you for doing so. You're last big paragraph, the one about layers of interpretation to inconsequential interactions, I loved it and identified very much.

[Rebecca]

I often worry about the perception of others in public. I too think that E and I must portray the most ideal image when we are out and about because I don't want either of us to become the negative stereotype that lingers in one's head about Ds.

E throws amazingly large HUGE outbursts in public. It used to bother me very much, but lately, I have come to realize that I can do what I can to change how she acts in public, but in the end, it's her choice. Sometimes outings go really well, and others...well, others find me driving home in the car feeling awful about her display.

I emailed you some time ago, didn't get a response. I'm sure your really busy, but I just wanted to see if you ever got the email?

[Beth Price]

"I don't want to feel like everywhere we go, we stand for Down syndrome," and "If I'm in a hurry and don't fix up her hair, I end up feeling like we've let down the whole DS community"...yes, exactly! I relate to all of this!

Today Jude and Simon and I were at the dentist for the first time. I felt exactly these things you were talking about. I felt so watched and I felt so much more investment in how well Jude cooperated or didn't cooperate (he did fine) with the check-up than I did with Simon. Why? Because of all the things you wrote about... we were there representing, or at least that is how it feels.

[kelly]

Here's just a great BIG smile and hug for you and Miss B, from another mama who's been exhausted--I know WHAT IT'S LIKE--and as you already know, it really IS good! Kelly