Ministering to families with handicapped children

More than architecture, it is the attitude of the church that needs to be restructured as we address the issue of ministering to the handicapped.

An occupational therapist and a mother of two children, Karen Sue Holford enjoys teaming up with her pastor-husband in family ministry in south England.

Kate and Mark had just been through the incredible experience of the birth of their first child. It had been a long and painful labor. Kate had opted to go without any pain relief, and by the time she delivered she was at the end of her emotional resources.

Tired and exhausted but with the smile of the satisfied, she looked up to see the face of her child at that magic moment for which every mother waits. She was shocked at what she saw. Hannah had a cleft lip and palate. Kate was devastated. It had never occurred to her that she might have a baby that was not perfect.

Our baby, Bethany, was born 12 hours earlier in the same hospital. Since as a professional I encountered handicapped children daily, the thought of having a disabled or imperfect child had crossed my mind many times, together with thoughts about how I would respond and cope.

As soon as I realized that Kate was on the same corridor as I was, I rushed to see Kate and her baby. Kate and I had attended prenatal classes together. We had the same love for our Lord, and we were good friends. Now Hannah created a different sort of bonding between us one of exploring the difficult and the hard to understand.

Kate and I spent the next week together, in the same room. We talked a lot about God, about Hannah, about why there is pain and suffering and deformity.

Kate and Mark went through many ups and downs over the next few months. Every time someone came to see Hannah for the first time, Kate would have to prepare that person and explain about Hannah's lip. After corrective surgery Hannah is now just like any other 2-year-old. A slight redness just above the lip is all that remains. Although she may need speech therapy, and perhaps further surgery before she starts school, she is quite normal and beautiful.

Kate and Mark are fortunate in that Hannah's deformity was correctable. So are many other birth defects. But there are also many problems that are not correctable, that may require a lifetime of care and support.

Correctable or not, a birth defect turns birth from a moment of joy into a period of shock and sadness. The mother, particularly, has a tendency to feel vulnerable, insecure, and angry. She may experience guilt and attribute the defect to herself her lifestyle, diet, or perhaps some activity she was involved in. Depression may follow. Questions about God, the future, and oneself are not uncommon.

As a pastor you may be called in and be involved in such situations quite frequently. What should you do? How would you bring a touch of the reality of God's loving care to the people concerned? Is there a role for the local church to play in the ministry for the handicapped?

The role of the pastor

There are at least three simple tasks a pastor can perform as he attempts to minister to families that experience sud den shock as a result of a birth defect or handicap.

1. Listen. Your presence with the hurting family is in itself a symbol of solidarity. You need to remain unshockable, as feelings expressed will be in tense. The parents have probably heard all the opinions of the specialists. The couple may pose questions you cannot answer. They may not require any particular advice, unless, of course, they specifically ask for it. They would not like to be told their feelings are wrong. They need not be reminded that their questioning of God is inappropriate they will find that out themselves. What they do need is love, acceptance, a listening ear, and the prayerful support of a caring pastor and a loving congregation.

To dish out Bible passages to fulfill your own desire to say something may not have the desired effect. This is no occasion for a theological presentation on the meaning of suffering. However, if the situation should warrant, you may whisper about ordeals that life is made up of. What greater ordeal than the one on the cross, when Jesus cried out, "My God, my God, why hast thou forsaken me?" Jesus was able to ask this question when He was facing the biggest ordeal of His life. That question did not necessarily indicate a lack of faith in God, but did point out a strong relationship with Him, a relationship that makes it possible for us to approach God with our problems. We are not called upon to accept blindly our trials as if we are pawns in a cosmic game. Our God is big enough to handle our questions.

2. Do not attribute the handicap to God's will. God does not desire that any child should be handicapped. He created everything perfect, and would have liked His creation to stay that way. He feels with us in our pain and distress. Jesus spent much of His ministry relieving the suffering of the handicapped whether they were born that way or became that way because of sickness or injury later in life. To tell parents that their child is handicapped because of the will of God (or even to imply that this is so) is cruel, and misrepresents God.

3. Create an atmosphere of support. At the first opportunity after obtaining the consent of the parents, you may want to inform the congregation of the facts of the situation, with tact and sensitivity. Something like this would be appropriate: "We all know Jim and Sarah have been looking forward to the birth of their new baby. Well, the baby has arrived, and it is a lovely little girl--Rebecca. However, all is not well be cause Rebecca has spina bifida, and this means that she will probably not be able to walk, and will need surgery and lots of special care and attention. Jim and Sarah need your love and support. You can offer them this by listening to them, by praying for them, and by letting them know that you are thinking of them. They need someone to take care of their dog for a few weeks, and may appreciate it if we would mow their lawn. Would some of our ladies be willing to can or freeze the fruit growing in their garden, so it does not go to waste? They do need our love and support and immense sensitivity."

Support is something the family will need on an ongoing basis. Emotional and practical support is crucial. The family will face many crises as they try to cope with the situations created by the handicapped child. Studies indicate that four out of five couples who have a handicapped child break up. This shows just how stressful the situation can be on the marital relationship. Finances involved in providing continuous treatment, special schooling, and respite care also stress the family. Caring for the child may cut deeply into the time and energy the family has to invest in other needs.

