Breaking Ground 102 - Searching for Silver Linings: How the Vogus Family Navigates COVID-19

by Jen Vogus, 2007 Partners in Policymaking® Leadership Institute graduate

The photo shows a young man with brown hair and a T-shirt excitedly flapping his hands, while he watches an online livestream of his school principal playing music for students. His dad sits next to Aidan, holding the laptop on his lap in their living room and smiling.

Aidan Vogus and his dad stay connected during social distancing. Aidan’s Ravenwood High Assistant Principal Reggie Mason puts on a Facebook Live DJ show each week during the quarantine to bring people together.

As parents of two children (Aidan-18, Eleanor-9), my husband Tim and I were anxious about the demands of COVID-19 and the stay-at-home order. How could we balance working full-time from home, educating our kids, maintaining some semblance of household order, and keeping ourselves healthy AND sane? We grew more worried as the weeks turned into months largely confined to our home.

Our biggest concern being at home for a long period of time was for our son, Aidan. Aidan has physical and intellectual disabilities due to a novel chromosomal deletion (STXBP1), and for all his life he has had a strong dislike of being stuck at home, even for a weekend. Aidan strongly prefers a structured day with activities outside the home, especially activities with other people, and usually lots of them. His disability causes him to be functionally non-verbal, so without this structure, frustration, stimulatory behaviors, and yelling make their appearance. As a result, our weekends and holiday breaks are usually highly planned. Tim and I often laugh about how we never imagined going to so many air shows, motorcycle races, renaissance festivals, roller coasters, superhero movies, and Dave Matthews Band concerts! Despite the challenges Aidan faces, one thing he does not lack is enthusiastic interest in a variety of activities and events.

On top of this concern was also disappointment. This spring had big milestones and important events for Aidan. Aidan’s 18^th birthday and high school graduation were upcoming (in April and May). We were planning a big graduation party, with a large number of family, friends, and others from across the country who’ve mattered to Aidan. Besides those once-in-a-lifetime events, there was the planning for his transition program next fall, the Easter holiday that was usually spent with family, our trip to Disney World to celebrate graduation right after the school year ended, and multiple concerts that were getting canceled and postponed.

So what have we been doing to relieve our worry and frustration and to acknowledge those special moments? How have we adjusted to a new way of daily life and managed to stay (mostly) happy together as a family? I’ll share a few tips that worked for us.

The two siblings sit at a kitchen counter and do a science experiment with a model volcano.

Sister Eleanor involves Aidan in her hands-on science experiments.

Take a trip back in time to rediscover old things and make them new.

We’ve gone through closets in search of clothes that are too small and explored boxes of memory items from years past. We even came across party hats from Aidan’s first birthday! Aidan’s sister, Eleanor, took it upon herself to add an eight to the one and declared it the perfect accessory for his 18^th birthday!

Years ago, I taught high school earth science and have promised the kids I would get out my boxes of rocks and minerals that I stored away. We finally did, and they thought it was so cool. Eleanor involved Aidan in her hands-on science experiments, like the erupting volcano.

I am a photographer and was editing senior photos I took of a close friend’s son. Aidan and Ryan went to preschool together at Vanderbilt’s Susan Gray School, and Aiden was so excited to see the photos of his friend. We’ve spent lots of time going through old photo albums and looking at pictures of when Aidan and Eleanor were little. They love hearing stories of when they were babies!

two young boys holding hands on a playground.

A trip back in time: Aidan and Ryan went to preschool together at Vanderbilt’s Susan Gray School

Get out and go … safely!

When Aidan gets bored or frustrated, he is always happy to take a break and go outside. Our go-to activity with Aidan is to walk to the train tracks in hopes of watching one go by. If it does, the engineer usually honks and waves, which makes Aidan’s day. The sunshine and fresh air is all Aidan needs sometimes. Other times, it’s taking a drive to the railyard or the airport viewing area to watch from the car as trains or planes come and go. He is also content sitting on the deck, watching the bunnies, birds, and bees go about their business, or watching the neighbor’s yard get mowed.

Taking a break is not important only for Aidan. Tim and I are both used to having daily time to ourselves. Going for a walk while listening to music or a podcast or even taking a walk into another room with headphones on makes a difference.

Find creative ways to connect with others you care about.

One of Aidan’s favorite people is Dr. Reggie Mason, an assistant principal at Ravenwood high school. Aidan loves stopping by his office to say hi as often as he can. Dr. Mason has put on a Facebook Live DJ show each week during the quarantine to bring people together to connect, enjoy music, and forget about their worries for a bit. Aidan thought it was so cool to see him scratching and playing old-school jams! And Tim loved it too ... rap music is his favorite.

Easter is usually spent with family, but we were able to make the best of it by FaceTiming with entire family scattered all over the country. We’ve never done this before, but we will likely never have another holiday apart without it.

A photo with Aidan and his father standing next to train tracks on a beautiful sunny day, and Aidan pointing to a train past the camera. They're also walking their medium sized black dog.

A go-to activity with Aidan is to walk to the train tracks.

Don’t be too hard on yourself and appreciate those little things.

As important as all of this is, we realize that this is an unprecedented experience and is not easy. Despite what Facebook and Instagram show, it’s OK just to get through it! But hopefully a little time traveling, getting out and about (safely), connecting (virtually) with a range of people and activities that matter, and showing ourselves a little compassion makes it doable as parents and people.

Photo credit for all images: Jen Vogus

Author bio: Jen is the founder of AbleVoices, a non-profit organization that teaches photography to people with disabilities as a means for self-expression, empowerment, and advocacy. She is also a 2007 graduate of the Partners in Policymaking® Leadership Institute. Learn more about Jen and AbleVoices at www.ablevoices.org.