This article was published in health section of The San Diego Union-Tribune on March 19, 2019.
Quiet heroes: Caregivers of children with disabilities face big pressures, rewards
When Leslie Born’s first child was born in September 2014, the medical team quickly realized something wasn’t right. Her newborn son had low muscle tone, feeding challenges and developmental delays. But what was the cause?
This diagnostic mystery led to a month-long stay in the neonatal intensive care unit (NICU), several inconclusive genetic tests and numerous follow-up visits.
It took nearly a year before geneticists finally arrived at a diagnosis: a rare disorder called Schaaf-Yang Syndrome. At the time, her son was the 17th case diagnosed in the world, and the only one in San Diego.
“I have yet to meet a doctor who has heard of my son’s condition before I’ve told them about it,” Born said. “You go to the doctor to seek answers. But a lot of the times we’re the ones with answers for the doctors.”
While their son’s syndrome is uncommon, the Born family of Poway is not alone. According to 2015 data from a U.S. Census Bureau survey, approximately 18,000 children in the county have a major disability.
“The technologies have gotten so much better that children are actually are surviving and living longer than they ever have been before,” said Dr. Bretten Pickering. He is the medical director for the Rady Children’s Hospital Special Needs Clinic and clinical professor of pediatrics at UCSD School of Medicine.
For the last 25 years, Pickering’s medical practice has focused on children with the highest level of medical complexity. Many of his patients are dependent on wheelchairs, feeding tubes, breathing devices and round-the-clock nursing care.
“The stress level for these families is very high,” Pickering said. “There is also significant medical and financial stress because of all of the needs that their children have which are not covered by insurance.”
Carlos Flores is executive director of the San Diego Regional Center which serves nearly 30,000 adults and children with disabilities in the county.
He said in many families where both parents were working, one will decide to quit to care for their child with the developmental disability. Statistics show approximately 40 percent of primary parents will leave the workforce.
“In some cases, it just changes the family dynamic,” Flores said. “There is a large amount of care.”
Five months into her son’s life, Born became a full-time caregiver. The number of therapies and appointments her infant son required were incompatible with her full-time work schedule.
Medically fragile children are also more likely to require unexpected hospitalizations which may pull their parents out of work.
While there is little statistical evidence that parents of children with special needs have overall higher divorce rates, both Pickering and Flores anecdotally state they can see the enormous pressures caregiving can place on the marriage.
“We see a lot of families breaking up because of the stress,” Flores said.
Deborah Setzer of Jamul has two grown children and an adolescent daughter on the autism spectrum.
“When your whole life becomes consumed by a special needs child it becomes pretty much all you (and your spouse) have in common,” Setzer said. “It’s hard to break away from that when you have a chance to be a couple.”
Her special needs journey began when her youngest daughter was born deaf. She received a cochlear implant when she was 3 years old. Her autism diagnosis came at age 5. Now 17, her daughter has difficulties behaving socially, practicing hygiene, and communicating. Currently, she is at risk of engaging in self-injurious behavior, such as banging her head against hard surfaces.
“Our daughter is going to need caregiving the rest of her life,” Setzer said. “She doesn’t have a sense of danger. It’s constant care. We don’t even leave her in the house to go to the store which is 50 feet away.”
Setzer and her husband are retired from careers in law enforcement. They have one paid caregiver that they can rely on occasionally to help but find it difficult to get a much-needed time away. “We’re tired, we’re exhausted,” Setzer said.
A lack of qualified homecare nurses in the state can make it hard to get support, even when a family is eligible for respite care. “In San Diego County, there is a lack of nurses, so there are inadequate nursing respite services,” Flores said.
RegisteredNursing.org has predicted that this trend will continue and California’s nursing shortage will be the country’s highest by 2030.
In Pickering’s practice, helping his patients thrive often requires looking at the family as a whole. “You have to put down the keyboard and sit and talk and find out a little about the family. What is their day like?”
For the Born household, which now includes two young children and a third on the way, every day is hectic. While 4-year-old Nathan is thriving, the time and skill required to care for him are significant. He is fed exclusively by a feeding tube and relies on a walker and a wheelchair to get around. Between special needs school, therapies, and medical appointments, his schedule is jam-packed.
“There are a lot of unspoken responsibilities you don’t realize that come with special-needs kids,” Born said. “You kind of get thrown into being a superhero.”
Born also found much to love about being his mother. “My son can’t talk, he can’t walk, and he can’t feed himself. So we a have all of those struggles,” she said. “But he is the sweetest child. He’s just happy all of the time.”
Despite the challenges of autism, Setzer has also found taking care of her youngest daughter tremendously rewarding. She remembered one incident was particularly meaningful. “I tucked her in at night and, for the first time, she said ‘I love you, momma.’ It makes it worth everything.”
Her caregiving experience has made Setzer more appreciative of the sacrifices of others like her.
“There are heroes walking around us every day,” she said. “Quiet heroes who are taking care of a special person. They never say anything. They give their life up to take care of them.”
Amialya Durairaj is a health-writing consultant at Little Octopus and co-creator ofMindful Return’s Balancing Career with a Special Needs Baby program. She lives in San Diego with her husband and twin daughters.
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