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  • Writer's pictureCindy

Just a normal week

“Ugh… What a week.”

I can’t tell you how many times I’ve said that. It seems to feel right most weeks-- including this week. So I thought this week it might be fun to run back through the last 7 days just as sort of a slice of life. Consider it your free ride on the Bey Family Roller Coaster.

Ladies and gentlemen, please be sure your seat belts are buckled and please keep your hands inside the car and remain seated until the ride has come to a complete stop.

Kirk and I tend to text each other throughout the day… It keeps us connected to each other and in the loop with what’s happening. When Nolan was a baby, I used to joke that Kirk would call every day with “The Poop Report” where he basically would give me a run-down of the diaper situation. Texting lets us give each other a heads-up on all things poop and non-poop (non-bathroom even) related without needing to interrupt the other if one of us is preoccupied at the time.

A week ago today, we were celebrating the fact that it was Friday. Who doesn’t love a Friday? The day before, I (hopefully) found funding for a bike for Nolan. With no school, therapy, music or anything right now, our dude needs some activity. I’ve been looking at options, but we don’t really have much of a budget right this minute. So the fact that I seem to have found a way to get the bike he needs without impacting the household budget in a major way had put me in a pretty good mood going into the end of the week.

So most of the day was typical “what do we need from the store/ we need to do this over the weekend” type of everyday conversation that happens among family members. Then mid-afternoon, I got a text detailing what I tend to think of as Today’s Adventure. These texts can be almost anything, but they’re rarely anything I would expect. The vast majority of the time, Kirk is the sender of a Today’s Adventure text since he’s home with Nolan during the day-- I rarely get to return the favor.

Today’s Adventure? Nolan bit open a stress ball that was full of gel.

This was also the day after the governor of Wisconsin declared that school would not reopen this academic year. The principal of Nolan’s school had sent a video to all of the families. In it, he basically said that this isn’t how anyone wanted the year to end. When he addressed the 8th graders directly, he got emotional. As Kirk mentioned earlier this week, Nolan’s school does an 8th Grade Recognition ceremony every year. He apologized that this year’s 8th grade students wouldn’t get that or the major (fun) field trip at the end of the year, and promised that there would be other recognition somehow.

It’s been really amazing to see how all of the educators in Nolan’s life are working through this pandemic. This made itself obvious throughout our week.

The weekend was fairly typical of our new normal. We had lofty goals for things that needed to get done, but after a long week Kirk needed a break and Nolan needed some mom time. And I needed some Nolan time. I had planned to (finally) get our taxes done and fix the caulk in the bathtub. Kirk had a meeting to work on, plus he’s got chores that he likes to do on the weekend while I can keep Nolan out of the way.

It wasn’t a super productive weekend, but it was a good weekend. Nolan and I took a couple of short car rides, and we walked part of an old quarry road that leads to a hiking trail… We didn’t make it very far, but it was a start.. Plus the beginning is a relatively steep climb for a kid who’s used to walking on relatively flat sidewalks and a mom who sits at a desk for 40 hours per week.

Monday was back into the routine. Today’s Adventure included Kirk taking Nolan for a walk (as they’ve done more often lately). This time, though, it started raining before they got home. Kirk tends to be a fast walker while Nolan is clearly a dawdler. He’s definitely a kid who enjoys the journey and doesn’t care about the destination. My boys are polar opposites in that way.

Oh and also-- Nolan loves to be outside in the rain. The faster you try to get him to move, the more he enjoys being out in the rain. It’s definitely an adventure.

Tuesday started out with Nolan having what seemed to be a pretty restless day… We often use the term “stimmy” on the days where his repetitive behaviors (the self-stimulating behaviors that people with autism often display-- things like flapping hands or spinning objects) are extra-heavy. These are the days where Nolan is seeking extra input from his senses for reasons that we don’t often understand.

Kirk expected the at-home schoolwork to be challenging on this day. I try to reassure him that it’s okay to not push as hard as Nolan might normally be pushed at school while we work through our current situation, but I know it’s always hard for Kirk. He wants the very best for Nolan, and he doesn’t want to sell him short on academics. It’s my job to remind Kirk that living through this pandemic and the at-home school and social distancing that we’re dealing with has disrupted everyone’s lives. Teachers have the training and disposition to give our kids what they need to be successful students. We have none of that, and our focus for Nolan’s whole life is on Nolan as a whole person-- not Nolan as a student. No one expects us to do what teachers do--we’re just not equipped for it.

Nolan’s SLP (Speech Language Pathologist) from school also scheduled a session via video chat. She hadn’t done that yet, and Kirk wasn’t optimistic that Nolan would be cool with it… But what did we have to lose? I guess we’d find out in a couple of days.

Also on Tuesday, my sister sent me wine from Villa Appalaccia. Part of me wants to save it for when we can gather with friends and family again. Time will tell if it makes it that far.

The rest of Tuesday consisted of Nolan eating everything in sight (it’s what teenagers do) and another key breaking off of Nolan’s keyboard. He’s the only kid I know who could wear out a keyboard in under a year and a half.

Wednesday’s big event was a Zoom meeting with Nolan’s teacher, paraprofessionals and other classmates. It sounds like it was not one of his finer moments. But like I reminded Kirk, it was something new that he’d never done before. This did not leave Kirk confident about the upcoming video chat with Nolan’s SLP.

Kirk had another meeting to transcribe after I got home from work, so he was also up later than normal. I got Nolan out of the house for a while (thank you car rides), and we happily had leftovers for dinner.

Thursday started with a Today’s Adventure text. I’d forgotten to take my shampoo out of the shower before I left for work. In most households it wouldn’t be an issue. In our house, any soap, lotion, hand sanitizer, shower gel, conditioner, shampoo or liquid dish soap is not safe. I’m not sure if it’s the texture or the smells… maybe the taste? Whatever it is, Nolan can’t get enough of it. Kirk included a photo of the damage (which looked relatively minor compared to Nolan’s track record--that’s probably another post for another time, though).

The highlight of the day, though, was the video chat with his SLP. Nolan loves her to death (whether he’s too cool to admit it or not). He responds to her really well, and a big part of me thinks that’s because she knows he’s capable of more than he lets on… And she’s not going to let him get away with half-assing anything. She’s a rock star and definitely one of my favorite people in the entire school district.

As the day wore on, though, the tired set in hardcore. Nolan was up earlier than normal, and by this point in the week we’re all dragging. I’ve spent too many hours in an office staring at numbers and Kirk has spent too many hours being pulled 3 directions at once. It’s exhausting. Plus sleep has been strange since the Safer At Home order started last month. We do what we need to get by

So that leads us to now. It’s late Thursday night (later than I would admit to my mother-- even as a woman in my 40’s), and I’m scheduling this to post Friday morning… Hopefully Nolan won’t be up too early again, and we’ll all get at least an okay night’s sleep.

If not, the goal of the upcoming week is to catch up on sleep. (Spoiler alert: We never catch up on sleep.) For now, that’s all I’ve got-- I’m completely out of steam.

Thank you for riding the Bey Family Roller Coaster. I hope you visit again soon.

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