COVID-19 is bringing parents of children with Down syndrome to their knees

COVID-19 is bringing parents of children with Down syndrome to their knees

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Most people don't know that Down syndrome is defined as an immune-system disorder. Most people don't know that people with Down syndrome are incredibly susceptible to respiratory problems.

And most people don't know that current hospital protocols urge doctors and nurses to reserve life-saving measures for individuals who are not medically fragile and have no other disabilities.

Most people don't know that COVID-19 has brought parents of children with Down syndrome (and others like them) to their knees.

When I first heard that COVID-19 attacks a person's respiratory system, visions of my son, Daniel, foaming at the mouth with panicked eyes because he could not breathe flashed through my head. I wish I could forget those terrifying images, and I'd do anything to prevent them from coming back.

Since starting school at the age of 4, my now 9-year-old with Down syndrome has suffered long bouts of pneumonia and other respiratory issues. We have been through countless hospital visits; rounds of antibiotics, steroids, and pneumonia and flu vaccines; and even a surgery, all to resolve his respiratory issues.

Unfortunately, Dan's issues are not unique. So now we parents of children with Down syndrome are not only worrying about keeping our children away from this horrible virus, we also have to face the what-if's if we fail in the attempt.

From the very start of the COVID-19 outbreak, I have seen the worries of special-needs caregivers all over my Facebook feed, and the issue is now popping up more and more in the media. A recent study found that individuals with disabilities are more likely to contract COVID-19 and are more likely to die from it.

The New York Times reported that special-needs advocacy groups are filing complaints in New York, Washington, Alabama, Tennessee, and Kansas to prevent hospitals from withholding ventilators and other life-saving technology from individuals with disabilities. Because, crazily, that's something that could actually happen – hospitals could look at my son, or other people with Down syndrome or other special needs, and decide that someone else is more worthy of saving.

I read the papers and I watch the news and I see that hospitals are not allowing family members to visit their loved ones diagnosed with COVID-19. There are countless stories of people dying alone because of new hospital policies enacted to prevent spreading the disease. It terrifies me. Daniel is very limited in his communication skills: If I was unable to be there, who would tell the doctors what Daniel needs or how he is feeling? How would I know he is getting the best possible care?

Not only do I constantly worry about Daniel's health, I also beat myself up over what a terrible job I think I am doing trying to educate my special-needs child in the absence of the everyday heroes we rely on: teachers, paraprofessionals, speech/physical/occupational therapists, and friends.

Let me tell you, distance learning is not going well.

Like so many other parents, I am scared, frazzled, and feel like I'm losing my mind. I have no idea how to cope, but it looks a lot like consuming far too much coffee, wine, and carbs.

Because this coronavirus targets the very thing that makes many children with Down syndrome vulnerable, to me, the pandemic feels like a personal attack. But I have to remember that we are all in this together.

We all probably took for granted that favorite Mexican restaurant with the good chips and head-sized margaritas that has now temporarily (hopefully) closed its doors. All of us (even the introverts) are craving a hug and a coffee date with our best friends. And all of us will probably never take a "normal" day for granted ever again.

All we can do is love each other well from afar and pray this ends soon – not only for the sake of our special-needs communities that could be largely impacted, but for all of us. I pray this for myself, my son, my other Down syndrome friends, and for anyone out there who has been or may be affected.

Opinions expressed by parent contributors are their own.

Watch the video: OCD in Children u0026 the Impact of COVID-19 (October 2022).

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