Siblings also may have to make adjustments. They too need time and attention from their parents, and may feel jealous because their handicapped brother or sister receives so much of their parents' attention. These feelings can lead to both resentment and guilt, and the children may feel unable to express themselves for fear of sounding selfish or adding to the stress their parents suffer. If financial resources are being stretched to help care for the handicapped sibling, then the other children may feel afraid to ask for financial assistance when they need it.

The role of the church

As a church we need to think about how we can serve the families who are having to cope under these difficult circumstances. How often we find that the church is ready to do much for the handicapped by choice (those who cripple themselves by indulging in alcohol or tobacco or drugs), while neglecting those born with deformities. We speak of Jesus as our model in ministry, and yet how much our individual and corporate commitment to the handicapped differs from His! As a church we advocate Christian education and equal opportunity for children whatever their abilities, but in practice handicapped children may find that our schools can not accommodate them.

And yet there are simple ways by which a local church can help families with handicapped children.

1. Provide counseling. You may not always be able to establish professional counseling care, but providing a pair of listening ears in times of stress and need can be extremely helpful. It is even better if the counselor is skilled in working with such families and has learned or experienced the types of stresses and questions that may surface. Your counseling center may not be able to provide all the answers, but if it can be a starting point, your church will have done much to ease the burden already.

2. Establish a resource center. A small library of well-written books and pamphlets with practical information and guidance on how to cope with the handicapped can be helpful. Choose books written especially to help families with a handicapped member; those written by the handicapped or their families are better. Establish files with information on topics related to the handicapped. Watch for information on temporary care, vocational training, support groups, special vacation schools or camps, financial assistance, etc. Encourage church members to be familiar with the resource center so as to be of assistance to those who might need help.

3. Organize a support group. Is there a support group for families of handicapped children in your area? If not, start one. Contact professionals who have the skills to help facilitate such a group. A regular meeting once a month, at a time and place convenient to those interested, with carefully selected speakers and programs, and with a time to talk and share, provides the basis for a good support group. Encourage the members of the group to support one another positively so that the sessions aren't spent in just complaining. There will be a need to share complaints and hard times, but for the most part the group sessions should consist of pressing for the positive and looking to the future.

4. Set up a play group. The church can organize play activities or a kindergarten for children of mixed abilities, both handicapped and nonhandicapped. This helps children accept one another, learn, and develop their skills. It also provides a social setting for the often isolated handicapped preschooler. To begin with, parents, especially those of handicapped children, may accompany them until the organizers get to know the children and their special needs and capabilities. The group need not meet more than once a week, and should be run by someone who has had training in medical or teaching areas. If you can get an occupational therapist to advise on equipment, games, and activities, you are off to a good start. Local schools and churches may help you with volunteers, toys, and equipment.

5. Involve the school. In its philosophy and policy, is your local church school committed to the inclusion of handicapped children? Can you help fund the necessary adaptations to the building and the special equipment needed so that handicapped children can enroll and be cared for with dignity? Are there non-Adventist parents in the area who would want to send their handicapped children to your school if it were possible? Can you provide specially trained teachers to meet the needs of these children, and also teaching assistants to ensure individual care?

6. Budget for ministry to the handicapped. Is your church able to finance projects for handicapped children and their families? Do you have a fund that could buy a vital piece of expensive equipment, assist the handicapped children who want to go to camp, or provide for a weekend away for the parents? Make caring for the handicapped a part of your church budget.

7. Involve the whole church. Is your church ready for handicapped persons? Are there barriers of architecture or prejudice or fear of the unknown or feelings of inadequacy among your members that make handicapped per sons uneasy and unwelcome in your midst? Could you alter the washrooms so that there is easy access for a wheelchair? Could you place suitable bars and faucets at the correct heights to facilitate their use by the handicapped without embarrassment? An occupational therapist would be able to provide technical advice in this area. And what about your Sabbath schools, Pathfinder Club, and other church activities? Are these open and the rooms accessible to handicapped persons?

More than the physical plant, it is the attitude of people that needs to be restructured in any effective ministry for the handicapped. One activity that can help members understand a little of what it is like to be handicapped is to get them involved in a perception session. Ask each person to draw a picture of himself or herself and then pass the drawing to another person, who is to indicate a handicap for the person pictured. For example, a scribbling on the eyes would indicate blindness. The pictures are then returned and the members list all the activities they currently enjoy that would be difficult or impossible if they had their designated handicap. They could also list the activities they would still be able to do, and add more that they would be interested in taking up if they were handicapped in this way.

Ask the participants to reflect on how they think they would react should they experience such a handicap now. You might also ask them to role-play parents with handicapped children and to list their feelings, reactions, needs, and expectations. The group may also consider Jesus" approach to the handicapped, and devise positive ways of enhancing the ministry of the church to the handicapped.

Our Christian calling demands of us that we rid ourselves of prejudice to ward the handicapped. We need to open our lives and our churches to accept more readily the handicapped so that we can share with them the love that Jesus has for them and the concern He showed the handicapped when He was on this earth.

Ministry reserves the right to approve, disapprove, and delete comments at our discretion and will not be able to respond to inquiries about these comments. Please ensure that your words are respectful, courteous, and relevant.

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An occupational therapist and a mother of two children, Karen Sue Holford enjoys teaming up with her pastor-husband in family ministry in south England.

July 1991

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