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« The Taste of Thusness | Main | What Kind of World Do We Want? »
Thursday
Aug042011

The Daughter I Love

Photo by Sharon HoloviakWith the help of Thich Nhat Hanh’s teachings on emptiness, Stephen Holoviak realizes that to fully know and accept his autistic daughter he must let go of his hopes and dreams for her.

Our daughter, now thirty, is autistic, nonverbal, and has pervasive communication issues. She was an infant when diagnosed in 1981. Back then there was little knowledge of autism, even among health care professionals, and not much in the way of support.

There was never a question of our being committed to our daughter’s well-being and proper care. But physical care doesn’t fill the void each of us feels—even those who struggle with conditions like autism. My wife and I soon learned that our journey to raise her in the way we envisioned would challenge every definition of love we ever thought possible, and would eventually lead us to the profound Buddhist teachings on emptiness.

Like many parents whose child has just been diagnosed with autism, we turned to our local minister for help. While he was empathetic, the only guidance he could offer was that it was “God’s will” and we are never given more than we can handle. Unfortunately, this offered little solace for our daughter and no help for our sagging spirits. We abandoned Christianity, along with its lure of receiving a miracle if only we prayed long and hard enough.

I had been introduced to Buddhism as a boy while living in Japan in the fifties, but had hidden it from my family because they would have put a stop to my long hours at the monastery and temple near our home, during which I pestered the monks and nuns endlessly with questions. Although I remained intellectually interested in Buddhism over the years, the problem was that I had never needed Buddhism—until our daughter’s birth.

At first Buddhism did not seem to be a path that would help us with the difficult day-to-day struggle we were immersed in as we tried to help our baby girl. But we continued to search, and found help in the Buddhist values of self-reliance and the teachings on emptiness.

During a retreat with Thich Nhat Hanh many years ago we learned about the three doors of liberation, especially the first one: emptiness. I’m sure he wouldn’t recall my questions during a walking meditation he led. It was supposed to be in silence but I maneuvered to be near him, feeling that I desperately needed guidance from a person of his immense knowledge. I later suffered embarrassment in private moments of reflection for badgering him during that walk, but his clarification greatly helped our decision to pursue the teachings on emptiness as a guiding source. He also suggested other points of Buddhist doctrine, which we employed when we faced challenges in future decades as we strived to raise our autistic daughter with dignity and respect. I am forever grateful to him for his help, and for his patience with me.

Thich Nhat Hanh cautioned that we should not look to emptiness as a philosophy, and over-intellectualize it. Instead we were to see it as a door we could go through to find help with our suffering. At first we weren’t sure about this being our suffering—wasn’t it our daughter who was suffering? But the truth was that my wife and I had experienced a great deal of mental suffering because of our daughter’s autistic condition. We saw her as “apart”—a separate entity, an imperfect, isolated girl. We realized our daughter was actually a very happy, positive, and loving person. She seemed to accept us and our troubles. It truly was more our issue.

As we came to see our daughter as she was, we began to experience her in an entirely new way—one that allowed us to see the beautiful and often funny ways that autistic people interpret the world. For example, if we ask the typical “normal” person to put their hands behind their back, they will place them on their back. Our daughter and other autistic children we observed would put their hands on their stomach. If you think about it, this is literally correct because the stomach is actually behind the back. The precision she uses or understands in language is often not only amusing, but serves to push me to be more precise in my own communications.

At another Buddhist retreat, a friend recommended we study the Samiddhi Sutra. This sutra encourages us to return to the present moment and be aware of our happiness here and now. We realized we had been putting happiness off; it was always something that would occur later, when our daughter could talk or write or do something else. My wife and I find this not only strange but nearly unbelievable, considering that we are consultants who train managers in positivism and mental reframing but had been unable to bring these aspects into our own lives. We were compartmentalizing, something we regularly caution those in our seminars not to do.

Virtually all parents have dreams for their children. For instance, they might hope their child is good-looking, is smart in school, is a sports star or cheerleader, goes to college, has a beautiful wedding, finds a fulfilling career, and so forth. We realized we had to abandon dreams like that so we could fall in love with our daughter and not our illusion of her. This involved a great deal of letting go, something we did not have to do as readily with our other children.

