Making It Last: AUTISM STRAINS YET STRENGTHENS A MARRIAGE
by Stephen Petrow and The N.Y. Times
Last summer, Nancy Clarke, 54, and Jay Petrow, 53, celebrated their silver wedding anniversary with family members in the backyard of their Westport, Conn., home. As Jay’s brother, I was best man at their 1987 wedding at our parents’ house in Southampton, L.I., and since then have watched as he and Nancy have taken on an extraordinary challenge — raising an autistic and seriously disabled son, William, who is now 19.
For two decades Jay worked “10 to 10” as a magazine art director, and then five years ago decided to make a new beginning, starting a landscape design company. Nancy, a Princeton graduate and former Wall Street trader, became a stay-at-home mom after William’s birth. They also have a daughter, Anna, who’s 15. Following is a condensed and edited version of our conversation about their marriage.
Tell me about the first kiss.
Nancy: We spent a weekend together with 10 other friends, which was the first time we met. I thought Jay was different — more approachable, someone I could be friends with. The ride back to the city took eight hours and it would have been much easier for Jay to drop me off first — I just thought he was being sweet by making me the last. As I was about to get out of the car I leaned across to give him a kiss on the cheek, but somehow the corner of my lip hit the corner of his lip and I got a jolt. It was like “Whoa!” and all of a sudden the weekend took on a different meaning.
Jay: She still tries to re-enact that kiss every time. There was definitely electricity.
A year and a half later, Jay proposed. How did that come about?
Nancy: I had been getting a little impatient and I asked him if it’s appropriate for women to ask men to marry them. He said, “Maybe, but I wouldn’t do that if I were you.” So I just let go of it.
Jay: I told her: “When I’m ready to get married, I’ll ask you. I don’t want you to ask me.”
Nancy: The night before my 29th birthday we went out to the River Café [in Brooklyn] and had a nice dinner. Afterward he got down on his knee and proposed. I was so stunned that I burst out crying.
Jay: I decided I didn’t want to live without her.
Not long after, you both quit your jobs. Were you crazy?
Nancy: We had been married for about three years when we decided to take a trip around the world — 20 countries in 14 months. This was an adventure I had always dreamed about, but I was so serious, making money, on “track.” Jay bumped me off the track.
Jay: We really wanted to see the world before the complexities and limitations of life engulf you, to step out of the normal routine of working hard, retiring and dying.
Eighteen months after you returned, William was born. Things didn’t work out according to plan, did they?
Nancy: From the start everything was so hard with William. He didn’t latch on. He didn’t sleep. I’d held a lot of babies before, but it was so hard for me to hold my own; he just didn’t koala into my own body. And then he started his head banging, out of frustration because he really couldn’t communicate at all. Sometimes at home, other times in public.
Jay: You could just hear his head hitting the wall and the floor so that —
Nancy: — it created swelling and bruising. I couldn’t bear to watch it and I couldn’t stop him from doing it. I felt humiliated and like a failure.
Jay: Just after he turned 2, our neurologist told us he wasn’t “right” and likely never would be, that we had a big job ahead of us. I’m the kind of person who usually thinks things will work out, but now I was devastated. And I certainly didn’t understand all the stresses it would put on our marriage. William always demanded so much time and attention that it was hard to find balance and passion with each other.
Nancy: I remember leaving the neurologist’s office on the Upper East Side after he had given us the news, pushing William in the stroller and just sobbing. My older sister Susan was with me and she kept saying, “It’s going to be O.K.,” and I told her, “No, it’s not going to be O.K. This can’t be fixed.”
That was a long time ago. What’s William like now?
Jay: Every night he wets himself, sometimes two or three times a night. He’s 19 and man-size now. He also continues tantrums. Three years ago we had to call the local police because he got so angry and started throwing furniture around and broke the glass on the front door.
Nancy: Last night William unplugged all the wires to the Wii, VCR, stereo and DVD player that take hours to connect.
Jay: It’s unrelenting when he becomes manic and just keeps coming at you. “Do you want to play Wii?,” sticking the remote in your face. “Where’s the train? I want the train.”
Jay Petrow and Nancy Clarke, 25 challenging but rewarding years later.
Nancy: I could see Jay was beside himself so I jumped in. Now when we’re in the midst of a terrible situation like this, I know that it’s going to be O.K. because we have each other.
Was there a time when you didn’t think it would be O.K. between the two of you?
Jay: I never wanted to get divorced, but the stresses got to be too much. I felt like I couldn’t stay in our situation. Part of it was William and part of it was how stressed out Nancy was.
Nancy: I remember when Jay said: “Maybe we should consider a divorce. It just hurts so bad. I’m in pain.” He also said: “If I were going to war I would want you to be in the trench next to me, but we’re not soldiers, you’re my wife.”
How did you get past those tough times?
Jay: We try not to think about what our lives could have been — what we’re missing out on. Rather we focus on what we have, especially each other. That’s really helped bring us together. We developed the ability to communicate about these issues, which really helps. So, too, does a sense of humor.
Nancy: I had to learn about balance, not a forte of mine, and that my singlemindedness about helping William had costs associated with it. That somehow, in spite of everything, we had to operate as a family, with everyone’s needs taken together. This was and is still very difficult to manage.
Anna was born four years after William. How did you have the courage to have a second child?
Jay: That was probably one of our hardest decisions because autism does have a genetic component. We were scared that we’d have another child with special needs, and that would have been pretty devastating.
Nancy: Brave and stupid are flip sides of each other. With Anna, I realized what a leap of faith it is to have a baby.
And how did she turn out?
Jay: She did have special needs — she was in the “gifted” program during elementary school.
I know William brings you joy too, I’ve seen it.
Jay: William is usually the life of the party — at weddings and bat mitzvahs — he loves to dance and often “gets down” with the bride. He’s got certain music that he loves to sing to — Wilson Pickett, Tom Petty and David Byrne. He croons like Frank Sinatra, has the passion of Gladys Knight, is so full of life and joyful that it just makes me happy and proud that he’s my son.
I know you’ve been remodeling the house you’ve lived in for nearly 20 years. Is that a metaphor for your relationship?
Jay: No, not at all. I pushed for the house remodel after Nancy’s sister, Susan, died from pancreatic cancer two years ago. She was only 54. I said to Nance: “We might as well do it now because we could be dead tomorrow.”
Nancy: Susan’s illness was really life-changing for us. Before that, it had been very difficult for me to leave William. But when she was diagnosed I knew I had to be with her. I looked at Jay and said, “I need to go.” He said, “I know.” She died four months later, and that time together was the biggest gift anyone could ever give me. My Aunt Mary always used to say, “Oh Jay, that’s my angel.”
What exactly did she mean, Nancy?
Nancy: He’s made of good stuff. He’s just always completely there for me.