We began a series of articles in January of this year with a commitment to helping the church “get to know special siblings and the challenged parents who want to love each of their children well.” During the June Roundtable, we explored a few ways the church can effectively communicate with brothers and sisters who have siblings with special health, developmental or mental health conditions. The Roundtable brought real-life examples and more in-depth discussion to the ideas presented in the article “5 Characteristics of Great Communication with Special-Needs Siblings.”
It’s been a tremendous encouragement to hear from siblings, parents, church pastors, and ministry leaders sharing a heightened interest in serving these family members whose unique hopes and needs can fall under our radar.
At this point, we thought it could be helpful to highlight some practical ideas for the church that are coming out of these conversations.
Nurture Identity in Christ
Being the sibling of someone with special needs can profoundly shape a person’s sense of identity, autonomy, and worldview. Particularly during adolescence, young people are trying to figure out and forge their own path. The church can serve as another support to ensure that the influence of disability in the life of a sibling is a positive one. The church can help young people embrace their family of origin while experiencing freedom in being a child of God.
As Christians, we are children of God firstbefore we are “Bill and Judy’s kids” or “Carly’s sister.” We are all image-bearers of God, chosen by Him as adopted sons and daughters when we receive His gift of salvation. Even before we were born, God wove us together and designed us for a great purpose in His family. Spiritually speaking, our foremost identity comes from our Creator rather than from our role in a “special-needs family” (1 John 3:1-2,Colossians 3:1-3). Nonetheless, the circumstances associated with being part of a family affected by disability can be so consuming as to confuse our understanding or perceptions. As a result, children can be vulnerable to arriving at adolescence naive, restless or resentful about where they want to connect and identify as adults. Parents and church leaders who recognize the nuances of this potential struggle can be more sensitive and intentional about guiding siblings towards healthy self-perceptions starting at a young age.
Be an Advocate
When your youth group student is hesitant to share her weighty prayer requests alongside peers whose concerns seem relatively superficial, please have her back. When a 12-year-old boy is being offered as his little brother’s VBS buddy, please have his back. When a 54-year-old man’s second parent passes away and he is left with full guardianship for his adult sister who is needing a group home, please have his back. Whether you realize it or not, you are surrounded by special-needs siblings in your faith community and each one benefits from knowing someone is willing to go to bat for them when their lives get complicated or they feel weary.
Keep an eye out for times of transition or stress within these families. No matter who is directly experiencing a changing life situation, the sibling or another family member, it affects the whole family and usually in a more pronounced way than in typical families. Whenever the church reaches out with a desire to understand, encourage and support, your effort goes a long way. One simple question can be very powerful:
“How would you like to see this go?”
Special-needs families hope churches won’t be afraid to ask a question like this. My own daughter Erin Jamieson explained during the recent Roundtable how helpful it would have been if someone had asked her this question when her sister with Angelman Syndrome moved up from middle school to youth group. Erin held some distinct feelings about being in youth group with her sister.
You may be worried that asking questions and inviting feedback could open a can of worms and set an expectation that your church can’t fulfill. Consider framing up your conversation with a family member something like this:
I want to know what you wish this situation could look like. And I want our church to come alongside you in every way possible to make things happen in a satisfying way. I can’t promise we’ll get it all right. And I can’t promise we will be able to do everything you hope for either. But I do promise that we care and that we’ll try. We want to learn and grow and serve you and your family well. You matter here and we need you. We hope you will give us grace and patience while we figure this out together. I won’t give up and I hope you won’t either.
Siblings sometimes need help navigating their family dynamics too. Christian mentors and friends can guide siblings in finding their voice, even communicating boundaries within biblical values like grace, gentleness, patience and respect. But be careful to never undermine the relationship with parents or other family members. Keep in mind that parents may already be feeling inadequate, disconnected or guilty about their connection with their child. The nature of constant caregiving means that any family member may be overly sensitive as fatigue and stress levels are high, time is stretched and “typical” siblings may be neglected on occasion (though unintentionally). Parents may feel threatened by the relationships their children have with other adults. And this is especially true when those parents are feeling cheated of the time and energy they dreamed of giving each and every one of their children. Sometimes we parents just need reassurance that nobody is trying to compete for our child’s affections. Ultimately, we appreciate knowing there is a team behind our children who will respect our parenting role but whose primary concern is to ensure they feel encouraged and supported.
In Part 2 on this subject, I’ll offer some ways to support growing faith and make connections to valuable resources specifically for siblings.
Lisa Jamieson is the author of books and Bible studies including the Finding Gloryseries of resources and the new children’s book Jesus, Let’s Talk. She is co-founder of Walk Right In Ministriesand leads the Minnesota Disability Ministry Connection. Lisa and her husband, Larry, have been married 30 years and have three grown daughters. Their daughter, Carly, has Angelman Syndrome and lives at home with them in Maple Grove, Minnesota.
