Avner with his guitar.

April 20, 2020

I’m doing something different today. I’m writing as Avner takes his guitar class in the next room. I’m also writing about today, not the events that brought us to today.

We are all sheltered in place. The self imposed isolation affects us all differently in interesting ways. We’re all a little less productive. I’m definitely feeling stir crazy and Barbara is feeling stressed for any number of very good reasons.

Avner slept until 1 pm today. He woke late yesterday as well. This morning, Barbara and I woke to an empty dishwasher. Apparently Avner emptied it overnight. None of this is remarkable. You might even expect it from your own teenager.

Except for the past few weeks, Avner has been complaining of constant pain and headaches. He’s been sluggish and argumentative.

Of course, we’ve seen this before. This past summer, as Avner struggled with the stresses of completing the GED, we saw his sleep phase shift. Actually, I was home with Avner and Barbara was working remotely and helping her parents in Wisconsin.

At that time, Avner’s sleep shifted later and later until he was waking mid afternoons, between 2:00 pm and 3:00 pm and he couldn’t get to sleep before about 2:00 am. It was frustrating then. It’s a little less so now. There’s a spark in him today, and that’s my reward after weeks of struggling with his declining cognition and well being.

Our KLS community on Facebook has been discussing how some members have been either slipping into episode again or just sleeping more and worrying parents and caregivers. It’s not a complete surprise. People who sleep too much will apparently sleep more when there’s nowhere to go and time is less structured.

I’ve learned many things on this KLS journey that swept my family away from the comfort of predictability. The one thing I keep struggling with, and the one where I may have made the most progress, is learning patience. This will pass. Avner will wake in the mornings again. We don’t know when. We have absolutely no control. I have to be okay with this. Nobody is choosing to do this. It’s not rebellion.

The dishwasher is a big deal. You’ll see throughout these pages, that Avner seems to fade away, into confusion and frustration before he comes back to us. These days, it’s not as dramatic as the other incidents that I’m writing about. There’s a continuity that’s still there, even when he fades away. He’s not gone and replaced by the The Monster any more. If you stay with me, you’ll see those stories coming soon.

Anyway, we hope things are changing for the better. Having a helpful and friendly child for a day isn’t a sea change. It’s not bad to have the relief today. I hope it’s still there tomorrow.

Update:

It’s May 2nd and the shift in sleeping didn’t go the way we wanted. It’s turned into a game of sleep cycle ping pong with emotions closely in tow. Dr. Hopkins at All Children’s Hospital explained to us that moving forward (later) is actually easier than moving backwards (earlier) for these shifts in sleep schedule.

Avner’s been working on this. It’s great in theory. In practice, when you don’t have a functioning circadian rhythm, it becomes challenging to chart a straight line from situation to goal.

Avner’s awakened around 3:00 pm in the past week. A couple days ago, he woke at 10:00 am. Today was almost 2:00 pm. No one has control over this. It’s not willful. It’s not teenage rebellion. There’s nothing to rebel against.

Summer break started Thursday after his guitar exam. We’ve asked that he attend to home chores and put an hour a day towards other responsibilities. When he’s well, he tends to over exert. We actually have a limit on activity because, he pays for activity with days of recovery, where he can’t concentrate or think clearly. We are trying to find a balance between being completely sedentary and cycling between high productivity and exhaustion.

So, now we wait. I hear a lot of cartoons and other tv shows. We cajole a few basic chores (with minimal teenage complaint). One day, he’ll be awake in the morning again and he’ll feel great for enough days to get some stamina back again. Not today.

One day, he’ll cracking jokes at my expense, for more than the hour or two before the adults go to bed, just not today. It will come. I’m the Dad to a kid with KLS and that’s just part of the job description.

In the mean time, I keep up with the cooking, home improvement and my training. I write for those of you who are reading. I have a couple other projects that I’m attending to, but the top of the list is getting everyone else through the day and fulfilling my responsibilities to family and Scout Troop.

This is a good time to also remind you, that if you’ve been reading this site, please consider becoming a Patreon subscriber. Let your friends know that they can follow this story as well. I promise. There will be more sports, monsters and of course, true love for my family and those dear to me.

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