RJS: His birth mom was very poor. Her husband had left her. She had very serious drug and alcohol problems, was perpetually homeless or living in very, very subpar housing, and was working on and off as a prostitute. I mean, it’s difficult to speak about because—when DJ was attacked in foster care, it later became apparent that he had been sexually abused as well.
JFB: Had you always wanted to be a father? Or had you decided—long before that moment when DJ banged his forehead against yours—that being a parent was not for you?
RJS: I had, and still have, a terrible relationship with my own father. I was pretty convinced that I didn’t want to have children. The notion that I would father an autistic child, I mean, fatherhood? Are you kidding me?
JFB: And yet suddenly you’re the father of a severely autistic boy. How did you figure out what to do?
RJS: First of all, my wife is absolutely amazing. She knows a ton about autism, but more than that, she’s got a kind of Buddhist, still-water-runs-deep kind of calm. Having her model a way to act with DJ was really, really important.
Let me be clear: This is the hardest thing I have ever done. It’s been incredibly demanding; it’s involved enormous sacrifices. But it’s also been the richest thing.
DJ has had a life, and that life sustains us.
JFB: He’s had a life because of you.
RJS: I don’t want to sound like some sort of super-good person; I’m radically imperfect. But sometimes I think about where DJ would be now if we hadn’t adopted him. I think about all of the kids our society writes off as having no potential or as being unworthy of love.
Last June my son graduated with highest honors from Grinnell High School and is now off to Oberlin; at six he had been labeled profoundly retarded.
JFB: How did you teach him language?
RJS: Imagine a sentence in which every word has Velcro on the back and a word bank to the right of the sentence. Emily would start very, very simply with a picture of a car—a yellow car—whose caption read, “The man got into the _________________ car.” The word bank would contain the words yellow, red, and green. Emily would pick up the word yellow and place it in the blank, pointing at the photograph and modeling both the cognitive and motor actions. She would then have DJ do this. Every object in our house had a photograph, a computer icon, an American Sign Language sign, and a word attached to it. We wanted to immerse DJ in a signifying universe. To say that it was slow going would be an understatement.
But when he finally cracked the code of reading in the third grade, he moved like lightning. Later, he said that the feeling of picking up the Velcro-backed word and palpably putting it into the sentence helped him.
JFB: Could you tell the story of the trampoline?
RJS: We began to sense the degree to which DJ seemed to learn more quickly if he was in motion. I convinced Emily to buy a fourteen-foot trampoline with a netted enclosure. First and foremost, it was a way to wordlessly bond with him and, frankly, to tire him out so that he would sleep at night. Later, we would tie words to the netted enclosure and really make the jumping an affect-laden, cognitive learning activity.
I ended up building an indoor trampoline house after we moved to Iowa, where the trampoline is level with the floor. It’s a six-hundred-square-foot building heated by a woodstove. We jumped every single day, all through the winter.
There’s a karaoke machine, which of course has words on it, and we would sing the songs while jumping and try to get DJ at least to hum them. To this day, he talks of how important that was.
Something about the regular rhythmic bouncing, the proprioceptive input the trampoline gives his body, stabilizes or calms the sensory distortion. It’s as if he were catching a performance-enhancing ride—a taxi with rhythm.
JFB: So tell me about when DJ began to use the computer to type out words and to express himself that way.
RJS: The first real breakthrough came when he was reading Jack and the Beanstalk at school. DJ had a label-making machine that he used for worksheets, and on this worksheet he encountered an open-ended question about the story’s conclusion: “What are Jack and his mother thinking?” To our everlasting shock, he typed, Where a Dad?
He was clearly using the story to ask a profound question about his birth family. And then he started getting the hang of grammar, of word choice—all of those things.
I remember DJ’s answer to the question “What is a pyramid?” A sand triangle, he typed. “What is a mausoleum?” Dead people live there.
Later, text-to-speech software gave him a sense of empowerment. He could now contribute to class discussions. It empowered him to say, “Maybe I can learn to speak.”
JFB: And he did it simply by typing with one finger, right?
RJS: One finger. Interestingly enough, I typed the book that I wrote about DJ, Reasonable People, with one finger—all 496 pages of it! I just sensed that I’d be closer to his way of seeing the world.
JFB: One of DJ’s favorite expressions is easy breathing, which reminds me of a line from Keats, from that poem “A thing of beauty is a joy forever.” That phrase came out of a stressful situation, if I remember right?
RJS: He loves the phrase easy breathing because he has lots and lots of anxiety—in part from his autism and in part from his childhood trauma. And, I must say, in part from living in a terribly stigmatizing world. It’s a big deal to try to stay calm.
His philosophy of life can be summed up by a memorable line from the sixth grade: “Reasonable people promote very, very easy breathing.” He’s sort of like an anxiety seismograph.
I remember at one point he was having some dental work done, and he had been anesthetized. He seemed to wake up very, very slowly and it was making me nervous. When he was half or three-quarters awake, he typed out on the labeler, “Easy breathing forever.” It took being anesthetized for this boy to feel at peace!
JFB: How will your life change when DJ goes to college?
