Special Needs

Judy and Tim Barg, parents of five children under 11, have attended their church for the past nine years. When their son Timmy turned 3 years old, his behavior in church and Sunday school became such a challenge that Judy and Tim stopped worshiping together in order to care for Timmy. Timmy has pervasive developmental disorder (PDD), a condition similar to autism. For the Bargs, church had slowly changed from a blessed tradition to a dreaded ritual.

The same was true for Chip and Andi Borkowski, who attended another church but couldn't worship together because of their son Bennet who is developmentally delayed. Says Andi, "Not every church you walk into thinks Bennet's dancing around during the service is cute."

When it comes to kids in church, we're all guilty of a little intolerance. And we've all probably been on the receiving end of a few glances and glares when our own children act up during the sermon. But for the parents of a special-needs child, those looks of agitation and disapproval can make a lasting impression, one that could send them scurrying out the door for good.

Here in the Chicago area where I live, there are more than 500,000 people who have a physical or mental challenge. Of those, only 20 percent attend a church of any kind. Physical handicaps and church inaccessibility may be one reason for nonattendance but for families with special-needs kids, the main reason is quite simple?they don't feel welcome.

For parents with special-needs children, church isn't the only challenge of the week. Every day, every situation presents unexpected struggles. For Scott and Rosemary Macdonald, parents of 10-year-old Claire, simply trying to socialize with other families has lead to near tragedy. "Claire has PDD. When we take her to friends' homes that aren't 'Claire-proof,' we're often preoccupied with making sure we know where she is and what she's doing," says Rosemary. "On a vacation one year, Claire wandered into a room, took some prescription pills from a friend's purse and swallowed them. She was okay, but things like that stick with you and make you wary of taking your eyes off your child." The result is that the Macdonalds, like other special-needs parents, find themselves hesitating to accept social commitments. "It would be easier to not accept invitations, but that wouldn't be fair to Claire. She's very social and needs to be with people."

The same holds true for the children themselves. "Timmy is very sensitive in social situations or when other children are present," says Judy Barg. "Any dispute at all can cause him to become volatile. We often have to intervene and pull him away from a situation. We are so hesitant to leave Timmy with other children, especially if we're not around."

An organization called Jonathan's Kids wants to change all that. Inspired by the story of David and Mephibosheth (2 Samuel 9:1-13), members of the Glen Ellyn Evangelical Covenant Church in Illinois started Jonathan's Kids two years ago. Their mission is to offer support and encouragement to families with special-needs children, as well as help the whole church family gain a better understanding of what these families face on a daily basis. The goal is to minister to the unique needs of these parents and their children.

The vision for Jonathan's Kids started with Kris Gustafson, who was working as an aide to a boy with autism in the public-school system. She also knew Judy and Tim Barg through the church. After talking with the Bargs about some of the challenges of Timmy's disability, Kris suggested ideas to help Timmy cope better in Sunday school.

Around the same time, the Macdonalds started attending the church with their four children. One Sunday, the Macdonald family sat directly in front of Kris Gustafson. When Kris saw Claire, she knew God had given her an idea.

"I had prayed about finding a ministry," says Kris. "God has given me a love for kids with special needs. And there was Claire sitting right in front of me. Between that and my conversations with Judy and Tim, I knew God wanted me to do something."

Within a few weeks, Kris joined Judy Barg to meet with their pastor, David Smith, to seek his support for the ministry that would become Jonathan's Kids. He gave them the go ahead. Smith says, "Children with special needs have sometimes been marginalized in our society and families with special needs have particular challenges. This is one way we can demonstrate God's commitment to these families."

The Plan

With Pastor Smith's blessing, Kris and Judy organized the first Jonathan's Kids event. Some 40 people showed up to talk about their frustrations, their hopes and their challenges as the parents of special-needs children, especially as those things pertained to the church and their faith.

"The parents responded with requests such as aides for the children in Sunday school, education for the congregation on disability awareness and hope in the midst of emotional stress," says Kris. With those needs at the forefront, Jonathan's Kids was born.

