Tuesday, May 23, 2006

Of Mice, Men, and Tears.

I went through childhood with a taste for pathos. Sure, I liked skipping rocks and telling knock-knock jokes as much as the next kid, but I'd take a good deathbed drama over playing house any day of the week. If you were sitting on the edge of the bed, trying to rescue me from drowning in the frigid sea below, my hand would always just miss your grasping fingers, and I would sink gracefully onto the carpet and silently drown. If the game of the day involved an imaginary hospital, my case was usually fatal. And if I was the brave Army nurse, struggling valiantly through the driving rain and the roar of the battlefield to reach you in your hour of need, you'd better hope your prayers were said and your life insurance policy was current, because there wasn't much hope for you.

This might explain why at the tender age of seven, I staged a full funeral service for the neighbor children over a mouse we found dead in the field. It looked so pathetic and sad, its soft brown fur unrumpled by predators, simply lying there in the grass. I dug a small hole, gently lined it with leaves, and gathered the children around for a moment of silence and a few well-chosen words of comfort to the grieving. We committed the mouse to its eternal resting place, and tearfully covered it with dirt.

My mother, needless to say, was not amused. As a parent myself, I can see why she was not enthusiastic about her children playing with germ-infested dead animals, and why she was not appeased by my explanation that I had picked it up with a piece of plastic and not with my bare hands. (I hadn't learned the word "Duh" yet, but it was implied.) She was right, and I didn't preside over any more funerals after that. Growing up on five acres next door to a farm, I learned quickly that it was simply not possible to grieve everything that died, especially if you might find yourself eating it for dinner.

I grew up a little and started thinking more about boys than playacting, but the tender heart remained. On my first visit to a neighbor lady's house, I was astounded to see that the wall between her kitchen and living room consisted largely of a breathtaking saltwater aquarium. The tropical fish were beautiful, but even at my age, I could recognize that the design of the fishtank was a cut above average. I commented on it, and the lady replied with a slight wince that her ex-husband had built it. I was young, and knew very few divorced people, so I instinctively offered my condolences. She responded quickly, "Oh no, it was a good thing." Unshakeable in my naive conviction that no one could be all that bad, I earnestly answered, "It's always sad when something dies." She made a polite, noncommital response, and the subject was changed.

In retrospect, I realize that the sight of those fish must have twisted a knife in her heart every time she walked into the room, if the pain was still so fresh that she would mention it to a middle-schooler. I can now hear the unspoken thoughts simmering beneath her courtesy: "It might always be sad when something dies, but I bet the good Lord himself would make an exception for this guy." She may have been right, and I don't presume to make commentary on people's divorces any more.

I am grown up now, and I know that lots of things die. Friendships unravel. Good jobs end. Churches split. Hopes fade. Dreams melt in the face of reality. And with the arrival of adulthood, I found myself pretending that it doesn't matter. I started to believe that since everything ends, the little things aren't worth the energy of grief.

I do not say that we should strive to emulate those cultures in which intense emotions are broadcast on a wide frequency, joy and grief and passion expressed at a volume that rattles the windows and scares the livestock. Our culture is not one that encourages widows to throw themselves into the grave, and this is not a bad thing. I am not cut out for public displays of much of anything, and I make no apology for it -- I don't always wish to share my innermost thoughts, and I don't really want to hear those of the people at the next table, either.

But in the process of dealing with what appears to be a small grief, the diagnosis of my son's autism, I wonder if we have gone too far the other way. I'm guilty of it myself. We want things to be hopeful. We want people to get better. We like happy endings. All too often, though, we skip to the end, because all of the pesky intermediate stuff (like suspense and plot and character development) is too hard to deal with. Our first response to the news of a relative's diabetes is to say quickly that we are sorry, and immediately follow it up with a litany of wonderful treatments we read about on the internet. We hear that a friend is struggling with depression, and we tell her that it's so great that there are such good medications available now. We hear that an acquaintance has early-stage breast cancer, and we exclaim, "Oh, but if you have to have cancer, that's the kind you want, because almost nobody dies of that any more!"

