Easy Breathing: How my Autistic Son Taught Me How to Live
“The first time I met my son, DJ, he grabbed me by the pointer finger on my right hand, took me to the couch, and started banging his head against my head — not hard, but not soft either. . . . We performed this bighorn ritual for twenty or thirty minutes. Years later, when he was literate, he explained, ‘Dad, I was trying to say hello.’”
Ralph James Savarese is the author of Reasonable People: A Memoir of Autism and Adoption. He lives in Grinnell, Iowa, where he is associate professor of English at Grinnell College. This conversation with Jennifer Finney Boylan took place in 2011 as part of Jenny’s book on the diversity of families, Stuck in the Middle with You.
Jennifer Finney Boylan: Your son is one of the first nonspeaking autistic people to go to college — Oberlin, in fact. Tell me the story of how he took the SATs.
Ralph James Savarese: It was the ACTs, actually. Because he’s a nonspeaking person with autism whose senses are poorly integrated, a person who can’t always locate his body in space and who has great difficulty with fine motor activities, we had to negotiate with the testing service to have each multiple-choice answer bank enlarged so that he could point independently and unambiguously at the answer.
He consumed two-thirds of the extended test time besieged by anxiety; he knew that the test would have a great impact on his future. When at last he stopped fidgeting and compulsively sharpening pencils, he moved through the questions rapidly. By February of the following year, he was accepted early decision at Oberlin College.
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.
JFB: So let’s back up ten or twelve years. How did DJ come into your family? How did you come to adopt him?
RJS: My wife, Emily, was the assistant director of the Center for Autism and Related Disabilities at the University of Florida. In that capacity, she had begun to work with DJ. One night he and his sister were found on the street looking for food. DJ was about three and a half years old, his sister four and a half. The kids were taken from their mother, who had serious drug and alcohol issues. The sister went to live with their mother’s sister, and DJ, who was already in a five-day residency program at the hospital, went to live with a foster parent on the weekends.
A few weeks into his foster placement, Emily asked if I would play with him. He really wasn’t doing well, she said.
The first time I met my son, he grabbed the pointer finger of my right hand, took me to the couch, and started banging his head against my head — not hard, but not soft either. In the background Emily was mouthing, “Go with it,” because she’d never seen him reach out to somebody.
We performed this bighorn ritual for twenty or thirty minutes.
Years later, when he was literate, DJ explained, “Dad, I was trying to say hello.” The pressure of his head on my forehead had allowed him to take me in.
The sensory stuff in his kind of autism is just overwhelming. After the adoption, I remember trying to wash his hair. He screamed at the top of his lungs. His scalp was incredibly hypersensitive. And yet he could swallow Tabasco sauce as if it were water.
The notion that I would father an autistic child, I mean, fatherhood? Are you kidding me?
JFB: So how did you go from a moment where you’re first encountering this child to thinking, We should make DJ part of our lives; we should be his parents?
RJS: One night — it was Emily’s birthday — we received a call from the Department of Children and Families saying that DJ had been terribly injured. DJ’s caseworker asked if we could come to the hospital because they weren’t legally allowed to ask the birth mother to the hospital, and the foster mother was under investigation.
I should say that Emily and I had just taught DJ his first communicative gesture: the American Sign Language sign for more. I would tickle him, make the sign for more by bringing the first three fingers on each hand together, and wait to see if he could copy me. One day, after much repetition, he did. He thought it was hilarious that by putting his fingers together he could get me to tickle him.
So we went to the emergency room and there’s this little boy, unbelievably bruised. His ear had been kicked inside his head; his ribs were black and blue. Somebody had savagely attacked him.
He looked up — he was making high-pitched gerbil sounds that I don’t ever want to hear again — and, seeing me, he made the sign for more. He wanted to be tickled. He wanted, I think, some kind of normalcy in the midst of his horror, and he wouldn’t calm down until I tickled him. Later, I realized that he wanted more of us, indeed more from us.
A month shy of his sixth birthday, DJ came to live with Emily and me.
JFB: Now I know this is a painful question, but could you talk about what DJ’s life was like before the age of three?
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.
