Just like today, it was snowing in Boston on New Year’s Eve in 1986. As we drove through Back Bay on our way out of the city, we recalled that not-too-long ago storm, which left the city quiet beneath several inches of snow. Newly engaged, we had just returned from Christmas in Saint Louis and had dinner with our best friends who were visiting from Washington, D.C. We’d all spent our first year out of school together, pooling our meager resources to share a plate of cheese enchiladas and a few Dos Equis from the Aculpulco on Newbury Street and watching the fourth of July Fireworks from the roof of our apartment building. Now we were all a little more settled and able go out for a proper New Year’s Eve dinner in the neighborhood. As we walked back to Beacon Street we were alone among the great trees of Commonwealth Avenue, we had an epic snowball fight in a city that belonged only to us. Then we walked down silent Marlborough Street, the golden windows making patches of light on the blue white snow. We were on our way home together, all setting out on journeys that would keep us close and push us apart at turns but still irrevocably starting from the same place.
We are spending a few days in the city, and one of my favorite parts is the sounds of traffic outside the building at night. Even the sirens bring back good memories of my years in Saint Louis and Boston, laying in my bed feeling the pulse of the city outside my window, the comfort of people moving about busily, anonymously nearby. In Saint Louis there was the longing as a young teen – of wanting to be out and about in the night, and then, year by year, getting that chance when I got a job, went out with my friends, learned to drive. It was all I had hoped even in days when we lived in Iowa and visited Chicago; I would sit on the stone planters near the hotel taxi stand, watching the people and cars go by with such purpose, and longing for my chance to be part of it. Even farther back, I recall sitting up at night, jet lagged, watching the crazy cacophony of Italian midnight traffic on the Via Veneto. Later in that trip my brother spirited me away one night to a tiny restaurant up a stone path where we looked at hills and city lights as we ate by candlelight. For years I thought I must have imagined that night – it seemed so dreamily impossible – the image was so precious I held onto it for a long time before asking him about it and felt such joy to know that it was real and just as precious to him.
And so tonight I look out the window at the full moon above and the cars zipping by below, so happy for this chance to rekindle my romance with night in the city. Charlie Haden has an album by the same name that is perfect for times like this.
Whatever damage we sustained from overindulgence in red food coloring back in the 70s before it was yanked form the market for being carcinogenic seems to have subsided enough to allow for a resurgence in popularity of Red Velvet Cake. Red M&Ms reappeared a while back and now the cake, with recipes that call for less of the now safer red dye (but still a whole bottle nonetheless). Our mother’s birthday was on July 3, and she made red cake each year to take to the party up on the Cedar River on the 4th. Because this cake tastes especially good cold (it’s the cream cheese frosting), and the colors are right, it is really a great summer cake. And, as it turns out, nice for Christmas. I had misplaced the recipe that Mom used and recently found it in a recipe book put together by the Cook’s magazine folks. I will post the recipe itself on Parsenip later this week.
I’m a little slow on the uptake. Yesterday it occurred to me that we have spent the last sixteen years carefully constructing scaffolding around our children, trying to raise them smartly, lovingly, safely. And now, now that we are enjoying those revelatory moments in which they think things through, do the right thing, ask good questions, and fall in love with the outside world, we must watch them dismantle that structure that we built so carefully, and sometimes have an active role in taking it down around them. I held on to a conceit that I could supply guidance and instill confidence when they need it, but now I see so clearly that there are steps – lots of them - they have to take beyond my view and that those steps include tasks I looked forward to doing myself that I must now entrust to others. I knew that the process of building independence would be easier in different ways for each of my children, but I’m starting to realize that the person I need to build independence for is me.
Well, after making it sound like I live in a war zone I really should say why I love what autism has brought to my life. Years ago, when I had an inkling that my life as a parent would be somewhat different than I expected, I plopped myself down at a friend’s kitchen table, and said “I don’t want this to change me; I don’t want to become angry; I don’t want to become the kind of parent that other parents avoid.” Well of course it did change me and there are moments when I am angry and there are parents who avoid me, but I know all of that would have happened anyway, regardless of whether I had a special child or not.
