With continued spread of COVID-19, caregivers of children with disabilities are facing a set of unanticipated challenges. While available evidence suggests lower risk of COVID-19 in children than adults, secondary health conditions of children with disabilities put them at increased risk of complications. The fear of infection or sickness in a child with disability may cause stress in the caregivers. Scarcity of resources can affect family’s ability to obtain essential medical and nutritional supplies.
Although social distancing is advocated as the best strategy to avoid transmission, it might not be ideal for children and youth requiring therapy or assistance in routine activities. Due to closure of schools, therapy centres and other care-giving services, these children and young people may experience significant hurdles in the access to clinical services and therapies. Even minor changes in the routine create difficulty in many children with Autism Spectrum Disorder. Caregivers may not be able to ensure the routine and their preferred activities during the pandemic time. These experiences may also intensify the perception of stigma and discrimination with respect to children and youth with disabilities.
Considering the stress due to all these factors caused during the COVID-19 pandemic, we have enlisted some coping strategies for parents and caregivers of children and youth with disabilities. Here are a few things that parents or caregivers can do to keep themselves, their families, and their children with disabilities safe during the COVID-19 outbreak.
1.Stay informed, but avoid media overuse. It is important to be updated with the rapidly changing information on COVID-19 in your area or community, but the overuse of information can increase stress. To stay informed while remaining safe, identify a few trusted sources for accurate updates and limit the use of social media.
2. Children may not be able to express their feelings in words and may exhibit their anxiety, fear and frustration through challenging behaviours. Have open discussions with children and other family members about COVID-19, and the reasons for the changes to their lives. You can use various communication materials available online (list of resources below the article), use pictures and videos to talk about the virus and what you are doing to stay safe.
For example emphasis on specific words while speaking phrases: You and me (we) wash hands, Not to touch our face , Stay home
3. Discuss with your child’s school, teachers and therapists about changes in mode of educational and therapeutic service delivery in the upcoming weeks. Don’t feel pressured to exactly replicate school and therapy at home. With the help of teacher and therapists, try to identify ways that would be effective for your child’s condition and will help the child grow. You can also use video calls to talk about how to keep up their physical therapy activities at home and to help your child to stay in touch with their physical therapist.
4. Speak with your child’s healthcare provider (such as physician, paediatrician) if your child has a chronic or acute medical condition, about how to access needed equipment, supplies, medications, etc, and whether it is best to visit a healthcare facility or stay at home.
Preparation at home
1. Hand washing is one of the most important ways to protect your child from COVID-19. Make signboards using pictures or drawings to remind child and other family members to wash their hands often, for at least 20 seconds. Keep stock of hand soap, tissues, wipes, and hand sanitizer handy at various places in your home for everyone to use. Make kits or hand washing stations, if needed.
2. Ensure you have adequate medicines or supplies, special nutrition support or specific type of food that your child needs for the coming weeks. If you need assistance with ordering extra supplies, talk to your child’s health-care providers about getting additional supplies including any medical technology, nebulizers and airway suctioning. If your child requires protective masks, make sure you have enough to last for a few weeks. You can try to make reusable protective masks at home.
3. Ensure stock of foods/snacks that a child with disability especially ASD might have habit of.
1. Creating a structured schedule helps your child to feel secure and in control in a seemingly uncontrollable environment. Talk with your child about why they are staying home and work with your child to develop a new routine schedule, using text, drawings or images. Try to include social stories -from online sources, magazines or from your own drawings and photos- that describe new activities in words and pictures.
You can also use this for introduction of new behaviours such as handwashing or social distancing into daily habits. Make the schedule easy to understand and predictable for the child. Post the schedule in easily visible and accessible way to your child.
2. Use visual or auditory reminders to help your child know how long an activity should last, how long a caregiver needs to do work or when an activity is about to end. You can use a visual timer, the timer on your microwave or your phone and/or a transitional warning to tell them things such as it’s time to wash hands when the timer stops.
3. Include calming and coping activities into child’s schedule to cope with the change and find out ways to introduce new calming behaviours. Monitor your child’s emotional health during this time. Extended time at home and restrictions away from school may cause anxiety and concern. Maintain routines, connect with friends virtually, and take time for your family.
Reassuring the child
1. Be empathetic towards child’s behaviours. Understand that not having the usual school or disability-related equipment may lead to added difficulties, discomfort or pain for the child. Try to discuss with therapists and other families in similar situations to address any discomfort and/or sensory, communication, and movement challenges to the extent possible.
2. Show the child your unconditional love and the joy of getting to spend extra time with them. Encourage the child to talk about their feelings about the change in routine and social isolation from their peers. Help the child interact with others through phone calls, video chatting and other virtual platforms.
Self-care and coping
The caregivers of children with disability have strengths including flexibility in handling uncertainty, creative problem-solving and resilience. But it’s possible to feel stressed or anxious when faced with new challenges such as COVID-19. It is equally important to take care of yourself while caring for your child. Try not to overwhelm yourself by attempting to provide all of the services your child usually receives from teachers and therapists.
1. Try to take a few minutes out of the day for relaxation techniques such as deep breathing, listening to soothing music or imagining one of your favourite peaceful places. Be kind to yourself and focus on what can help you feel restored. Try to take short breaks from the immediate stress of the situation by engage in activities such as watching animal videos or singing or any hobby that you enjoy.
2. Stay connected with family and friends virtually by regular calls, email, texting, video chatting and social media. Seek support in caregiving from family and friends around you.
3. Be prepared with a plan of care for your child and other family members in case you become ill. Having a plan in advance also gives a sense of security and reassurance at a time of uncertainty.
During this change and uncertainty, it’s important to stay connected with peer-support organizations, parent support groups for local information specific to children with special health care needs and disabilities, social support and reduce feelings of stigma.
With the ongoing social distancing, you might need help with basic activities such as food or food delivery, ride shares, and getting medicines. Reach out to a friend, family-member, community-based organization, or your paediatrician for help.
If your family needs help, look for psychological resources available online or in your local community.
1. Supporting your child’s development through daily mindfulness-based activities (https://www.texaschildrens.org/blog/supporting-your-child%E2%80%99s-development-through-daily-mindfulness-based-activities-0)
2. Caring for Children: Tips to keep children healthy while school’s out (https://www.cdc.gov/coronavirus/2019-ncov/daily-life-coping/children.html)
3. Talking to Kids About Coronavirus with Alternative/Augmentative Downloadable Communication Boards (https://janellesampson.wordpress.com/2020/03/12/talking-to-kids-about-coronavirus/?fbclid=IwAR3eDjHfUfNOVg7XPNHxFTqp-axoJa1L2h_HjDquM4iK9nnBC3MBiqASKWU)
4. Coronavirus Social Story (https://littlepuddins.ie/coronavirus-social-story/)
5. American Psychological Association. Advice for caregivers of children with disabilities in the era of COVID-19