Grief and Celebration: Loving a Special Needs Child

By Jim Autrey and Sally Pederson

 
Sally and I were married in 1982. Three years later, when our son Ronald was two years old, we knew something was terribly wrong. His subsequent diagnosis of autism, and my response to that diagnosis, changed everything in my life. Not only did it accelerate my process of awareness and consciousness, it profoundly changed my priorities. I was a highly paid senior corporate executive at Meredith Corp. and even had thoughts about becoming CEO some day. Instead, as I watched Ronald’s struggle to find his place in the world, I realized that I couldn’t do this anymore. I couldn’t keep traveling twenty-two weeks a year. Sally and I sat down and agreed that as soon as we had saved enough that we could get by financially, I would take early retirement.

After Ron was born, I had planned to go back to work at Meredith as a food editor, but spending my career creating more recipes no longer had meaning for me. I had something more important to do. I wanted to make a difference for people who are living with disabilities.

We came to terms with the immediate reality of Ron’s autism by simply doing what we had to do — the education, the speech therapy. I tried to communicate with Ron in ways that were not traditional, such as putting my head against his head at night while he slept and trying to visualize positive outcomes. As you do these things, it sinks in. You come to grips with it little by little. It’s not an Aha! experience. You don’t say, “Gee, I’m over the grief now.” What you say is, “There’s so much joy in this life that it overwhelms the grief.”

Jim and I realized that we had to grieve for the child who was never going to be, but there is also this incredible joy at the child you do have. Ron has been a gift in many ways. He’s also allowed me to do something more meaningful with my life than I could ever have imagined had I not had a child with a disability.

My sensitivity to the world, my approach to work, my creative writing, my relationship with my wife, almost everything shifted. Having a child with a disability creates great turmoil and conflict for some people, but it bonded Sally and me even closer. We knew that we didn’t have any personal issues that were nearly as compelling as the need to work hard so that Ronald could find his place in the world and have as fulfilling and productive a life as possible.

On a very personal level, Ron’s autism made me really appreciate my husband. He had been a very successful and prominent figure, and he was willing to set aside his needs and be extremely supportive to me, and that changed our relationship. It was very healthy for both of us. It made our love grow deeper and increased our appreciation for one another.

At the age of fifty-eight, when Ron was eight, I left Meredith Corp. so that I could spend more time supporting Sally and help care for our son. I credit Ronald with enabling me to let go of the corporate ambition and move toward a more centered and spiritual place. I realized that I hadn’t been such a terrific father to my two older sons from my first marriage. I had worked all the time and was career obsessed — it’s an old story and a cliché. Ronald’s autism gave me an opportunity to be a better father. When Sally was elected to the office of Lieutenant Governor, I realized that that was a great gift to me. The gift was for me to do all the child care, the packing lunches, the going on band trips, the cooking, the shopping, the bill paying. It became a spiritual pursuit for me — finding the spiritual in everyday things.

We traded places. I used to be the one waiting for Jim to come home from the important work he was doing out there — and sometimes I resented it. Suddenly, he was at home waiting for me. It can be very demanding and frustrating to parent a child with special needs. Sometimes I wouldn’t be home for dinner, and couldn’t even call him to let him know. If you’re the person on the other end of that, it can make you feel like the other person isn’t caring about you. The very fact that my husband took on that support role and did it in such a loving and caring way, and never showed any signs that he was resentful, was a growth experience for me. We came to the conclusion that every marriage could benefit from this kind of role reversal, because the experience helps you appreciate what your partner has been living.

I was already sensitive to disability issues and had published one book of poetry before Ronald was born. Eventually, Ronald’s situation began to find expression in my life through my poetry (see “Learning to Pray” at the end of this story). I’ve also written quite a few essays about my experiences as a father of a child with a disability. It’s a little irritating when people say, “Oh, you have a special child.” That’s their euphemism for saying a child with a disability. Even though they’re trying to be nice, “special” is a patronizing and pitying term. You realize that disability does not define you. In my new book, I have an essay called Time to Give Those Miracle Stories a Rest. I begin it by saying, “As a Christian and a father of a child with a disability, I want to say that Jesus didn’t do us any big favors by healing all those people. Because in effect, he was saying, ‘Well, you’re not perfect the way you are, you need to be fixed.’ I prefer Mr. Rogers, who said, ‘I love you just the way you are.’” The point is, we have a huge cultural bias that people with disabilities are somehow lesser people, and not as human as the people who have all of their faculties.

In the 1998 Iowa gubernatorial race, after Tom Vilsack won a very close primary on a Tuesday, he called the next day and set up an appointment to talk with Jim and me. Since I had been active in his primary campaign, he wanted to get our thoughts on what he should be looking for in a lieutenant governor. We were both on the phone and offered some suggestions about specific people he should consider and also what characteristics the ideal running mate would possess. At one point, he said, “Are you sitting down? I’d like to ask you if you would consider being on my short list of running mates.” This came out of nowhere. I laughed and said that I wasn’t a political animal. I thought it was a very strange notion, but Jim passed me a note that said, “Sally, you should think about this.” So we talked with Tom some more. I remember thinking that his short list probably had a hundred names on it and that this was simply flattery because he was never going to pick me. The next day, Tom asked if I could send him a resume and answer some questions. He needed to pick his running mate by Saturday, which was when the Democratic convention would take place. By now I’ m starting to think, “Well, if I could be his running mate, then I could give voice to the things that I care very passionately about — education, special education, and services for people with disabilities. So I tried to convince myself that there were good reasons why I should want to be lieutenant governor.

