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Having a Child with Down Syndrome, Part CXLVII: Pandemic Parenting

I learned about the 1918 flu pandemic as an adult at a point when I read an article about someone was excavating grave sites of people who had died from it and found samples that could be analyzed. I read some tangential information about it and discovered just how horrible it was for the world. The scope was mind-boggling and I was shocked that I had never heard about it until then. I never imagined that I would see a pandemic of similar scale, let alone be a parent of a child with special needs through it. If you’re looking for a cheerful, positive, heart-warming essay about parenting a child with special needs, this isn’t it. If you’re looking for honest, raw, and thoughtful – well do I have just the thing for you.

Alice, a young adult with Down syndrome in a blue top

How is parenting a child with Down syndrome in a pandemic? In short, it really stinks. There are a number of factors at play and some of them are unique to the members of our family, some are part of Alice’s personality, some are a product of her age. I don’t know how much are part of her disability.

First, let’s list some of the ingredients in this chowder:

  1. I’m an introvert. I really need time alone and quiet time in my head to recharge. There’s not a lot of that available, so it’s hard.
  2. E is an extrovert. She really needs time with other people to recharge. There’s not a lot of that available, so it’s hard.
  3. Alice is an extrovert. She also needs time with other people and has lost almost all of her social time.
  4. Alice routinely treats E like a possession rather than a person, and now with nearly 24 hour access to E, this makes it especially hard because Alice is relentless and we’re at a loss as to how to get her to modify her behavior.
  5. School via Zoom is like Alice is watching a TV show except that they’re all people she knows and can interact with and it’s a show made just for her. Her behavior in class is appalling to me because it feels like it takes constant monitoring to keep her from being awful.
  6. Alice is 18 (how is this possible, by the way. I mean, wasn’t it just last week that she was born?) and is being rebellious. This includes ignoring parental warnings of consequences, yelling, slamming doors, and behaviors that you would never tolerate in a mere acquaintance let alone someone you love.

So yeah, all of these things make Lousy Chowder. If that’s what you’d like for dinner for every night for more than a year, this is how you get that. It’s exhausting.

Meantime we’re worried about Alice. She shouldn’t go to school because she’s immunocompromised and not fully vaccinated. Even after, I’m wondering if it’s a good option because it will be a big transition with not a lot of time for the payoff. She should have been doing vocational training in the past year, but clearly that couldn’t happen, so we’re behind on that too.

We’re looking at options for how she could live as independently as possible because after this year, it’s clear that living with us long term is probably not healthy for any of us. The waiting list, which we’re not eligible for yet, is measured in years. At least that gives us time to try to prepare her for the reality of living with people who aren’t her family members and learn how to debug that.

In January 2020, in the before times, I got this tattoo:

Captain America Shield tattoo
A tattoo reading "I CAN DO THIS ALL DAY."

It’s a reminder to me about being a parent of a child with special needs. When things get especially rough, I look down and take a couple of breaths.

Not too long ago, I added a matching one to my other arm (yay! fully vaccinated!)

A tattoo of Mjolnir, Thor's hammer surrounded by lightning.
A tattoo that read "WORTHY."

I commissioned Tana Ford, an award-winning artist and all around wonderful person, to do the art work. This is also a parenting reminder. Worthy of what? Well that depends on the day. Some days it’s a pat on the back for making it through the day.

tl;dr – parenting a child like Alice through a pandemic has been challenging and stressful. Sometimes, it’s easy or at least straight forward. Most of the time, it’s like being asked to clean the Augean stables. And there is very little respite. We have PCA hours allotted by the state. Using their algorithms, they’ve determined that we’re eligible for 9 hours and 15 minutes of assistance per week – and we had to cut off that assistance for several months until we got a good idea of what the risks of the pandemic were and how to mitigate them. At least now in stasis for that.

This too shall pass, but it has not been an easy time and as hard as it has been for us, I know that other people have more challenges than we do. But honestly, that’s small consolation because everyone’s hardest problem is their hardest problem and this is ours.

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