It's been one year since NEA, in collaboration with four peer patient advocacy organizations, hosted the landmark patient-focused drug development (PFDD) meeting dedicated to eczema.
Published On: Apr 2, 2020
Last Updated On: Aug 25, 2020
As the mother of a 6-year-old daughter with eczema, Kacey Davis Jenkins knows how to create a schedule. Creating and sticking to daily routines – like wrapping and moisturizing, bathing and bedtime rituals – is a skill eczema parents especially learn to master.
A former special education teacher turned administrator in Texarkana, Texas, Jenkins is working from home now and for the foreseeable future, and she’s also in charge of her daughter’s eczema care along with her at-home learning program.
“The classroom strategies teachers rely on at school can be just as effective when used at home,” she said — strategies that include schedules, expectations and procedures.”
But these need not be as dry or rigid as they sound. Beyond the daily schedule she has created, Jenkins has learned to take cues from her daughter Chayse.
“I can tell what’s going on with her by listening carefully. Yesterday, for example, Chayse said, ‘My stomach hurts.’ I could have taken her words literally. But I decided to probe a little further and ask her to describe how it felt.
“When she said her tummy felt ‘tight,’ that sounded like code for anxiety. So instead of rushing to give her an antacid or call the pediatrician, I spoke honestly with her about the TV commercials she had seen that are warning everyone to stay home to avoid spreading or catching COVID-19.
“There’s only so much that a 6-year-old can understand,” Jenkins continued. “But being open and supportive goes a long way toward defusing a child’s fears.”
Parents who are working from home while taking care of their school-aged children should consider creating a daily schedule, Jenkins said.
“You can schedule meetings during your child’s free time, or, if you have very young children, nap time,” she suggested. “And when the kids are playing outside, you can catch up on a recorded webinar or answer email.
“There are plenty of free online resources that can help with scheduling,” Jenkins continued, “but how you use them will depend on your personality style.”
For example, type A parents will tend to schedule everything down to the minute. Those with a looser, more experimental approach may be inclined to try different scenarios. And some parents might simply throw up their hands in defeat — at first. But help is available, Jenkins said, no matter where you fall on the spectrum.
“If you still feel uncertain after several tries,” she said, “reach out to your child’s teacher or a homeschooling mom or check out reliable online resources for more guidance.”
And don’t forget to have fun! Technology can be a lifesaver in this regard, offering all kinds of stimulating ways to engage with your children during these challenging times.
“We enjoy using apps that put silly filters on your face,” Jenkins said, “and we also love creating dance videos. You can use technology to unwind from the potential chaos swirling all around, and your kids will love the quality time they spend with you.”
For quieter forms of stimulation, Jenkins suggested drawing and coloring, keeping a diary or listening to music — and be sure to keep self-care in the mix.
Jenkins was reminded of the importance of self-care at Eczema Expo ’20 in Scottsdale, Arizona. “I’m forever grateful for the conversations we shared during the self-care breakout session,” she said. “I try to build in ‘me time’ every evening, and my husband and daughters totally respect that time as sacred.”
As she strives to take care of her husband, her two daughters — Chayse and 15-year-old Natalie —and, last but not least, herself, Jenkins recognizes that “at the end of the day, there’s no right way to do everything we need to do.”
She’s keenly aware of the schools’ expectations that parents devote this enforced time at home to their children’s continuing education. But she also sees it as a time to be emotionally supportive.
“Honest, sensitive interactions with our children — based on what’s actually happening with them — are just as educational as the packets provided by our schools,” she said. “No one welcomes the disruption caused by COVID-19, but we choose to use this time as an opportunity to truly disconnect from outside pressures and reconnect with what’s under our own roof.
“At a time when we’re all practicing social distancing, let this be a time to build relationships and show our children that they are safe and, most importantly, loved.”