RJS: I don’t think I fully appreciated until now how much I enjoy hanging out with him, conversing with him, hearing his little autistic chorus in the background. I am going to miss him terribly. We’re very close.
DJ loved the fact that Oberlin admitted the first female and African-American students in the U.S. He wanted to be its first nonspeaking student—and the first nonspeaking student anywhere to live in the dorms. He worked like crazy to get into this school, and so we said, Let’s figure out how to do it.
Look at what this kid has shown is possible.
When Dr. Sanjay Gupta asked him in an interview on CNN, “Should autism be treated?” DJ had the presence of mind, and media savvy, to type out, “Yes, treated with respect.”
JFB: What advice would you give to dads out there in the broad world? What do you know now that you wish you had known before?
RJS: Love your kid for who he or she is. Build self-esteem.
It’s pretty common for the parents of newly diagnosed autistic kids to go through a grieving process. I tell them: Don’t waste time. Your culture has taught you to believe that autism is devastating and that you’ll never get the love you want as a parent.
For Father’s Day some ten years ago—I still have the card on my desk—DJ typed:
Dear Dad,
You are the dad I awesomely try to be loved by. Please don’t hear my years of hurt. Until you yearned to be my dad, playing was treated as too hard. Until you loved me, I loved only myself. You taught me how to play. You taught me how to love. I love you.
Your Son, DJ Savarese
If I had remained attached to normalcy, I would have missed the richness that comes in another form. So love your kid. Make it a little bit less about you, and you’ll be able to relax about who he or she is.
And have easy breathing forever.
TREY ELLIS
Courtesy of Trey Ellis
How can a woman compete for the oceanic love I feel for my two soft miniatures?
Trey Ellis is the author of three novels, including Platitudes and Right Here,
Right Now, which received an American Book Award. A professor at Columbia University, for years he wrote the Father of the Year blog, about his experiences as an African-American single father. We first met in 1981, when we were both young writers working on American Bystander magazine. Thirty years later, on the night before Ellis’s forty-ninth birthday, we met in the Columbia Student Union, two old friends surrounded by young people.
JENNIFER FINNEY BOYLAN: Do you remember American Bystander, you and me and all those young writers, the early eighties in New York? The magazine that was supposed to make us all rich?
TREY ELLIS: It was funded by the original cast of Saturday Night Live.
JFB: Although we never saw them. I met John Belushi one time. I remember I went to the editor’s house, and Belushi was there. And he threw me up in the air, and he caught me. And he said, “There you go, kid,” and then he left. That’s my whole memory of John Belushi, being thrown in the air.
TE: Well, at least he caught you.
JFB: Our friendship was the friendship of young men in their feckless twenties; there was so much we didn’t know about the world. Back then, were children on the radar for you? Did you always think to yourself, “Someday, I’m going to be that guy who’s going to have a great family”?
TE: No, I didn’t. My own parents fought all the time. The house was just a sad, crazy, dysfunctional marriage. I never saw them once kiss.
So, I never had a real relationship to observe and model after when I was a kid. I just invented relationships, these perfect things, in my imagination.
JFB: Is that how you became a romantic?
TE: I’m a sap.
JFB: Did that make it harder to find a relationship, after your wife left you, and you found yourself a single dad with two tiny children?
TE: Yeah, because, in some ways, there’s something infantile about sappiness. I started dating so late that everything was all virtual for me. The romantic has blinders to the complications of life and thinks, Yeah, I should be able to find a woman who is just perfect and everything is uncomplicated. She’s a great mom, and she’s great in bed, and she’s a great cook.
But life isn’t like that. That’s part of growing up. With my new wife, it’s like the Grace Jones line, “I’m not perfect, but I’m perfect for you.”
JFB: In your memoir Bedtime Stories, you write about the loss of your first marriage and about your time as a single father after the divorce. But there’s a fairly long stretch in the middle when the marriage seems doomed—at least to your readers—and you’re still trying to make it work. You make room for her new Rasta boyfriend; you try to have an “open relationship.” I thought of the line in Thurber, “Sometimes it is better to fall flat on your face than bend over too far backwards.”
TE: My friends resented her much more than I did, or do. She would tell the kids, “I still love your father.” She wanted to have this kind of open, polyamorous thing where she could just sort of float in and out.
JFB: So it was like what? Divorce with benefits?
TE: Yeah. But everything I’ve read suggests that children of divorce do just as well as any other kids if the parents don’t fight each other. So I said, “I’m not going to fight. I’m not going to tell them their mom is crazy.”
JFB: Later, after you did divorce, you entered a vulnerable, painful, hopeful period when you were mourning that loss, but also trying to find a new relationship.
TE: It was really tragic. I cried a lot. When it got better, I was looking like an African chief. Or a Mormon polygamist. I had all these different facets of women around my life.
JFB: And all of them were trouble.
TE: Yeah, because I made a lot of terrible mistakes. Making mistakes when you’re single is different than when you make them when you’re a parent.
JFB: Was it like there were like two Treys? There was the one who was the hound, looking for these beautiful women that you could make love to? And the other Trey who was trying to protect your children, was trying to be a good dad?
