“When you have a child with a disability the worry is twofold: managing the issues in the moment—and what the future will bring, ” explains Karen Pilkerton, who knows these worries personally. Her oldest daughter, Ali, has Down syndrome. Caring for a developmentally disabled child, like any parenting experience, is filled with joyful moments and unexpected challenges. But parents of the developmentally disabled, unlike other parents, never stop being caretakers, even when their children are grown. For Pilkerton, mindfulness was the perspective-changing experience that allowed her to renegotiate her role.
The benefits of mindfulness for physical and mental health have been well documented, but much less is known about whether it is helpful to caretakers, especially parents of developmentally disabled children (e.g., children with autism or Down Syndrome). Professor Elisabeth Dykens, director of the Vanderbilt Kennedy Center at Vanderbilt University, and colleagues attempted to study this overlooked population. Dr. Dykens says that there are many techniques she could have chosen to help parents but she chose mindfulness because it is “more accessible, quite frankly, doesn’t cost that much—and one can learn mindfulness practice in all kinds of ways.” Another way she tried to make these techniques more accessible was to have parents like Karen lead support groups. Peers may even have an advantage over professionals, explains Dr. Dykens, because “parents often feel when they discover that you’re a parent, you know what it’s like. You’ve walked in my shoes.”
In this study, published in Pediatrics, peers led one of two kinds of support groups: a mindfulness group or a positive adult development group. In the mindfulness intervention, parents learned about self-observation without self-evaluation, Qigong (a gentle movement technique), and several meditations. In the positive adult development group, participants learned techniques based on positive psychology, including ways to soften negative emotions by recognizing personal strengths and practicing gratitude, forgiveness, and other positive attitudes. Members of both groups discussed how to apply their respective techniques to coping with the day-to-day challenges of being a caregiver.
Six months after the study, participants in both groups said they felt less worried, had more positive moods, and slept better, but the improvements occurred faster for participants in the mindfulness intervention compared to those in the positive adult development group.
“We had one mother who had lots of sadness and anger,” Pilkerton confides. “By the end of the six weeks, she said it was the first time she had not cried on the way to the mailbox. The class had given her a way to process a lot of her sadness, to be with it in a skillful way that she could metabolize it.”
“When you raise a child with a developmental disability,” says Dr. Dykens, “it is a lifelong process—it happens from day one or early childhood.” Group members learned to practice a brief mindfulness-grounding technique several times a day, the goal being to live in the present moment rather than just get through the day. In a more mindful state, parents are less reactive to everyday stresses, more patient, and better able to think and respond effectively to various challenges.
As Dr. Dykens explains, mindfulness isn’t just a technique to cope with the stress; it’s a way to fully embrace one’s role as a caretaker, living in the present moment with joy and appreciation, no matter what that moment may bring.
5 Steps to Avoid Caregiver Burnout
A recent survey by the National Alliance for Caregiving found that one-third of caregivers don’t have any additional support, often perform tasks once carried out by medical professionals, and often work outside the home, so it’s no wonder that so many caregivers experience burnout. Here’s a tested way to help.
- Develop a mindfulness practice, whether it’s yoga, meditation, or Qigong.
- Incorporate mini-mindfulness moments. Set aside time several times a day to ground yourself and to be in the present moment.
- Learn to accept your emotions, both pleasant and unpleasant, rather than wishing them away.
- Recognize the need for self-care in caregiving. Taking time for yourself may be an old piece of advice but it’s essential.
- Find a support network that can help you build a mindfulness practice, whether it is your friend, the YMCA, or a meditation group.