Families with special-needs children find respite at DR
by William J. Dagendesh
(Photos: Volunteers in the Night Lights respite care program assist children with arts and crafts projects. Photos courtesy of Heather Haubenschild)
COLORADO SPRINGS. Caregiving can be a highly demanding, stressful responsibility for which no one person can adequately perform full-time without assistance.
Family members also require support and attention in order to maintain their own health and well-being. Respite care helps parents or caregivers take time to refresh, recharge their batteries and enables them to cope with caregiving.
For this reason, Divine Redeemer Parish, 927 North Logan Ave., is offering free respite care for special needs children ages one month to 13 years. Divine Redeemer serves as a host church for the Littleton-based Christian nonprofit Night Lights, Inc. (NLI), which exists to provide respite care for children.
Father Jason Keas, pastor of Divine Redeemer, learned about the program through a family at the parish with a special needs child.
“I visited an established NLI program in Denver. I saw how families with special needs felt welcomed and loved, and able to take a break and have a date night. I started right away, and we are up and running and helping families get a break and support they need,” said Father Keas. Divine Redeemer offers respite care from 6:30-10 p.m. on the second Friday of each month.
Executive Director Heather Haubenschild said NLI understands that siblings of children with special needs often become secondary caregivers learning to perform simple medical tasks. “They may feel like the invisible child, making sacrifices and feeling overlooked due to their sibling’s diagnosis,” Haubenschild said.
Kristin Steadman founded NLI when her son’s rare neurogenetic disability made getting childcare challenging. She created a place where children with special needs were accepted and cared for, and where siblings could attend.
“She knew the financial strain that existed for families like hers and felt it necessary to keep respite care accessible, so cost wasn’t a factor,” Haubenschild said.
In 2023, Haubenschild stepped down as board chair at Children’s Hospital and took the reins as NLI executive director. A hospital co-worker who resides in Colorado Springs with a special needs child told Haubenschild how Father Keas always made her feel welcome and said he might be able to help bring NLI’s respite care to the area.
“I reached out to Father Jason and he was very receptive to bringing NLI to Divine Redeemer,” Haubenschild said.
“I have known families with special needs and know how difficult it is being on for their children and never get a break,” Father Keas said. “Sometimes families feel they can’t attend Mass because their children may cause an interruption. We need to help families who are going through this challenge.”
In respite care, children are paired one-to-one with a trained volunteer who is background-checked and supervised. Crafts and activities, ranging from games to movies, are offered for all ages and abilities.
Most events have a specific theme ranging from farm and carnival to an annual Christmas party. Crafts and activities are selected specifically to support the theme. Sites are encouraged to have special guests at respite care such as storytellers, therapy animals, adaptive yoga and music therapy customized to fit the children’s ability.
NLI ensures that there are enough volunteers for one-to-one care for children who have special needs, plus additional volunteers to supervise the siblings and older children. Each site has a paid nurse to ensure the safety of all the children.
“Children are encouraged to guide the play toward what interests them and play with their peers. When the weather is suitable, the children go outside to play on playground equipment, use sensory bins, play with bubbles and run around. The evening wraps up with a movie,” Haubenschild said.
“The children that attend have a huge variety of special needs, including some that need g-tube feeds and those with vision impairment as well as children with Autism and Down Syndrome. So, we take special care in selecting crafts, toys, activities, special guests and movies that will appeal to the majority of the children,” she said.
Funding comes from donors, grants and in-kind donations. And, because of this generosity, NLI provided care to more than 30 families in 2023. This amounted to childcare for about 30 children with special needs diagnoses and more than 20 siblings.
“In our annual survey, 85% of parents say the 1:1 care we offer is their favorite things about NLI. One hundred percent say NLI has helped improve the relationship between parents, and 100% said NLI has a positive impact on their family’s overall well-being. Seventy-one percent of parents rely on NLI to help them have a date night,” Haubenschild said.
According to the Colorado Respite Care Coalition, respite care improves family functioning, improves satisfaction with life, enhances the capacity to cope with stress, and improves attitudes toward the family member with a disability. By receiving respite care, a family member can relieve their stress, renew their energy and restore balance to their lives.
Respite care offers numerous benefits:
Enhanced quality of care: Respite care can ensure caregivers have the time and energy to focus on their own well-being. This can lead to improved overall care quality when re-assuming caregiving duties.
Maintaining independence for care recipients: Introducing temporary caregivers give care recipients the opportunity to interact with other people, thereby maintaining a level of independence.
Physical, emotional renewal: Caregiving can result in burnout, exhaustion and, in some circumstances, death. Respite care enables caregivers to recharge their batteries which can reduce stress and prevent negative health impacts.
Preventing hospitalization and emergency situations: Regular respite care can help identify potential health issues or challenges early on, thereby preventing emergency situations and hospitalizations.
Social connection, support: Respite care provides opportunities for caregivers to connect with friends, family or support groups. Social interactions and support networks figure heavily in maintaining emotional health and resilience.
Supporting family dynamics: Respite care allows family members to share caregiving responsibilities that helps prevent any single individual from becoming overwhelmed. This collaborative approach ensures caregiving responsibilities are distributed, thereby reducing stress on family members.
Since 2011, NLI has provided more than $1.6 million in free respite care to the special needs community. NLI welcomes everyone regardless of their financial situation. NLI has consistently served 30 children and 17 families monthly across three sites, and expects those numbers to double between adding sites in Colorado Springs and Parker.
“NLIs’ reach is immeasurable because it’s hard to identify the number of people who have indirectly benefit from parents getting a break and children having a supportive social circle,” Haubenschild said. NLI also has host sites in Arvada, Boulder, Broomfield, Denver, Golden and Lakewood.
To learn more visit nightlightskids.org or email info@nightlightskids.org.