Week One

The week of March 10th started out a pretty regular week. By the end of the week, it was a bad joke that Friday happened to be the 13th.

Tuesday morning I got my daily swim in early, because it's one of the days that the pool schedule is (was) a little difficult to work my schedule around. I was three months into my daily swimming routine & absolutely, positively loving it. And by daily I mean seven days a week. I miss it terribly right now.

The first I heard of someone I know knowing someone who passed, presumably from the corona virus, was on Thursday the 12th. Specifically a colleague of a friend of mine & since I last saw this friend near the end of February, I did confirm when he last saw his colleague. Which thankfully has not been since last year as he (my friend) primarily works from home. Just like everyone else I am fearful of hearing more stories like this, & continue to hope & pray for more people to remain safe & healthy.

Shortly before I picked Hayden up from school on Friday, March 13th, we got an alert that they would be closed for two weeks. While in the pick-up line that afternoon, the teacher handed me a packet of work for Hayden to do at home. Five days later, on March 18th, a bus from the Education Services Commission arrived at our home & the driver delivered two more packets.

That day was particularly surreal in many ways-- beginning with a terrifying call from my mom about a loved one who was missing... who thank goodness (to say the least) was found, but not before we learned that Dan may be seeing a temporary pay cut soon (yes we know it could be much worse), & then to round things out ended with realizing that the furnace wasn't working when there was no hot water that night. Good news is we were able to get a service person to come late that evening to do an emergency repair-- with gloves, face mask, & no signature required.

The one saving grace last week was that Hayden's in-home services through the state were not suspended. With the completion of a health survey prior to each visit, the scheduling has been left up to the discretion of the providers & the parents. This fraction of consistency was extremely beneficial for Hayden during such a confusing time-- albeit structured a little differently & certainly involving frequent hand sanitizing. But furthermore, they were also able to keep him on track with completing some school work every day. However, we have now made the decision to temporarily suspend services-- because as fearful as we are of Hayden's regression, we are more fearful of not doing our part to be socially responsible.

I don't know anyone who isn't facing some sort of challenges as a result of this current situation. But right now for us the abrupt lack of structure or consistency in school routine, combined with lack of adequate educational support for Hayden, is borderline one of my worst nightmares. We just recently had his annual IEP & next thing I know I am now his teacher, speech therapist, occupational therapist, physical therapist, ADL instructor, vocational teacher & more. Yes on some level we fill all of those roles every single day, but no parent could adequately cover for the entire team of people who work with their child at the drop of a hat for an indefinite period of time. This situation is reminiscent of how I felt three years ago when he was repeatedly suspended from (his former) school-- not to mention the fact that I didn't even know how to explain to him why he was home, when he (thankfully) wasn't sick & the weather was fine.

While we have reiterated to him that we are all going to be home together, and the school will let us know as soon as they can reopen, this is indescribably difficult for Hayden to understand. Next I'll have to come up with something when I break the news that his in-home therapists aren't coming anymore either. And within a day or so he will once again want reassurance of when he gets to see his grandparents (especially Pop Z) which of course I won't be able to offer.

An understanding of a beginning, an end, & about how long something will take are crucial factors in Hayden's daily functioning. We have explained to him in as few words as possible, as simple & as minimally scary as possible, to help him understand some sort of context for what is going on. One day he even sort of finished the sentence for me, as I was answering him. He may be learning the script but he can not make sense of it. I am guessing since his backpack is not where it normally would be on a school night, this afternoon he said to me, "Tomorrow's Monday?" I said yes. He said, "I have school, right?" Once again I recited my lines.

A positive that I can share is that he has been pretty good about eating what I put in front of him, which is kind of unprecedented. And luckily we got a spare freezer right when the shit was about to hit the fan-- which was a mini miracle after my original order with PC Richards was canceled due to no warehouse deliveries. Then, thank goodness my dad was able to order one from a Best Buy somewhere out by them, except the item wasn't actually at the store... so not wanting to chance anything after what happened with the first one, we drove down to the warehouse all the way in Piscataway... were initially denied pickup because my name wasn't on the order & my ID no longer says Zamelsky...  then after more back & forth than I care to explain we finally got said freezer, except there wasn't enough room for the one half of the back seat of my truck to safely lock back into position for Hayden to sit there... so he rode shotgun while I was squished in the back with the ice box the whole way home.
This was quite amusing for Hayden (& his father).

Other pleasantries have included riding his bike as well as working with tools in the basement to disassemble various things from friends or our neighbors (most of which I practically douse with disinfectant before he gets his hands on them). Hayden also has Dan's old phone which he primarily just uses for watching youtube videos, playing music, or taking pictures. The other day he was blasting the oldies with it while riding his bike, & he was belting out certain lines in the songs that he knew. And he has a terrible voice & I can not tell you what a smile it brought to my face-- even made me laugh a few times as I listened to his off-pitch enthusiasm & no regard for volume control with all the confidence in the world.

G-d bless him & what can I say... except that we continue to pray for health & hope for a safe sense of normalcy sooner than later. It's only been a week & like you, we do not know how many more.

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