A solid percentage of our future leaders will be siblings of a sister or brother who has disabilities. And that matters.
It matters because their experiences have uniquely shaped their sense of personal identity and the way they view God. And this will influence the way they lead and serve—for better, and for worse.
I was recently visiting with Mark Zamora (Volunteer Coordinator & Church Relations) with PULSE Ministry—a student-led prayer and evangelism movement on mission to empower the Church and awaken culture to the reality of Jesus. Mark expressed compassion for his friends who have siblings with special needs:
“I have a few friends that have siblings with special needs and some of them are really mad at God. Others are really growing and inspiring. I was going to see if you had any connections with ministry that goes after these siblings.”
I share Mark’s passion for the souls of this generation and I believe his description of his friends rather closely describes the spiritual situation of many siblings who are emerging into adulthood through a special needs family. Generally speaking, they are either wrestling with their faith or embracing it with unusual maturity and insight. Few seem to fall into the middle, where so many in this generation are landing—in spiritual apathy.
As a Christian parent who has raised three children in a family affected by special needs, I hoped and prayed that my children would grow up thriving in their faith despite the way disabilities were challenging my ability to be the parent I wanted to be. Those early years of parenting were shadowed with some of my own spiritual confusion about the sovereignty of God along with extra worry, guilt, and exhaustion my husband and I were facing. We could only pray that our children would connect with Jesus despite our many weaknesses—or maybe even because of them. We also prayed that our faith community would come alongside of us to fill in the gaps and to do so with understanding about our children’s unique questions, stresses and needs.
We needed help from our church and tried to read books that offered biblical insight. When I look back on it now and reflect about faith formation with my grown daughters, I realize that it helped to understand some fundamental things about them:
- The lives of special-needs siblings are hard and their questions are big.
- Special-needs siblings need safe spaces where they can process their grief and perspectives about growing up in family with special needs.
- The process of establishing a sense of self-identity is more complicated for special-needs siblings than it is for their peers.
In order to raise our children to live and lead from a place of confidence, humility, and reliance on Jesus, the collective “we” — the parents, adult Christian friends and Church leaders — would be helped by recognizing these key things about the typically-developing children in a family with a disabled child.
Parents of middle schoolers and youth highly value Christian leaders who will partner with them in facilitating relationships where their kids’ hard questions and feelings can be processed safely. Additionally, spiritual leaders must begin anticipating and exploring questions about identity when special-needs siblings are very young. It may be difficult for these children to separate their personal story from their role in a unique kind of family situation. Much like children whose parents are divorcing, special-needs siblings require us to sensitively foster a clear and confident understanding of who they are but, even more importantly, Whose they are.
Empowering young people from special needs families toward a healthy process of self-discovery and a positive relationship with Jesus gives them a solid foundation for the transition to adulthood. It also creates future leaders who will bring extraordinary perspective and passion to the communities where they live and serve.