May 17, 2020

It has been rather difficult for me to write about Robert’s adjustment to changes in his environment brought by COVID 19 pandemic. It has been a daunting task not because of anything Robert did or didn’t do, but because of my own lack of energy and my inability to focus. Despite the fact that all days seem the same, I  sense an increased entropy that derails my desire to write and to record whatever is worth recording. I started writing a few times but faced with  incoherency of scattered elements of our lives, I kept deleting sentences before they shaped into a paragraph.

I am forcing myself to write not to document something worth remembering or sharing, but to find a structure, logic, or value in the way we currently spend our days. I hope that writing would help me discover something which eludes me so far.

Not much is left of the activities that filled Robert’s week. No museums, no stores, no movies, no restaurants, no swimming, no riding, no hanging out with Tim, and of course, no HMEA with its schedules divided between work in redemption center, Meals on Wheels, and observing peers while eating snacks and lunches.  The winter ended with canceled skiing lessons and summer will begin with cancelled kayaking. What is left is hiking with dad in one of the remaining open parks – Blue Hill or Cranberry Bog.  As the reminder of the life before COVID 19 the  afternoon  walk became a pillar of Robert’s day.  Housework , meals, games, and learning are arranged around that special hour.

Robert sleeps longer than before. Afraid that I am not able to fill his day with interesting projects, I wait until he wakes up on his own – somewhere around 9 AM.  After breakfast, Robert immediately reminds me what he wants to eat later, but agrees to study for a couple hours before lunch.  So we study by mostly reviewing things Robert had already encountered in the past. “Encountered” is a correct word, as it describes some familiarity with the subject but not a full internalization. After  pronunciation drills,  practicing math- currently operation on integers, reading comprehension, learning new vocabulary words, we conclude our daily session with one Sudoku and one picture to either color or copy.

Robert and I prepare his lunch together. Unfortunately, it consists  always of one of the four dishes – eggplant with mozzarella cheese and tomato sauce (Pomi, if possible),  poblano with mozzarella, chicken fingers, or hamburgers.  The last two dishes are usually supplemented by baked potato with cheese and a bowl of plain arugula.  Robert objects to any changes in his lunch or dinner menu, Only in a restaurant he will  eat something different. As soon as he finishes his lunch-dinner, he immediately tells me what food he wants to have the following day. Nothing surprising there.

Afternoons are different story. Nothing is set in stone. Robert does what he wants or what he believes has to be done. For Robert sometimes it is the same thing. A few times he cleaned bathrooms. Often he does laundry – although sometimes he forgets to pour the detergent in the washer. Sometimes, he washes dishes with or without being asked. Sometimes he doesn’t want to. Recently, we both began to use Pillsbury products to bake breads. Robert rolls the dough into very shapely croissants, sets the proper temperature and the timer. Then he waits…

On some days, three of us play Snakes and Ladder on others we do one 100 piece puzzle. Robert doesn’t watch as much Netflix as he used to two months ago, but ha has learned to enjoy watching television.  He relaxes himself often by blowing bubbles. He keeps a few open bottles on the table and from time to time opens one after another to create his galaxies of shiny spheres.

Of course, he also sleeps during the day.  He sleeps most  when he is not feeling well. It can be that his stomach bothers him or his allergic (I hope) hay fever makes him miserable or  his eczema flares up and his skin gets inflamed.  Unfortunately, those discomforts happen often enough to cause a lot of distress for him and for us, his parents.

 As I am writing this report on Robert’s day, I notice the limitations of such arrangement. Those constrictions are the effect of the rigidity of my approach to teaching Robert and my lack of ability to use e-mail, or Facebook as tools helping Robert to learn how to express himself and communicate with others. I realize how often I omit simple experiments or demonstrations that would require to use something more than just pencil and paper.  To put it simply, I cannot expand Robert’s world without widening my horizons and methods.  e

May 6, 2020

I believed that for Robert the whole point of getting up in the morning was to go out -to parks, beaches, movies, restaurants, museums, stores, banks, post offices and, of course, to his programs. Leaving the house was the highlight of his day. So as I anticipated  need to “Shelter in Place”  I also worried about Robert’s adjustments to his life being narrowed to the walls of the house for most of the day.  There were not many things he liked to do at home. Although we studied together, that was not an activity Robert could do without my supervision. Moreover that was not a “typical”  home activity for the 28 years old young man.  It was, after all, type of schooling. It was a type of a school homework

Now, what he and I needed was to switch from homework to housework.

I am aware that I I have very mixed feelings about Robert learning new life skills. Of course, I want him to learn to be independent and complete as many everyday tasks as possible. At the same time, I catch myself trying to exclude Robert from many new tasks.

Today, I woke up earlier than usually.  I wanted to clean the refrigerator before Robert wakes up. I knew all too well that Robert didn’t like any activity that would result in even temporary changes to the established order of his space. In the past when I was taking out food from the fridge to clean its shelves and drawers, Robert was simultaneously putting it back. He was also very agitated. VERY AGITATED.

So, I usually cleaned the fridge when Robert was in his program.  But now, since he was home almost all the time, I didn’t have any other choice. I had to wash the refrigerator while Robert was sleeping.

Except he wasn’t.

In his bedroom,  he heard a series of noises which told him that something was amiss. He came to check. He stood in the entrance to the kitchen and was trying to make sense of what was going on.  I encouraged him to dress up and eat the breakfast I had prepared for him earlier, but he didn’t move. He was watching me. But, he didn’t put any item of food back in the fridge.

Only then I realized, that he was observing me trying to figure out how he can help.  So I gave him simple directions,

“Take everything from this shelf and put it on the table.”

“Remove everything from this drawer and place it on this counter.”

“Dry this shelf with this rug but leave it on the bench for now.”

Ten, twenty, maybe more similar requests followed.  Robert complied without a murmur of protest.

Twice he wanted to put a shelf back in its place too soon, but didn’t protest when I asked him to wait as there was more cleaning to complete.

When the refrigerator was clean and it was time to put all the food back, Robert said, “Robert, Robert” .

That was his way of telling me that he wanted to do that himself and that he didn’t need me to interfere.

So, I didn’t.

It is his refrigerator, his kitchen, his home also.