The Screen-Free Quarantine - Day 4

Okay, I’m going to come right out and say it. I let my kids watch a movie today. It was needed. They were bored and I was busy and stressed. I promised myself I would be honest in this journal, as I think it’s important for everyone reading this (like all 15 of you) to know what our journey REALLY looks like. No sugar coating here.

So, what was I busy doing, since yesterday was my day off from my “real” job? What I was busy (and stressed out) doing is basically the topic of my post today.

I was helping my autistic daughter navigate the new online university format. This change has presented a volume of challenges for this hard-working student and her less-hardworking mother.

First, if you don’t know, let me introduce you to Kasie.  Kasie is a brilliant, dilligent college student. She has both Autism and Turner Syndrome. As with many individuals, the assets and deficits of her autism vary from skillset to skillset. So, while she is benefitted by her Autism in some ways, she is challenged in many others. 

Kasie finds change difficult. Not like you or I find change difficult. We are set off balance by change, and we may have an emotional or internal response to that change. After a few days, we adjust to the change and move on. These transitions are on autopilot for our brains and we almost don’t even think of them while they are happening (except for the emotional parts, of course). For Kasie, adjustment to change has to be thought out. Step by step. And undertaken, almost like a chore. She must think about her attack plan for adjusting to this change and create checklists in her own mind on how to move through this new world, with new demands and uncertainties.

So, when her college closed the dorms, and she moved back home, that was one change. Her wake up times for classes changed. Her sleep, shower and eating routines changed. The way she attended classes changed. She had to redefine her notetaking, her timing of turning in her assignments, even how she asked questions.

On top of that, her body responded to the increased stress by getting sick. She got a really bad sinus infection, which caused her more stress, because she also worried about whether she had COVID-19.  A quick online doctor’s appointment alleviated those concerns, and she was prescribed antibiotics.  She was tired and had headaches due to the pain, but her University classes did not skip a beat.

Online classes began, but the Wi-Fi out here at #thebookfarm is super slow, so many of her streaming lectures are dropped or stuck buffering forever. Yet she perseveres. 

With classes going online, Kasie’s instructors have no other way to communicate changes to the students than email. So Kasie’s inbox is a confusing visual pile of distraction and stress for her. Sometimes, instructors will email a change to the lecture, and 5 minutes later, because of how quickly the situation changes and how rapidly they are having to adjust to things, email another change. Her poor brain is spinning constantly to keep up with this, in addition to her normal studies, which are a lot for a neurologically atypical person.

Let’s talk about accommodations. FGCU, where Kasie attends college is an excellent university, and she has had nothing but the best experience there. They have a professional office of adaptive services that manages all of her accommodations for her disability. We cannot say enough wonderful things about these professionals and every single professor we have met.

But, due to how rapidly the Coronavirus situation has changed, Kasie’s accommodations have not been available to her, at least this week. Testing, meetings, a place to bring questions and concerns.  She has been flying without her usual level of access, and the way she receives accommodations has changed. She now must email professors directly to request extra time for assignments, etc., instead of this organizing going through the office of adaptive services. This has caused even more stress for an already stressed young adult.

Oh, and then Pre-calculus. Kasie wants to be an astronomer. She believes in the core of her very being that she was put on this Earth to discover a planet. And I believe her. But she is challenged by her math courses. Because of her disability, there is a huge, thick wall between what she knows (math skills) and what she can accurately put on a tests or quizzes. If you discuss math facts with her, you will be convinced that she is one of the top students in the class. But writing down the problems and putting them into her computerized test is another story for her.  This is something we deal with during normal classes by having on-campus tutoring through adaptive services (gone – thanks, coronavirus), and by having extensive private tutoring through zoom calls (difficult thanks to poor internet connection – thanks, coronavirus).  She also is used to working REALLY hard for an average grade…even though she knows the material better than I know the map of freckles on her sweet face.

