Putting Autism in its Place

Written by me on my non-autism blog. Clearly, I’m not that good at compartmentalization.


Autism Acceptance Month includes Light it Up Blue day, and people find themselves reminded, pummeled and delighted by blue lights everywhere. It’s hard to know how to feel about the hoopla when we try so hard not to let autism dominate our lives. That’s why I moved my autism posts to their own blog. To be honest, though, those were the posts that got the most hits when I began writing Lettershead back in 2009. Much as it would lovely to be vastly popular and widely read, Lettershead is about trying to keep some perspective and focus on ideas that are not directly informed by autism.

Autism casts a long, blue shadow, however. Sometimes it feels like I spent my early years escaping the shadow of alcoholism only to turn and face autism. It was good preparation, as it turns out. An anxious person by nature, living with…

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Take Me to the River

It is easier to leave than be left. When you are the one leaving there are no empty spaces to fill – you can become immersed in the going, in new environments and sights and experiences. And so I took the opportunity and, for a few days, we left our partially empty nest and explored a brand new place. I chose a destination that I always wanted to visit but that held no particular sway for my boy and would at least not completely bore my remaining children: the Hudson River Valley. It had the added appeal of being a place I know my father would have loved, with the river, the railroad and the legacy of FDR. This post, 20 years to the day after he passed, is for him.

Let me say now that my kids were fabulous sports and that I told them this repeatedly as I stuffed them with food they loved.

Everyone deserves to get their way sometimes, and I made sure that we all had a say in what happened each step of the way. I fed my inner history geek with visits to Franklin and Eleanor Roosevelt’s sites, the Vanderbilt Mansion, historic Hyde Park and charming Rheinbeck, NY. The weather was sweltering but the views were fabulous, and I will never forget a golden hazy afternoon driving down the Taconic Parkway toward the river – we were the only car on that undulating road, and it was as though we were moving through time toward the bygone days of FDR, the Vanderbilts, and the railway chugging along the river, with each view painted to perfection by someone perched upon the hills. Oh, that I had been driving something other than a minivan, but no matter.

I was determined that this summer would mean something more to us than surviving camp and preparing for college. I wanted to give a little of what I got from my childhood, trailing my mother though cities and museums and restaurants, only half listening but loving being part of something that seemed bigger than me. I like being where things happened, I like knowing about those places, I like sharing what I see and marrying it with what I read. All of this generally requires a lot more talking than the autistic mind would prefer, and so my inner narrator has in many ways become the blogger (see also, Lettershead).

The complicated story of the Roosevelts was not lost on me as I toured the vastly different homes of Eleanor and Sara Delano Roosevelt. Each of them doggedly pursued the agenda life set before them, with many changes of course and myriad joys and disappointments along the way. Both raised in privileged surroundings, one used money to exert power, the other to buy whatever freedom she could get for herself and selected others. We looked at their things, looked at their spaces, and talked about their influences on the presidency and the nation, independently and through FDR. It reminded me that there is only so much you can plan, only so much you can expect to preserve, and that if anything is to prevail it is the spirit. All else is fleeting at best.

Photos: Overlook of the Hudson River from the Vanderbilt Mansion, Hyde Park; The Eveready Diner, Hyde Park; The stream at Val-Kill; Corner walkway of Springwood, the Roosevelt Home; View of the Stone Cottage from Val-Kill from Eleanor’s Val-Kill cottage, with ramp for FDR in the foreground.

A Week of Milestones

The first week of July is full of memories; for most everyone this is likely true with the holiday but this year I am compelled to make a list:

  • 90 years ago our Mother was born (July 3)
  • 59 years ago our beloved Foxleigh was born (July 8)
  • 34 years ago we had our last 4th of July on the River in Cedar falls (July 4)
  • 34 years ago we moved to Saint Louis (July 8)
  • 30 years ago J&J were married (July 3)
  • 22 years ago I started my job working for the President of MIT (July 1)
  • 20 years ago Dad threw a 70th birthday party for Mom; that trip was the last time I saw him (July 3)
  • 19 years ago we bought our house (July 1)

And this year we took our boy to sleep away camp for the first time. It is hard to say how pivotal this year’s milestone is, but I am more conscious of it here in the moment than any of the others, that’s for sure. And the image that goes with it is of our garden, where 19 years ago the only blooms to be seen in early July were the lilies on the right; all of the rest we have planted and tended ourselves with the expanding sunlight, a lovely cascade down from the elegant Japanese maple. We found that by taking down a birch and a pear tree we freed up enough water to sustain the maple, green the lawn and provide sun for the perennials. We didn’t plan it that way, it just seemed right to trade shade for sun near the house and all of the other things followed.

You’re a Pretty Cute Kid but Your Feet Don’t Match

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.

Sometimes saying I Love You is the best revenge

Everyone has a Dad story, even if it is about not having a Dad.  My Dad stories, like most people’s, I think – run from the bitter to the sublime.  As I hear stories on the radio and read them everywhere about Dads  and whether or not they could tell their children that they loved them, I recall my own parents, and what they said to each other and to us and what they left unspoken.

Years ago I was talking long distance with my mother about navigating my own adolescent relationships as she sat at her desk near the kitchen in our home in St. Louis.  She had taken over the breakfast nook as her office, and it was situated across from the kitchen and around the corner from the  dining room.  Eavesdropping was simple and fairly common because her melodious voice and contagious laughter carried easily into the adjoining rooms.  She also had a tendency to take on the accents or speech patterns of the people she spoke with, which made listening to her talk on the phone highly entertaining.  During this particular conversation she was telling me – quite matter of factly, without rancor – that my father did not like to talk on the phone (I knew this) and that he just wasn’t one of those people who expressed feeling openly – he simply didn’t say I love you – to her or to anyone.  I wasn’t entirely sure of this but was agreeing with her that while not big on introspective, emotive chats it was clear, in his way, that he cared for us.  Within minutes I heard my mother pause as the floor creaked as my father passed on in the way to the kitchen.

“Who’s that?” he asked, wanting to know who she had on the line.  When she said it was me, he said, “Oh, let me talk.”  He got on the phone, chatted with me at notable length and then before handing it back, chirped “Love you!”  Mom didn’t know whether to be insulted or delighted at being so openly contradicted.

That was classic Dad – never wanting to be analyzed or pigeonholed, he was a master of defying expectations, creating delight or disappointment at every turn.  Only now does it occur to me to picture him, very likely hovering just out of sight in the dining room, knowing that she was talking about him and plotting to exact his revenge.  I understand that his expressing his love for me was as much about him letting her know he was privy to her armchair analysis than it was about me.  So much of what we say and leave out depends on who is listening, who is overhearing, and who we can depend upon to love us back, whether they say it or not.