But it is not good. You do not want cancer. You do not want depression. And if your child is autistic, the fact that he is very high-functioning doesn't mean it is happy news. It is still bad news, and I cringe to think of how many times I have deprived someone of the conversation they meant to have with me by forcing my optimism on them. There is such a tiny gap between "You should be happy about all the good treatments available" and the simpler but far more devastating, "You should be happy."

I think, sometimes, that my Celtic forebears had a valid point when dealing with grief. You laid out the dead in their finest clothes, mourned them loudly, and buried them. Then you got roaring drunk, slept it off, and picked up the plow in the morning. I don't necessarily recommend good Irish whiskey as a wise approach to grief, but I understand the principle. We need that time, those hours and days when mundane reality is briefly suspended and we are allowed to rage against the dying of the light. Yes, the sun will come up in the morning. But tonight it is dark, and to pretend otherwise is not brave, it is foolish.

Mice die every day. So do marriages. People get diseases and die in accidents and suffer unimaginable horrors every hour of the day, and if I try to grieve them all, I will have no time for living. But today, in my own small world, I will cry over the loss of a few small hopes and a few small dreams. And tomorrow, or maybe the next day, I will pat smooth the broken soil, watch the sun come up, and kiss my little boy's forehead as we start the day.

Friday, May 19, 2006

This Lane Ends: Merge Right.

The last two years with Peter have felt like a drive down an unfamiliar country road. There are potholes and patches of gravel, the turns aren't marked very well, and the weirdest things show up in the middle of the road now and then, but the view is absolutely incredible, with unexpected vistas unfolding at every bend. I've been going along for quite a while, sticking with the main road when I wasn't sure which turn to take, enjoying the scenery, and hoping desperately that a recognizable street sign would show up pretty soon.

The street sign arrived last Friday in the form of a gentle, kindhearted woman sitting comfortably on the floor of my family room, bare legs tucked under her summer dress as she built a Lincoln Log house with my son. Maija is the autism specialist at Peter's special ed preschool, and she had come to visit with me and observe Peter in his home environment. After a long interview at my kitchen table that felt more like a chat with an old friend than a formal assessment, she settled down on the carpet to get a ground-level view of life with Peter. She played with him in that curiously organized fashion used by good educators everywhere, each interaction instructing the child or the teacher, sometimes both.

After a while, Maija set her paperwork aside and said that she had one last question. I was unprepared for both the question and for my emotional response to it. It was simple: "Do you think he's autistic?" I was startled to realize that with all the legal proscriptions surrounding the issue of autism within the state-run special education services, no one more official than my best friend had ever asked me that question. I thought through all my research, my discussions with other mothers, and my gut-level instinct. I started to respond. I stopped, swallowed, and tried again. It was a simple question, so I answered it simply: "Yes. High-functioning autistic, but yes, I think he is."

I have never in my life wanted so badly to lie. I wanted to say, "No, I think he's a little speech-delayed, and he's definitely got his dad's ability to focus on things, and maybe some of his mom's tendency to repeat herself, but he'll grow out of it, I'm sure of it." It would have only put off the inevitable, though, and only for about ten seconds. She knew it, and I knew it. When Michael and I met with the rest of his team a few days later, it was obvious that they knew it too.

It turns out that the word "autism" opens a floodgate of response from nearly everyone who hears it. I have been deluged with websites, titles of books, phone numbers, e-mail addresses, and random scraps of advice from every direction. All of it is offered in love and kindness, and the information I've had the energy to pursue appears to be useful and hopeful. Peter is fortunate to have been diagnosed at a time when there is more public awareness of autism than ever before, with the research and support that comes with that attention. I will not be one of the pioneers, the brave mothers of the last century who insisted that their children did not belong in institutions, who battered down doors that their sons and daughters needed to walk through, and held their hands along the way.

The road is clear, and there are detailed maps for every possible route, detour, speed bump, and item of interest along the way. But I have grown accustomed to my quiet country byways, and I don't know quite how to merge from my dirt road to the 65 mph zone of the road ahead. I have my directions; what I need now is courage.