But now. Now that her lectures are online, and her tests are online (again with poor internet connection), she feels adrift on a sea of overwhelming problems that feel insurmountable. Today, she needed to take a Precalculus test at 9:00 am. I have two little boys who are very loud at 9 am.  I tried to keep them quiet while she tested, but the environment I provided her was not at all like the environment at Adaptive Services. In addition, she normally gets time and a half for her tests. This test was timed at one hour and twenty minutes. She scored a 28% on the test because she could not even come close to completing all the problems.

After tutoring for EIGHT hours this week in preparation for the class and exhibiting a B level knowledge of the material to her tutor, Kasie (and her mother) was distressed at this score. She wondered if she didn’t have what it takes to achieve her dream. She worried about losing her scholarship. About having bad grades.

But she couldn’t even stop to process these feelings. Because she had to read a chapter for another class, turn in a summary, watch a movie for film class, write a summary of that and check the volumes of emails coming in from well-meaning (and awesome) professors about changes in the three other classes she is taking in her full-time course load.

Halfway through the day, she received an email from the Pre-calculus professor. It seems there was a problem with the server that ensures nobody is cheating on their tests, and students were locked out of the test prematurely, so they were all offered an opportunity to retake the test with two hours of time. Still not the EXTRA time Kasie is given due to her disability, but we’ll take it.

She scours through the rest of the pile of emails she has and sees an email from her Pre-Calculus professor that if she wants extra time for the test, she is to request it before taking the test. It was sent the night before her test, while she was tutoring from 7:30pm until 11:30 pm to prepare for the test.  She never saw it.

So, she sends off an email to the professor, stating that she needs and qualifies for extra test taking time, and then goes off to take the Pre-Calculus test for the second time. She has to start ALL OVER with the 18 problems.

Mike comes home and takes the boys out of the house so it will be quiet for her. I turn off all other Wi-Fi sources so that she won’t lose her connection. I sit on the patio and pray for two hours while she works problems. She still doesn’t have time to finish all the problems. It just takes longer for her brain to translate what she sees or hears in her head, onto paper and then again onto a screen in front of her. All the while, her brain is STILL processing all of the changes she's just been through. She often sits, staring at the wall, and you would think that she is daydreaming, but if you look at her eyes, they are ticking right and left, back and forth, solving equations and problems that I can’t comprehend.

She gets a 48% on that test. And I get it. We’re all doing the best we can. But she’s been working almost all day on Pre-Calculus. All day.  Three and a half hours of testing with no real breaks. And she finishes. Eats a peanut butter and jelly sandwich and then goes to take a shower. She’s been in pajamas all day because she hasn’t had time to change. She’s been working that hard.

After her shower, she watches The Graduate for her film class. Entertaining, some might think. A break from her difficult studies, if she were a neurologically typical student. But she’s not. And seeing a man have an affair with a married woman was stressful for her. Seeing people feel forced into sex and forced into marriage and forced into careers and lives they hate was distressing to her, and she shifted and fidgeted through the whole thing, frequently checking the clock to see how many minutes she had left of the movie.

I’m not complaining. It is what it is. Just trying to offer up a glimpse of how difficult this time is for her.  I want to illustrate how much of a WARRIOR this girl is for soldiering through. 

When the movie is over, she closes the computer and rolls over, falling into a fitful sleep. She wakes up on a Saturday at 8:30 am, ready to write and turn in her summaries so that she can have one day off, before getting back at it again.

There is no break for Kasie. Because even though she will have 18 or so hours to relax before doing more schoolwork, I’m certain the emails will still be coming in. And her regular life is completely different. The boys are in the house all day. She hasn’t seen her father in over a week because we’re trying to self-isolate and he is graciously allowing us this time (that’s another post for another day…maybe tomorrow).  She misses the few friends she’s managed to make. She misses her grandma, who she also hasn’t seen in a long time because of this virus. And on top of that, still the low-level stress that she or someone she loves could get sick and die from this thing.

And she hasn’t complained once. She hasn’t given up or yelled once. She just keeps going and going like the hardest worker I’ve ever met, her grandpa, who died less than a year ago and who’s death she’s still struggling to grieve.

I don’t know how this kid is doing it, and I watch her in awe of her resilience.

This is the #coronavirus for a college student with special needs. This is #autism. This is #faith. This is #amazing.