Saturday Sept. 24, 2005. Saturday morning Dave and Keli and Karis and Ben and I pile into their van and head for Crater Lake. Traveling with Ben is far easier than it used to be, apparently, but partly this is because they are working from long experience. One of them tells me, the secret is to always have one more thing in reserve, and they have a whole bag of tricks ready.
Ben’s game boy keeps him happy for hours at a time. (Because of the noises the game boy makes, they humorously refer to it as the GDGB.) And there is the miniature TV (it plugs into the car’s cigarette lighter) that plays DVDs that both Ben and Karis like to watch. Those are the two main tricks that stick in my mind. I know there are others. Karis, bless her, amuses herself.
We stop at the same restaurant that Michael and I had stopped at a few days before. Keli and Dave are on the alert, and when other distractions fail, the GDGB comes riding to the rescue yet again. (I too am getting to know the tunes.) When Ben gets a little fractious, a little impatient, Dave is able to walk around with him outside, and they talk to him and remind him that he must wait, and Ben is good. Keli and Dave are sensitive to the possible reactions of others, of course – how could they not be after so much time? – but I don’t think anyone is particularly bothered. Ben is not very loud, not very determined. I expect that the only annoyance most of them register is the GDGB, and if they have children or grandchildren they’re probably used to it!
But the northern entrance of Crater Lake is closed! Black ice on the highway a few miles up. (Later I will be told that probably that road will not reopen this year.) Dave has to drive entirely around the west side of the lake and come in the southern entrance. Maybe Ben is being patient; the rest of us are getting restless! And when we do get to the lake, it is a very different experience from my day with Michael. No quiet time to meditate or connect with the energy. No time to listen to the ranger’s talk, or see all of the video presentations on the geology and history of the place. No tranquility at all, really, because underneath every moment is the reality that Ben must be observed and contained.
It makes all the more real to me the tremendous burden carried by people with autistic children. Everything has to be done fast-forward, because Ben just doesn’t have the attention span to sit quietly. One or the other parent may get to see this or that; the other will be occupied with Ben. They rarely, maybe never, get to see things together, and rarely, maybe never, at leisure. Nor can Karis get both parents’ attention at the same time. It just isn’t there. And it goes on and on forever. Well, maybe not forever. Certainly Ben is far more normal than he was. But how many years stretching out behind and ahead make up less than forever?
And the hardest thing about it, I suspect, is that strangers are so quick to judge. If Ben is upset because he has to wait, or because he wants to be elsewhere – or for whatever reason – the judgmental stranger is there to disapprove and to silently render the opinion that the parents need to train the child better. Remember that, folks! The “misbehaving” child you disapprove of may be coping with an internal situation you couldn’t handle for ten minutes. The “negligent” or “incompetent” parent may be devoting his or her life to making the child’s life as normal as possible. What gives you the right, or the data, to judge? You will move on to other things, other places. They will remain, lovingly and freely giving their lives for him.
Greater love than this no one has, Jesus said, than that he give up his life for his friend. (Or, by extension, for his – or her – child, or brother.)