This summer our 17-year-old son wanted to participate in a weeklong overnight church activity. For most teens, this is a typical summer activity. Pack your bags, say good-bye to your family for a week and off you go! For other teens, a week away is fraught with questions, anxiety and medical supplies. Our son has Spina Bifida. While he has made strides in becoming independent, there are still a few daily medical procedures that require assistance, usually from mom or dad. Anticipating his desire to go, we let the leadership know many months in advance that one of us would need to attend to be available to assist our son. We asked how we could participate in the activities in a way that would provide the least disruption to our son’s increasing need to be independent. Could we volunteer in some way? Provide leadership using some of our gifts? Much to our disappointment, the answer we received was “no.” One of us was welcome to be on site and help in very limited support roles or take our own retreat time on site. The more we thought about these options the more uncomfortable we became. Both of the options given to us by the leadership meant that other participants wouldn’t know us or see us as a part of the community for the week, only as mom or dad of the kid who is a little different. As parents of a teen without a disability the options given to us would have been appropriate. In our world though, this proposal meant that our teen could not attend the week without being the only one who needed Mom or Dad to attend with him. We were left with two options: be present to help our son as needed but not be included in the community, or our son not attend at all. By not allowing one of us to be a part of the community for the week, our son remained isolated from his peers in a place we had hoped he would feel most welcome.
This is just one example of the journey for families that includes children with disabilities. Fourteen years after our middle son’s birth, our youngest child was diagnosed with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep). For us, this meant sudden and sometimes violent outbursts, and a complete change in our family functioning and dynamics. Few people outside our family knew what we were experiencing because we didn’t know how to describe a medical diagnosis with mental health symptoms. We were exhausted and overwhelmed with the simple task of surviving each day.
Communities of faith can be crucial places of support for families with children with disabilities.
- Remember that parents of children with disabilities are likely exhausted. They are “on” 24/7 and taking a break or getting away for a time may not be easy or doable. Show support by bringing a meal “just because.”
- Evaluate your volunteer policies. Use retired members or youth and young adults as nursery helpers rather than asking parents to take a Sunday.
- Families with a child with a disability want to be included in the life of the church. Inclusion is important and will look different for each family. Be creative and involve parent volunteers in ways that normalize parent participation.
Finally, just because families with disabilities appear to carry it well doesn’t mean the load isn’t heavy. Faith communities can help lessen that load.
Alison resides in Lindsborg, Kansas, where she recently began a new adventure by opening Indigo Moo’d Ice Cream. In addition to the ice cream business, Alison has been a school counselor for the past 20 years. While she loves both of these career challenges, Alison’s greatest joy is spending time with her husband Shawn and their children, Adin, Caleb, Tessa and Simon, playing games, biking, gardening and traveling.