05/17/2012 12:38 pm ET Updated Jul 17, 2012

An Army of Brothers, Standing Guard

When my son, Max, was 3, he had a job. He walked alongside his older brother and translated.

Andrew was 5 and clearly autistic. He didn't speak but rather made high-pitched sounds to indicate what he wanted. He was, that year, fixated on this set of objects: a length of beige twine, the wheel and axle from a once-toy car, the pages of a Richard Scarry book where cats poured colored paint into pans.

Max behaved like a sentry where his brother was concerned. They played together, but it was a strange, foreign kind of play that happened in Andrew's language. I would hear Max murmuring, turning the rules of whatever they did -- making walls of blocks, for instance -- into English. At least twice a day, Max would come and get me; he'd tug at my clothes and have me bend down and report seriously, his face to mine, what Andrew needed. A cookie, a Kleenex to blow his nose, a different shirt with a tag that wouldn't scratch his back.

At 4, Max was reading and I would hear him, for long hours after his brother came home from kindergarten, chanting from Lassie or The Wizard of Oz. The times I peeked into their bedroom, I saw a small, square boy wearing spectacles and holding a book, intent on this task, with a taller one gazing in the distance and blinking rapidly, one hand splayed in front of his face.

It was that spring that I took Max to his preschool screening. Yes, he was accomplished: Reading, math, puzzles. But a few oddnesses popped up. He tested as near-deaf the first time they put the headphones on him, for one thing; then, when I brought him back for a second round, his hearing was perfect. But his interactions with other children were brusque. And his response to the "What would you do?" questions -- What would you do if you saw someone lying on the ground and bleeding? -- was disconcerting. Max simply stared at the interviewer and refused to answer. Secretly, I knew he thought she was dumb.

It was decided that Max would go to a special "developmental" program, where children who needed extra readiness went. He was delighted. Every day, he boarded a small blue bus and rode to the preschool along with children who used wheelchairs and service dogs. When I asked him about school, he said it was great. Midyear, the teacher reported that Max had taken over a section of the class and was leading them. Like clergy, from what I could tell.

By the time he got to kindergarten, Max's social skills had more or less leveled out. He was able to join in the regular class and again, he liked going to school. I was busy with a new baby and hugely relieved. Around October, Max began talking nonstop about his best friend, Johnny. Every night I heard about Johnny and all the things they'd done together. Recess, art, even chess. When I suggested that Max ask Johnny over after school one day he was very excited. He came back and told me Johnny could come on Friday; it had been arranged through the teacher.

Friday came and I picked the boys up after school. It was wintry that day, so they were all three -- Andrew, Max and his friend, Johnny -- bundled in coats and scarves. We got home and I knelt to help them out of their heavy things, starting with our guest. As I unwound him, Johnny emerged. Mute, vacant eyes staring into the distance, fingers flexed back as if he were trying to avoid touching the air.

Max herded both silent boys into the bedroom to play, calling their snack order over his shoulder as he went.


It is, in some sense, a coincidence that each of my novels -- the one I published in 2005 and the one that's coming out in June -- features an oldest child with a disability. The first book was drawn from my own life but the second was based, in part, on a friend's.

The set-up, which I stole (with permission) from her experience is this: Young woman marries rashly then realizes quickly that she doesn't love her husband and should leave him, but is stopped by the birth of a Down Syndrome child.

As I wrote them, I thought of both books as stories about the parents. Certainly, this has been my experience: the pain and sense of loss that comes from wanting more for your child than circumstances will allow. But the messages and letters I get are increasingly from siblings. They relate to the so-called "normal" children in my books, or to the particular pressures in the family. They are drawn, it seems, to literature that recreates their childhoods -- just as Max was drawn to that lone autistic boy.

Sometimes, it comes incidentally. Recently, I got a fan letter from a young man living in Los Angeles (not traditionally my target readership: young, male or west coast). He said many nice things about my writing and told me a little about himself, then summed it all up with, "I also have an autistic and mentally retarded brother whom I grew up with and who now lives in Pennsylvania. I await the publication of The Forever Marriage, which I will buy when it becomes available."

More often, the link is direct.

Your book spoke to me and was important in ways that very few novels have achieved in my experience," wrote the editor who acquired The Forever Marriage. "Carmen had many aspects of my mother, actually-she also had a learning disabled first child (a son too, with Williams syndrome) at a young age and I definitely think your book made me understand her a little better. I know many others will feel the same way.

I genuinely hope this is true. Because the people who are talking to me today often are in their 40s, 50s, even 60s, still haunted by the burden they will carry -- literally -- from cradle to grave. And I'm only beginning to understand how changed they are... how many of their choices are governed by the strange mirror of their afflicted siblings.

"How can I go to college?" Max asked me on the day he dropped out of UW-Madison, just three months into his first semester. "It's not right. Not until Andrew can go."


In 1990, back when autism was said to affect just four in 10,000 children, Sue Miller published a book called Family Pictures that has been, in many ways, my literary guide.

The premise of the novel was pretty stunning: A psychiatrist and his wife, raising a family in Chicago in the 1950s, have an autistic child. This was the period when Bruno Bettelheim ruled the University of Chicago and the field of autism with his "refrigerator mother" theory. Autism was blamed directly on maternal ambivalence. In Family Pictures, the wife, Lainey, buys into this and goes nearly insane.

Yet, if you read carefully, the story isn't really focused on Lainey, or Randall, the autistic son, as much as it is on the siblings (Mack, Lydia and Nina) who move in their sphere. It's a canny novel that slips into different voices -- first person to third person and back -- as an emblem of the liminal spaces these characters occupy and the alienation they feel.

Miller's book came out the year Max was born and I probably read it around the year he was 3. I doubt I knew it was prescient. But I recall being sad when Mack dropped out of Harvard in the novel and enlisted, rather than continue to run leagues ahead of his stunted brother. Once in Vietnam, facing battle, Mack finally felt on equal footing. He could cope only with a life of hardship, even if it was self-imposed.

But this is not -- and I've long clung to this -- the only way open to siblings. Over time, some of them develop a downright jovial way of dealing with what is, certainly, a permanent charge. For years, I've held onto and re-read a letter from a brother like this. A successful television producer and new father, he wrote to me after I published an essay about autism and violence. Here's just part of what he said:

My brother is a great fella who has many similar symptoms -- he's been diagnosed ADHD/schizophrenic and has grappled with alcoholism, drugs, violence, depression and the law in big, bad doses. I've visited him in more facilities than I want to remember. I hoped and prayed for a brother before he was born, then 20 years later that he wouldn't commit suicide. During frequent panicked, sleepless hours I bargained that if God would get him to 25, I could help him after that. That period between about 17 and 25 is hard enough for a young man without issues, but extremely difficult for someone burdened the way Richard and your son Andrew are.

Rich is now 27, and active in volunteering with the Canadian Association of Mental Health and Alcoholics/Narcotics Anonymous. He receives a disability pension, and works occasional shifts with local shops and seasonal tasks. He has his own apartment near my mom, but he's mostly independent. I just wanted you to know people like him have brothers like me out here, ready to help however we can. Say hey to Andrew for me.

It's the line "brothers like me out here, ready to help however we can" that makes me teary every single time. I imagine them like an army, these brothers. Always, forever, standing guard.