Carnivàle!

I wanted to stop by and actually write about something pleasant for a change. I can be lighthearted! It happens...

Right now the state fair is in full swing, and since it's located about five minutes from our house, we decided we'd give it a shot...the whole family, too, not just David or myself with Kerry. We got ourselves ready, literally and figuratively, grabbed some McD's for Stephen, and then headed over to the fairgrounds. We didn't talk about it, but I'm sure we were all wondering if this was going to work.

We walked in, and the lights and sounds were as chaotic as you'd imagine. Stephen immediately assumed the "fingers in ears" position, but as we watched, a smile broke out on his face. He was drawn to the lights and the motion of the the rides. He stood for a while and watched a little kiddie ride - boats going in a circle, and seemed intrigued. David took Kerry to meet up with a friend, and so Stephen and I watched the boats. We waited for it to stop, I handed over his tickets, and explained to the lady running the ride that he has autism - amazingly she knew what I meant (whaddya know?) and assured me that she'd stop the ride immediately if he had trouble. So, I popped him into a boat and he settled down. He spent a few turns looking unsure, and then, he GOT it. His smile was huge and I could hear him laughing...bingo!



After a bit more walking around, David and Kerry joined us and we took turns walking with Stephen and watching Kerry on rides. Stephen watched and laughed and danced, having a great time. After a while Stephen decided to try another ride...a sort of bumpy-caterpillar-going-in-a-circle ride. Here he is before the ride started, a bit unsure but still happy enough:



But once it got started, the laughter began again. I watched him, bumping around, flapping his hands, and laughing in total delight, and, instead of taking a picture to show you how much fun he was having, I cried. I stood there in the midst of the festive crowd, and cried. David saw me and put his hand on my shoulder. Kerry's friend and his mom were there, and I saw her watching me. It took me a minute to explain, but just being able to put Stephen on a ride like that, by himself, and see him enjoy himself...it got to me. Not only because he was having fun like any kid, but because it hit me how rare those moments are. He's a big 8 1/2 year old boy who should be chasing his big brother and wanting to do everything Kerry does...and instead, because of this damnable DISORDER, he is on the kiddie rides with the 3 year olds. That fact, my friends, inspires what I can only call a bittersweet joy. I think you understand what I'm saying. I'm overjoyed that he has come so far, and angry as hell that he isn't able to do more.

Yet.

Today we were back to business as usual - getting up and getting ready for school. Things have been going well in that regard for the past few weeks. Today he got up early, before I had the lights on, so we had to fight the Battle of Light and Dark again. It took a good 30 minutes of "No, not 'off.' 'ON,' Stephen!" before he calmed down, just in time to get his bag and get to the car.

Ahh, well. Such is life. I'm savoring the memory of a little boy in a red striped shirt, spinning and bumping in a yellow caterpillar, his laughter spilling out into the night.

What have we become?

I had a disheartening experience over the weekend. I’m sitting here at work, struggling to stay composed, because I feel so very disillusioned with people in general.

On Saturday I took Stephen with me to do some errands, which for the most part usually turns out well. We went to the first stop, Sam’s Warehouse Club, (which I had prepared him for with some pictures before we left home) but he balked at going into the store. I stood inside, calling for him to come in, and finally he walked just inside the automatic doors. There was a scramble for shopping carts – it was chaotic and loud, and eventually I had to elbow my way in just to get my mitts on a cart. Another lady had squeaked around me and gotten her cart, and as I was turning to get Stephen, I heard her say, “Move. MOVE!” in a rude and insistent way. In slow motion I looked to see that she was talking to Stephen, and he stood there resolutely, fingers in his ears and planted in one spot. I put my hand on her shoulder, turned her toward me, and said, “Hey! He has autism!”

“How was I supposed to know that?” she fired back, and pushed her cart into the store.

I was seething. Another lady who had seen this interaction came over to me as I was struggling to lift Stephen into the cart. Usually I can manage but I was shaking and emotional. This lady helped me get Stephen settled as I muttered about “idiots” and “people who make stupid assumptions.” She looked at me kindly and said, “Yes, they sure do.”

Tears still flowing, I pushed Stephen into the store, and then I stopped. Was I going to just let this go? No. I think not. I began to look for the woman who had acted so harshly toward my child. Up and down the aisles we went, incoherent thoughts bubbling through my head. I’m sure I looked unhinged. Finally I spotted her, and, my heart pounding, I approached her. To my best recollection, it went something like this:

“Ma’am?”

