During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times, such as a public health crisis or other emergencies. Here are their ideas and everyday solutions.
“We use social stories to talk about what’s going on and help my daughter deal with the changes and avoid meltdowns.”
A social story has words and pictures to show your child the steps in an event or experience. They are often used for children with autism. Carol Gray Social Stories , the Head Start Center for Inclusion, and the “And Next Comes L” blog are three websites with free social stories to download or learn how to build your own.
See our page on Major Life Events for more information on helping your child cope with life changes.
“My girls both have autism, so they really need structure, sameness and routine. We had to implement a new normal and use visual schedules, so they know what they’re doing every 30 minutes. It eases their anxieties for the day.”
A visual schedule has words and pictures and is posted in a place your child can see. They can help create it. See our article on visual schedules for more ideas.
“My son is nonverbal, tube fed, can’t sit up, pretty much can’t do anything on his own except drive his power wheelchair. Recently, he needed lab work done before a doctor's appointment. We went to the lab one afternoon and, luckily, only one person was waiting. Then I saw the sign, ‘No Mask, No Service’ and I forgot masks! But I remembered I had just one in my van. My son had never gone in without me. I said, ‘You are going to have to do this without Mom!’ I swear he looked at me like, ‘Seriously, Mom, I haven’t needed you for this in years.’ Drove himself right on back with the lab tech, got blood drawn and drove right back out to me. No problem!”
“My child likes singing and sewing. It’s such a shock to go from school to nothing. He felt lost. I was trying to find things for him to do. He can’t just go online and watch YouTube. Things that are different or new cause anxiety. Like when his singing lessons went online, he didn’t want to attend. But I said, ‘Let’s just try it once.’ And he did. And now he likes it.”
Our page on After School Activities and Programs has ideas to help you and your child find activities they like, even if they are not in school.
“My son is 7 years old, nonverbal and doesn't walk on his own. We play cards to build vocabulary, we sing, he watches old cartoon movies. And I say things to keep him engaged, like, ‘Oh, look a plane!’ Or, ‘What did the squirrel just do?’ Things like that, to keep up a conversation even if he doesn’t reply.”
For more ideas, see our article A Few Powerful “Words” for Kids Who are Nonverbal.
“Physical fitness has been very therapeutic for my kiddo. He takes Taekwondo four days a week. He’s now started going to a physical building twice a week and on Zoom two days. His instructor is very disciplined, strict and concerned for her students’ wellbeing and health and, of course, the sustainability of her academy. Physical fitness has been very therapeutic for my kiddo and the strict routines for cleanliness and good hygiene to participate in-person have been important lessons.”
“My son’s massage therapist comes over once a week. At first, we stopped the sessions because my son was too afraid, and there was so much going on. But he missed massages so much that we found a safe way to do them again.”
“I purchased [medical equipment]. That way, I can take my son’s vitals at home and relay them to his healthcare providers when I need to.”
More and more doctors and therapists are using telehealth and telemedicine visits, especially when it’s not safe for a child with a disability or special health care need to come to the office in person. See our page on Telehealth and Telemedicine(link to new page) to learn more about these options.
And, to be ready for a future natural disaster, our page on Emergency Preparedness has important information for your family.
After making the difficult decision to medicate your child, with time and on occasions, old symptoms return or new ones appear. Once again, you’re faced with what felt like an already-made decision - to medicate higher or more, or not.