Molloy Professors Kestemberg and DeGennaro featured in Counseling Today article

Group effort By Laurie Meyers

Here is a portion of the article.

When the caregivers need care

Laura Kestemberg is the director and associate dean of the newly established clinical mental health counseling master's program at Molloy College in Rockville Centre, New York. For the past few years, she has been researching stress in parents of children with autism. Along with fellow ACA member Laura DeGennaro, Kestemberg joined Molloy's initiative to launch an interdisciplinary autism center.

As Kestemberg and DeGennaro, the clinical director and clinical coordinator, respectively, of the proposed autism center, worked with these children, they identified another group that needed help - the children's parents. The social and behavioral impairments that accompany autism cause challenges that permeate almost every aspect of a family's life, Kestemberg notes. "Parents [of children with autism] feel very isolated and ashamed and that it's just them," she explains. "Sometimes it's been them [alone] battling with the school system or battling with providers."

Parents of children with autism often experience a lack of social support, Kestemberg says. It's not uncommon for friends and family members to pull away, and even if they don't, it's difficult for them to truly understand what the family is going through. But parents of other children with autism do understand, Kestemberg says, which makes a group counseling approach particularly helpful for them. In addition, group counseling has been shown to be very powerful for populations experiencing high levels of stress.

Both Kestemberg and DeGennaro had previously worked with parents of children with disabilities. "So we decided to put our heads together and try to have a clinical intervention for the parents," Kestemberg says. They approached John Carpente, executive director of the proposed autism center and director of the Rebecca Center for Music Therapy at Molloy College, about providing this clinical resource for parents and collecting data on parenting stress.

As they were developing the group, Kestemberg and DeGennaro assumed they would run across other groups that focused on supporting the parents of children with autism, but that wasn't the case. "We found that there were a lot of advocacy groups and a lot of parent training groups," Kestemberg says. In training groups, counselors help parents learn to manage the child's acting-out behaviors or show parents how to help the child manage in the school setting. "But it's always about the child," Kestemberg stresses. "We wanted ... to do something where they could come to a group and [we could] say, 'We're going to talk about you - the parents, not your child. And we're going to provide you with the strategies to help reduce your stressors.'"

Kestemberg and DeGennaro struggled with determining when to hold the group. They finally decided on the summer, when most children were still in summer camps, during the middle of the day. Evening groups were too difficult to coordinate because many of the parents didn't have good child care options, and Kestemberg and DeGennaro didn't yet possess the resources to offer child care while the group met.

Participants were recruited from the Rebecca Center and other local organizations that provide services to children with autism. Kestemberg and DeGennaro conducted a telephone intake interview with each parent. Although they wanted the group to include fathers, the mothers had greater availability. They ended up with a group of five women who met for 90-minute sessions 10 times throughout the summer of 2014.

Kestemberg and DeGennaro started each session by going around the circle and asking each woman to update the group on the most important things that had happened during the past week. At first, the women were more likely to bring up problems their children were having. "We tried to steer them toward what was going on with them or how what was going on with their child affected them," Kestemberg says.

At first, it was difficult for some of the group members to open up. "The mindset was, 'If I let a little bit out, I just won't stop crying,' or ... 'I'll have so much anger that I'll blow people away,'" Kestemberg recalls.

Little by little, as Kestemberg and DeGennaro reassured the members that the group represented a safe place with others who were going through the same challenges, the women began to share. They talked about very painful topics, such as deciding whether to have another child, feeling alone in their marriages or yelling at their offspring and how ashamed they felt about doing that in the face of the child's disability. "And other women in the group would say, 'You know, I've done that too,' or 'I also think my marriage isn't going so well,'" Kestemberg says.

As the women shared, an important concept became evident to each group member: "You are not alone." In turn, this helped the group work toward the goals that Kestemberg and DeGennaro had set for the parents, which included:

  • Feeling more empowered
  • Decreasing their feelings of guilt
  • Decreasing their stress levels
  • Becoming more aware of their own needs
  • Learning to use more positive coping strategies

The experiences the women shared weren't just helpful emotionally but practically as well, Kestemberg says. For example, one mother expressed concern about going in front of a school district special education committee to talk about her child. These meetings involve educators, service providers and parents getting together to decide how best to meet the needs of the child. However, the gatherings can be emotionally charged because these parents often feel like it is a struggle to obtain the proper services for their children. Going in front of the committees, they feel the burden of having their facts straight and presenting a compelling case concerning why their requests for their children are valid.

In the case of this mother, the other group members suggested role-playing to help her prepare. Several of the other mothers had already gone through similar hearings, Kestemberg explains.

Another common experience the women reported was feeling like they had to gird themselves before entering the house upon returning home. "A lot of our moms ... said, 'I'm so stressed that I can't go right into my house. I sit in my car, have a cup of coffee, listen to the radio or do what I have to do before I have to face the chaos of what's going on in the house,'" Kestemberg reports.

To help them cope with these overwhelming moments, DeGennaro and Kestemberg taught the mothers mindfulness techniques such as meditation, deep breathing, observing thoughts, mindful eating and walking, body scans and guided imagery. They also closed each session with a meditation or relaxation exercise and asked group members to practice the mindfulness techniques themselves as homework. Kestemberg and DeGennaro also informed the mothers about mobile apps for relaxation such as Stress Tracker, Breathe2Relax, MindShift and Take a Break! Guided Meditations for Stress Relief.

But so much of the benefit from the group came from what its members gave to each other, like offering to role-play, Kestemberg says. "[The group] was much more powerful than meeting with a therapist or mental health care provider one-on-one because they were with other moms who had gone through it," she emphasizes.

The group ended up being a mix of mothers with children who were very young and newly diagnosed with autism and mothers whose children were as old as 18. Kestemberg and DeGennaro initially thought it would be best to separate participants by age or level of severity of diagnosis, but because the total number of recruits ended up being so small, there was a need to combine them. This was a serendipitous necessity because it allowed the mothers with children who were newly diagnosed to see that there were other mothers who had "survived" and flourished throughout the school years.

These shared experiences resulted in a strong bond forming among the group members. The mothers would email each other between sessions to trade resources or just to offer support.

Kestemberg and DeGennaro conducted both pre-group and post-group parental stress assessments but did not find a significant decrease. However, they think that the mothers' experience of opening up and actually acknowledging what they were going through may partly account for the results. Acknowledging the strain may have changed the way they reported their stress levels, DeGennaro explains.

This was only a pilot study, but DeGennaro and Kestemberg already have a waiting list for this summer's groups. They intend to increase the number of sessions and plan to measure participants' coping styles and levels of loneliness, anxiety, depression, subjective well-being and hope.

Full article.