Ronald’s motor skills were, and still are, very deficient. He couldn’t walk without falling and smacking his head on the sidewalk. I wanted to protect him, to catch him and keep him from falling. My wife was the courageous one. She said, “No, we’ve got to let him fall.” We were constantly coaching and teaching him and conditioning his muscles. We spent hours with him sitting on a medicine ball, rolling him forward toward the floor, pulling his arms up and encouraging him, until finally one day he put his arms up and caught himself.

Friday night at nine o’clock, Jim and I were having after-dinner coffee with friends at a restaurant. A waiter came over and said there was a phone call for me. This is all, of course, secret hush-hush. It was Tom, asking me to come down to his campaign headquarters so he could interview me. I excused myself, went down to his office and was there until midnight. We had a great conversation and talked about our many shared interests, concerns, and values. At the end of the evening, he asked, “Will you be my running mate?” I said, “If you think I’m the best person, then yes, I’ll do it.” When I got home, Jim was asleep. I crawled into bed and said, “Well, you’re sleeping with the next lieutenant governor of Iowa.” After I told Jim what had happened, I proceeded to lie awake all night long thinking, “Oh my God, what have I done?” I was really apprehensive about what I was getting myself into and whether I was up for the job. It was a great leap of faith.

The sense of loss and grief over having a disabled child still goes on. Just a few months ago, Sally and I had a good cry together. It just hit us that there was still a long, hard road ahead for Ronald. He’s now twenty-three years old, has his own apartment, and rides a bus every day to the Drake University Law School’s legal clinic, where he scans court documents into a computer and manipulates them into a database for research by law students. He’s doing as well as you could ever expect him to do, but he is still very juvenile in his behavior. There’s residual grief that’s always hanging there, but it isn’t depressing. We have a lot of fun with Ronald; we really appreciate his talents and gifts. Still, it can be very wearing. It comes and goes, but it doesn’t come very often.

During our eight years in office, I focused on initiatives and subject areas that most career politicians wouldn’t be interested in because they weren’t the kinds of issues that would move you ahead. But I didn’t have any further political ambitions, so I had the luxury of doing what I wanted to do with the job. Fortunately, when you’re in an office like that, you confer importance on whatever issue you give attention to. We redesigned the way we deliver services to people with disabilities. We passed a mental health parity bill requiring that all insurance companies provide the same kind of care for mental illness as they do for physical illnesses. At the end of our second term, as we were leaving office, I invited people from all over the state who work in the disability area to come to the capital to be honored and thanked. A minor thing, but I can’t tell you how many people came through the line to receive their certificate and said, “No one has ever said thank you to me before.” So often, the people who are honored in our culture are people who already have status or fame or money. People who do extremely noble work for low wages and not much public acclamation also need to be honored, and I was given the opportunity to do that.

What you realize is that a person’s disability doesn’t say who he is as a human being. It is only a condition. I remember having a discussion with a vice president of human resources who had a hearing loss in his left ear. I was advocating hiring people with disabilities, and he was arguing that we would lose productivity. So I deliberately started talking in his left ear. He kept turning and I’d move. Finally, he said, “What are you doing?” I said, “You’re a pretty productive person, right? Well, I’m just trying to show you that you’re not so productive when I’m talking into your left ear. Your disability has to be accommodated. If somebody has a wheelchair, why can’t we just lift the desk three inches so they can do the work?”

Having a child with a disability changes you. It changes the way you see the world and it changes your priorities. As Ronald’s life progressed, I saw where the gaps were. Not only was there a gap for my son, there was also a gap for other children. I understood that it wasn’t enough to make sure my son got what he needed. I had a responsibility to make the system better so that every child would have the opportunity to get the most out of education and the most out of life. Ronald has had an impact on so many lives. His joyful, exuberant, trusting personality has had a big impact on people and has opened many hearts. But he’s also had an impact on people he’s never met because of the way he opened my heart and made me see that I can give meaning to his disability by helping others.

LEARNING TO PRAY
By Jim Autry

Ronald has heard people pray,
the ministers at church,
his grandfather at family gatherings,
me at the dinner table,
and he knows there’s supposed to be something important
about those words and phrases,
but he doesn’t get them right,
the prayers;
of course he doesn’t get a lot of things right.
“Grateful God,” he says,
“Thank you for my ceiling fan
and my lawn mower and my cat...”

Once for no reason I could discern,
he stopped cutting the grass,
let the mower engine die,
raised hands to face and said,
“You are a grateful God for giving me this Lawn Boy.”
And in the Lord’s Prayer he says,
“Hallowed be my name.”

I used to think I should teach him to pray
the way everyone else does
but lately I don’t know,
lately I find myself asking,
“How do I know that God is not
also to be grateful?”
Lately, I think less about God’s majesty
and more about Ronald’s struggle
to make sense of his place in this world,
never mind the next world.

Lately I hear myself praying,
“Grateful God safely tucked away in Heaven,
we are thankful that Ronald
(hallowed be his name)
has come to live among us
in order that we may learn
how to face our disabilities,
how to find joy in ceiling fans and lawn mowers,
and how to pray.
Amen.”

This story appears in Phil Bolsta’s book, Sixty Seconds: One Moment Changes Everything. To order your copy, click here.