Although difficult, most people have adjusted their lives to adhere to the ever-changing guidelines of COVID-19 鈥 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 , director of the Building Early Connections Program, , lead psychologist of the Building Early Connections Program, pediatric occupational therapy faculty, and , 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鈥檚 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 鈥 including those with intellectual and developmental disabilities who might also have specific health problems. For example, 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鈥檚 worry by discussing these hard topics, but Wolodiger says an open dialogue can actually lessen the fear and allow for the correction of misinformation.
鈥淲e don鈥檛 want children to worry alone or jump to inaccurate conclusions,鈥 Wolodiger says. 鈥淭his can create more confusion for the child and concern for the parents themselves, so it鈥檚 most helpful when parents are as open as possible.鈥
Wolodiger adds that the developmental status of the child may determine how parents explain COVID-19 and its impact.
鈥淔or 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,鈥 Wolodiger says. 鈥淔or some children, art may be a preferred communication style, so use developmentally appropriate visual supports such as a story, book or simple video.鈥
Maintaining routines
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鈥檚 progress. Creating and maintaining routines at home that provide structure and predictability can help kids during times of uncertainty.
鈥淭o create a sense of normalcy, set up a routine that is similar to your child鈥檚 typical school day,鈥 Wolodiger says. 鈥淧arents can work with their children to create a visual schedule and place it in a prominent location in the household for accessibility.鈥
Popova emphasizes the significance of supporting a child鈥檚 sense of control over their daily routine.
鈥淐ollaborating with your child is extremely helpful in re-establishing a sense of control during a stressful life event,鈥 Popova says. 鈥淚t also helps to build a sense of self-determination and choice-making, which is a critical component of growth.鈥
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鈥檚 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.
鈥淭hey may perceive the significant changes around them, such as social distancing or quarantine, as their fault or a result of something they did,鈥 Popova says.
Otwell adds that parents can help their children with intellectual and developmental disabilities manage these feelings by supporting healthy emotional expression.
鈥淔or children who are verbal, give them the opportunity to express feelings, ask questions and voice concerns; then, validate their feelings鈥 Otwell says. 鈥淔or 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鈥檚 book or video can be helpful in encouraging this emotional expression.鈥
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.
