We all want to fit in. We want our abilities to shine, our laughter to spill forth and our words to be eloquent. For some, it may come naturally, others find it more of a struggle. But for a child with a disability, it can seem almost impossible.
For many, their laughter may be hindered, their words distorted and their abilities trapped in a mind that refuses to cooperate. And I've spent a lot of time trying to get Beth to fit in to a world that just doesn't understand. A world that has never walked in her shoes. I have days when I'm ashamed of myself.
It's hard for me to admit this to you, but sometimes I get really embarrassed when Beth acts silly in public. She'll flap her arms with excitement or dance as she sings a song. She's been known to talk to her imaginary friend as we walk through the mall. I don't want her to draw attention to herself. I don't want people to stare more than they already do.
It was okay for her sisters to act silly. They were just being kids. But with Beth, I tend to blame her inappropriate behavior on her disability. People would be staring so I'd stop her and tell her that her behavior wasn't right. As she's gotten older, she picks out her own clothes and often wears the same thing two days in a row. I (used to) make her change. It caused so many fights and so many tears! Let alone causing the entire family to wait as she moved at a snails pace, prolonging the painful act of obedience.
I let society decide if my daughters behavior was right or wrong. I let my fear of what people might think, determine how I interacted with my child. I would be embarrassed by her actions, then feel ashamed that I felt embarrassed!
Am I the only one who has experienced this?
2 comments:
Just today I had the twins at a birthday party - it was at an indoor soccer venue - now Hannah LOVES the idea of soccer and running - she was racing up and down with her mouth wide open - and clearly looking like the only 'special needs' child on the court. The only time she got the ball was when the coach who was great got her to kick it in from the side (although her brother did kick it to her at least once that I saw). Anyway - I was conscious that unlike the other parents I was always keeping an eye on the court but trying to look like I wasn't IYKWIM. As I was listening to another parent I saw Han collide with a bigger boy on the court, I paused not wanting to seem over anxious by rushing over to her - the coach was looking after her beautifully. She calmed down but still walked off the courts and over to me witha tear in her eye. As I picked her up and cuddled her I saw another little boy start walking off the court crying as his mother walked towards him. It reminded me that too often I see things through my need for her to fit in - to be seen as 'normal' - because I want everyone to be comfortable around her that to my shame I can lose sight of the fact that lots of her behaviour (and her needs) are perfectly normal for a 5 year old. So yes I do know exactly what you mean.
No, you're not alone in this. I'm getting a little looser now that Hannah's older, but I still encourage her to "be her best" when we are out and about. When she was little we called her "The Ambassador"--we made sure that she was dressed properly and her face was clean. We knew she couldn't get away with putting stripes and plaids on like her siblings did when they were four (but she wanted to do it when she was 8...). If she did something "kid-like", people would assume it's because she "had a disability", not just because she was a kid. It drove me nuts.
Now she is starting to take pride in her appearance, and wants to be more independent. I let her wear the dorky outfit if she feels it's beautiful.
We talk about whether it's appropriate to do self-talk around other people. She usually can reign it in, but sometimes not.
What I have been noticing is that her (typical) friends who know and love her, don't care at all what she's wearing or saying--they just plain like her. Some of her hand flapping or out-of-tune singing makes them love her even more.
I think it was Joyce (from Class of 2008) who said that she raised Sarah to live with "the natives." The natives being the typical population. It's hard work to always have to keep up--keeping up with appearances, and also keeping up the speed.
I guess what bugs me the most is that people assume too much-they don't know her, but they think they do.
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