The Other Pandemic
Parents of special-needs children are especially challenged now.
Posted Oct 15, 2020
By Daryl Austin
Though the pandemic has affected every family differently and presents numerous challenges to all, special needs families are now experiencing an entirely different pandemic than the rest of us.
"Everything that mattered deeply to Zuzu and is crucial to her growth and development has been stripped from her," Ashley Miles, a 37-year-old mother of three says. Zuzu is a nonverbal 7-year-old with Down syndrome who relies heavily on routines and personal aides in order to thrive in her day-to-day life.
Before her school closed down in March, Zuzu was meeting many developmental milestones. "She was close to writing her name on her own. Her verbal communication understanding and her sign language was at its best," Miles says. "All of it was gone after the pandemic struck. Once she lost her teachers and peers at school, her motivation to communicate verbally went with them."
Another parent, Shayleen Lunt, a 40-year-old mother of four, told me that her 11-year-old daughter with autism has similarly struggled. “When schools were shut down," she reports, "my daughter's therapy ended along with it. All of her daily therapy sessions in addition to her regular education fell on me, as did tracking all of her developmental progression." She adds: "That isn't something I've been professionally trained to do. My daughter's developmental progression has been stunted as a result."
These mothers aren't alone. Multiple healthcare professionals speak of the many distinctive challenges that special needs families have been facing since the pandemic began.
Unique challenges children with special needs are facing
"The unique challenges of children with special needs is that they are at double jeopardy during the pandemic," says Marilyn Augustyn, a developmental and behavioral pediatrician and professor of pediatrics at Boston University School of Medicine. "If all children have the single threat of the pandemic, the burden of having a developmental issue places children with special needs in even greater jeopardy."
"Children with special needs, are experiencing similar challenges (as their peers) but with greater intensity and with fewer personal resources to manage the stress of these challenges," explains Heidi Feldman, a professor of Developmental and Behavioral Pediatrics at Stanford University's School of Medicine. No child likes to wear a face mask or spend hours a day learning in front of a screen, she observes, but such circumstances are worse for children with special needs who may lack the ability to comprehend why they have to make such changes in the first place.
Another factor is how much children with special needs depend on their peers to learn and mirror positive social skills. "The loss of social opportunities that comes from physical distancing is challenging for all children," explains Julie Wolf, an associate professor of Clinical Child Psychology at Yale University's Child Study Center, "but it may be especially detrimental to children with social disabilities who depend on those in-person interactions for learning new social skills."
What's more, as many children have returned to school this fall, some children with special needs have had to continue remote education due to having compromised immune systems or comorbidities. "Children with medical complexities may need to attend school remotely to stay safe due to their medical vulnerability to COVID-19 and may miss out on specialty services that may not be available for delivery in the home setting," says Elaine Gabovitch, the director of the division for Children & Youth with Special Health Needs at the Massachusetts Department of Public Health.
Another issue is how important predictable and structured routines are to children with special needs. "Without their usual routines," says Deepa Menon, assistant medical director for the Center for Autism and Related Disorders at the Kennedy Krieger Institute, "children with special needs can experience more anxiety or maladaptive coping skills that can impact their life." She cites some consequences: "We have seen an increase in sleep issues, behavioral issues, and anxiety due to the change in routines and the uncertainty during this time."
Unique challenges the parents of children with special needs are facing
Parents have been struggling, too. "Parents of children with special needs are serving as primary caregiver, special educator, therapist, and play therapist for the child," Menon says, "and like many other parents, they also have to carry on their regular work from home. For them, the burden is even greater."
Christine Cukar-Capizzi, an associate professor of Clinical Child Psychology at Yale University's Child Study Center has similar concerns: In conducting psychological evaluations for children with special needs and their families, she says, "I have seen a tremendous increase in parental stress levels since the onset of the COVID-19 pandemic." She adds that she's worried about the sheer number of burdens some parents may be carrying. "Many parents have supported their children at the expense of their own needs and self-care, leaving many parents feeling a near-constant level of burnout and stress."
Perhaps most difficult of all is the sheer number of hours that many parents have had to devote to their children in juggling so many roles. "It has been very challenging for many parents who have needed to step into roles typically filled by staff in the school system," explains Brett Mulder, a clinical instructor at Harvard's School of Medicine.
Advice for parents of children with special needs
On the upside, parents of children with special needs have multiple resources available to assist them and advice from medical professionals on staying centered. "Take time each day for yourself, even if it is just 30 to 60 minutes, do what you can to de-stress and to stay active," Menon counsels, "Above all, know that this too will end, so take each day at a time."
Gabovitch stresses the importance of families who have children with special needs to network with one another: "The shared experience can informally provide helpful insights and actionable recommendations that can lead families to more formalized support,."
And medical care should not be neglected during the pandemic. "If your child is ill, please seek care," Phyllis Dennery, a professor of Pediatrics at Brown University, urges. She adds that "the risk of contracting COVID in the hospital is significantly lower than in the community. Ignoring an illness in a vulnerable child can be life-threatening." The same advice of seeking professional help also applies to any parent struggling emotionally. "If you are constantly worried or sad and withdrawn, and you just can’t seem to shake it, seek help from your physician," Feldman advises.
"Remember that you are not alone," Cukar-Capizzi says, "this is a collective struggle faced by all parents of children with special needs at this time." She stresses that parents should also not expect to know how to be a special education teacher while also being a parent to a child with special needs. "Your child will more likely remember a family movie night or an impromptu dance party more than a distance learning session that did not go as planned.".
"Remember that empathy is as essential as oxygen," Mulder offers. "Remind yourself that it's OK to be angry, frustrated, depressed, and overwhelmed. Take breaks. Go for walks. Try meditation," he says.
"You were there for your child before this all began and you will be there long after, and that is what you need to remind your child of every day," Augustyn counsels. "Consistency and unconditional love go a long way in weathering these times."
Daryl Austin is an independent journalist based in Utah. His work has appeared in The Washington Post, The Wall Street Journal, NBC News, Live Science, and Business Insider.