by Naomi Mitchum
From asthma and diabetes to developmental delays and everything in between, physical and mental challenges of children with disabilities push parents to face constant change. The parents' lifestyles and the way they spend their time and money must change quickly. Too often, the constant stress of parenting a child with disabilities breaks up families. Statistics support the need for ongoing, well-grounded work as children grow to maturity, and their needs change. Churches need to examine the issues families must face when they are blessed with a child with special needs.
Personal issues: Although grief is immediate, there seems to be no time for it. For years, parents have limited time and freedom because their disabled child needs a constant caregiver. Isolation breeds loneliness when there is little time and opportunity for keeping up with friends, recreation, and worship. A parent may give up a career to become the caregiver; family insurance may run out; private lives become public record for the family to qualify for aid; and as a child grows, court proceedings may have to be endured to retain legal guardianship.
Burning questions become: "Can God or someone help me through this grief for what might have been?" "Is there anyone to help me celebrate with joy my life with this wonderful child who has an impairment?" Prayer and beliefs about the nature of God and God's will often have to be re-examined.
Medical issues: An endless search for the correct diagnosis begins. Is it treatable? And if so, by whom? When a child undergoes chemotherapy, the parents ask themselves how they can subject their child to the side effects. When a child undergoes genetic treatment, parents are asked to play God for their child -- sometimes with no assurance about long-term effects. Ethical questions arise, and parents constantly feel inadequate.
Financial issues: Parents wonder how they can pay for a lifetime of medical treatments, social services, and sometimes special schools. They ask themselves how they can conscientiously use all their money for one child when other children have financial needs. Many parents dip into retirement funds for a child's services; then they later need financial aid themselves.
Daycare issues: Most parents must work to pay for special care. They are concerned about adequate, compassionate care. Daycare for adult children is an even harder issue, especially since government funding has been cut. A parent often must quit a job to assist his or her adult child.
Schooling issues: Obtaining schooling information is time-consuming, and the effort must be repeated when laws are changed. Where does a parent get the information? Who will be an advocate? How can the parent help when the disabled child is moved from mainstream classes to another option? How can the parent help when the child makes the transition from school to work? Constant attention to detail is required. Networking is necessary.
Long-term care issues: Parents with children who are developmentally delayed are particularly haunted by the question of what will happen to the children when the parents die. Often, unreliable government funding keeps parents unsettled.
Church issues: Parents often express anger and disappointment that the church or pastor "has provided nothing for me and my impaired child." The adage, "You didn't say anything, but I heard what you said," applies to parents who instinctively know the message delivered by a congregation.
An informed congregation can develop sensitivity and seek out and invite people with disabilities. The congregation can create an openness that encourages all parents to express their needs. But the issues don't end there. Using a parent-church team approach, the congregation can design a course of preparedness to include the following:
Emotional and Theological Helps
Help the pastor become informed about parenting issues.
Develop a core of informed, caring persons to help new parents through the initial tangle of grief and medical requirements. Contact parents of children that became disabled or chronically ill after birth and continue the support.
Design sensitivity training for nursery workers and other teachers so that the first church contact for the child and parent is caring and positive.
Organize support groups for parents and caregivers and for people with chronic illness and disability . Give emotional support plus information. Recruit and train support group leaders who realize that sharing, networking, and information gathering are far more important than a "pity party."
Provide parents respite time by planning activities for challenged children of all ages. Adult children often have large blocks of leisure time.
Do something special with children, youth, and adults with special needs. Get acquainted with them. Learn their names and discover their gifts. This, more than anything, speaks the language of love and acceptance to parents.
Organize an inclusive camp for families. Provide respite care for parents at camp. Financial help may be available if the camp provides substitute daycare.
Study the ways that children with disabilities develop spiritually, and make it possible for parents to attend Sunday school classes and worship.
Make people with disabilities welcome at worship, and provide worship aids (such as large-print hymnals and Bibles and hearing devices) for people of all ages who have impairments. In churches that do not offer childcare during worship, provide a Quiet Corner (wall and floor carpeting and soft, quiet toys) where small children may play near parents.
Establish a church policy of inclusion, and make funds available for administering a program for families with special needs. Include money for making the church mobility accessible.
Review curriculum and plan to include material that speaks of loving inclusion at all age levels. Keep records on mainstreaming and the resulting needs.
Provide training for all teachers and counselors in sensitivity and in the differences in the ways persons learn and interact. Establish a short-term support group for those who serve special-needs children of any age.
Network with state and local agencies and other local churches that provide services to families with special needs. Avoid duplication.
As the church family grows to include parents and children not previously included, you will be surprised by the joy that will result. The happiness and growth of people with disabilities will affect the entire congregation. People with special needs have gifts to offer --gifts that the body of Christ needs.
Statistics support the need for this work among people of all ages. One in ten families has a connection to a person with mental retardation. Ninety percent of the 7.5 million people with mental retardation are unchurched. In addition, there are many more people considered to be developmentally disabled with autism, epilepsy, and other impairments. Understanding the great need can lead a congregation to work toward educating themselves to provide means of spiritual and educational support.
Ten percent of the school-age population in the U. S. in 1991 was served by special education classes. The largest portion of this service was provided to people between the ages of 6 and 17. Since 1991, this statistic has grown. A message to the local church: Become informed about special education, gather information, know which teachers will have students with specific learning disabilities, and help them become competent to the task.
Two million people a year suffer brain injury, and two-thirds of them will be under 30-years-old. These are somebody's children! Parents need support, and the brain-injured person also needs nurture and spiritual growth.
Two million U. S. citizens have profound hearing loss, and another large number of Americans are hearing impaired. The local church can offer signing classes, real-time captioning, and TTD or TTY for communicating with members of the congregation.
In addition, chronically ill persons make up nearly twenty percent of every congregation. Each of these chronically-ill persons has at least one caregiver -- usually an entire family of caregivers. And each family has issues that must be faced on a day-to-day basis.
A Place for Everyone, A Guide for Special Education Bible Teaching-Reaching Ministry
by Athalene McNay. Nashville, TN: Convention Press, 1997.
The Inclusive Classroom.
Educating All Students, A Pathway to Success
by Billy C. Hawkins. Lansing, Michigan: Shinshy Seminars, Inc, 1994.
Naomi Mitchum, a Christian educator in Houston, Texas, is a freelance writer. She works with people with disabilities in the Texas Annual Conference of The United Methodist Church. Copyright © 2005 Naomi Mitchum. Posted on The East Ohio Conference of The United Methodist Church website — with permission.
Rev. Dr. Beverly Hall
Chair, Committee on Disability Concerns
The East Ohio Conference Office:
located in North Canton, OH.
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