Tough love: The challenges of parenting special needs children

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Article Marriage and Family
Having a child with special needs can test one’s faith in God and in the parish community.

As a theologian Mary Beth Walsh of Maplewood, New Jersey had studied about suffering and injustice. But not until Walsh learned that her son, Benedict, had autism did she really understand what she had learned.

“When Ben was diagnosed, my first reaction was normal—I was really disappointed and angry with God,” explains Walsh, a lecturer in theology and pastoral ministry at Caldwell College in New Jersey.

“For many parents,” she continues, “the diagnosis of a developmental disability in their child is the first thing in their life that really disrupts the simplistic ideas of God, the belief that if you are a good person, then God will take care of you.”

Parents struggle to understand why God would allow this to happen to them; some are so angry with God that they stop attending Mass. Even many parents who stay active in church have trouble understanding the faith of their own children, who often cannot verbalize thoughts or emotions. They wonder when, or if, their child will be ready to receive the sacraments.

As more children are diagnosed with developmental disabilities, especially disorders on the autism spectrum, Catholics are developing new catechetical materials and special religious education programs to help prepare these children to receive the sacraments. Pastors and parish leaders are beginning to educate themselves and their parishioners about how to better welcome families of children with developmental disabilities, but much work remains.

Many such families still stay away from Sunday Mass because they feel unwelcome and dread the stares that their child’s behavior may well attract. In one extreme case the Race family from Minnesota made national headlines when their local parish obtained a restraining order to ban the family from coming to Mass because of the disruptive behavior of their 13-year-old son, Adam, who has autism. In what the Diocese of St. Cloud said was a last resort, the restraining order was filed because Adam, who is more than 6 feet tall and weighs over 225 pounds, had loud outbursts and displayed violent behavior at church.

Life for parents of children with developmental disabilities is full of such dilemmas, though typically less extreme. And for Catholic parents, faith and parish involvement can provide not only solace but also frustration as they encounter ignorance and other obstacles to feeling at home.

Facing reality

After learning that a child has a developmental disability, says trauma mental health specialist Cherie Castellano, many parents go through stages of grief not unlike the experience after a loved one has died: denial, shock, anger, and acceptance. These stages repeat themselves as a child faces obstacles connected with later milestones such as talking, walking, going to school, socializing, or getting a job.

Castellano struggled with her own faith when her son, Domenick, was diagnosed with an unknown developmental disability at age 2. “It was really horrific at the beginning,” she says. When she went to a priest to ask for spiritual advice, she was not comforted by his reassurance that God had chosen her to take care of this child.

“I absolutely believe that God created me to be this child’s parent. I believe that now seven years later, but not at the beginning,” Castellano says. “We have dreams and expectations around typically developing children. There was some moment when I realized that this is a lot tougher than I imagined. I had to face the reality of this disability.”

After finding that secular support groups offered nothing on the suffering of the parent, Castellano began a faith support group for mothers of children with developmental disabilities at her parish, Our Lady of the Blessed Sacrament in Roseland, New Jersey. The mothers named it “And a Child Shall Lead Us” because so many found that their children lead them to God. A few parents also admitted honestly that their experiences have at times led them away from God.

“There is a feeling of helplessness, a feeling of guilt. A lot of this guilt and anger can get directed at God,” Castellano explains. “We all kind of think that we are going to do this and then get through to a brighter day.” But children with developmental disabilities get better and worse, and some do not progress at all. “Some of these mothers have stopped coming to church all together. One said to me, ‘It’s easier to not hope.’” All of the hope and prayers can cause disappointment when the miracles don’t come.

Often parents question why God would do this to them, explains Msgr. Richard Arnhols, pastor of St. John the Evangelist Parish in Bergenfield, New Jersey. He doesn’t believe that God singles parents out for the challenge of raising a child with a disability.

“It should not be considered ‘God’s will’ that a parent is given a disabled child, but it is God’s will that we all be saved, and that we are to use the circumstances of our lives to open ourselves more fully to God’s grace,” Arnhols says. “God does give us the grace we need to meet the challenges, even though sometimes it may not seem so.”

