Saturday, June 28, 2008

Free to be Me, at the Spree

Well, it was Spree time in dear old Livonia, MI this past week and weekend. The Spree is always highly anticipated by Bill and I, we've had a lot of fun there over the years. He being a Livonia native, grew up with the Spree, so it brings out his little boy side a bit. The Spree is a large festival basically that celebrates the city of Livonia's birthday every year. They have a midway full of rides for the young, and young at heart. Games and food of course are part of it too. Casey has a great time every year as well. He especially enjoys the musical acts they have on the "main" stage at night. Mom and Dad can sit back with a cold beverage while Casey dances. The dancing usually looks something like this (note: Casey is the white shirted fellow who walks "rhythmically, and then suddenly boogies)

He has no fear about getting out there in front a great deal of people and tripping the light fantastic. Most of his moves haven't changed for a long time. It's great excercise for him, and he comes back often to refresh himself.

This year, something hit me during our time at the Spree. Our little boy is still a little boy in so many ways, but it seems his physicality is beginning to draw so much more attention to his Autism.

Casey is tall for his age, about 5ft, 100 plus lbs. His gait is unusual, always has been but seems to be more pronounced since he's hit the 5ft mark. He still stims as he walks, arms bent, stretched in front of him, moving to some internal beat. He claps a lot still, usually out of excitement over something he sees or is thinking about. He still holds his ears, sometimes to block out sounds he doesn't care for, but mostly so he can hear himself talk, which is something he does, alot, to himself.

He's done all these things for years, but I notice people staring a lot more now, which is something I wrote a whole blog entry about. But I can't say that I blame them, they're probably wondering why this big kid is doing what he is doing. And his dancing in front of the people is becoming something I've considered stopping in the years ahead. I really don't want people wondering why this giant kid is up there (who knows how old they think he is ) dancing like he is, holding his ears. Worse yet, are they looking at him going "Oh, he must be mentally challenged, God bless him!". Doubt it.

The "screw you" side of me says who cares, he's not hurting anyone, and he clearly doesn't care what people think (ah, what a freedom he's blessed with). On the other hand I want people to not think of him as "challenged" or "disabled" either, or simply "weird".

Maybe, short of putting him in a straight jacket when we go out, and roping him to a chair if there is any music to be danced to, I should just throw caution to the wind, let people have their thoughts, and as long as Casey isn't hurting anyone, and no one is hurting him that we know of, enjoy the show. As for the walking, well geeze, who knows! Guys gotta walk right? Maybe Bill and I will take on his style! There's power in numbers.

Now for all the rides that say they are only for kids that are 54 inches, well, that's another story!


Anonymous said...

I try not to notice when people stare. I grew up with stares whenever me and my sister were together since she is physically disabled. I guess I have learned to totally not notice. J will notice more than me. M tends to blend in most of the time until a melt down occurs or if she is talking really loud, which she tends to do when we go out to eat.

Thanks so much for putting me on your blog roll...and among such wonderful fellow bloggers!

Ugh. My dog has invaded. I must pet and then come back to watch your video. typing with one hand now...

Casdok said...

People can be very thoughtless cant they. The lastest thing i find the hardest to endure is teenagers filming my son on their mobile phones.
But as im not going to hide my son away or use a straight jacket (!!) i hold my head high. Not always easy though!

Lets hope people like Josh help make more of a difference. :)

EC said...

Hi Bonnie, I just found your blog via Marla.

In my experience (sadly) some people will judge anyway, whatever you do.

I reckon let Casey dance. Know that many of us out here in the world are not thinking "weird".

Instead we're thinking, sweet diversity of life & that there should be more dancing.

kristina said...

Charlie is just about the same in height and weight, many of the same stim-things in public too and "physicality" is a good way to put what draws attention to Charlie. He just does not move his body as most kids his age do---that "internal beat."

Yes, power in numbers, and strength.

Bobbi said...

Just checked out your blog today. Love it! I kind of think about when my son is older too and the things he does and what it will look like. He can get away with it now, but will people stare when he's older or will he have outgrown most of it. I guess we all have those thoughts. Glad he likes the music. My son hates it.

Anonymous said...

I'm new to your blog and I wanted to tell you I like your attitude.
I used to teach autistic teens back when I was fresh out of college so I know about the stares. We'd go on a field trip and there would be my students - these big kids - making noises or repeating the same phrase over and over or flapping or whatever and the gawkers would gawk. Sometimes they'd point and gawk. A few times people would walk right up to us, point at one of my students and ask, "What's the matter with him?"
The kids may have looked like they didn't hear or see the stares but they did. That increased their anxiety about going out and THAT increased the noises and the flapping and the endless repetition.
I say let your boy dance if the music moves him. Gawkers will still gawk. They gawk at NT kids. My son is 6 feet 6 inches, a freshman in college, and recently we noticed an old guy staring at him and say to his companion, "How tall do you think THAT ONE is?
Like my son was part of a carnival midway - See The Amazing Tall Kid!"
Naturally my son now walks hunched over, like he's trying to shrink. People can be thoughtless and cruel. I say screw 'em or just gawk right back.