Who knows?

I think it’s natural, as a parent, to try to – to want to – protect. Therefore, sometimes we don’t address issues, important stuff, that needs to be faced together, because we don’t want to share the burden of knowledge. 

That said, If there’s anything I’ve learned as Marcus’ mom it’s this: never assume he doesn’t know or won’t understand. 

Early, often, and honest explanations are important to Marcus’ ability to cope with difficult situations. This is true for…maybe everyone, right? 

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About 4 weeks ago I decided it was time to talk about the Coronavirus. There had been plenty of talk around Marcus, but to my knowledge, not much talking with him about the situation. 

I started with, “There are a lot of people getting sick.”

“Oh.” He said.

“Yes. So, there are some things that we need to do and be aware of.”

We talked about washing hands, the long and thorough version. “This is important.” When it comes to healthy habits “Important” is a word we use with weight in our house. 

We practiced. Marcus decided he didn’t want to sing, but humming would be fine for the 20 second rule. Or sometimes he does this clicking throat thing, he told me it’s a clock…hm, it does sound like a clock, tick, tick, ticking the seconds. 

I explained that we may be staying home more. I told him that Brad would help him to keep everything clean and safe at his workouts. I told him we may see people wearing masks, and that’s ok, don’t be frightened. 

He told me that he heard Quinn and Emily talking about it. 

I thought I was preparing him plenty early, but the snowball came rolling down faster and bigger than I expected. It was the next week we decided to pull him from work. Then his voice teacher went into quarantine. (Fortunately she kicked off virtual lessons last week, check out how that went here. Spoiler: pretty great.) 

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Also over the last few weeks I travelled then I was sick. Marcus told me, “Your friends are worried.” 

“I’m ok.” I told him. “I’ll be back.” 

“Your friends need help with the folders.”

“Well, that’s true.”

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I sometimes emote audibly while I’m reading, which will lead Marcus to ask “What is it?” 

This happened when I read a devestating article on the dire losses in Italy. We have a friend there. She has this quote on her profile: 

Only the vulnerable will be at risk. Your “only” is my everything.

I told Marcus, in explanation of my sighs, “I’m worried for our friend.”

I explained that “the sick” we have been talking about has caused a lot of people to die in Italy. It’s very hard right now in her country. 

“I will rescue her.” Marcus said. 

“Oh. well…not today. It’s important we stay here. And she is staying in her home, too. We hope it will be okay.”

But…who knows? 

Many friends have reached out to us, concerned for Marcus specifically in this crazy moment in time.

Yes, Marcus has certain underlying conditions that make this virus particularly alarming. Not to mention the systemic discrimination that would put his life in jeopardy if hospitalized especially during a crisis. We are doing what we can to avoid that scenario. (Not that everyone isn’t avoiding the hospital, but to say it makes me feel more in control.) 

Many of us are looking for guidance. Some of us are data driven, some more scientifically minded, but we all worry with our amygdala.

“Worry is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained.” – Arthur Somers Roche

I am a Queen Worrier. Even though I know it’s futile and destructive. I’m also a strategizer, I need information, options, and solutions. 

So let’s try to get past that gray matter and confront a few points about the Covid-19 Virus and resources for people with Down syndrome and their caregivers:

  1. Do all people with Down Syndrome have an increased risk of severe complications of the Coronavirus? 

Yes, but in ways unique to each person, community, and culture. 

First, the ablistic discrimination is real and already happening. To what extent each individual will face will vary widely based on availabile resources and the specific humans involved in their care. Mark Leach has addressed this issue in this post: “Coronavirus pandemic, discrimination, and cold reality.” It’s not good news, but it’s true and should be recognized and prepared for in whatever capacity possible. 

Also, yes, many people with Down syndrome may have one or more medical/physiological issues that will cause a higher susceptibility to fighting the Coronavirus and also create further complications. 

  1. Where can I find information specific to Covid and people with Down Syndrome? 

The Global Down Syndrome Foundation has done a fine job summarizing several Covid-19 facts, figures, links, and correlating Ds information as we know it right now. I’m sure this will evolve as more information becomes available. 

Click here or on the screen shot to take you to their page, lots of further links and info. 

Also, national advocacy groups and individuals are sharing information online with the hashtag #T21COVID

Like so:

 

  1. How can I educate my loved one with Down Syndrome? 

Another resource from Down’s Syndrome Association, is this easy-read pdf suitable for sharing:

Easy Read_Coronavirus PPT/PDF

Again, providing information clearly to everyone is critical to our community’s overall health and well-being. This DSA is based in The UK, so the contact info needs to be edited to your area. (And there might be an apostrophe or “u” in odd places, but who’s to say?)

One more thing: I told you last week to breathe. I’m telling you again. 

We’re all holding our breath. Which is, in fact, the opposite of what we need to do. So…quit it.… Click to Tweet

“Times are tough” is a vast and gross understatement.  Right now there are situations where doing what we can is not going to be enough, or it least it doesn’t look or feel like enough, because the need is too much. Too much. 

So then what? 

It’s one of those moments when every question does not have an answer.

But, again, who knows…

 

 

 

A few points about the Covid-19 Virus and resources for people with Down syndrome and their caregivers: #T21Covid Share on X

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