Mother Mary comes to me

After Stacy and Michelle Tetschner of Mesa, Arizona had just completed foster-parent training, their first placement was Raymond, a 5-day-old baby with Down syndrome who was left at the hospital. Stacy and Michelle, who have two older sons, eventually decided to adopt Raymond.

The Tetschners describe the joy that Raymond, now 6, has brought into the world. At the grocery store he will often go up to strangers to smile and say hello. At church, excited about the music, he encourages everyone by saying, “Sing, Mom, sing! Sing, Dad, sing! Come on! Let’s sing!”

“Raymond and those with Down syndrome are so innocent in spirit,” Michelle explains. “There is no meanness. He is so joyful. To have people smile and to have fun, that is a perfect day for Raymond.”

The couple solicited stories from people touched by those with the condition, editing them for their book, Windows into Heaven: Stories Celebrating Down Syndrome (windowsintoheaven.org). The book’s title comes from a phrase in Native American cultures that describes those with developmental disabilities as “windows to the Great Spirit.”

The couple hopes the book will be a positive resource for parents facing what can be a terrifying diagnosis of Down syndrome. Of parents who receive such a prenatal diagnosis, studies show upwards of 80 to 90 percent of them choose to have abortions.

While some parents turn away from God out of anger, Carol Spale of North Riverside, Illinois turned to God for guidance in raising her son David, who suffered brain damage at birth and has severe physical and developmental disabilities. David, now 29, put in years of physical therapy just to learn to crawl and then walk with a walker.

Even today David is frequently in pain, unable to explain its source to his parents. His mother finds a connection with Mary in her anguish: “Mary would show me how to be a mother. She had to learn to give up things. She couldn’t always help Jesus, but she stood there at the cross.

“When I got married, I asked God to please help me to be forced to love. Davey has forced us to love,” she explains. “We don’t go on vacations. We can’t be gone overnight. But we are happy. We are really happy. We try to get up every day and love.”

During Mass one Sunday Mary Beth Walsh listened as the priest talked about forming a close relationship with Jesus. Walsh couldn’t help but wonder if her son Ben, sitting next to her at church that Sunday, would ever be able to have a personal relationship with Jesus, since many children with autism have trouble forming relationships of deep attachment.

Since we grow closest to God by how we show love in our relationships with others, Walsh questioned, “Can Ben not reflect the image of God? Does that make him somehow less human?”

Walsh feared that Ben would not be interested in other people, but over the years Ben has come to love shaking hands with parishioners at the sign of peace; many parishioners know him by name. “Ben will come to know the presence of Christ through others in our faith community,” Walsh concludes. “That is how Ben will have a personal relationship with Jesus.”

“Eat! God!”

When Darcee Thomason of Portland, Oregon began blogging about her 15-year-old daughter Rachel, who has autism, on her Simply Catholic blog, she found that many of those visiting her blog were seeking information about autism and sacramental preparation in the Catholic Church.

According to the U.S. Bishops’ Guidelines for the Celebration of the Sacraments with Persons with Disabilities, a person must “be able to distinguish the Body of Christ from ordinary food, even if this recognition is evidenced through manner, gesture, or reverential silence rather than verbally.” Just as parishes don’t expect all 7- or 8-year-old communicants to expound upon the meaning of transubstantiation, children like Rachel, who may not be able to go through formal religious education, are simply asked to recognize that the Eucharist is sacred and not just a snack.

Thomason suspected Rachel understood the sacredness of the Eucharist: When accompanying her parents in the Communion line, Rachel never tried to grab a host thinking that it was simply food. Then once as the family was walking up to receive Communion, Rachel turned to her mother and said, “Eat!” and then, “God!” She then began repeating, “Eat God, eat God, eat God!” as they approached the front of the church.

“This was an incredibly unique experience. Rachel is very non-verbal. One word for her is a lot,” Thomason explains. While Catholics learn the complicated theology behind the Eucharist, Rachel understood it in two words: Eat God. Without going through any formal religious education, Rachel soon received First Communion. “God is the one who prepared her for First Communion and not us,” says her mother.

