adult transitions

3 January 2017

Waking up in the Dark

img_8055It’s January for real. School program is back in session. We wake up in the dark. Without my permission, my mind now looks at every routine as something that will change soon, and weighs whether that is a good or a bad thing. At 6am, everything is a bad thing…except then I realize maybe 6am won’t be the wake up time any more. File that one away. For no particular reason I am glad the Christmas lights are stored away. Nothing more depressing than Christmas lights after Christmas.

The phone rings. The driver reports that the street is too icy for the van to come any closer. We can’t even see the van or its headlights. Winter, by New England standards, hasn’t even gotten started yet and we have had more van troubles than even the epic snowstorm years. There’s already been one morning when a crew was required to get it unstuck. It’s considered safer for us to walk down the icy street in the dark than for the damn van to try and make it to our house on our road, which is newly paved but was poorly graded when the street was built. The current driver is risk averse but very nice, and he inches the van into view so his headlights can light the way. The designer of the Econoline van clearly lived in the south, because they could not perform worse in winter conditions and yet we all pile our precious people into them.  “A tin can on wheels,” one of our more adept drivers calls them.

In previous years we have had braver drivers, better vehicles and a more attentive and skilled plow company. We can only hope that next winter brings better transportation arrangements, but the odds are very much against it. Adult transportation services in semi-rural suburbs such as ours are practically non-existent. It is a bureaucratic and funding quagmire that is legendary among bureaucratic quagmires. I attended a transportation conference last spring that was designed to address just this issue – in the age of Uber and Lyft surely someone is looking at the big picture. Um, not exactly. Regions, cities and towns are coming up with their own solutions, some better than others. Still, the conversations are happening and many experiments are underway. My job is to figure out where our town is in the process and try to move things along, as it were.

It doesn't look like the driveway from hell, but to some it is exactly that.

It doesn’t look like the driveway from hell, but to some it is exactly that.

Out and about on this rainy, icy, miserable day, I see an older woman making her way down a treacherous sidewalk. She is wearing a heavy wool coat and has a plastic rain scarf on her head, the kind that unfolds like an accordion. She’s pushing a wire shopping basket. I feel guilty zipping by in my warm car as she bumps along, and I wonder how people find themselves so suddenly in her shoes, in the rain, in the cold and it strikes me that I know exactly how that happens and that this is why I am obsessed with the transition. But this particular person strikes me for another reason. Even though I cannot see her face, I have known and been curious about women like her – kind, patient and determined. I think of one from my childhood in Iowa, Evelyn, who was a nurse who survived the Bataan Death March in 1942. She haunted the back of our church and brought our family bags of walnuts she had gathered from her yard. When the Beatles released Eleanor Rigby, my mother said the song reminded her of Evelyn. She is one of so many people I wish I had been brave enough to know better.

In the meantime, I resist the urge to ask my teenaged companion if he wants to live in this town forever (I know that answer anyway), if and when we should sell the house, and whether he really needs to go away to college. For once I am grateful for the Metallica blasting from his earbuds.

Breathing deeply, I remind myself that we can only make one decision at a time (mostly) and that no decision can or will last forever, so I should stop planning for decades and settle on planning for months. I’ll never stop thinking about the decades but for now just getting home and having lunch will have to suffice.

Getting home and having lunch. Sounds like a routine we can keep.

22 April 2013

The April 15 Post That Wasn’t

IMG_4098I was almost ready to publish a post on April 15. I just needed to load the fox photo. But I had an appointment, and on the way home the news on the radio changed everything. Bombs going off in my adopted city on a street I used to traverse every day. I’m still processing  the bombing and all that happened in the days after – me and millions of others. So, after today’s moment of silence I returned to the post I wrote on that day, a day that was already profound for me, even before 2:50pm.

A Different Kind of Marathon.

April 15. Boston Marathon Day. Tax Day. Halfway Point in Autism Acceptance Month.

