By Jim Pierson
The family of a child with a disability needs the ministry of the church. This ministry starts with understanding. Understand that the family is forever changed, that they question why this happened, that they often deal with a negative, staring society, that educational services are not always easy to get, that their other children have difficulty with the disability, that the information they get is not always clear, that disability is expensive, that the medical community can be confusing, and that their friends often leave. The key is understanding.
Following Jesus” Example
Jesus was sensitive to the family of the person with a disability. Jesus healed a boy with epilepsy after his disciples couldn”t (Mark 9:18-27). Following a stern discussion with his disciples about their inability to minister to the boy, Jesus radiated a warm concern for his parents. He asked, “How long has he been like this?” Jesus” question is exemplary. Expressing interest in the child and his family is better than a stare or a turned head.
Sometimes parents are blamed for the disability of a child. Such an approach did not originate with Jesus. After meeting a man who was born blind, Jesus” disciples revealed that they had judgmental thoughts (John 9:1-3). Their exchange and Jesus” response provide an eternal answer to the reason for a disability. The man”s condition was not due to either his sin or that of his parents. His blindness happened, Jesus said, “So that the work of God might be displayed in his life” (John 9:3). There is no reason to blame, but every reason to support the family, and to help display God”s mercy, kindness, love, and hope in their lives and the life of the child.
Families Ask Questions
“Why did God allow this to happen?” “Is it permanent?” “Can I afford the care?” “Can my child still be productive?” “How do I discipline my child who has a disability?” “Will I still have a normal family life?” “What do I say to people who stare at my daughter and make thoughtless remarks?” “Will my child ever be able to accept Jesus?” “I don”t feel love toward my son; what”s wrong with me?” “What will happen to my child after we are gone?”
These are tough questions. Seeing them in print should give some insight into the needs of these families, their reactions, and their feelings. First Peter 3:15 tells us, “Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have. But do this with gentleness and respect.” Was ever a Bible verse more applicable to a situation? You must be prepared to share your reason for hope with the family who has just received a devastating medical diagnosis. You must be prepared to welcome that family visiting your congregation, searching for someone to accept them and their severely disabled child.
What will you say when the father or mother in your Bible study group cries out in anguish? Will you offer some pat cliché that does more harm than good, or will you have a well-thought-out, sensitive response?
You can be prepared with helpful information about available services; you can be prepared to share the hope we have in Christ; you can be prepared with open arms, a listening ear, and a shoulder to cry on. And remember Peter”s admonition: whatever you say, say with gentleness and respect.
Saying the Right Words
I have heard many reports about the insensitive, unkind statements people make. They range from, “What do you think God is punishing you for?” to “God knew what he was doing when he selected a strong person like you to have a child like this.”
Learn words that will encourage:
“¢ “I have learned so much from you as I”ve watched you handle your child.”
“¢ “You are the expert on the needs of your child.”
“¢ “Take care of yourself.”
“¢ “I see a lot of love in you.”
“¢ “It is not your fault.”
Suggestions from Two Parents
Drew Mentzer, the father of an adult daughter who has neurofibromatosis and is blind, has a bright mind and a sensitive heart, obvious in his suggestions given here.
“¢ Be a servant to the family. Take up the towel and basin. The family needs friends who will serve.
“¢ See life from their perspective. Learn their vocabulary. Know the world of dealing with a child with a disability.
“¢ Encourage the family. They know pain, fear, worry, and grief. Help them know compassion, joy, and hope.
“¢ Be sensitive. Don”t thank God for your healthy child if your gratitude is based on comparison with their child. Parents of children with disabilities are thankful for them, too. God made us all.
“¢ Don”t assign blame or ask if they know what they did to cause the problem. Parents suffer from such insensitive questions. God is in charge and does all things according to his purpose and plan for us.
“¢ You don”t have to be able to provide answers, but be ready to help the family learn good lessons.
“¢ Guide families to know that it is all right to ask for help.
“¢ Cheer the family on to victory. Be there in the good times and the bad.
“¢ Include the family in the life of the congregation. Make it easy for the parents to attend church functions. If their Sunday school class or small group is having a party, volunteer to sit with the child.
“¢ Give the family dealing with disabilities the chance to minister to others as well as receiving ministry.
Mary Klentzman is the mother of Jonathan, who at birth sustained severe neurological damage. For the first seven years of his life, he required constant care. She offers these practical suggestions for helping the family:
“¢ Pray””and let the family know you are praying. This is the most important thing you can do. Not long ago, a local church was planning a prayer vigil and called to obtain specific prayer needs concerning Jonathan. It was an incredible faith-builder and encouragement for the family.
