Friday, January 21, 2011

Setting a (bad) example

Do you ever feel pressure to be seen to be COPING, HAPPY and POSITIVE about disability?

Sometimes I feel like if I show frustration with Ashlea that I am betraying her in a way.  Everyone assumes that life with a disabled child is HARD, DIFFICULT and SAD, and I feel like if I let some of my frustration show that I am reinforcing that.

Today at swimming Ashlea was bored.  Who can guess what she does when bored?

Yep, she screams.


Not because she is unhappy.  She screams to entertain herself.  I think she enjoys the reaction it gets.  Today she was in full flight. Sometimes I give in to it and let her get out of the wheelchair because I know it will shut her up - which will make the other patrons thankful, but mostly I am trying to ignore it because if I give in to it I am just reinforcing that screaming works.

So I am trying to ignore the screaming when I hear this kid say to her:
Be Quiet.

Before I had even thought of what I was going to do or say, I had turned around and words were already coming out of my mouth:
Get over it. 
I told a 6 or 7 year old kid to get over it.

I am mortified.  I was so embarrassed by my behaviour that I avoided his mother for the rest of the swimming lesson.  I know I should have apologised, but I was too embarrassed to even speak to her.  Worse still I have got to see them again every week at swimming.

Have you ever responded badly to another child or adult's comment?

See I don't think I'd feel so bad if it was an adult that I had said it to, because adults should be old enough to realise that Ashlea can't help it. But I should not have said that to a kid.

I don't want to appear GRUMPY and SOUR and ANGRY so that people think I am bitter and resentful about having a child with a disability, because I'm not.  Its just that sometimes she drives me a little nuts. And I am definitely not a saint who is patient at all times.

Just as well Miss Ashlea is gorgeous and has these deliciously kissable cheeks.  I'm going to include a picture of the cheeks so that hopefully the last image in your mind when you leave here will be Ashlea's kissableness, rather than my impatience.

I know she has her eyes closed, but just look at those cheeks!


Missy said...

Do you ever feel pressure to be seen to be COPING, HAPPY and POSITIVE about disability?

Um..yes totally.... and I also feel the pressure to be seen as grateful, happy and positive to the EXTENT of our disability.
Yes I am thankful and grateful to the extent of our disability with the things that MM can do but you know sometimes I still simply HATE CP as much as the next.

You are right, her cheeks are delightful!

Sarah said...

Oh yes I quite often feel the pressure!

I have often snapped at other people's children...probably more often than not!

A couple of examples:
A child that pushed Violet, I told to "get lost"!
Children that stare at Violet (this is constant) I quite often abruptly say "It's rude to stare" or simply stare them out!

and that's the nice versions! I am sad to say I have done worse!

Ashlea is totally kissable!

Lacey said...

I think that happens even to parents of "typical" kids. Sometimes we are just cranky and things just come out!

Big brother, Little sister. said...

Alison I love the way you write with your quick witted humour and all. No doubt many have felt the need to snap at a stupid comment independent of disability. I was actually thinking though that perhaps it was not such a bad thing for a kid to say, they were just saying a normal comment to a typical kid in their eyes and if anything all kids will learn social rules no doubt better from peers than listen to their parents :) I am sort of having to field more innappropraite comments from Cooper to others at the minute as he seems to think calling someone a Ladyboy is hilarious.

ferfischer said...

I had to giggle a little bit. Hey, we're all human, and sometimes people should get our responses without the filter, you know?

n0thingbuteverything said...

Sounds like a great response to me :-). You weren't really berating him, just telling him to deal with it. That's life!

And anyway, we all have grumpy, sour, angry moments. I don't think you need to self censor at all.

Gorgeous photo too, as always :-)

ANewKindOfPerfect said...

Ooooh .... I wasn't going to tell anyone this story, but you made me!

Last week Emily was in the ER for seizures, and she was screaming bloody murder while the EEG tech was placing his leads. It was horrendous. Anyway, this homeless guy on a gurney in the ER hallway kept yelling "Can someone shut that baby up" and "Shut the door dammit, that kid is bugging the sh&t out of me". I finally walked out into the hall where his gurney was and said "Are you SERIOUS right now? You have better SHUTTUP or you will be GLAD you are in the ER because I am going to kick your ass!" LMAO

oh man ... how mortifying. ;)

Alison said...

Thanks for all your comments - its good to know I'm not alone. I must say I had to laugh at some of your comments. Bron the idea of Cooper calling people ladyboys is hilarious!! Peanut's Mum - sounds like that guy totally deserved it!!!

Anna said...

Aaah. Yes. The automatic response. Meh. At least you spoke to him in language he would have "got". No point in giving a kid a long winded explanation, sometimes, a short and to the point explanation is what will be the most effective. Does that make sense?

the redhead said...

I have no idea if this is going to be helpful for you, but here's my thought about Ashlea having her eyes closed in photos: she's vision impaired, she relies on her other senses more than other people do. If Ashlea has her eyes closed a fair bit, then it's expected to see her in photos with her eyes closed. I guess what I'm trying to say is that why should you expect Ashlea to have her eyes open in photos if she spends a fair amount of time with them closed in her day-to-day life?