SONY DSCI bailed on posting every day this month, obviously. Priorities change, and with so many people saying so many things about autism, if I am going to add to the noise it had better be worth it. But on this marathon day there is something to be said about the value of pacing yourself when facing the long haul of parenting. I’ve been following a thread online in which parents share their strategies for separating from their kids for personal time, shoring up their marriages, and finding ways to talk about things that aren’t autism (it’s harder than you think). That conversation follows a number of pieces I’ve read lately in the mainstream media where people without children feel the need to weigh in on the foibles of those who do have children. Too much time on your childless hands, Mr. Bruni? If people without kids are irked by people who talk about their kids a lot, imagine the pique in those who find themselves surrounded by the misplaced angst of parents struggling with sports team playing time or ivy league SAT requirements. And it’s not so much pique really as it is having absolutely nothing to add to such conversations. It makes a better listener and people watcher out of me, for sure, but as the years go by whatever skill I had for small talk sort of waxes and wanes with wherever we are with our boy. Sometimes it seems to have atrophied and I almost don’t trust myself at parent functions for my typical children anymore because the urge to say something truly inappropriate (but funny, I assure you) is almost overwhelming. It’s like the vegan invited to an event at a steakhouse – just because the parameters of your life are different you don’t get to ruin it for everyone else. If it bothers you that much, stay home, right? Wrong. Choose events wisely, but go, and bring your empathy with you.

***

So, I left writing this post to do work things and then I checked back on the parenting thread I was talking about, and was validated and educated by what I read there. People have made some hard choices to keep balance in their lives and create independence for their children. It made me think, and so I went and sat in the rare spring sun to contemplate the long-term plan. Out of nowhere (kind of) appeared the boy. He wrapped his arms around my head, kissed it and said, “Are you worried about something?” He wedged himself into the chair with me, leaned his head on my shoulder, and twirled the hair at the nape of my neck with his fingers the same way he did as a toddler. I couldn’t answer him. We heard a door open – saved by the Dad, taking a break from work. We scrambled upstairs and while I crossed the room to talk to Dad, the boy looked past us out the window and pointed (now he points!):

“Baby foxes!” He spotted them – four in all – scampering about, camouflaged almost perfectly against the oak and maple leaves. We would have been too preoccupied to notice, but we found ourselves checking in on them all day as they wrestled and napped, waiting for Mom to come back to the den that sits just up the hill from our house.

He feels ahead of me, he sees beyond us. We have a lot of thinking to do.

4 September 2012

So, How Was Camp?

I wish there was a simple answer to this question.  Was it the right thing to do? Yes. Are we glad we did it? Yes. Did it result in miraculous, instantly recognizable changes? In some of us, yes, but how if affected our boy and how it influences our next moves to plan for his transition to adulthood I am still not prepared to say. We still need to assess his physical health with regard to his diet and digestive system not to mention the dislocated knee (which appears to be fine). We also need to benchmark his academic skills and assess   his social development.  The latter shows greater depth and fluidity, but I can see the potential for him to fall into old patterns with old friends. He seems generally more communicative and more cooperative, though we are still in the glad-to-be-back-home honeymoon period.

Those miraculous, instantly recognizable changes allude to those of us left to fend for ourselves, boyless, at home. My own angst has been clearly documented here, but it must also be said that for all of our hand-wringing the most surprising change was that things here did not change nearly as much as we expected. Special diets, elaborate toy tableaus and the occasional Gerald Mc Boing Boing sounds are not as disruptive to our lives as we may have thought. In our case, the burdens of autism are not nearly as heavy as we were lead to expect – when he was gone we felt more far more emptiness than relief. In earlier years we may have felt it more than we did at this point but I feel the need to point out that the camp experience was more about him being away from us for his benefit, not our need to be without him. Some people really do not understand that. And we do recognize necessity that our other children need to know that his independence as an adult is just as important to us as theirs, which is a point that absolutely must be made with both actions and words. In reality, the hardest part of the camp experiment is that it is so lovely to have him home that we are loathe to think about ever letting him go away again (for the record, he is also perfectly fine with that).

And there’s the rub. The urge to become complacent is, at this early moment, almost irresistible. But we must keep our eye the prize of independence, or whatever measure of it we can hope to achieve. He is vulnerable – we know now that he can endure a lot but we also know that he may be just removed enough cognitively that he might be forced to endure things that he should not. He was in an environment that we knew would not exploit his good nature – where else can we possibly find that outside of home?

So camp, in the end, did not give us as many answers as we might have hoped, but it is making us rethink our questions.