She turned to look at me, recognizing me at once.

“You said you didn’t know my son had autism…well, let me tell you that you can’t go around making assumptions about children…how can you DO that?” I was crying full force already.

She looked around nervously and said, “Yes, well…I admit I thought he was just another errant child…”

A solid thought formed and hit me like a ton of bricks. “You know what?” I said, “Even if you had no idea he had autism, how dare you talk to a CHILD like that? Any child?”

“Well…umm…”

“And ma’am? I am having a HARD time with him this morning, and people like YOU don’t make things any easier! You have NO idea what this is like!” More tears, and in my peripheral vision I can see other people listening to me as they pretend to shop for 50 gallon drums of mayo or whatever. She ducked her head and muttered something, then she looked at me. I’m sure I made a great impression – dressed in my Saturday running shorts and T-shirt, ball cap on my head, and tears running down my face. She said, “I’m sorry. I feel the pain you’re feeling.”

I said, “Please, don’t ever assume that a child who seems to be badly behaved is only that…at least till you step back and take a look at the situation,” and Stephen and I went on our way.

The lady who had helped me when we first entered the store walked up – she had been there the whole time. She patted me on the shoulder and said, “Good for you, hon” and walked away.

The rest of the shopping excursion went pretty well, but I was shaken. When we got back to the car I had to sit there for a few minutes before I could drive. The most painful part of this whole experience was the sheer SPEED at which this woman made her assumptions and acted on them. Put the autism factor aside…the fact that an adult would so quickly turn on a child for (gasp!) being in the way of her shopping cart quite frankly broke my heart. This isn’t an isolated incident, either – we’ve all been the recipient of quick anger, have we not? I’m not sure how long ago the phrase “road rage” was coined, but it’s that kind of thing that happens ever more frequently in this culture of ours that frightens me and shakes the very core of my being.

As fate would have it, I’m in the midst of a re-read of the “Mitford” series by Jan Karon. These books are rare in that they have strong religious themes, but so gently and beautifully woven into the story that they comfort me rather than irritate me. If you’ve read them, you know that the little town of Mitford is a Mayberry for the 21st century – in short, the community interacts, cares for, loves, and laughs with each other. I get caught up in that dream when reading – it all seems so RIGHT, and so possible. Do the right thing because it’s the right thing to do. Care for others and they will care for you. Live! Enjoy nature. Enjoy food and wine and poetry and music. That lovely song was still playing in my head when Stephen and I drove up to Sam’s Club on Saturday. The volume went down a bit when he was cranky, but it was playing in the background nonetheless. When the INCIDENT happened, the phonograph needle screeched across the album, and then there was silence, cold and uncaring.

I am heartbroken at the seeming lack of real community. I have searched for it for so long and cannot find it, not in a real, tangible way. I want neighbors who drop by for coffee. I want people who offer help when needed, and who ask for help in return. I want people who KNOW me, who care and know about my life, and whose lives I can know and participate in. I want to stretch, to grow, to learn. I have listened to others decry the age of technology, of instant gratification, of social isolation – and now, I understand. While the computer I use to type these very words is a part of the progress that has certainly benefitted us, what have we given up as payment for these conveniences? We have a million channels on TV, and such a scarcity of quality programming that it makes me sick. Remember when there were four channels, and if nothing was on, we turned it OFF? Remember when you read the newspaper or waited for Walter Cronkite to tell you the news? Now it’s on 24/7, and there’s a struggle to fill every minute with something, whether newsworthy or not.

I know what you're thinking. I sound like one of the old people I used to listen to as they waxed poetic about golden days…and I’m sure that my ten year old son would roll his eyes just as I’m sure I did at his age. Maybe this realization comes only with age. Maybe it takes living a while to figure out what’s really important, I don’t know. I only know that I’m tired of feeling that I live in a glass box. I’ve tried to reach out and more often than not my efforts fall flat. Today I feel like it’s always going to be this way…that my little family might as well be on a desert island. Yes, we have each other, but everyone needs more than that...

In my heart, though, I know myself well enough to know that I can’t give up, not really. I feel that I have a whole world inside me, just waiting for the right people to come along, who recognize a kindred spirit and who want the same things that I want, that my family wants. Until then, I will just keep hoping.

And probably complaining…