TE: It wasn’t like being a hound. It was more like I really wanted to be in love again. I didn’t just want to get laid indiscriminately. I idealized my old family, my old nuclear family. I was looking for someone to put in that piece.
Often, if the women I was meeting had children before, I didn’t date them because I was really specific—and really opinionated—about how I raise kids. I thought bringing a woman into our family with her own kids and her own parenting style would be too much.
There was a woman I liked, before meeting Amanda, that was really nice. I think part of my appeal to her was that I was real authoritative with her boy. He was a little troubled, maybe ADHD or something, and about the same age as my son. I didn’t know if I wanted to raise a family with that boy in the house with my perfect son and daughter.
What I really wanted was someone to come in and be the nanny. Someone who would just do what I say in terms of raising children.
In the end, none of that worked. And now, years later, I’m remarried to a woman, Amanda, who had her own very young child. So all the stuff I ran away from, I realize now it didn’t make any sense.
Now that I’m married again, and I’m a stepfather with a five-year-old, it’s hard for her to say, “Dad.” She’ll say, “Trey,” and kicks me and fights with me all the time. She won’t say, “I love you.”
JFB: Did you feel like you had to win her over? You won her mother, but now you have to win over the daughter as well?
TE: Yeah. I keep trying that. And when she plays hard to get it makes me try harder. It makes her kick me more and be meaner to me.
Then, when I pull back, she climbs up in my lap and hugs me. I should realize that I’ve already won her over.
JFB: You have a son, Chet, and a daughter, Ava, from your first marriage. One of the things that you wonder in Bedtime Stories is “How can a woman compete for the oceanic love I feel for my two soft miniatures?”
And I would think that that’s kind of the central problem for a dad who is also dating. You’re looking for a particular romantic love at a time when to some degree, your heart’s already full.
TE: There was a woman I dated—a countess!—who wanted to be the center of attention. She wanted a man that would just do anything for her. And I would do a lot of things for her. But I also had to do things for my children.
There’s such a difference between the sexual romantic love and the unconditional love for your kids. There’s no sense, especially after you’ve been divorced, that you can divorce your kids.
JFB: Although lots of men do something like that. I was talking to Richard Russo about his father, and at a certain point, he was just gone. He told Rick, “I never really cared about you at all. The track was there.” I think lots of men divorce their kids.
TE: That was not a possibility for me. Being chained to them forever, in some ways, means you just accept them in sickness and in health, until death do you part, in a way that marriage really isn’t.
JFB: There’s a moment early in your memoir when Chet calls you “Mommy Daddy.” And it was a moment that, of course, made me think. You were Daddy, but you were Mommy too? How did your role change when you became a single father?
TE: It did, and it didn’t. As a relatively modern and progressive dad, it wasn’t just that I was the car seat and my ex-wife was the breast-feeding. I was changing diapers and massaging and bathing and a lot of stuff that men a generation ago didn’t do.
We were very conscious about these gender roles. But it also was an excuse for my ex-wife to do less work, frankly. Before she left I was doing sixty percent; eventually I ended up doing ninety percent.
JFB: When you were dating, did women find the fact that you were this caring, awesome father a turn-on? Or was it, “Oh, he’s got kids. Forget it.”
TE: There’s a thing called mommy porn. I used to—
JFB: What did you call it?
TE: Mommy porn.
JFB: Which is?
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sp; TE: You know, when they see a guy holding a kid in a Snugli or something. Or, like, a guy with a drill that was going to do all this stuff around the house.
JFB: Did it ever work the other way? Was there some kind of racist condescension where people would say, “Oh, good for you for staying with them,” as if it was just assumed, well, of course, the expected thing would be to leave? You write that African-American men of your generation “are better known for their absence than their presence.”
TE: Chris Rock has this line: “Hey, I take care of my kids.” But you’re supposed to take care of your kids. What do you want? A cookie? There are such low expectations for black fathers. On Mother’s Day, I used to walk down the street, just me and the two kids, and people would look at me and say, “Hey, happy Mother’s Day.” I would get that a lot.
Sometimes, I dated women in their thirties. And some of them were like, “You’ve got an instant family. You’re a good dad. Let’s get married.” Just like boom. “I’ll take care of your kids.” They were sick of the younger guys who hadn’t settled down yet. Other women I dated had their own kids. They wanted to blend families in ways I wasn’t ready for.
Then I met Amanda, and I just thought she was fantastic. And she had this very young child. And just the way we all came together was really nice.
JFB: If you knew, when you were a young man, that this is the thing that you would find, that this life is the one you’d be given—do you think you’d have been happy? Or did it take the experience of living your life before you knew that this is what would make you full?
TE: I think that there are many different paths that I could have taken that would lead me to happiness. I love being a parent. But I also see friends without kids, who kayak together and travel the world together. They have a very different kind of best-friend, sexual adventurous relationship together.
If I hadn’t had kids, that wouldn’t be a terrible way to live either. You know, I think that you get what you get, and it keeps changing. What I have now is magnificent. It’s wonderful, but I don’t think it’s the only way that would have gotten me to this place.
Stuck in the Middle with You Page 8
