Unsung Heroes: Special-Needs Siblings

A new year is a wonderful time to freshen our perspectives. In disability ministry, we are usually trying to understand and support parents and their children with disabilities. Less often, we consider the siblings of those who have the special needs. Let’s call them “special siblings.” 

Somewhere in our church halls there is a 3-year-old waiting to read a book on someone’s lap because mom was at the hospital all week with her brother. There’s a teenaged girl who longs for her fellow youth group students to initiate friendship with her brother who has autism. There’s a middle-aged man coordinating care for his aging parents while navigating a group home transition for his sister with Down syndrome. And there are parents whose hearts are aching, hoping someone will come alongside their children who are learning life’s hardest and best lessons from behind the scenes of a complicated life. 

Has your church been thinking about the unique needs of the special siblings in your midst? 

How might their perspective be different from typical siblings as they arrive in your building and participate in activities? 

How do those perspectives or needs evolve as they grow from early childhood through adolescence, young adulthood and later seasons of life? 

How is the parenting of typical children in a home where there are special needs different from the parenting in a family that is not affected by disability?

How can churches best support the entire family unit, including the spiritual health of siblings whose sister(s) or brother(s) has health or developmental challenges?

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As the parents of three grown children, including a 19-year-old daughter who has Angelman Syndrome, my husband and I wanted to be part of churches that were asking these questions. Through conversations in my family and with hundreds of others around the globe, I hear a passion rising to help families raise thriving children and enjoy positive relationships with them despite the demands associated with disability. As my own family has stumbled through the ups and downs of church life, we’ve prayed that the greater Church would become increasingly effective in encouraging and supporting special siblings and those who parent them.

Reports from the National Sibling Research Consortium suggest that siblings of adults with disability are generally doing very well. Many special siblings say they have benefited in multiple ways. But studies also suggest that when there is neglect, even when it is unintended, special siblings may experience more functional problems, depression and anxiety disorders (Goudie A, Havercamp S, Jamieson B, et al. Assessing Functional Impairment in Siblings Living with Children with Disability. Pediatrics. 2013).

Certain factors increase risk for the siblings of family members with disabilities:

  • Excessive caregiving
  • A negative perception of parents’ differential parenting 
  • Poverty, mental health of parents, drug or alcohol abuse in the family system
  • Acute behavior problems that directly affect the sibling(s)
  • Birth order

Parents hear daunting statistics about the success or failure of marriages affected by disability and they worry. They also fear that their children will be vulnerable to problems in life because they grew up in a special needs home. After speaking with a group of moms recently, my own daughter made a perceptive observation. “Mom,” she blurted with new recognition. “When someone’s child gets a diagnosis, what they really hear is a life sentence of never being enough. Nothing they ever do for their special needs child will be enough to fix it. And while caring for their child with special needs, they will never be enough for their other children.” 

As churches leading these scared parents, let’s commit to helping families identify with the winning side of statistics and face their unique situations successfully. What children in a special needs family want more than a sibling who is typical is the confidence that their parents’ marriage and the state of their family will be good. And when families do become fractured, let’s embrace them with grace, prayer and hope. 

In many cases, we are also looking at a new generation of caregivers who need confidence that their church has their back while God comforts, guides, and strengthens them for the invaluable roles they play in their families. Siblings of people with special needs are unsung heroes. They will often end up logging more hours as caregivers than their parents. Many start helping out with cares at a very young age and then become adults who simultaneously care for parents, siblings, and their own children. The church can help them grow up with the heart of Jesus for others, equipped by the power of the Holy Spirit and with absolute assurance that they are valued and not alone. 

Foundational ways your church can extend Jesus’s love: 

  • Share biblical truth and encouragement. There are certain truths and promises from God that are especially important for parents and their children to hear in light of being a family with unique needs. As church leaders, let’s get to know what those are while being intentional about speaking affirmation and hope into their lives.
  • Empower parents and each of their growing children. We can reassure and equip parents as well as their children to live on the winning side of statistics. Our God, who created the world out of nothing, defeated death on the cross and transforms us into new creations, makes His power and hope readily available to us. 
  • Stand with your special needs families. Make sure they know you’ve got their backs in good times and in bad times. These parents, who must advocate every day and in every arena on behalf of their children with special needs, are eager to experience a community where they feel safe, unjudged, and restful. Foster a fellowship where others go to bat for them and their family in life and faith.
  • Pray consistently and persistently for your special needs families. Keep them on your prayer chains. Check in when you haven’t seen them to let them know they are missed when gone. Meet with them at least once a year to pray for them and ask questions to learn from their valued perspectives. 

In 2018, we’re going to spend time getting to know special siblings and the challenged parents who want to love each of their children well. These families have unique perspectives, needs and gifts to offer our communities.

Lisa Jamieson is an author, speaker and advocate who founded the Minnesota Disability Ministry Connection and serves as executive director of Walk Right In Ministries. Lisa had been working as a professional writer and corporate training designer for over 15 years when her third daughter, Carly, was born with Angelman Syndrome. In their first book together, Finding Glory in the Thorns, Lisa and her husband, Larry, recount the early years of Carly’s life and what happened when the community loved her (released by Ambassador International in 2008). Since then, Lisa has authored the Finding Glory Group discussion curriculum, Living Your Glory Story, and the children’s book Jesus, Let’s Talk which celebrates young people of all abilities from around the world and highlights key prayer words using American Sign Language. The Jamieson’s story has been featured internationally on television and radio including "Words to Live By," Canada's "100 Huntley Street" and My Refuge Radio Belize. Lisa and Larry have been married almost 30 years and have three grown daughters. Carly lives at home with her parents in Maple Grove, Minnesota.
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Learn more about our upcoming conference, Inclusion Fusion Live!