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My COVID Concerns as the Mom of an Adult Daughter With Down Syndrome

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The coronavirus has impacted each of us in different ways. A challenge to one person does not impact another person in the same way. Likewise, we all cope differently. That does not mean my way is better than yours. We are all different.

I have an adult child with Down syndrome. That makes our world and our choices during this crisis and moving forward different from the choices of some other families. Some of the anxiety and challenges we face are quite different than Rachel’s friends’ families.

It is our understanding that people with Down syndrome are at an increased risk to contract the coronavirus. Perhaps more concerning than that is the fact that many people with Down syndrome are more likely to develop things like pneumonia and are more likely to have complications. Of course, this also means they are more likely to die from COVID-19. That is the stark reality and not a scare tactic on my part. It is just the way it is.

When Rachel was 13, she had pneumonia. Her fever spiked and kept spiking. Seven days in and two ER visits later, she was diagnosed with bacterial and viral pneumonia. She was hospitalized for 11 days and missed three weeks of school. She was fever free for five days before she could come home from the hospital because we couldn’t get her O2 stats up. They plummeted at night. Coronavirus is a respiratory infection. You don’t have to be a doctor to connect the dots that she would probably have a harder time battling the coronavirus.

Rachel attends the Bear POWER program at Missouri State University. Last week, Missouri State’s President announced that the Bears will be back on campus this fall. Rachel totally embraced this and sent it to her dad and me and who knows who else. Sheer excitement. My gut response was more measured and concerned. What does that look like and how will she be protected?

Rachel has adapted to being at home quite well. She usually has a joyful outlook and has always been good at occupying herself. Still, she misses her friends, her college, her activities, and work. She has talked more about missing work than anything. She says almost daily that she’ll be back at the Olive Garden. If you don’t think there is dignity in work and that individuals with disabilities want to be in competitive, integrated and meaningful jobs, I challenge you to spend a day with Rachel. That’s a different blog, though.

As stay-at-home orders lift and business resumes, Rachel expects she will just hop right back to work at the Olive Garden and right back into her former normal. We would love for that to be the scenario, but we aren’t sure. For example, we still have not found a mask that works very well for her. We have several. She has trouble tying a mask. Her ears are small and set lower. The bridge of her nose is flat. She wears glasses that interfere with the placement of elastic or ties.

All those things make mask fitting challenging. When she wears one, she cannot leave it alone and is always pulling on it and touching her face. I do the same thing, so that’s not a criticism. It’s just a fact. It is sometimes challenging for people who don’t know her to understand some of her language. Try listening to her mask mouth. So, she gets frustrated and pulls it down. I am not quite sure how that will work when she is hostessing at Olive Garden.

None of this even touches on the concerns about healthcare rationing or discrimination. In the early weeks, I spent time working with other advocates and our elected officials to try to get discriminatory language removed from state healthcare guidelines for COVID. I am deeply appreciative to national and state-level advocacy leaders jumping on this quickly. I have all the documents that issue guidance saying “you can’t do that” uploaded to our phones so it is readily available should we need it. What if Rachel is three hours away at college? In a complex healthcare situation, would she have the supports to help her advocate for her healthcare at this level?

I don’t sit around worrying about the coronavirus or Rachel. As a person of faith, I draw comfort and strength from the scripture. I also know that I must stay informed and connected. Earlier this week, I told one of my Mama Bear friends that while I am not fearful or worried, I do believe God gave me a double dose of common sense for such a time as this. She has a middle school-aged daughter with Down syndrome, and she said she is not worried or fearful, but she is concerned. Concerned is a good word.

I know very well that we are privileged and blessed in every way imaginable. I know people who are really having a rough time right now — economically, mentally, physically, socially — in all ways imaginable.

For many of us, when everything starts re-opening, the issues are more complex. Back at the beginning, I said we all handle things differently and that’s OK. I encourage each of you to try to consider others and the complexities they face as we all continue to navigate this strange time.

Rachel’s favorite movie quote comes from “Cinderella” 2015. “Have courage and be kind.” Put extra focus on that “be kind” part, friends.

It would be nice to look back on this pandemic and say we became a kinder nation because of COVID. Something good should come from this.

For more on the coronavirus, check out the following stories from our community:

Originally published: May 10, 2020
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