Monday, September 24, 2012

I know you don't get it - and that's okay

I do try to stay away from controversy and drama. I'm not interested in political conversation. I think most people come into controversial discussions with their minds already made up, and with the goal of changing everyone else over to their viewpoint. I don't like to get into those types of conversations because I do admit I might be wrong - and I don't like being the only one who gives in a little.

I will listen and attempt to understand the other side, as long as you do, too.

So I'm not sure how to explain how I got involved in a Facebook discussion about families who live with autism and how it's not like life with only neurotypical children who meet all their developmental milestones.

What happened was, someone made a comment that said showed clearly that he has no idea that there are different kinds of kids out there, and not all of them are just like his.

And I know this happens all over the world on a daily basis. Last week I listened to a speaker talk about believing in the potential of our children. Not special needs children - all children. And during the discussion, she pointed out how of course all children had the potential to grow up and drive cars, go to college, get married. Such a typical comment to be made by someone who has never know anything but typical children. When she said that, I avoided eye contact, and she lost a little credibility with me. I know she was talking about typical children. I know she understands how some children aren't like others.

It was just - when people do that - make generalizations that exclude people with disabilities - it's thoughtless. I know they don't mean any harm and it's nothing personal and I try to ignore it. But it makes me feel a little excluded. Like I'm not really a part of the crowd she's talking to.

We can't make everyone in the whole world understand HOW living with someone with Fragile X or autism is different. And I'm sure I've said things that came across as thoughtless and hurtful to people for various reasons. People whose personal situations I didn't know anything about.

On The View one morning last year, they were joking about how kids are always making demands on their moms. Whoopi Goldberg (who I love by the way) commented that her 30-year-old daughter still calls her and needs things.

And they all laughed and nodded, knowingly. Those darn kids that refuse to grow up! HaHaHa!

What if your kids really didn't grow up? What if your daughter stayed a cute, helpless, and demanding baby for all her life? What if she really did require the care a toddler requires, for the rest of your life, and well beyond the time you are able to provide that care?

What if you really did have a 30-year-old toddler?

How would you like them apples?

I have friends who bring their kids to the gym daycare in part so they can exercise, and partly just because it gives them a little time away from the kids. And that's perfectly understandable. I totally get why you need to get away from the constant demands and complaints kids have.

Well what if you were frustrated and tired of the constant and nonstop demands and complaints, but you couldn't just drop your kids off there? Even if you wanted to legitimately work out. Your kids can't stay at the gym daycare, because the gym daycare workers don't have the skills necessary to care for your child.

We used to belong to a gym. It had a baby/toddler room, and a preschooler/young-child room, and a bigger-kid/activity room. They don't have a bigger-kid-who-still-acts-like-a-baby/toddler room. My boys don't fit into any of the categories they have there.

I know that I could have asked them to come up with the staff to care for my sons, so I could leave them in the childcare and go work out. It just seemed like more effort than it was worth. I'd have had to train their staff, and even then I'd have spent the whole time I was exercising, worrying that they were okay. It's useless to tell me not to worry. I can't just turn it off. And it would have been stressful for the boys, too, which I would have paid for, for probably the rest of the day. It was just a hill I decided not to climb.

Interesting way to look at it, since we're talking about exercise.

I might have rambled and strayed from my original point here. I think it might be this: is it reasonable to expect this world to make room for my kids, and for people not to make comments and generalizations that so obviously exclude people with disabilities? Should I be speaking up every time someone says something that makes me feel left out of the group? Should I have worked harder to find a place for my boys at the gym daycare?

The problem with speaking up is, it's hard. It's embarrassing. I might cry. I'll make other people uncomfortable.

I know I probably SHOULD speak up. I SHOULD train the gym staff how to deal with kids who don't act like other kids. I should be making this world more understanding and accepting and aware of people with disabilities, every time I get the opportunity. I just wish I could get through it without so much emotion.

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