"We fumbled our way through the initial start-up and at times it was very discouraging," says Kris. "Judy and I would work hard at planning meetings with speakers and no one would show up. We had tremendous growing pains, but God would give us nuggets along the way and we would keep going."

One nugget was Kaye Filkin, a marriage and family therapist who attends Glen Ellyn Covenant and who spoke at an early Jonathan's Kids meeting. In the course of her talk, Kaye offered her services as a facilitator of a support group for parents. The offer was immediately embraced and Kaye has been instrumental in giving the families a safe and supportive environment where they can share their unique frustrations with other parents who understand. For the families involved in Jonathan's Kids, the support group has become the mainstay of the ministry.

The Difference

Rosemary and Scott Macdonald have been proactive in Claire's treatment since she was diagnosed with PDD around the age of 2. They didn't know about the difference God could make in their situation until friends invited them to a Jonathan's Kids event.

"At first I thought Jonathan's Kids would simply provide an aide for Claire in Sunday school," says Rosemary. "I didn't realize it would turn into a support system with a core group of families who are getting close and who are there for each other. It has also made me realize what we have been through and how faithful God has been to us. Every thing has turned out all right?maybe not the way I thought it was going to turn out but there is beauty from the ashes. Because Jonathan's Kids has been well promoted in our church, Claire is able to attend the fourth-grade youth group and the kids reach out to her. A couple of them have invited her over to play and that alone is huge."

Jeff and Vicky Heise are the parents of 6 1/2-year-old Mark. Mark has no single diagnosis, but multiple symptoms such as a seizure disorder, developmental delays and low muscle tone.

Jeff says, "Jonathan's Kids has improved our relationship with Mark. Obviously we go through times when we ask, 'Why is this happening with our son?' But with the help of Jonathan's Kids, we're more aware of the good Mark has brought to our family."

Jonathan's Kids also became a central reason the Borkowskis came and stayed at Glen Ellyn Covenant. "After going to a couple of Jonathan's Kids events and meeting the people and experiencing their faith, we started attending the church regularly," says Chip Borkowski. "I think it was the whole dynamic that changed my life to become a follower of Jesus. In our support group, there is a lot of talking, praying and crying and it has helped change me from somewhat of a cynical and sarcastic person to someone better. I can recognize the difference in myself."

Today, 8-year-old Bennet Borkow-ski's idea of fun is going to church on Sundays. His favorite part of worship is singing, dancing and clapping to the music of the worship band. "When it's time for children's worship, Bennet is first in line, jumping with excitement. Bennet feels welcome and accepted," says Andi Borkowski. "It's a load off your shoulders to walk in the church and not be afraid. Before we found this church and Jonathan's Kids, we thought our family's values came first, but now I know we weren't showing that. Our whole attitude has changed because now we have fellowship, prayer and tools to cope when things get overwhelming."

Jeff Heise couldn't agree more. He says, "If anything happened to one of us, we know that there are other people in Jonathan's Kids who would reach out to help. We never felt like we had that before."

The parents involved in Jonathan's Kids have found in each other the kinds of friendships they never thought they'd have. Rosemary Macdonald, tells of a Jonathan's Kids party on New Year's Day. "It was great because everyone knew it didn't matter how their kids acted because we all have a child who acts different too. Usually when you get together with other families, you're very aware of being the only ones with a challenged child. But when we're with these other families, we're all much more relaxed."

Not only has the group changed the lives of the people in it, it has changed the whole church. "Jonathan's Kids has been like yeast in the dough of our church family," says Pastor Smith. "It brings the needs of families with special needs to the attention of people who sit beside them in the pew, who have children in the same Sunday-school classes. We talk about Jonathan's Kids in the bulletin, the newsletter and from the pulpit. It provides the opportunity for people to be supportive and get involved with these families as living examples of Christ's love."

Jennifer Mangan is a writer and the mother of four. She and her family live in the Chicago area.

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