All parents endure stress, but studies show that parents of children with developmental disabilities, like autism, experience depression
and anxiety far more often. Struggling to obtain crucial support
services, the financial strain of paying for various therapies, the
relentless worry over everything from wandering to the future — all of
it can be overwhelming.
“The
toll stress-wise is just enormous, and we know that we don’t do a
really great job of helping parents cope with it,” said Dr. Fred R.
Volkmar, the director of Child Study Center at Yale University School of
Medicine.
“Having a child that has a disability, it’s all-encompassing,” he added. “You could see how people would lose themselves.”
But a study published last week in the journal Pediatrics offers hope. It found that just six weeks of training in simple techniques led to significant reductions in stress, depression and anxiety among these parents.
Researchers
at Vanderbilt University randomly assigned 243 mothers of children with
developmental disabilities, genetic syndromes or psychiatric issues to
mindfulness training or “positive adult development.” At the start of
the study, 85 percent of the participants reported significantly
elevated stress; 48 percent said they were clinically depressed, and 41
percent reported anxiety disorders.
The
first group practiced meditation, breathing exercises, and qigong
practices to hone mental focus. The second received instructions on
curbing negative thoughts, practicing gratitude and reclaiming an aspect
of adult life. Both groups were led by specially trained mentors,
themselves the parents of special-needs children.
Part
of what makes the experiment innovative is that it was targeted to
adults, not their children, and it was not focused on sharpening
parenting skills. Instead, parents learned ways to tackle their distress
as problems arise. The idea is to stop wasting energy resisting the way
life is.
The
mindfulness treatment and positive adult development led to significant
reductions in stress, anxiety, depression as well as improved sleep and
life satisfaction among participants. But the mothers in the
mindfulness group saw greater improvements in anxiety, depression and insomnia
than those who receive positive adult development training. (As there
was no control group, it’s hard to know how many parents might have
improved on their own.)
Stress-reduction
groups like these could be a cost-effective way for parents to help
other parents, Dr. Volkmar said: “We could think about doing this more
broadly to reduce stress and improve quality of life” — for siblings,
too.
In August, manuals detailing the two strategies
— mindfulness and positive adult development — will be available online
for $200 each ($350 for both manuals) for parents of special-needs
children who want to start groups.
Learning
to quell distress and anxiety is especially important for parents of
children with development disabilities because it’s often a lifetime
caregiving commitment, said Elisabeth M. Dykens, the lead author of the
Vanderbilt study.
“Other
21-year-olds move out and take jobs, but most of these children stay at
home,” said Dr. Dykens, the director of the Vanderbilt Kennedy Center.
“You have aging parents and aging offspring. You are each other’s for
life.”
Still,
just as some middle-aged caregivers of elderly parents are reluctant to
shift the focus to themselves, so are some parents of special-needs
children. The Lexington Center in Fulton County, N.Y., is already using
the positive adult development curriculum, after two people involved
with the Vanderbilt research trained seven mentors last November. But to
persuade parents to attend, the center has had vigorously advertise,
call and email.
“They
are so stressed to begin with,” said Nancy DeSando, the director of
community supports at the center. “To get them to consider one more
thing is very challenging.”
Karen Pilkerton, a registered nurse
and a peer mentor who led mindfulness training at Vanderbilt, said
participants tended to think, “I don’t have time for self-care.” By the
end of the six weeks, she said, they realized, “ ‘When I fill my own
cup, I have more to give.’ Sometimes, they didn’t realize how depleted
their cup was.”
Indeed, one 2008 study
by psychologists at Swansea University in Wales noted that high levels
of parent stress reduced the effectiveness of interventions for the
child.
Phil
Reed, a psychologist at Swansea and author of the coming book,
“Interventions for Autism, said, “It’s good that people are beginning to
look at how we can help parents in and of themselves.”
Janet
Shouse, a mother of three including a son on the autism spectrum, led
positive adult development groups for the study. One lesson entailed
parents allowing themselves to grieve for the dreams they’d once had for
their child — but then to limit the time they dwell on that loss.
Another lesson Mrs. Shouse had to learn herself: how to redirect anxiety into positive action.
She
spent years panicking that she wasn’t doing enough to get her son Evan,
now 18, to learn to talk by age 5, or 7, or 10. (She had been told if
he didn’t converse by a certain age, he never would, but the deadline
kept changing).
The first and last time he asked for food, he wanted an apple. She was thrilled.
“It
wasn’t until that apple incident, I finally realized, if he’s not able
to communicate more adequately, I’m O.K. with that,” Mrs. Shouse said.
“It was such a huge relief that I wasn’t striving to do all this therapy
and to make every moment a teaching moment.”
During
the sessions Mrs. Shouse led, she tried to help other mothers
understand it’s O.K. to “enjoy their kids as kids” and to not make “all
moments edifying.”
In
retrospect, Dr. Pinter said, it’s easy to see how stressed she’d become
caring for Nicholas, who just got a job at a church farmer’s market on
Sundays. She ground her teeth and chewed ice. At restaurants, she used
to crinkle paper straw covers compulsively, but not when her son was at
camp. “When we picked him up, I’d start back up again,” she said.
Practicing
mindfulness has helped her live more in the moment. “So many people
think it’s just out there or ‘I can do it on my own’ or ‘All I need is
more money,’” she said. “They don’t know how much it can help.”
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