Ten Ways to Offer Pastoral Care to Families with Special Needs
By Dr. Lorna Bradley
Pastoral care is an important part of living in community. In times of crisis the care a person or family receives from a faith community can make a tremendous difference in how well they cope. With a serious health diagnosis or a death in the family, most congregations have an innate understanding of what is needed: meals, transportation, encouragement, space for grief. When a family is raising a child with special needs the ways in which a congregation can offer pastoral care may not be as obvious, but they are every bit as much needed.
Every family living with special needs is different. Some live with ongoing fragile health. Others have challenges due to developmental delays and intellectual disabilities. Some families have extended family nearby for support. Others are more isolated. There is no “one size fits all” answer. Here are a few ideas for congregations to consider when offering pastoral care:
1. Celebrate every birth. All children are a gift from God. Families who have children diagnosed with differences at birth sometimes do not receive the same celebration or attention as given to other families. For example, one parent I spoke to whose daughter was born with Down syndrome was surprised to receive a con- dolence card from a member of her church after the birth of her daughter. While her daughter’s life will be different than they had anticipated, and they did need to adjust to the news, the par- ents did not equate her diagnosis to something tragic deserving of sympathy.
2. Make hospital visits. For some families, hospitalizations become a way of life. It may become old news to the pastoral care team, but for a child with fragile health each hospi- talization could be a life or death situation. Stopping by to offer companionship, prayer, and distraction are much appreciated. Check with the family ahead of time to see when is the best time to visit.
3. Continue care after the casseroles stop coming. Whether helping a family adjust to the news of a diagnosis or offering support during a hospitalization, keep in mind that the circumstances of special needs remain once the “crisis” has passed. Families with special needs are at increased risk of isolation. Continue to check in regularly with families who have special needs. Care partners who create an ongoing relationship offer a valuable way for families to stay connected to congregations.
4. Make room for emotions. The shock of diagnosis can give way to a roller coaster of emotions that last for a long time. Depres- sion, anger, grief, and guilt may surface again and again. Parents need spiritual counsel and a listening ear. Pastors, Stephen Ministers, or other people in lay ministry can offer an important resource for families to process emotions and receive spiritual support.
5. Offer financial support. Medical ex- penses, prescriptions, therapies, and special schools all create financial strain for families. Many families with special needs are one-income households due to one par- ent needing to provide full-time care or due to being a single-parent household. There are many ways congregations can help. Waive fees for church events such as retreats, set up a scholarship fund for contributions from the congregation, help with research for grants and other local opportunities, offer a finan- cial planning seminar, fundraise for a specific need (wheelchair, bed, etc.), create a parking fund for families with frequent hospitaliza- tions, or periodically offer gift cards to local grocery stores, gas stations, and restaurants.
6. Remember siblings. When one child in a family has extraordinary needs other siblings may necessarily receive a smaller amount of attention. Intentionally invite and include siblings of children with special needs. Mentors play a valuable role in the lives of siblings. Consider creating a support group where they can process their experi- ences. For more insight into the experiences of siblings view the video “Recognizing Glass Children” by Alicia Arenas at TEDx San Antonio.
7. Offer respite. Families with special needs often have little opportunity for respite from caregiving. Resources may be limited, making it hard to afford a night out. Qualified caregivers may be hard to find. Offering periodic respite to families is an important way to increase family resilience and include the family in the life of the con- gregation. Respite may be an evening of care for loved ones and siblings at the church or could be offered one on one in the home.
8. Provide information. Families with a new diagnosis are likely unaware of re-sources in their community. Helping families find information about local support groups, upcoming seminars, websites, and other re- sources is helpful. Use judgement based on the individual circumstances. People who do not use the internet may find this especially helpful, as will people who have hectic sched- ules and appreciate someone saving them the time and effort. Someone who is especially private may prefer to do their own research.
9. Create connections. It is very helpful for parents to connect with others who have been on a similar journey. Offering a support group is a great way for parents to share emotional support as well as infor- mation about schools, doctors, therapists, and other resources. Support groups create a valuable place for parents to share their feelings and experiences with other parents who truly understand. Also, it is helpful to introduce parents to others within the con- gregation who may share a similar diagnosis or life experience. Finally, members of the congregation may have other expertise to share related to legal, financial, medical, or educational matters.
10. Include and invite. When offering Bible study opportunities, chil- dren’s choir, Wednesday night dinners, and other church events specifically invite and include families with special needs. These families may have had bad experiences at other churches and feel these “extra activ- ities” apart from worship are not for them. They may not feel comfortable asking for accommodations. For example, a parent with a child with special needs likely needs extra help at home to be able to attend a re- treat. Continue to invite caregivers to future events, even when invitations are declined. Special needs lives and schedules are com- plicated. Expect to hear “no” several times before hearing a “yes.” It still feels good to be invited even if unable to attend. Also, find creative ways to include those who miss events. Send a video message from the group “wishing you were here,” encourage children to make artwork for a classmate who is ab- sent, use Skype or other videoconferencing options to include a parent in a Bible study if they cannot attend in person.
As always when offering pastoral care, ask the family what they need and be in tune to the circumstances. Every family is different. Some may want help with meals and errands. Others may want a prayer partner or simply an occasional card in the mail. There are many ways to offer care.
Dr. Lorna Bradley is author of Special Needs Parenting: from coping to thriving, an ordained deacon in the United Methodist Church, wife, and special-needs parent. Despite generally feeling slightly behind on writing deadlines, she greatly enjoys running,travel,scuba,and watching amusing cat videos. SpecialNeedsParenting.me, Facebook: facebook.com/ LornaBradleyAuthor, Twitter: @revdoclorna