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Wednesday, July 22, 2020

2020 Post, COVID-19 Edition

Hi Everyone,

Checking in. We are ok - COVID-free so far. We are pretty much trying to shelter in place as it'd be bad if Ellie got the virus. She eats by mouth but a teaspoon at a time. A 1/2 cup of puree can take her 30-40 minutes to eat pending her appetite. When she is sick that time period can triple making it hard to keep her energy levels up. Her drinking is about a tablespoon per "drink". For Ellie drinking means we pour a small bit of water into her mouth and she then carefully works to swallow it.  She has low lung capacity from having had borderline chronic lung disease as a preemie and no capacity to do aerobic exercise. I don't know, due to her low muscle tone/hypotonic Cerebral Palsy, if she'd be able to cough it out if it went in her lungs. It could get into her brain or heart per the sequelae that has been reported.

Ellie in her stander.
So best not play a deadly game of dice with her. We are playing it safe, keeping her home, keeping ourselves very distant from others.  This thing is so contagious if it entered our home we'd be hard pressed to keep it from her as she is total care. We are blessed that we can shelter at home in terms of still keeping our jobs (so far) and having found ways to get food delivered.

Ellie's transition to "home school" was hard on her. We found about about 3 weeks in that she thought she was the only one who had been sent home. She started talking about "old school". She was really weepy breaking out into tears at random. Grief visits us all this way, a friend who stops by unexpectedly at the oddest moments. I think she thought she was being punished.

Once we found out we started reaching out to teachers and students to show they were at home too. That helped.

Her other upset was to realize that being home was not equated with the famous "no school" and that home school was an actual thing. That was quite a disappointment in her young life indeed.

Her teacher was also very slow for the most part to go virtual. They were uncomfortable with tech but also had already had trouble connecting with Ellie.  She is a bit adrift of connection and the poor handling of zoom  webinars means she is talked over, the pace is too fast and she is left behind with sensory overload. It's disappointing and an organizational psychologist I get what a huge sea change this is for the teachers. So patience is king here as we all pivot and shift and deal with the struggle to manage everyday things that were once easy that are now hard.

AND I get it that this comes from a hugely privileged place. My "problems" are good problems to have versus real problems including poverty and skin color discrimination and flat out danger because I am white. Life, is and has been for hundreds of years, exponentially harder for brown and black skinned fellow homosapiens here.  I am reading Ibram Kendi's How to Be an Anti-Racist and just finished D'Angelo's White Fragility. If I want there to be more tolerance in the world for difference I need to start with myself and unravelling my own racist indoctrination. I have been working on that for years but am riding the wave of momentum to take more direct action, as a leader in my organization, to accelerate the dismantling of systemic racism where I have influence. What's that saying, never doubt how small acts can help change the world..etc.

The world is reordering itself. Some battles will have to be fought again - like equal access for those with disability to attend school. A new class of people has formed - those vulnerable (and those caring for them in their homes) to the virus versus those that are not. It's a difficult time right now for billions of people. Things are unstable in the US in a way that is unprecedented in my own life time.

For the record - the US did not vote Trump into office. Hillary Clinton won the majority vote. But due to our antiquated electoral system, Trump was able to steal the election just like George Bush Jr. was able to steal it from the environmentalist, Al Gore. Can you imagine how much better the environment would be if Gore had won (he also won the popular vote)? I hope all of this wakes up all the people who don't vote, who don't participate in the active process of being a democracy...which we barely still are.  Could be that we are not and I am just in denial. It is a horrifying thing to understand how deeply flawed our democracy is.

Anyway, I am thinking about all the parents of special needs and typical kids, fellow bloggers and blog readers I have met in writing this blog over the years and feeling protective and worried for us all.



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