Thursday, January 16, 2014

Sitting in judgment

In October, New Jersey State Supreme Court Justice Helen E. Hoens (right) stepped down, saying she developed the qualities essential in a judge by raising her son Charlie (left), who has severe autism. Here she writes about how living in the ‘margin-world of autism’ prepared her for seven years on the bench.

By Helen E. Hoens

The New Jersey Supreme Court is the highest appellate court in the state. Once we decide an issue, there are no more appeals and nobody to overrule us. The game, as they say, is over, except for the rare case when the United States Supreme Court thinks it needs to weigh in on the subject. That happened precisely once during my seven years as a justice.

Not only does our court have the final say for the folks whose cases we hear, but our decision ends the dispute for everyone else in New Jersey. That’s nearly nine million lives instantly affected by whatever we write. But it’s even bigger than that, because although we’re only one of 50 states in the U.S., history has proven time and again that once we decide an issue, other states follow our lead.

Pretty weighty responsibility, this business of being a justice. For me, it capped off nearly a decade and a half of service as a judge in our trial and appellate courts and nearly as much time earlier in my career practising law.

The story of how I was chosen to serve as a justice, when there were maybe 70,000 lawyers in the state who might have been picked instead, is a pretty interesting tale. But it’s not nearly as interesting as how I managed to pull off that feat while being Charlie’s Mom.

Because that is who I am.

Not Helen Hoens, the noted trial lawyer and mediator. Not Judge Hoens, the respected Superior Court Judge presiding over trials in cases ranging from medical malpractice to land use and defective building construction to contests over guardianships and estates. Not even Justice Hoens, the acknowledged expert in complex areas of law, prolific writer, popular lecturer and gifted speaker.

In the end, all I am is Charlie’s Mom.

Charlie is nearly 30 now, safely ensconced in a group home and working in an adult program. Today, as a grown-up, he’s happy. He loves his home, and why wouldn’t he? He goes cross-country skiing, enjoys trips to the beach, sees movies, works out at a gym. Oh, sure, there are household chores and there’s work during the day. Sometimes it’s cleaning the movie theatre or helping to make jewelry that gets sold in real stores; sometimes it’s recycling or shredding.

We see Charlie frequently and that ranges from short visits to his house or taking him out to dinner to extended vacations and cruises (he likes the endless food and side trips on little boats to the beach). As a mother, I am immensely joyful that my son is so happy and it gives me great peace to know that he’s also safe and well-cared for.

Charlie is completely non-verbal and has only rudimentary communication skills. But he’s a pretty cool guy, or so they tell me, and he has a pretty cool life.

It wasn’t always that way. For all of us, his dad included, it’s been a long, tough journey, full of dark days and sleepless nights, punctuated with bouts of aggression. That’s such a polite word, “aggression.” But the English language doesn’t have a word, at least that I know of, to describe what my son was like for much of his growing-up years.

Think of a son who grew bigger and stronger than I will ever be, given over to some irresistible demonic urge, laying in wait until Dad was in the shower or mowing the lawn, only then to erupt into a brutal, rage-fuelled, full-on attack on me, and me alone. I lost track of the number of bruises, the handfuls of hair ripped from my scalp, the trips to the hospital ER. How I survived it is a story for another time.

Because although that is part of being Charlie’s Mom, although it was impossible to understand and terrifying to endure, it pales when compared to what it was like trying to deal with the way that other people in the world reacted to autism. But in the end it was coming to grips with the way the world deals with folks like my son that prepared me for being a justice of the New Jersey Supreme Court.

I did not grow up knowing much about autism, but I certainly grew up knowing that there were plenty of other folks who weren’t as lucky as I was. Folks without jobs, folks without homes, folks with physical challenges, folks with mental illness. They were everywhere, if you took the time to look, and all of them were people who deserved to be treated with dignity and respect, to be helped if you could, by reaching out, helping, giving and sharing.

That’s why, as a teenager, I did hundreds, maybe thousands, of hours of volunteer work. I even won a prize for writing an essay about looking beyond somebody’s physical disabilities to see the person inside.

That life ill prepared me for being the mother of a son who was profoundly autistic. Never mind the scarcity of programs and lack of educational opportunities, never mind the fact that autism was little known or little diagnosed back then; the hardest part for me was that I suddenly found myself in a world far different from the one in which I grew up.

The reality was that I had become the mother of one of those “others” who were different. Worse, I found that there weren’t a whole lot of folks who were reaching out, helping, giving and sharing. And being treated with dignity and respect? Not at all.

Instead, I discovered that I lived in a society in which, when people saw my son and me at all, they merely glanced before turning away and hurrying by, as if looking at us too long or too directly might infect them with our misfortune. I lived in a world that consigned both me and my son to its margins. But it is my life there that made me who I am.

And just who am I? When I joined, and more recently when I left, the New Jersey Supreme Court, our newspapers were filled with stories about a long list of qualities that others have said suited me so perfectly for my work on the court, qualities like patience, compassion, strength and courage. But what they didn’t say is that each of those qualities came from living in the margins with my son.

Patience? I learned that sitting with Charlie, endlessly repeating the steps, one at a time, involved in brushing his teeth, or combing his hair, or putting on his underpants front-forward (he never got that one). While other kids master those skills and more almost without being taught, I learned to stay patient as my son crept snail-like toward the ever-elusive goal of being able to do the simplest tasks of daily living.

Compassion? I learned that while wrestling my son to the ground in the grocery store when he flew into a rage because he cannot wait in line, or while tackling him as he tried to grab somebody else’s lunch because ours didn’t arrive quickly enough to suit him. For somebody like me who always thought you had to be a pretty lousy parent to have a kid who shrieked or lunged in public, living with my son taught me to see others with compassionate eyes.

Strength? I learned that when another mother phoned in the middle of the night begging me to use my lawyer skills to get her autistic teenager out of the psychiatric ward and into a non-existent placement in a newly opened residential program, because she knew that in this margin-world of autism, I was pretty much the only one who could. So I summoned up strength and did it. For free.

Courage? I learned that when I saw that the world will always prefer to avoid looking at people who are different, who are needy, who make regular folks uncomfortable. I learned that when I realized that as long as we are willing to remain silent, we will stay there in the margins. Because, truth be told, I have never left that life in the margins.

Maybe that’s why, seven years ago when I took the oath of office and joined New Jersey’s highest court, reaching the stratosphere of my chosen profession, I grabbed the chance and publicly pointed to my son as the person who taught me all the things that others said made me a perfect choice. That took all the courage I had, but they say it opened eyes and changed things, at least for a time, for people with autism and their families in New Jersey.

Life with my son, life in society’s margins, has never been easy. But it is this life with him that made me who I am and paved the way for what I have become.

In the end, it is all that I am.

Charlie’s Mom.

Helen E. Hoens speaks on a variety of topics related to parenting children with disabilities. She can be reached at The photo above is by Charles Schwaneberg (Charlie’s dad). Photo below by The Star-Ledger, Newark, NJ.


This is an amazing story! Her truth, simplicity, and humbleness are a model for all. c

New Jersey is lucky to have you, as is Charlie.

As a teacher, it is inspiring to listen to this amazing woman and her story... I am forever grateful!