Carol Spale always dreamed that her son David would be able to receive his First Communion, but as he entered young adulthood she had begun to assume that this would always be a dream.

One day several years ago, David was in terrible pain and would not stop screaming. Spale, crying, said to him, “I’m sorry, I don’t know what to do to help you. I would do anything to make you feel better.” Suddenly David stopped screaming and began laughing in an effort, says Spale, to cheer his mom up. His love for his mother transcended the excruciating pain that he was feeling.

Spale told the parish priest about incidents such as this where David showed incredible love; after some preparation, they decided David was ready to receive the Eucharist. As David is unable to attend church, with the pastor’s blessing the family keeps the consecrated Eucharist in their home.

Now several nights a week, usually when David is in pain, his parents will ask if he wants to receive Jesus. They hold up the host and say, “Jesus loves you; he died on the cross for you.” They give David a small portion of the host and say, “Jesus, please let Davey feel better.”

“Jesus in the Eucharist really seems to help make David better, especially when he has seizures that do not stop or pain that is very strong,” says Spale.

Teaching Mass

For parents of children with developmental disabilities, simply taking their children to Mass on Sunday can be difficult. “The biggest challenge is that parents are worried that their kids will have behavior problems,” explains Mary Beth Walsh.

“For those with autism, part of their deficit is their desire to keep to routine,” says Walsh. The routine and repetitive structure of the Catholic Mass is something that her son Ben, 10, and other children with autism often appreciate.

Anne Masters, director of the Archdiocese of Newark’s Pastoral Ministry with Persons with Disabilities, is working with Walsh and other parents and experts to develop a curriculum teaching children with disabilities how to go to Mass. Through the “Mass Buddies” program, children with developmental disabilities attend parts of the Mass with a trained volunteer until they can build up to attending a whole service. Several parishes in the archdiocese have started hosting inclusive family Masses for families of people with disabilities.

When a child’s behavior at Mass is overly disruptive and violent, however, it presents a challenge to a faith community, as in the instance of the Race family in Minnesota whose child was banned from going to his parish church. Darcee Thomason, having written about this incident in her blog and having spoken to the mother, Carol Race, can see both sides of the story.

“The priest wasn’t doing anything wrong. He was looking at the parish as a whole. Carol wasn’t doing anything wrong. She was looking out for her family.”

Thomason’s own daughter, Rachel, now lives in a residential home. She has violent outbursts which prevent her from going to many public places except to Mass, where she has always done well. Thomason recognizes that children with autism cannot always be integrated into all situations.

At Mass, Thomason acknowledges, it can sometimes be hard to draw the line between when a child’s behavior is a minor annoyance and when it becomes disruptive. “When a child has to be physically restrained to stay in the pew, maybe they shouldn’t be there. While my worship experience is important, so is the worship experience of the other parishioners.”

Msgr. John Enzler, pastor of the Shrine of the Most Blessed Sacrament in Washington, D.C., says it is important to incorporate those with developmental disabilities into the liturgy as greeters, ushers, lectors, eucharistic ministers, and altar servers. “When they are included in the liturgy, I’m convinced that you set a trend for the parish,” he says, that those with differences are welcome.

Peg Kolm of Kensington, Maryland started the disABILITIES Ministries with fellow parishioner Francesca Pellegrino at the shrine in Washington. For many years, however, she did not feel that her daughter Kate, who has a rare pattern of birth defects, was welcomed at church.

Kolm found a place for her daughter when she discovered the Pastoral Statement on Persons with Disabilities, published by the U.S. Bishops in 1978. Now as coordinator of Ministry for Persons with Disabilities for the Archdiocese of Washington and director of development at the National Catholic Partnership on Disability, she spreads information about this important document.

“It is a very powerful and very clear message that the church welcomes and includes persons with disabilities,” Kolm explains.

“Before reading the pastoral statement, I thought my church had only three things to offer my severely disabled child, what I call the three Bs: Baptism, burial, and back-of-the-church attendance at Mass. After reading the document, I realized that my church wanted and needed my child, and I had a fourth B—we belong.”

This article appeared in the April 2009 issue of U.S. Catholic (Vol. 74, No. 4).