The dreams we have for our children are not something to be vilified, but to try to hold on to these illusions becomes an embittering process, one that gets in the way of seeing who a person is right now in this moment. With an autistic person, each moment can look very different, and if we try to hold on to the illusion of the past moment, there will be disappointment.

Loving an autistic child, we learned, often occurs in a context in which the normal feelings of parental love are not present. So we may find ourselves acting lovingly as a parent even though we may not really feel loving. There is a difference, and we knew that if we did not explore this, along with our illusions, we would just be going through the motions of parenting, and our daughter would sense this.

Despite her autism and the sense of indifference she may show at times, she is aware of how people feel about her. We needed to transcend our bitterness of letting go of our dreams and find a way to be with her as she was, lovingly and without pitying her. Eventually we were able to join her world and enjoy it, and to our amazement, over the years she began to display more reciprocal emotion. One example was when she learned to ride a bicycle. We enjoy bicycle riding as a family, and she wanted to join in. The medical community and health care professionals discouraged us from trying to teach her to ride a bike, fearing that autistic people were unable to focus enough to handle the gears and not run into another rider or pedestrian, plus a host of other reasons. We searched the literature for any evidence of attempts to teach autistic people to bike that had resulted in repeated failure, but couldn’t find any. Nor did any of the medical professionals we spoke to have first-hand experience with this. It was simply an unfounded belief.

This didn’t mean that teaching an autistic child to ride a bicycle would be as easy as it would be with some other children. With no preconceived benchmarks of achievement, we entered her world of fun, and went moment by moment with her through this experience. It was quite a discipline for us, like a moving mantra to keep our sense of the positive and fun throughout the process. She is now an accomplished and safe cyclist, and we share many great days of riding together on local trails.

The process of growth we pursued has yielded a belief that nirvana is available this very moment, and every succeeding moment. Our nature is not different from the Buddha’s. Moment-to-moment awareness offers us a way to experience this. Intellectually, we enjoyed debating and pursuing the doctrine on emptiness. But being immersed in our daughter’s world and having to let go of our illusions made it more than an intellectual exercise. It made the teachings come to life. Without our daughter, I believe I would have remained an intellectual Buddhist fighting my illusions, never experiencing where letting go of them could lead. Cycling may not be the best example, but it was one of the ways we made the process real, bringing it off the pages of a book and transforming not only our daughter’s life but the lives of many others.

Our daughter’s journey is exciting, yet it can still evoke states of depression within us. One moment she may display subtle insights and awareness, and in the next we may feel some embarrassment because of her lack of social awareness, or rage because of how she is being treated by members of society. It’s easy to slip into negative and frustrated thinking. During these times we are reminded of the real value of the discipline of meditation.

There is no Disney-movie ending here. This is an ongoing story of trying to remain present in each moment, no matter how difficult, and finding help from an unexpected source—the dharma teachings on emptiness.

 


Stephen Holoviak is a professor of management at Penn State University, Mont Alto, and the father of four children, one of whom has autism. He lives in Chambersburg, Pennsylvania.

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Reader Comments (2)

dear steve and family, thank you for your article. it was very good for me to read as i had an autistic daughter for 12 years until she died . During this time and after we experienced the whole range of emotions that you speak about. i congratulate you for finding the dharma to help you. i was not so fortunate as i only discovered the healing power of the dharma after my baby was gone. This time of intense suffering has radically changed us to the point where we could not understand or sympathize with everyday people leading their everyday lives. we recieved little or no help from our organized religion and had discarded these as useless. Your experience with the dharma and your daughters condition would be hugely valuable for other parents who are facing similar experiences. It was only when last year , i happened to hear Thich nhat hahn on the youtube teaching Buddhas wisdom on suffering did i really start to heal , both mentally and physically. Once again thanks for your article ,Nick

February 4, 2012 | Unregistered Commenternick parker New Zealand

Beautiful post, showing that the Buddha's teachings can be applied to all situations no matter how grim they might appear. The article made me tear up with hope for your family. Thank you for posting such a wonderful article.

January 6, 2013 | Unregistered CommenterRyan

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