«Sally Patton UNITARIAN UNIVERSALIST ASSOCIATION BOSTON Copyright © 2004 by the Unitarian Universalist Association of Congregations. All rights ...»
In God Plays Piano Too, Brett Webb-Mitchell talks about how the voices of children and youth with disabilities are often silent because we do not take the time to listen to their stories and because they are generally absent from our churches. Yet we have much to learn from these people about compassion and forgiveness, persistence and courage, and most importantly, the wholeness of their spirit and the gifts they offer if we allow them to flourish. Listening to children’s stories encourages us to see each 16 Welcoming Children child’s uniqueness rather than their limitations. As Webb-Mitchell suggests, If we listen to these voices, then we may learn more about the life around us. We may become advocates, urging others to listen to each unique voice of a child or a person with a disabling condition. These are voices wanting to be heard. We should make way in our congregations for these voices, learning to live in community with these storytellers rather than waiting for them to make community with us.7 Parenting, loving, befriending, and ministering to children with special needs changes people. How we handle the change will either mire us in the prevalent belief system about disability and limitations, or it will set us free and alter our ideas about who we are and why we are here.
Ministering to Families We all need people who see us as good and competent parents, and who do not blame us for what is “wrong” and difficult about our child. We all need places to go where people can look past the fact that our child doesn’t talk or doesn’t respond to our directions. We need people who admire his physical beauty and his curiosity, or who recognize how clever he is in his mischief. We all need to go where our family is accepted as it is, and delight is taken in us and each of our children. And we all need people who show us the way, leading us by their example, to the confidence or pride we have been struggling for. An ounce of this kind of love can offset a pound of criticism and hostility. In its presence we open like a day lily to the sun.
—Barbara Gill, Changed by a Child The arrival of a baby into a family changes the family dynamics. The arrival of a child with a disability places exceptional demands on the family. The initial trauma of finding out about their child, whether at birth or later, can be overwhelming. The relationship between the parents and with their other children can become strained. A faith community can provide hope and support through this time, giving the parents some time to heal so that they can focus on their child with special needs and on any other children they might have.
17 18 Welcoming Children Parents with a special-needs child will automatically seek answers and help from medical, mental health, and education professionals. Some parents will receive too much information about their child, while others won’t be able to get enough. A lot of the information will be negative. When parents approach a minister or religious educator for pastoral care, they are looking for a different kind of information than what they have already received.
They may be looking for spiritual guidance, emotional support, or a different perspective. Often they are searching for a spiritual meaning to their child’s disability. The “Discussion” sections in the chapters on specific disabilities or disorders provide information about different perspectives and alternative views. They can help us think “outside the box” to be more creative with ministry to parents and all children.
Most of us in the helping professions are familiar with Elizabeth Kübler-Ross’s five stages of grief, as described in her book On Death and Dying: denial and isolation, anger, bargaining, depression, and acceptance.1 What most parents with a special-needs child experience is akin to the stages of grief because they are mourning the loss of their dream of a normal child. While the stages of grief are similar for those experiencing the death of a loved one, parents of a special-needs child must cope while parenting the child. This relationship becomes a constant reminder of their loss. Parents who can eventually accept the fact of their child’s disability can heal and learn to love the child for who she is, rather than who she is not.
Yet even with this acceptance, parents must still contend with a culture that does not see their child as a gift but perceives only brokenness and limitations. Often the struggle to raise their child the best way they can in the face of such uncomprehending and unyielding beliefs means that parents bounce back and forth between the stages of grief. This process of grieving and parenting has been likened to a roller-coaster ride. However, once they have started down the road toward healing, most parents continue to make steady progress. (For more information, see Kathleen Deyer Bolduc’s book A Place Called Acceptance: Ministry with Families of 19 Ministering to Families Children with Disabilities, which describes the stages of grief as they affect parents of children with disabilities.) Effective ministry to parents will change and grow, depending on what stage they are experiencing with their child. Healing and acceptance come with time, after the initial crisis is over. While many parents come to believe that their child with disabilities is a gift and has provided them with the opportunity for exceptional growth and understanding, this is not a message most will be able to embrace at the time of diagnosis or for many years afterward.
The best ways to support parents are to listen, provide a different perspective, and help them find creative solutions to whatever problems come along.
In working with parents to include their special-needs child in the church’s religious education program, you must be aware of how comfortable they are with his or her disability. Their comfort level usually corresponds to the stage of grief they are experiencing. Some parents are in denial and do not want to talk about their child’s impairment, some overprotect their child, some focus too much on the impairment, and some have learned to cope, relax, and enjoy their child. In any case, try to develop an open, ongoing relationship with the parents in order to fully understand how the child functions and how best to include him or her in congregational life.
The most appropriate ministry may be to help the parents find needed services and to work through their fears and sadness. If the parents’ relationship with their child seems unhealthy, you can gently suggest ways they can get more information and perhaps counseling.
Another goal of pastoral care is to understand how the parents are coping. They may be too exhausted, overwhelmed, or confused to search for answers and get help appropriate to their needs.
