Waiting for the fog to lift, literally and figuratively.
More than the diets, more than the structure, more than the cognitive delays, I am flummoxed and frustrated by the sensory and auditory processing issues that come with our version of ASD. I was raised in a house full of voices and conversations, laughter and bickering, a barrage opinions trivial and and nontrivial.
While I require long stretches of silence I also crave conversation, and there are times when animated voices are something my boy truly cannot tolerate. Even conversation in muted tones can upset him if my sentences are not complete and he becomes furious with my “muddled up” speech at the merest hesitation mid-sentence. Go ahead, try it, try to talk in complete sentences all the time without pausing or correcting yourself partway through. It’s not always a problem for him, but it seems to happen a lot these days.
Keeping our distance.
What bothers me most is that it is easier to have conversations when he is not in the same room and I hate what this kind of self-imposed isolation indicates. It keeps me from doing things I want to do with him, and makes me want to protect him from those situations that overwhelm him and make him want to stop the world – and me – from talking.
The lesson learned every day? That we don’t take the blame for what goes wrong and we can’t take credit for what goes right. We tried to accept a long time ago that most of what happens in life is out of our hands – and yet…years of data collection and analysis have forced us to look at evidence and then try to predict outcomes. We are compelled to try and control whatever is within our grasp, no matter how slippery.
So now we have this explosion of language and introspection and creativity and we cannot resist the urge to ask, “Did we do something to make this happen?” Maybe. Somewhere out of the many new situations that life gave our boy, a window opened, a breeze blew through and the seeds of success landed and took root. We created some of the circumstances (camp) and others decidedly not (the loss of JM) but at this moment we see a sense of strengthening purpose and engagement and the hope it brings leaves us blinking in the sunlight.
We know it might not last in its current state – I don’t think we will ever be free from regression. And we all regress sometimes, learning from those same mistakes again and again (Why did I eat that? Why did I say that? Why did I drink so much of that?). But when fundamental skills – like speaking in paragraphs instead of phrases – ebb and flow we find we will do anything to keep that window open and the breezes flowing knowing full well we could wake up one morning to find it closed. The prospect of losing something so hard won triggers every possible human response: hope, fear, optimism, cynicism, love, faith, superstition, luck, magic, and faith – all tempered by what can only be called PTSD. The shock and awe of those early years can return in an instant when he looks at me and his eyes are blank and he is seeing only what is inside his head.
But thinking about it now won’t make it happen – and it won’t fix it when it does – so I will be thankful for the gifts we have today and have faith that they will still be there when we wake up tomorrow.
We went straight from camp pickup to vacation; now is the only significant length of time between June and December that we will all be together. There is a lot to process: camp, work and school transitions, the sudden loss of friends and colleagues over the summer. It seems I say in every post that we are learning a lot, but each time I write it I suppose I really mean to say we are learning unexpected things about the twists and turns our lives take, beyond what we have come to expect in the earlier years of raising children and getting older. The more I try to live in the moment, the more these unanticipated events seem to get in the way.
Even as I write a hurricane (Isaac) has popped up out of nowhere to bluster through our trip and set us back a day – it’s causing both excitement and anxiety, but right now the nearly empty beach is populated by just two people, Dad and boy out for a snorkle in a window of late afternoon sunshine between the bands of wind and rain. This is the revelation of the vacation for me. Usually too chicken to snorkel, the calm waters of Caneel Bay convinced me that even I could venture out into the reefs. Much as I am enchanted by graceful sea turtles and spiky urchins down on the sea floor, the most breathtaking sight is the beauty of our boy moving through the ocean. I have always known he is more content under the water than above it, but I never understood the truth of that until now. While I have to remind myself to breathe through the snorkle, he dives and darts down through the water with an ease that astounds. This is a moment I can savor and one I would give him every day if I could.
And when he comes out of the water he rests. And then he talks. And most of words and phrases are his – not scripted or non-sensical. He wants to know more about his friend who died suddenly of leukemia while he was away (we don’t have a lot of answers; we can’t make sense of it, either). He wants to talk about school and home and his sister going to college. The water has cleared the static in his brain and it reminds me a little of Oliver Sacks‘s stories of people who gain clarity and lose it again. Even though the increased fluidity does not last, the gift from the sea is a window into his mind, and I wish and wonder how we could prop it open a bit longer before the storm arrives, passes, and we go home.
That’s what my Dad used to say to me all the time. The first time he said it I was very small and absolutely horrified, and I heatedly insisted that my feed DID match. Then he took my tiny toes in his hands and pointed out that my big toes were on different sides and that if my feet truly matched they would look exactly the same. Stubborn as I was, I did not like to be teased in this way and for a long time I scowled at him every time he said it. The older I got it became progressively more annoying until – poof! – it it became endearing, one of many stock phrases he could be counted to toss out in the course of a day. And eventually I started saying it to my own kids, and they find me annoying. Surprise.
Last Sunday morning it came to mind when my boy padded into my room and slipped into bed with me, taking up the spot usually occupied by his traveling Dad. As I snoozed on my right side, he lay on his left side playing with his iPod, and he lined up his feet so that the soles of his matched up with the soles of mine. An excellent case of respecting personal space with me, as I jealously guard the few weekend mornings when I can sleep in.
I used to think more than I should have about the matching feet thing – it took me longer than usual to grasp the concept of symmetry, I guess. It bothered me when I was little, because I was the youngest and hardly ever in on the joke and thus took everything so literally (case in point: I thought the guerillas who terrorized the Olympic village in 1972 were men in gorilla suits). Sometimes I still miss the cues and can be gullible, which makes me love living with this boy even more because his syntax and receptive language are all over the place – it can be hard to know when he is being silly and when he is earnest. He relies quite heavily on scripted speech and so some of the mashups that come out are priceless. A few weeks ago after being rude and subsequently scolded he asked, “Did my popping off cook my goose?” The latest favorite happened when he got into the car after a long bike ride with a friend: “Man! I have a splitting butt ache!!”
Our feet might not match, but I think we understand symmetry. And, unlike his mother, he has very nice feet.