Saturday, August 23, 2008

Things that hurt when you're here...

1. Calling about a vacation home rental. When telling the (very nice) woman that you want a place with room for your five-year-old and almost two-year-old to roam, she says 'This house is perfect for your five-year-old to ride his bike.'

My five-year-old can't ride a bike. He can't even ride a tricycle.

2. Filling out the 'appropriate' paperwork at school for your child who though he will be considered a kindergartener is going into a special day program with other children who have special needs. The receptionist tells you 'We give out this packet to all parents of kindergarteners and don't have one specificially for M's class.'

This packet asks things like, check which of these your child can do: Tie shoes. Use the toilet unaccompanied. Write his/her name. I can't remember what else, but I did not check off any of these.

3. You see this list for back to school/meet the teacher night. All of the typical grades meet during the first week of school. The special needs class meets one night during the second week.

I want to point out that I don't fault that woman at the vacation rentals place. She obviously had no way of knowing about M's challenges. But the school...isn't that the place where kids (because of the IDEA legislation and others) are supposed to get a fair and equal education? Would it be that hard for them to make another packet for the special day kids? Can't we go to back to school night with all the other children? It's things like this that just solidify society's views that my child is different. That my child isn't doing what 'normal' kids are doing. And that hurts.

I also want to say here that I am not an overly p.c. person. I think we could certainly stand a kinder, gentler society, but I try hard not to take my own situation and apply it to everyone else. If you don't live this, you may not know. And I am not one to intentionally make you squirm because this isn't your life on a daily basis like it is mine. (but don't get me wrong...if you give my kid the 'he's weird' look, I'll be the first to knock you down a notch and tell you he's not weird...he has autism)

But this leads to a recent discussion on a Mom's board I am on. One mother (I believe she has a child with special needs) sent out a letter that her friend had written in protest of the new Ben Stiller movie "Tropic Thunder." You may have already heard about this. Anyhow, there is apparently a character who is 'simple,' etc. and the 'r' word is used to refer to him quite frequently. I'm not going to go into the full spiel about all this, but to say that even though I absolutely, posi-freaking-tutely do not like this word and don't think people should use it, I did not respond to this post with my own thoughts. I had totally wanted to see this movie before I learned about all this hoopla. Now I am not quite certain how I feel about viewing it and that is sort of symbolic of how I feel about people who use that word. Again, if you don't live this life, sometimes you just don't realize. I think for the most part, people who use the 'r' word don't realize just how painful that could be to someone who has a child with challenges, and I don't necessarily think they're thinking about that when they use it. I can remember being in the 8th grade and playing on the tennis team. Our coach was this wonderfully patient special education teacher named Miss Moll. We were doing drills where we had to run the lines of the tennis court and these two guys I was friends with were egging each other on as they ran. One said to the other, 'The Olympics, Scott. The Olympics!' And Scott replied, 'Yeah, maybe the special Olympics.' And we all laughed hysterically until we looked over and saw how hurt Miss Moll was that they'd said that and that we'd all laughed. We all felt horribly guilty when she gently explained why that wasn't a nice thing to joke about. This memory stuck with me way before M was born. Funny how that is.
It's the same with the short bus reference. I'm certain I made that joke as a kid at least once. But now that my kid would be one of the ones riding the short bus if we didn't drive him ourselves...well, I realize that it's a rather shitty reference.

So I guess the point of this isn't me trying to demand that you take into consideration every single word or action you use that may offend or hurt a specific group (because then, seriously, we'd be offending someone constantly), but sometimes there are some pretty obvious ones that you should take into account, you know?

And finally, let me shout out that I do not, by any means, want any of you to censor what you say to me for fear of hurting my feelings. It takes a lot to offend me, and I hope you all know that :)

*Edit to post, 8/25* Because truth is best, I felt it necessary to amend this post today after learning that we are not alone next week for back to school night as I first had thought. We share back to school night with the 4th and 5th grade classes, though (or and?) we got a big ol' * by 'special day class' and they didn't :)


Eliza said...

My seven-year-old can't ride a bike. I know what you mean. In the day-to-day you just look at them as your CHILD, but when someone unknowingly says something that reminds you that "whoops, my kid is doing his/her own thing" and you remember how different your child and his/her abilities are from what people automatically four-year-old is starting a county-funded early-intervention preschool, but has to be fully potty-trained. We're getting to where the kid is pretty good at going if you pull the pants down and plunk the kid on the pot, but pulling the pants down unassisted? WIPING? God. I have a feeling we'll "fail" out of the class and be seeing our Educational and Speech Therapists at home until kindergarten when they HAVE to find a place for the kid to be. Sigh.

sarah said...

i feel for you and all the families that have to deal with the insensitivities and ignorance of society. I think by being so honest, open, and doing things like blogging you are doing more than your share to make this world a kinder, more gentle, more accepting world.
as i have said so many times, miles is lucky to have you as his constant advocate.

T-Bone said...

Hugs. Lots of hugs for you and our My-My.

little miss mel said...

My gal friend has a daughter with downs. She recently was talking about her riding the bus. She said herself, "well, it is the short bus, but a bus no less." I guess her policy is to be upfront, honest, and a tad witty.

Just thought I'd share. :)

I love M. Can't wait to hear what he learns in school!!

For the rest of those people, well, they can go suck an egg.

Debbie said...

Ahh, yes, Miss Mel...humor does help in these situations. Without that, I'd be crying in my beer every day. (rather than every other day-haha)