Helping the parents take care of themselves first may be the most important function of pastoral care. Parents who can find peace inside themselves are more likely to be able to summon the energy to help their children. It is important when ministering to parents of children with special needs to realize that the path out of 20 Welcoming Children paralysis, anger, and desolation to a celebration of their child’s life is different for each parent, and some may never get there. Turning inward, going deep, and struggling to understand can turn sorrow into joy. It is a constant challenge to take what life gives us and find meaning. A well-known story by Emily Pearl Kingsley describes what it is like for parents when they discover that their child has a disability. Imagine that you have planned a trip to Italy. You have learned the language and the culture, and you are excited about being in Italy. But when you finally arrive and get off the plane, you realize that you have landed in Holland instead. Now you have to plan differently, learn a whole new language, get to know a whole new set of people with different customs and ways of being, and you also have to give up on your dream of being in Italy. But, as Kingsley writes, “if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely, things about Holland.” 2 There are several messages that will help parents on this
• Your dreams for your child do not have to die; they just need to change.
• Your child will have his or her own dreams.
• Let go of any guilt or blame about having a special-needs child.
Guilt saps energy and eats away at family relationships. The past cannot be changed, so live in the present.
• Worrying about the future only creates miserable feelings about something that may not actually happen. Take care of yourself or you will not have enough energy for your family.
• Get support; you are not alone.
• Trust your own intuition, because the professionals do not know your child the way you do. Be a goodwill ambassador for your child, constantly communicating with everyone about him or her.
• Encourage your child’s independence and celebrate every accomplishment, even if it takes longer or is different from the achievements of other children. Visualize what you want for your child; then plan and make it happen.
21 Ministering to Families While federal legislation does not apply to our congregations, it is vitally important for families with children with special needs to obtain needed services. To minister to these families, it is important to be aware of three federal laws that affect our society’s treatment of children with special needs. As noted earlier, Public Law 94-142, or the Education for All Handicapped Children Act, was enacted by the U.S. Congress in 1975. This landmark legislation guaranteed children with disabilities the right to attend school and get a “free appropriate public education” (FAPE) for the first time. In 1990, the Education of All Handicapped Children Act was reauthorized and renamed the Individuals with Disabilities Education Act (IDEA). Under IDEA (PL 101-476), the term handicap was changed to disabled, and autism and traumatic brain injury were made eligible for special education and related services. A child qualifying for special education services must have an individual education plan (IEP) implemented.
Section 504 of the Rehabilitation Act of 1973 protects the civil rights of children with disabilities. There are some children who do not qualify for IDEA but have a condition that “substantially interferes with their ability to learn.” Section 504 is generally used for specific and special accommodations. Both Section 504 and the American with Disabilities Act (ADA) protect the rights of students from discrimination because of their disabilities. ADA entitles children with disabilities to all the educational services for which they qualify and access to all the programs and activities offered by the school. 3 What It’s Like to Be the Family of a Child with a Disability Having a child with a disability will affect all the family members—mother, father, siblings, and grandparents. Most of the tension arises because the needs of the child with a disability consume vast amounts of time and energy from the parents. Grandparents may want to help but do not know how and may have their own disability issues that limit their ability to provide support. They, 22 Welcoming Children too, are also experiencing the loss of a dream. Parents may feel resentful of each other but be too tired to deal with the undercurrents of dissatisfaction. Siblings can feel left out, ignored, resentful, and embarrassed by their brother or sister with a disability. It is vitally important for religious professionals and lay leaders to realize that siblings may also need individual support and care. It often takes family therapy to create a forum in which each family member is heard and listened to.
Families with a special-needs child have to redefine what the culture views as a family. In the book It Isn’t Fair! Siblings of Children with Disabilities, Stanley D. Klien and Maxwell J. Schleifer talk about a wall of silence that keeps families with a child with a disability from having meaningful discussions about their
It has taken many years, fraught with disillusion, frustration and the pain of outright rejection for parents’ and families to change the misconceptions and correct the myths which have dominated the beliefs and attitudes of many in this country about disabilities. Only now is the disabled child coming to be perceived as a human being with the same basic needs for love, acceptance and belonging as other children.4 The constant caretaking, teaching, and advocating for a child with a disability can deplete parents’ internal resources, so they rely more and more on their other children to help out and fend for themselves. Also, we frequently forget about the siblings’ role in creating attitude change outside the family. Like their parents, siblings are ambassadors for the special-needs child in their family.
Parents who recognize the special role their other children have in the family dynamics can allay their children’s fears, help them understand what is special about each member of the family, and listen to them when they feel resentful about explaining their sibling with a disability to their friends or having to help more at home.
Most siblings—when they feel listened to and cared for and come to understand their special loving place in the family— find that they are also blessed to have a brother or sister with a 23 Ministering to Families disability. When my daughter, Sarah Grenzeback, was fifteen, she expressed her feelings in a poem about her brother Tyler who has a
At first I did not know, Could not understand What was different, Why our parents Went through so much Fighting and suffering To find an answer, A solution to the problem That was you.
Now with a name The fight is easier;
Bridges of understanding Slowly cross the void, Thin threads of spider’s silk Weaving across the light.
At first I could not see;
My love was trapped, Your essence shadowed, Grey with mist, Misleading, insubstantial.