These Are The Days

Sean had a good first week at school. I don’t want to get too excited. He often has these “honeymoon” phases -- everything is new and fresh. But somehow, picking him up from school, his shirt collars poking near his ears, a backpack slung over his growing shoulders and his freckled arms outstretched toward me, I felt that maybe this time might be different. He seemed happy and even content -- a boy that I had not seen in a long time.

The other night I was talking to a very close person to me, filling her in the boys week at school. I told her about Sean, about how he seemed to be adjusting to his new school quite well. But then I got overwhelmed with sadness and heard my voice crack. For some reason I couldn’t help but think (and say to her),

“What if these are the best days I am going to have with Sean? What if this is as good as it gets?”

Then I sobbed. I know it is foolish to try to look into the future -- there is no glassy orb of what lies ahead. But sometimes I have these thoughts and they weigh me down -- cut me at the knees and I’m rendered completely helpless and immobile.

She reminded me that all I have is today. I have no control of the future. And yet, sometimes I forgot that raising a child with autism probably won’t get “easier”. All the work and sweat doesn’t necessary pay-off. My husband reminds me that sometimes we just get better with dealing with this disorder and managing our expectations.

There was a time that I thought Sean would outgrow a lot of his autistic tendencies. He would grow older and begin to read cues better and respond more appropriately. Life would be easier. The truth is, he has improved greatly but he continues to get older and he appears more different as each day passes.

When Sean was three or four or five others just thought he was “acting out” or “being a brat”. But now that he is eight, most people realize that there is more to it and that something is amiss. In some ways, I am glad -- so tired of the looks and comments and the eye-rolls. And in other ways, I feel a great amount of sadness as I am starting to see my son through the eyes of others.

We are so used to Sean’s quirks and behaviors that we forget how truly different he is. I sometimes see how other children look at him -- the younger ones find him fascinating, they smile at him and try to imitate. His peers and children older than him sometimes look at him oddly, strangely -- they don’t know what to make of him. Some laugh at him while others seem to avoid him completely. I don’t know if this all registers with Sean. I hope, for the most part, it doesn’t make him feel bad about himself. I don’t think it does but sometimes if I laugh at something that he says because I think he’s being funny he will stop, his eyes narrowing and say,

“Don’t laugh at me.”

I will explain that I am not laughing at him but at how clever or funny he is. Still, I don’t know if knows the difference.

My very dear friend is right -- all I have is today, the here and now and it’s futile to try to predict the future or imagine what life will be like down the road. Maybe right now are the best days with Sean. Maybe the best days are ahead. Maybe it will be much more difficult down the road and maybe it won’t. Nobody really knows. What I know for certain is that I want to savor the good moments, the bricks of the school shining in late summer heat and the smiling boy running toward me and swimming in my arms.