“¢ Assure family members by a friendly, reassuring smile or comment that the odd things some of these children do, such as making loud, guttural sounds, are just fine””even joyful at times. This will do wonders to ease any embarrassment they are experiencing.
“¢ Try to overcome fear of interacting with the child. Ask the parent what the child likes””some like their heads and hands rubbed, others hate it. Don”t be afraid to ask””then do it. Many of these kids are not physically fragile.
“¢ A brief phone call to say you”re praying for them is such a blessing. A lot of these mothers have no adult conversation.
“¢ Don”t criticize the family for decisions they make with their children. People need to understand that no one knows the child as well as his parents. They also need to be aware that these parents face criticism and pressure from therapists, doctors, teachers, and social workers to do more or different things with their child than may be humanly possible.
“¢ Let the parents talk and vent their frustrations. Their trials are of such long duration that the parents don”t want to burden others with their constant difficulties, but, occasionally, just talking to someone is very helpful.
“¢ Be sensitive even when the disability isn”t very bad. It is still a loss that can bring a great deal of sadness and uncertainty about the child”s future.
“¢ Don”t be critical when the parents are going through the normal stages of grieving””anger, denial, guilt, etc. People get so concerned about parents being in denial that they don”t realize that sometimes this is a needed emotional cushion to survive and bide time until adjustment to their situation and acceptance of the disabilities can be attained. Even then, periodically grief occurs.
“¢ Dads especially need support from other men. Statistics show that it is even harder for a father to handle a child”s disability than it is for moms. Dads would benefit greatly from the prayer support of other men, and from their encouragement and sensitively presented ideas on how they can better interact and play with their children.
“¢ Most families have a difficult time finding a church where they can feel comfortable worshiping God and gaining fellowship with other believers. Some churches provide Sunday school classes for children with special needs. At Klentzman”s church, hosts are prepared to take visiting children or newcomers to their age-appropriate classes and help train the teachers to include and care for them within the classroom. Sadly, quite a few families with children with disabilities are not able to find a church that is sensitive to their circumstances. At some churches these families meet tragic rejection because of their children”s special needs rather than the warm acceptance Jesus intends. Many opt not to attend anywhere.
“¢ In one congregation, a special education major from a local university offered to take care of a child with special needs so his mother can participate in choir practice and worship. It wouldn”t take much effort if several people volunteered, or even if the church sought out and paid a student to do things like this.
“¢ Share encouraging Scriptures and tapes (music and sermons) with the parents.
“¢ Offer to go to the doctor with the parent and child. Pray with them about these appointments and meetings with school personnel. The doctor and school visits can provide some of the worst sources of discouragement and despair for parents. Offer to care for the parents” other children while they take their child with a disability to the doctor or therapist.
“¢ Many of these children spend much time in the hospital. You can be a great help by offering to stay with the child at the hospital while Mom goes home to rest and spend time with her other children who desperately need her attention and assurance, too.
“¢ Offer to build or repair equipment for the child. This could be as simple as making a wooden bench on which to do therapies or attractive bibs for children who drool.
“¢ Offer to baby-sit the child while the parents go out on a date. Most of these children are not medically fragile, so anyone can learn to care for them. If the child is fragile, a church can offer to pay a qualified person to stay with the child. A child”s disability puts an incredible strain on a marriage.
“¢ Offer to stay up all night with the child. You have time to recover. Some parents go years without a decent night”s sleep.
“¢ Few people realize the financial constraints put upon parents with physically challenged children. Many times Medicaid is the only medical insurance they can get. To qualify for Medicaid a family usually must meet almost poverty-level income restrictions. Thus, they cannot seek that higher-paying job or bonus, for they will lose the only coverage their child has. Christians could help them with groceries or prepared meals or an occasional love offering.
In Klentzman”s case, some families joined together and offered a certain amount of money to pay for any kind of help desired””nursing or house-cleaning for example. As a result, a team of cleaning professionals came and cleaned her house like it had never been cleaned. That did more to encourage her and lift her load than just about anything, since the regular daily needs of her family make it impossible to clean adequately. The funds provided a weekly service for several months. Praise the Lord!
Jim Pierson is president of Christian Church Foundation for the Handicapped Ministries in Knoxville, Tennessee. This article is adapted from his book Exceptional Teaching: A Comprehensive Guide for Including Students with Disabilities.
The book is available from Standard Publishing, (800) 543-1353, or at www.standardpub.com (item number 03769).
0 Comments