But what I didn’t know was that my life would have more texture and incidental joy than I could ever imagine. That my child brings as much joy to others as we give love to him, that for every unexpected thing he does we learn something unexpected about ourselves. We learned that it is impossible to parent any two children in the same way, that consistency is not about rules but about stability. That believing what you say is just an important as the words you are saying. That children often teach each other better than adults teach children, and that there are some children you can parent instinctively and other children that you have to seek help to learn to parent them well. I have been quicker to understand and slower to judge, but less tolerant of those who might be quick to presume they understand me.
I learned to think in pictures, that emotions are a language unto themselves, that I can listen and speak with my eyes, and the practical value of being able to memorize dialogue from movies and TV. I’ve learned the hidden language of touch, and that each person speaks it differently. I’ve had spoken conversations for hours and gotten nowhere; I’ve made months of progress in a few moments of holding hands. The two most important things in life are sleep and a sense of humor, followed closely by coffee and the internet. With these things, I have found ways to help my family, stay connected with people I love, and found my way back to being the person I always hoped I could be.
When I look out from my life at the lives of others, I don’t see people who have it better than me – I see some people who think they have it better than me. Everywhere I turn, people are still having mid-life crises, still worrying about their kids, still dealing with their parents (living or dead), still searching for something. Sometimes I think people manufacture problems out of sheer boredom. So, even as I struggle to create balance in my life, I am acutely aware of what I have and the bounty of my blessings. Autism has given me the freedom to do what I think it right because there is no map for this life – I looked everywhere and I asked everyone and nobody knows. That’s the gift: the challenge of unraveling the mystery, of being able to write about it, of finding those marvelous people who speak our languages and who are on a similar journey, and who are laughing all the way with us.
A while back, someone sent me a link to an article that said that mother’s of kids with autism have the same type of stress as combat veterans. This is not news, but it’s nice to have this kind of twisted validation. I showed it to my husband, and he laughed and said “No kidding, we live with an IED.” Exactly. It’s the perfect illustration of what living with autism is like – you live under the same roof as an Improvised Explosive Device. Just walking past – even a conversation with another person - can cause a freakout. It’s like those phantom light switches that don’t turn anything on – some unsuspecting soul in China flips a switch and your child ignites.
To be fair, there are also parallels with living with teenagers, but with teens you can bet that eventually they will just give up and go to their room, or – better yet – stop speaking to you. With just about any typical child, you can win the occasional argument, but that is not true with autistic people – if you decide that you are going to win they raise the stakes so high you have to rewrite the concept of what winning means- for you. In our family we have dubbed this the Pizza Kid rationale. Several years ago an autistic teen left his grandparent’s house and hid in the woods for five days because they had refused to have pizza for dinner. Five days. He was never lost – he watched people look for him while he hid, and finally, finally got hungry enough that he didn’t have the strength to elude them any more. You have to admire him for refusing to lose, but when it’s your own family, and for their own safety, you still can’t let them gain control. So you barter – it’s really the only thing that works with anyone, but you have to be much more transparent in your motives because to people with autism it’s not about winning – it’s about keeping their world the way they need it to be. Perhaps what is most unnerving of all is the randomness of it - the improvised part – what is crucial to them one day might not matter in the least on the next. They need to control everything if they are going to survive, and you are the one who can provide the order they crave, or disrupt it. So it has to boil down to life via contract – I will trade you this for that. And even then there are times when they are so freaked out by the vagaries of life – bickering siblings, changes in schedule, bad weather – that they can’t even cut a deal, and the house of cards collapses - BOOM!
But there is a silver lining to this thundercloud. You learn a lot about yourself and a lot about what motivates people of all abilities. You learn the power of your own fear and the power of someone else’s, and that managing fear – yours, their, everyone else’s - is what 99% of your struggles with autism amount to. If you can find ways to keep either one of you from being afraid, of the world, of uncertainty, of each other, eventually, hopefully, you can put the flack jackets away.
The day after I drafted this essay the New York Times ran a front page story about a boy with high functioning autism who rode the subway for eleven days because he didn’t want anyone to yell at him. This is not a closed topic.
This section of Ayer, Massachusetts, abuts the former Fort Devens. The area has been struggling ever since the U.S. Government closed the base in the 1990s. While the Devens Redevelopment Authority (it still has an Army Reserve Unit which houses lots of desert camo hardware – trucks and tanks and the like) has had some success in drawing businesses and a charter school to relocate or build there (with major tax incentives and subsidies from the state) the recession has nonetheless taken a continuing toll on the surrounding communities, which built their infrastructure throughout the 20th century on the population of soldiers and their families who lived near or on post.