Club Created reaches special needs kids and their siblings, parents
by Lori Belden Pope
There was a time when Ryen Parker wouldn’t even walk into the Club Created classroom at South Mountain Community Church, a Mennonite Brethren congregation in Draper, Utah. He would watch the other kids with special needs sing, play games and learn about Christ’s love for them—but he didn’t go in.
Ryen has autism, a neurologically based disorder that limits a person’s ability to communicate, socialize and regulate behavior. For reasons not yet understood, the incidence of Autism Spectrum Disorder, once thought to be a relatively rare condition, has increased significantly in recent years.
Believing that her son would benefit from her church’s unique evening program for disabled children, Wendy Parker regularly took her son to Club Created, and after watching for several months, Ryen joined in the fun. And in time, Ryen was ready to attend Sunday school with other children.
Before sending Ryen to Sunday school, Wendy talked to the class about her son’s disability. The children listened attentively and asked lots of questions—not about Ryen’s disorder but about his pets and hobbies. The children didn’t concentrate on their differences but immediately focused in on the ways that Ryen was similar to them. Today nine-year-old Ryen attends Sunday school with a “buddy” volunteer from the congregation.
Special needs, special challenges
Children like Ryen sometimes have behaviors that are difficult to manage in public. So when the South Mountain congregation realized that multiple families in their church were dealing with such children they determined to do something to help. The congregation, already reaching out to the hearing impaired thanks to the addition of a sign language interpreter for its multiple church services, began a program they dubbed Club Created.
The program that initially kicked off in the fall of 2007 was built on the vision of church member Jessica Tottenham, who as a Young Life staff member and Special Olympics volunteer had training to back up her vision. She put together a team of people who helped her prepare and present a monthly evening event geared specifically for children with needs that sometimes precluded them from attending Sunday school or other activities.
Last summer, after some rethinking and retooling, the congregation launched a larger program under the banner SHARE, an acronym for Support, Help, Access, Respite and Encouragement. SHARE includes Club Created, the Buddy Program that pairs students like Ryen with a caring high school student or adult to shepherd them through Sunday school, and support groups for parents and siblings of disabled children.
While Tottenham continues to lead Club Created, Mike and Jessica Salazar work with the siblings of Club Created children and Wendy Parker, Ryen’s mom and South Mountain’s children’s administer, volunteers as the coordinator of the parent support group that formally began this fall.
Again and again
Club Created currently serves about 10 children ages eight through 12, and while a variety of disabilities are represented, most of the children are diagnosed with Autism Spectrum Disorder.
To best meet the needs of children who typically do not adjust well to change, the format remains the same each week, and Tottenham says the children have learned the sequence well. The evening begins with games that emphasize important skills that autistic children often lack. For example, a game that has kids throwing and catching a beach ball requires that they talk to each other or get the attention of another student before they throw the ball, a skill autistic children need to practice.
Two songs, always the same and always with hand motions, follow the games. Then comes a lesson from Tottenham, a talk that is short and simple but always uses Scripture. The lessons are repeated for several weeks, and many times the lessons remind the children that Jesus wants to be their friend.
Then the children divide into two groups to talk about the lesson. Often times the children have good questions, but goofy questions are accepted as well as off topic comments about pets or favorite toys. Next is a craft and the evening closes with a prayer.
Hanging on by a thread
The parents of Club Created participants instigated an informal support group two years ago when they began talking with each other while they waited for their children.
“Parents needed a night out. They were just hanging on by a thread,” says Heidi Sowell, a mother of four boys, two with disabilities.
Parents began bringing chips and salsa to munch as they discussed their shared frustrations, particularly in dealing with people who sometimes completely failed to understand their kids.
Parker has developed more structured parent meetings that offer information, discussion and social time. She says, “We were intentional in our effort not to over-promise because programs that had disappointed were a common refrain among parents.” Although Parker has not found any curriculum that specifically meets the needs of all the parents, just getting together has been helpful. One thing that Parker says parents consistently say they appreciate is the chance to tell their story. One mother says, “It is so refreshing to be able to talk with families who are dealing with the same thing in their lives: a child with special needs.”
Concern for siblings
Twenty-two year old Mike Salazar, who grew up with a twin sibling with special needs, has a passion for relating to the siblings. He knows from experience that kids need a place to go where they don’t feel that they have to watch out for or take care of their siblings, and at South Mountain that place is the SHARE Sibling Support Group, held at the same time as Club Created.
“My other children look forward to going to their class for siblings where they can play games and talk,” says Mindy Webster, the parent of an autistic son, in an e-mail. “It makes them feel important too!”
In many families, says Salazar, a role reversal takes place because younger children feel responsible for older siblings who have disabilities.
Salazar says many of us would be surprised by how much kids know about their siblings’ challenges and by the concerns that siblings frequently have for their disabled family members. He finds that some children feel shortchanged because of the fact that their parents can never spend time alone with them due to the magnitude of their sibling’s needs.
Helping children see their disabled sibling through God’s eyes is one of Salazar’s goals. He emphasizes that people are different from one another and encourages kids to talk about the things that both they and their siblings can do well.
Because they love it
Volunteers, parents and children are equally enthusiastic about SHARE and Club Created. “You can tell the volunteers do it because they love it,” says Alexandra O’Keefe, the mother of two young daughters, one with severe disabilities.
“What I like is that they have something for everyone in the family,” says O’Keefe.Amanda Watt, the mother of five, says her daughter, who has physical and communication disabilities, asks regularly if it is a Club Created day. “I think she likes the attention, games and especially that she isn’t the only one different,” says Watt.