Wednesday, May 28, 2008

No, not feeling it ...

I always notice the looks and stares. They come from everywhere; some quizzical, some with an all knowing smile, and some with looks of pitty. Every once in a while the stares coming from a child or a group of children. It is times like this that I am thankful that Jenelle is not aware of it at all.

When a child asks questions about Jenelle, I always try to answer them to the best of my ability in a way to make the child understand Jenelle. For children under age 5, this could be answered simply by saying "she has a broken brain." But perhaps as Jack gets older, our audience gets older as well. The questions are more in depth. I try to answer them all, but sometimes I'm just not feeling it. Last night was one of those times.

We were watching the Championship Game for the 8 year old Division of Little League. The side lines were packed for this exciting game, and children were running everywhere. I stood with Brett on the side lines while Jenelle quietly sat in her wheelchair doing her usual things; playing with her hair, making noises, and/or batting at the toy piano we brought along. She was very much in her own world and oblivious to the game.

Suddenly, I noticed a group of four younger girls sitting a few feet in front of Jenelle. It was not hard to miss them. They had their backs to the game, and their eyes staring at Jenelle. I thought to myself that they were probably the same age, and probably wondering what was "wrong" with Jenelle. And as they sat, I could see they were gaining confidence, and ready to pounce on me with questions at any second.

Normally, I would welcome questions and answer them best I could, but last night was different. I just wasn't feeling it. I wanted to enjoy the game. And just as they stood up to approach me, I grabbed the handle of Jenelle's wheelchair and walked away. As I did this, they followed me with a quickness in their step. I laughed to myself as I realized I was being chased. Then one little girl screamed out, "Why does she have to sit in that?" I ignored her, and finally found refuge with another parent I knew, and then the girls left us alone.

I felt horrible, but at the same time annoyed. I know their parents wouldn't have answers any better than the ones I would have. But I just wasn't feeling it. Feeling miserable, I confessed to the parent about what I had done, and he smiled and said, "I'll bet you get that a lot, and it's OK not to answer sometimes."

I'm sure this will get harder as the kids get older. And in any other situation I am all for anyone asking questions. But to be bombarded by four, 5 year old girls while trying to enjoy a Little League game was just to much. I will give that lesson some other day. And it's OK. I'm human that way.


Shannon said...

You sure are!!

I feel that way at times myself...usually I welcome questions but every once in awhile I just want a "normal" outing, free of questions and stares...and you're absolutely right...that's ok.

Special Needs Mama said...

Sometimes, if I'm feeling really wicked in a situation like that (because 90% of the time I do engage kids and say, "hey, what do you want to know?") I'll say something really nasty like, "it's not polite to stare." That usually frosts them. Not nice, I know, but still, if you're not feeling it, why not leave them with a lesson too?!

Justamom said...

Whew. I get this one. Sometimes you feel like explaining and other times you don't.

The questions are often being asked directly to Becca now, mostly about her hemiplegia and scars.

Joe's role-playing suggestion (a Marine): Point out that lefty works twice as well to make up for righty, then knock 'em out with it and walk away.

This summer we will practice what she can do and say when she's feeling it and not feeling it.

That will be tricky, as I do not think I have it mastered yet myself.

Ben & Bennie said...

All I can say is exactly. We are human. Of course we want to educate other children but sometimes we just don't feel like it.

Brooklyn said...

Yes! Yes! Yes!
I completely get that feeling. Brooklyn is three now and kids are just starting to realize that she does not walk or talk or eat on her own. It was like before they just chalked it up to she was too young but now it is like overnight THEY ALL want to know what is wrong. I need to work on my "kid friendly version" of Rett Syndrome but sometimes I just don't want to!

Emma the Wheelchair Princess said...

I have been known to convince children that the reason why I use a wheelchair is because I can really walk but I'm just too lazy too. It's pretty hilarious but it either makes people around me laugh lots or think i'm a cruel B**ch. But sometimes I just get to the "i'm trying to have fun here, i will never see you again and it's none of your d**n business" stage and just have to have fun with it.

Anonymous said...

You're not obligated to be constantly gracious and instructive about Janelle's disability. At five, children should be old enough to know it's not polite to stare. As for chasing after you and yelling a rude question? Very impolite. If I caught my kids doing that they'd be made to apologize.
My kids don't have any disabilities but they're curious about those who do. I taught them to say hello to the person they're interested in (usually another child) and to whomever they're with. If the people seem friendly and want to talk, then it's okay to politely ask a question otherwise they should mind their own business.
My boys love technology and they usually want to know how devices that are new to them work. My daughter is more interested in people and what may be "wrong" with them.
I taught them for an early age not to stare. I personally hate being silently gaped at. Little kids don't seem to know any better but adults do it, too.