The Embroidery of Life

He walked up to me while we were at the pool. Actually, I should say that he flopped up to me. You see, the only thing preventing his 6 E (XXwide, completely flat) feet from qualifying as flippers is that there is no webbing between his toes. So, when he walks with wet feet on concrete it sounds really similar to flippers. But, I’m digressing here.

He had his goggles in his hand and a concerned look on his face.

“Hey, J,” I say, looking up from my magazine, “what’s up?” He rarely visits me when we come to the pool. Usually, I see him at the beginning of our visit when I remind him of the pool rules, in the middle of the time when I hunt him down to reapply sunscreen, and at the end when I gather everyone so that we can go home. I have the feeling something has happened.

He launched into it.

J: I saw a big mean pool bully over there.
Me: Oh, really, well, how do you know that he’s a mean bully?
J: The bully called me “weird ass”. The bully said, “get out of the way, WEIRD ASS!” to me.

So, what did I do? I told J that he was great. l told him to go back to swimming but to stay out of the way of the mean bully. I told him not to worry about it and not to be afraid. But I reiterated to him to stay away from mean people.

And so he went back to swimming. I watched him retreat into the water that he loves so much and the words that he had just related to me washed over me like the water that he slipped under. Basically, my first thought was that the bully was right on. J is a little weird ass. He just is. Often, so often, I wish that he wouldn’t behave so oddly. I wish that he would have half a care about how he looks to others. I coach him to “walk quietly, J” and “hands in your pockets, J”. After this first thought had passed, I immediately commenced to hating the bully’s guts. I thought up all sorts of come backs, things I would have said had I been there. The mildest one of these retorts was something along the lines of, “Oh, well spotted, Einstein!” Then these two halves of my mind, the half that agreed with the bully and the half that wanted to beat him up got to stewing.

I’m here to tell you that there are some remarkable, truly wonderful things about autism. That moment that I just had wasn’t one of them.

Sometimes I think about life and how we live it as being like embroidering a huge design. We hope that it’ll be beautiful, in the end, and we keep stitching on it all the time. We know that we’ll make mistakes. Sometimes we’ll have to take stitches out. Sometimes we’ll have to do stitches over and over until the are right. But, we know that for our design to be done well that we must keep trying, straightening out the floss, redoing stitches, unsnarling the knots.

I’m pretty good at knots. You know, that is one of the first self-referential statements that I can remember making in my life. One day, on the kindergarten playground, my best friend Christy had somehow gotten the drawstring around the bottom of her jacket tied in a huge, tight knot. She tearfully asked if I thought I could help. “Oh, sure. You just hang on there a minute and I’ll have it loose,” I said. “Don’t worry, I’m really good with knots.”

So, in the greater scheme of things, I suppose that it is interesting that, for the last decade of my life, I’ve had a gigantic knot that I’ve been working with. That knot has a name. It’s called autism. It is a knot that will never come undone. No matter how hard I work at it — some knots are just there for the duration.

When the knot is yours, though, at some point you come to the realization that this knot is/was meant to be. And you make the decision to not only work around it but to make it a lovely part of your overall design. Is the decision hard? No, not in the end. But the work is.

Do my efforts always succeed? No, many times they do not. Sometimes they do. I try to keep trying, anyway. Are there days that I lose my courage to keep trying to work with this knot? Yes. There have been many days that I wonder why I got such a difficult design. I don’t feel equal to the challenge. I feel like I’ve been given a complicated tapestry to work on when my skills were more on the elementary cross-stitch level.

The days when a bully is unkind to my guileless son are particularly hard. They cause inner turmoil. These days cause problems for my heart, too, because my heart seems to know that this ache will happen many times. Because, like the poor, the bullies are always with you. It kind of breaks my heart a little.

I can’t really put any kind of conclusion on these thoughts. I just wanted to put them out there for any mother of a a child who is not typical. These struggles are somehow easier when you know that others are feeling these feelings and are having these struggles.

But I have lots of hope. I have a great, non-typical family and I have an idea to keep me going, even when it is hard. My idea is that, years from now, when I look back on this part of my life’s design, when I see the stitches that I made, how I kept working with it all even when my heart was breaking, well, those might just be the loveliest parts.

I don’t know. I’ll tell you when I get there. Until then, I’ll keep stitching.