Monday, January 16, 2012

Tommy's Birthday

My brother Tommy
A friend of mine who lost his sister to cancer warned me that there were certain times of year, around her birthday and the date of her death, where he would just feel off, sunk in a glumness that he couldn't pinpoint, and then he would realize: Oh. Somewhere in his subconscious calendar, he was tracking the movement of time away from her. 

And so January creeps forward here. It's been busy with new projects and a sick cat and social outings and one thing or another, life the way it is, but today I realized: Oh. My brother Tommy's birthday is on Tuesday. That's the dark noise flittering around in the background. 

It's the third of his birthdays to pass since he died at age 45 in August 2009, and time has, as advertised, smoothed some of the sharp edges. 

The initial rawness was, in some ways, shocking in and of itself.  Because of my brother's severe autism, he lived in residential schools and group homes from when he was 7 and I was 2 years old.  I have no memory of him at home beyond vacations -- Christmas, Easter, summer break.  Sometimes, Mom and Dad would drive out to his school in Delaware, my sister and I packing the backseat full of Barbies to entertain us through the drive there and back. Susie is older and remembers him at home, but I don't. 

Tommy lived the last 24 years of his life in a small group home in Maine with some of the kindest people I've ever met working with him there. He made friends and went bowling and to baseball games, rode regularly with the therapeutic riding program he loved and kept the yard free of dandelions with a ruthless vigilance.

Tommy wasn't part of day-to-day life in my memory, so as much as I didn't expect his sudden death at only 45, I also didn't expect how much the finality of his absence would unravel me for a time.

For most of my childhood, Tommy injected a level of chaos into most family holidays. To be honest, the spitting and the bedwetting and the less-than-ideal table manners weren't all that much fun. But he was family and I felt that bond. We both took the same destructive glee in ripping into Christmas presents.  And he more glee in tidying up (I'm more of a slob; Tommy liked things in their place, although that order could remain mysterious to the rest of us).  

He didn't make much eye contact, but I do remember moments, hiding out with him, where I'd just sit next to him and talk when no one else was in the room. Mostly, he would rock back and forth and I couldn't tell if he was listening.  But every once in a while, usually when I made some crack about a relative, he'd shoot me a look as if to say, "Yeah, I know. They're all a little nuts."

This is what siblings do, exchange sidelong, knowing glances about the quirkiness of family.

We looked alike, and in some pictures, I see family expressions, the mix of Mom and Dad that came down to both of us.

And then we were not alike. I spoke; he didn't.  He hummed and rocked and flapped, the classic self-soothing mannerisms of autism.  

Autism diagnosis has exploded in the last 30 years.  But when I was a kid, half of my childhood cohort thought my brother was artistic, painting portraits in some garret.  No, I'd explain.  He was different. Really different.

When we were growing up, the now dismissed Refrigerator Mother theory put forward by Bruno Bettelheim and Leo Kanner was just falling out of fashion. They suggested that emotionally frigid mothers who turned away from their children inspired the emotional distance of autism.

Autism is now largely considered to be a genetic issue.  But in the 50s and 60s, all those mothers who had kids like Tommy were, on top of having to deal with the difficulties of having kids like Tommy, told his autism was their fault. I don't have kind feelings toward Bruno Bettelheim.

There weren't any autism walks or ribbons of awareness when Tommy and I were growing up. The resources available for him and my parents were frequently lumped together with children with related, but different issues needing different care. My parents spent innumerable hours investigating every new treatment that showed promise, from the B vitamin megadosing to hours working with Tommy on picture and word recognition. He went to day schools and, when he was older, bigger, and more energetic, to residential schools.  My parents navigated labyrinths of legal and funding options and did everything they could to make sure Tommy had every opportunity to be healthy and happy.  

I am thrilled that autistic people and their families today don't have explain nearly as much, that there are more and better options, that there are approaches that can help autistic people and their families connect more with each other. And I also wish more of those options, instead of Bruno Bettelheim, had been around for my family.   

