Journey from Isolation to Community
By Dr. Evelyn Worth McMullen, Director of Bright Threads Ministries.
May 14, 2015—Over the past few months I’ve had the privilege of hearing the stories of a number of parents whose children have special needs. Stories of pain and stories of joy; stories of brokenness and stories of hope. One recurring theme for families with special needs is isolation. Participation in social settings, even with extended family, is made difficult by the effort of continual caregiving. Parents advocate for their children as they navigate healthcare systems, education options, and even family birthday parties. It’s no wonder they find community among others whose lives have similar challenges. Parents get to know one another at Special Olympics events, in the waiting rooms of clinics and emergency rooms, and at meetings to explain changes in the “med waiver” requirements. So how can we, as the body of Christ, offer community to families who may feel as if they don’t belong?
Start by getting to know the family. Ask what a child needs to be able to participate in activities. Get to know the child first, not the label.
Resist the temptation to hide behind clichés: “We’re just volunteers, not special education teachers,” or “No church is perfect for everyone.” Read more in Shari Dacon’s BLOG to see how these comments shut down the opportunity for a conversation that may be transformational for church leaders as well as for parents. Every church can do something to be more welcoming. With a little support, volunteers can help children experience Jesus’ love through the church family. The editors of the new PC(USA) children’s curriculum “Growing in Gratitude & Grace” have recognized this. Visual schedules (great for all kids who have trouble with transitions) and adaptive suggestions are included. Check out a sample HERE.
Another way to offer community is to sponsor a parent support group. If a church is concerned about providing leadership, consider partnering with a community group. Check with local chapters of ARC, Autism Speaks, Down Syndrome Society or ask parents to recommend a community group. After Easter I joined a video-conferencing book group led by Barb Dittrich, director of Snappin’ Ministries (Special Needs Parent Network – SNPN- get it?) We are using Special Needs Parenting – from Coping to Thriving by Rev. Lorna Bradley. Once a week Barb sends us a link to zoom.com and we join her from the comfort of our own homes to talk about the questions and scripture in each chapter. And we pray for one another. Snappin’ Ministries also offers a guide to starting a parent network in your church. Direct the parents in your congregation to specialneedsparenting.net where they will find an amazing set of parents/bloggers/authors at “Not Alone: Finding Faith and Friendship for the Special-Needs Journey.”
The last word for church leaders will be from Jesus. When Jesus healed people he did more than make their bodies whole; he made it possible for them to return to their communities. They were no longer unclean. In Mark 5, Jesus sent the evil spirits into the herd of pigs and then told the man who had lived among the tombs “Go home to your friends, and tell them how much the Lord has done for you, and what mercy he has shown you.”(v 19) Our 21st century families have more medical options open to them. But when the doctors give their child a diagnosis and limited hope for therapy, the church family can offer caregivers and parents support, walking beside them on their journey from isolation to community.
Dr. Evelyn Worth McMullen is Director of Bright Threads Ministries in Lakeland, FL. You can contact her at evelyn@BrightThreadsMinistries.org. She has been in educational ministry for 32 years, with an MA from the Presbyterian School of Christian Education and a DEdMin from Columbia Theological Seminary. Her DEdMin work was an important part of her journey into ministry with people with developmental disabilities.
The Center for Lifelong Learning is in the early stages of planning for an event tentatively slotted for late spring 2016 that will address how to better incorporate the gifts of children and youth with disabilities into congregational worship and spiritual formation/education ministries.
Read Dr. McMullen’s Columbia Connections post from January 2016 Recalculating the Routes: Journey of Changing Attitudes.