Published onTrisomy 21 Update
Over the past six months, the COVID-19 pandemic has created many obstacles for families of individuals with Down syndrome. Now, as children return to school and adults return to college, jobs or other programs, these once-familiar places may look and feel different – presenting additional challenges for loved ones.
In addition to social distancing and good hand hygiene, the U.S. Centers for Disease Control and Prevention (CDC) recommends that everyone older than 2 years of age wear a mask in public settings and when around people who don’t live in their household. Read CDC's How to Protect Yourself and Others.
Some children and adults with Down syndrome may feel completely comfortable wearing a mask and interacting with others who are masked. However, some may experience fear and/or anxiety – especially when they are unable to see the smiling, comforting faces of those familiar to them – or may not tolerate wearing a mask due to fear or a sensory aversion.
For individuals with Down syndrome who have difficulty tolerating a mask, the Trisomy 21 Program would like to share some tips to protect your child during COVID-19 – and how to adapt best practices for the public to your child's specific needs.
Increasing mask wearing compliance
Give them options
To encourage your child with Down syndrome to wear a mask in public, encourage them to pick out their own pattern, design, style and/or fabric. Try to have a few options available so your child can select what feels best or fits better each day. Then, you can offer your child choices each day, such as “Do you want to wear your dinosaur mask or your red mask?” Allowing your loved one to choose their own mask will provide them with a sense of ownership and control.
Model good habits
Parents and siblings should model mask-wearing behaviors in the home, at stores and in the community. You can also use beloved stuffed animals, dolls or action figures to model mask-wearing.
Build up endurance
For children and adults with Down syndrome who have a sensory aversion to mask wearing, start slow and provide lots of praise for wearing their mask properly (over their mouth and nose). Practice wearing your masks together. While your child may only tolerate it for a few seconds as first, you can work together to build up their endurance.
Do it together
Consider saying, “Let’s try wearing our masks together. We'll put our masks on and count to five. Ready? 1-2-3-4-5. Yah! Great Job!! See, you can do it!!”
Practice, practice, practice
If your child is attending school in-person, have a goal of increasing tolerance to the mask incorporated into their IEP. Practicing several times per day, at home and in school, and gradually increasing the amount of time your loved one keeps their mask on while providing praise and rewards can help improve tolerance to mask wearing.
Answer the 'Why?'
Social stories can be used to help children and adults with Down syndrome understand the importance of wearing a mask. Social stories use pictures to explain specific social situations they may encounter, and what actions they can take to better protect themselves from getting sick.
Autism Little Learners provides a variety of social stories about COVID-19 and the importance of mask wearing. The organization has general and specific stories about
- Wearing and seeing masks at school, in the neighborhood or on public transportation
- Going back to school or attending virtual school at home
- Social distancing
- Hand washing
- Answers to kids' questions like: Why the drinking fountain is turned off? How can I get a haircut with my mask on? When can I stop wearing my mask?
Reading these type of social stories together can help our loved ones with Down syndrome better understand the need for special precautions now, and how if we all work together, we can better protect our entire community.
Tricia D. Wilson, RN, is nurse coordinator for the Trisomy 21 Program at Children's Hospital of Philadelphia.
Contributed by: Tricia D. Wilson, RN