One huge impact on my brother's life was the introduction of facilitated communication (FC).

Transcript, FC conversation, 7/25/1996 - p. 1
Until that point, we were all told Tommy likely didn't understand much of what was going on around him. 

Facilitated communication is assisted letterboard typing, a treatment that grew out of work with people with cerebral palsy. It was not without controversy.  There were claims of it being a Ouija board, with the facilitator (deliberately or not) influencing the letters plucked out one by one by the client.

But then there were also autistic people that eventually no longer needed facilitators, who began to type out words on their own. No Ouija boards there. 

So in our 20s, Tommy and I finally got to have a conversation.

I believe FC worked for Tommy, that it was his voice speaking, not a facilitator's. Although he always had a facilitator with a hand on his arm back near his elbow, I think Tommy directed the chosen destination of his pointing finger on that letterboard.
Transcript, FC conversation, 7/25/1996 - p. 2

What I can absolutely guarantee is that Tommy was happier when people treated him as if he could understand, when he was given choices, when he was asked questions and given opportunity to respond. 

He mellowed in his 30s and 40s (as we all do) and settled into a peaceful rural life in Maine, seeing my mother regularly after she moved nearby, seeing my father on his many trips north, participating in the therapeutic riding program in the summers, clearing those pesky dandelions out of the yard, working with the staff on treatment goals, including FC, to make his life more comfortable, and enjoying outings with his housemates. 

Tommy brought difficult issues with him; there is no way around that. 

But Tommy could also be refreshingly fun in his own particular way, in part because social conventions didn't apply for him. 

Transcript, FC conversation, 7/25/1996 - p. 3
An example: at a family bbq at my aunt and uncle's house in the late 70s or so, Tommy arrived back at the table from a trip to the restroom quite happily naked. He was a nudist at heart, I think, and destroyed, bit by bit, thread by thread, countless shirts over his lifetime. I have a fond memory of watching one of his shoes go by my window when we were in the car. But on this occasion at my relatives' Pennsylvania home, he'd just ditched his whole wardrobe. It was hot; he was a clothing optional kind of guy. 

My mother (not endorsing the clothing optional approach) went to find his clothes, assuming he'd left them upstairs. 

And she could find no sign of them -- not in the bathroom, not in the closets, not in any of the bedrooms, not on the stairs, not anywhere. None of us could find them anywhere. We considered and rejected the flushability of his clothes (with mild plumber alarm) but it just didn't seem possible.  His clothes had just vanished, Tommy's personal magic trick.

Transcript, FC conversation, 7/25/1996 - p. 4

His dip into nudism was foiled that day, as Mom of course had other clothes in supply, but he definitely had his moment of making an entrance and creating a mystery. 

Some days later, my aunt dropped something on the bathroom floor and when she leaned down to retrieve it, happened to see a bit of cloth hanging down behind the radiator.  And pulling on that, she then discovered, wedged with great precision, Tommy's abandoned clothes.  

Tommy, like any kid, had crafty moments, and he really, really didn't want to wear those clothes on a hot July day. Even before FC, Tommy managed to get many of his points across. 

Most of all, Tommy had some fun amid family and friends that loved him.  I will hope to remember that above all on his birthday. 

"Cinthia makes me laugh. I am laughing with you. A good thing to laugh."
          -- Tommy, during an FC conversation when I visited Maine in 1996.  

Thomas Daniel Daffron
January 17, 1964 - August 30, 2009
Photo taken mid-August 2009


  1. Thanks for sharing that, C. I only saw Tommy a couple of times, and the thing I remember most was his glee regarding hot dogs. Whenever I rub my hands together in anticipation of yummy food, I think of him doing that with a big smile as a plate of hot dogs was placed in front of him.

  2. You are so right with those hotdogs - he was a huge fan!

  3. Very nice. Thanks for sharing this.