Just like their parents, it is common for special-needs siblings to experience seasons of grief associated with the disabilities affecting their family. Unfortunately, the internal struggles of children in a special needs family can be inadvertently overlooked by stretched parents or naïve mentors and church leaders. Sometimes parents simply feel ill-equipped to handle their children’s questions, anger or sadness. Nonetheless, these young people need freedom to wrestle with questions and explore their sorrow where they can receive rich amounts of empathy, ample space to process their feelings and opportunities to sift their perspectives through biblical principles.
Siblings in a family affected by disability need information and want to make sense of their situation. Their questions, feelings and perspectives typically change through different developmental stages of life. Here are some of the questions my own children were able to articulate—sometimes accompanied by significant emotion—as they were growing up in a special needs family:
childhood: Why can’t I hold my baby sister?
adolescence: Why does our family have to be so high-maintenance?
adulthood: How do I stop feeling guilty when I get to go away and have a break (or a life beyond my family) but my parents get no relief from their caregiving responsibilities?
How parents, mentors, pastors and other church leaders respond may be similar to how we have conversations with our young people about other tender issues like sex—with more complex and vulnerable layers of information as they mature.
Too often, children wonder about things silently or something limits their ability to articulate questions or concerns (e.g., age, emotional maturity, confusion or overwhelm, feeling unsafe to express deep thoughts and feelings without judgment). Children benefit from help exploring and articulating what is ambiguous or confusing to them, especially when they sense a freedom to do so where their emotions will be honored rather than edited.
So, what are some of the questions special-needs siblings wonder about?
What’s going on?
When is my turn?
Why do mom and dad (and maybe older siblings) seem worried/sad/stressed?
Why is my sibling different?
Am I good enough?
Why do people look at him/her/us that way?
What do my friends think?
Why did I get to be the healthy one?
How can I get a break?
Who am I apart from this unique family?
Will my parents be able to sustain their marriage and a “good life?”
Who will take care of my sibling when my parents can’t?
Will my spouse be comfortable with my special sibling situation?
Does my personal experience influence my career?
Do I want to have children?
When the church supports a healthy grief process for the parentsof a child with special needs, they will also be equipping those parents to support their own children through a healthy grief process. Sometimes that may require a pastor or respected church leader to gently caution a parent whose grief may be perceived to eclipse their child’s grief. How a child perceives their parents’ grief can stunt their own, trigger resentment or cause a child to feel responsible for the parent’s well-being.
It is a great gift for special-needs siblings to have parents and spiritual leaders who recognize they will have questions and who will be available and attentive to exploring those questions with them. School guidance counsellors, behavior intervention specialists and professional counsellors can all be appropriate places for parents to seek support. But spirituallysafe places for a sibling to ask questions should include Sunday school, youth group, small group, a pastor’s office, confirmation mentors and Christian friendships. Sometimes these will be the idealsafe places siblings have to ask such questions because those conversations can include reassurances about the compassion of Christ and the sovereignty of God. And though the church doesn’t need to have all the answers (just listening is highly valuable), the church may be the only place where someone will hear the true and god-honoring answers to their questions.
In order for young people to grow in emotional health and mature in their faith, they must have adequate opportunity to ask their questions, process their feelings, share their ideas and—perhaps most of all—have their perspectives valued within a process that is undergirded in prayer.
Lisa Jamieson is one of our speakers at this month's Inclusion Fusion Live conference. Register today!