How parents can provide structure in times of uncertainty
Although difficult, most people have adjusted their lives to adhere to the ever-changing guidelines of COVID-19 — including self-isolation, social distancing and wearing face masks. But for children with intellectual and developmental disabilities, these everyday requirements and inconsistencies of the pandemic are particularly challenging.
And with the closures of schools, programs and services, parents are adjusting their everyday lives to provide even more individualized attention and structure for their children.
Rush experts Caitlin Otwell, MA, director of the Building Early Connections Program, Emily Wolodiger, PhD, lead psychologist of the Building Early Connections Program, Evguenia Popova, PhD, pediatric occupational therapy faculty, and Molly Bathje, PhD, mental health occupational therapy faculty, discuss ways for parents to talk to their kids who have intellectual and developmental disabilities about COVID-19, as well as tips to help maintain their child’s routines and cope with the emotional effects of the virus.
Communicating about COVID-19
COVID-19 can spread easily and can be especially dangerous for people with pre-existing conditions — including those with intellectual and developmental disabilities who might also have specific health problems. For example, research indicates people with Down syndrome are more likely to have heart defects and digestive problems.
And parents may feel concerned they will increase their child’s worry by discussing these hard topics, but Wolodiger says an open dialogue can actually lessen the fear and allow for the correction of misinformation.
“We don’t want children to worry alone or jump to inaccurate conclusions,” Wolodiger says. “This can create more confusion for the child and concern for the parents themselves, so it’s most helpful when parents are as open as possible.”
Wolodiger adds that the developmental status of the child may determine how parents explain COVID-19 and its impact.
“For children with cognitive delays, or children who struggle with abstract language, use concrete language to explain COVID-19, and check in with the child to be sure they understand,” Wolodiger says. “For some children, art may be a preferred communication style, so use developmentally appropriate visual supports such as a story, book or simple video.”
As schools have moved to virtual learning, many children with intellectual or developmental disabilities have either lost their usual access to special education providers or now seek the services they need online. Either way, the structure they depend on is different than it was.
Wolodiger adds that these changes can disrupt a child’s progress. Creating and maintaining routines at home that provide structure and predictability can help kids during times of uncertainty.
“To create a sense of normalcy, set up a routine that is similar to your child’s typical school day,” Wolodiger says. “Parents can work with their children to create a visual schedule and place it in a prominent location in the household for accessibility.”
Popova emphasizes the significance of supporting a child’s sense of control over their daily routine.
“Collaborating with your child is extremely helpful in re-establishing a sense of control during a stressful life event,” Popova says. “It also helps to build a sense of self-determination and choice-making, which is a critical component of growth.”
Once a routine is established, adapting to it can be difficult, especially for children with intellectual and developmental disorders. Wolodiger suggests the use of positive reinforcement.
When children are able to embrace changes, make sure to tell them how proud you are of them. This increases the likelihood that they demonstrate flexibility in the future.
Coping with emotions
The emotional impact of COVID-19 can vary based on the child’s unique needs. But many children with intellectual and developmental disabilities are struggling with the concept of getting sick from the virus, and losing access to their favorite people and activities. They may even fear seeing people wearing face masks.
Popova adds that this stress is amplified when a child is not able to understand the cause of this disruption in their daily life.
“They may perceive the significant changes around them, such as social distancing or quarantine, as their fault or a result of something they did,” Popova says.
Otwell adds that parents can help their children with intellectual and developmental disabilities manage these feelings by supporting healthy emotional expression.
“For children who are verbal, give them the opportunity to express feelings, ask questions and voice concerns; then, validate their feelings” Otwell says. “For children who do not have the verbal capacity, pay attention to their behavior, including play and drawings, as all behavior is a form of communication and expression. For some, a simple social story, children’s book or video can be helpful in encouraging this emotional expression.”
Tips to help kids cope
The experts provide ways children with intellectual and developmental disabilities can cope during this time, including things parents and children can do together:
Ensure structure and consistency in daily routines
Expand new hobbies and leisure activities
Practice mindfulness, such as yoga and meditation
Ensure the child is getting good sleep and eating a healthy diet
Engage in movement and exercise activities
Schedule playdates via video platforms, such as Zoom, Skype or FaceTime
Write letters to friends and family
Engage in small acts of kindness, such as helping with tasks or communicating uplifting messages on signs in windows or via drawings on sidewalks
In response to the COVID-19 pandemic, Rush is offering virtual behavioral health visits for children with intellectual and developmental disabilities and their families. Please contact your Rush provider directly to schedule a telehealth visit, or call (312) 563-6651 to schedule an appointment with our Child and Adolescent Behavioral Health Team.