Children with Disabilities Need a Place in the Life of the Church – and the Church needs them, too
An article submitted to the Voice by Barbara Djimopoulos, Christ Church HackensackLaurie Spies’ daughter, Jessica, was born with Hydrocephalus. Deaf in one ear and blind in one eye, Jessica could communicate verbally only in words and short phrases. Realizing that her daughter could not participate fully in Sunday School, Spies presented herself to the rector of the church.
“Jessica makes a lot of noise, “ Spies said, “but she needs to be in church.”
Only momentarily taken aback by Spies’ directness, the rector responded, “Of course.”
From then on, as long as Jessica was able, she participated in the children’s worship part of Sunday School and then joined her mother in the sanctuary. She was always part of the life of the church, sometimes carrying the communion bread to the altar.
“Jessica was enriched by her participation, but so was I and the congregation. All of God’s children have gifts of the Spirit to offer,” said Spies.
Years after the death of Jessica, Laurie Spies has joined a joint committee of the Bethsaida Team and the Commission on Christian Formation which is exploring ways to include children and youth with disabilities in our church life and education, and to teach inclusion as part of the gospel message. A clinical social worker and Christian educator, Spies says that it is hard for parents of disabled children to ask for what they need from the church.
Even in cases of more common conditions, such as learning disabilities and behavioral disorders, the inability of a child to function well in the expected classroom situation results in unhappiness and discomfort all around – the child, the parents and the Sunday School teacher.
“When children have extensive disabilities,” Spies said, “the families receive so much attention and resources from medical and therapeutic professionals, as well as from organizations that provide support for specific conditions, they feel overwhelmed by the help they need and receive, that they are often reluctant to seek support from the church, the one place they should expect to embrace them.”
At the same time, congregations often sense the emotional withdrawal of such families and feel that they must wait for the family to invite the congregation to participate in their lives. The result of such an emotional gulf might be the full or partial retreat of the family from congregational life. In some cases, the family decides to stay home together on Sunday. Sometimes one parent will stay home with the child with disabilities while the rest of the family attends church together. Either way, both the family and the congregation suffer from an incomplete life in Christ, as the chain of community is broken.
Whether the disability is mild or severe, only part of the problem is the disability of the child. The lack of attention to the inclusion of children with disabilities in Christian education and formation programs does nothing to prepare church program leaders, who are volunteers and usually not professional educators, for the inclusion of special needs children.
Having the Bethsaida Team work with the Commission on Christian Formation was the brainchild of Wendy Broadbent, a member of the Bethsaida Team and the mother of a youngster with multiple disabilities. The Commission on Christian Formation responded enthusiastically, and the group has been meeting for about six months to formulate a process to define the situation and propose solutions.
The current need of the joint committee is to receive feedback from families of children with disabilities of any kind with regard to their needs and experiences in the church. If you are related to a special needs child, please contact the joint committee by calling Barbara Djimopoulos at (201) 483 – 3420 or emailing bethsaida@jamesongroup.org.
If you know a family whose church participation has been affected by the disconnect between a child’s needs and what the church has been able to offer, please show them this article and ask them to contact us. Bringing solutions to the issue of the inclusion of all children in the life of our congregations requires information from those most affected. The joint committee is eager to hear from you.
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