Around and Through Intersecting Circles of Communication

June 18, 2020

Robert and I  don’t have any problems with communicating the basic ideas to each other. He can tell me (or write me) what he wants for dinner the following day. He can let me know that he plans to wash either dark, white, or colored clothes. He informs me about his plans for the next day (lately mostly walks in one of four open parks) while I can suggest simple changes to that schedule. He can alert me to the fact that milk, eggs, or tomato paste are in short supply and need to be purchased.  I can ask him to bring different objects from different places.  He follows my directions when he cleans bathrooms or when he cooks one of the four dishes. Our exchanges are simple and straightforward. They are like short line segments.

The problems arise when the multiple words are needed to address a new situation and flexibly adjust to new rules. To address such demand the words need to be strung into sentence. Maybe even compound or complex sentence.  There has to be “because” ,”if”, or “first (…) then” in the sentence.  Robert doesn’t use such sentences. He also has difficulties understanding that the words spoken by me should convince him to accept a new situation or a new rule. The past and current arrangements of our surrounding take precedence over feeble words.

However, the time and frequent repetitions can make a dent in the walls of habits. So it  is possible to prepare Robert for something which might happen in a few days.  Just telling Robert over and over what is going to happen in the near future (with some clarification regarding when and why) makes it easier for him to adjust to the anticipated change.  Still, there are no words that would convince Robert to accept unanticipated changes.

I bought a new frying pan and took the old one to a garage. I placed it on a shelf, clearly visible to anybody who would look for it. This was my way of starting discussion with Robert about what to do with the things I wanted to dispose off. I usually removed them from their established place but didn’t dare to throw them in the trashcan knowing that Robert would search the garbage diligently.  Placing an item in the garage was my opening position in negotiating the future of the pan. Soon, Robert let me know that he had a different idea. He found the pan, brought it back to the kitchen, placed it in  the oven, and  took the new pan to the garage.  That was his position. I stood my ground and switched the pans again.  So did Robert. So did I. On the third day Robert noticed that the handle of the old frying pan was loose. He assumed that this was the reason for my effort to get rid of the pan. So he insisted that his dad fixes the handle. “Screw, screw” he kept saying as he followed his dad with a pan and a screwdriver. Dad  told Robert that it could not be done as the screw didn’t have any indentation. Robert seemed to accept that response.  However, a few minutes later he came back and showed dad and me that handle wasn’t loose any more. We don’t know how Robert fixed it, but fix it did.

I needed a different approach. It was much simpler. I used the new (and  bigger)  frying pan to make Robert favorite foods: poblano or eggplant. Robert didn’t protest. But although he accepted the new pan, he wanted it to be permanently kept on the stove as as the space in the oven was occupied by the old frying pan. Soon, however, he relented. As more cooking was done on the stove, it became obvious that the new pan has to find another place and the stove was most appropriate. So, Robert agreed to put the old one in the hard to reach end at the bottom of the corner cabinet.  I hope that in a few weeks, he will forget about it and then I will throw it away.

 

Where Do the Screams Spring From 2

June 1, 2020

Robert’s screams arrive suddenly and unpredictably most of the time. They are not easy to deal with. We know that Robert is in discomfort, but we don’t know why. Even when he tries to tell us, we don’t understand. That leaves us powerless, unable to sooth him or help him.  Nonetheless, we have to try to find the causes of his distress. Understanding Robert’s reasons for screaming would allow us to either calm Robert, or calm ourselves (when the reason is not serious) or both.

Episode 1

Robert’s dad had a virtual doctor’s visit. He was using IPAD to connect with his physician. It was scheduled early in the morning when we expected Robert to be still sleeping or spending never ending time in the bathroom. But Robert was up and not happy. He didn’t want his dad to sit at the dinner table early in the morning and looking at Robert’s IPAD. He screamed. He was agitated.  He hit his cheeks.  We tried to explain that this was a doctor’s appointment exactly like the ones Robert had before. He had three already. Robert was not convinced. After all we used cell phones to conduct his appointments not IPAD.  He kept repeating, “Computer, computer”. Then he screamed as if something terrible was happening.  We were not able to persuade him to go to a different room, watch TV,  eat his breakfast, or just be quiet.  He couldn’t leave his dad in the wrong place with the wrong device.  “Computer, computer” he kept repeating between screams letting dad know that he should work on his computer and not on Robert’s IPAD. His screams interfered with the visit. The doctor was concerned.  But luckily, she knew Robert and she knew Robert’s issues with screaming.  She said, “Hi Robert.  How are you feeling? ” Robert stopped screaming.  He came closer and looked at the IPAD to check who was talking. He recognized the doctor.  He even said very softly, “Good, good”, calmed down, and retired to his room.

Robert was upset because the  morning routine was broken.  He tried to force us to act as we always did but we couldn’t. What calmed Robert was  the presence on the screen of the doctor whom he knew well.  Her presence explained and excused the changes to the morning habits. It was also beneficial that the doctor addressed Robert directly and by doing so she somehow changed the setting of Robert’s mind.

Episode 2

Robert was agitated. He made many grumbling noises. He said something. Whenever he says something I don’t understand I try to decipher that word through the context in which it was said. Since there was a letter on the table, I assumed Robert was saying, “mail”. Recently,  making sure that we send all the letters properly became Robert’s obsession. So, I said, “We will drop the letter in the mailbox later.”  That was supposed to calm Robert, but it only irritated him even more. He kept repeating his tangled sound louder with addition of sharp screams.

“Robert, write me what you want,”  I said.

And he did.  He wrote, “May”.

Now, I knew.  He was looking for a May page from a wall calendar. “Robert, it is in a recycling bag”.  Robert looked, but couldn’t find it. “Robert, it is on the bottom.” He looked again, found it, unfolded it, took a second look, folded it back and dropped in the recycling bag again. He was fine.

Robert gets very anxious when things disappear without explanation. For him this is a sign that there is something very wrong with the world. He also gets upset when his speech is misunderstood. Luckily, he can write. Not much, one word.  But that one word makes a world of a difference. 

Episode 3

Robert screams very loudly. He produces sudden, sharp screams.  He hits his face with short, quick movements.  His face is red even in the places he is not touching. The skin around his eyes seems swollen. There is no point of asking Robert to write.  He is not looking for anything, he is not trying to fix anything to make his surrounding compatible with his OCD rules. He is probably in pain. But the pain is something for which Robert lacks words. He know the word “pain” but he cannot use it.  I don’t know why.  He cannot say what hurts.  Pain is something attacking him from inside and that makes it impossible to describe.

I think he is in pain. But I don’t know what hurts.  I am not even sure he is in pain, I only assume.  Maybe this is asthma, so I give him inhaler. Maybe this is some more serious allergic reaction to something. (But what?)) so I give him Benadryl.  Maybe he has problem with gases, so I give him Metamucil Wafers and a glass of water. Maybe he has headache, so I give him Advil.

Then I wait.

 

 

Buying Bubbles and Other Things …AGAIN

May 23, 2020

Bubbles

Robert has had a long and a complicated relationship with bubbles. In old posts https://krymarh.wordpress.com/2012/07/11/bubbles-the-blessing-and-the-curse/ and https://krymarh.wordpress.com/2012/07/11/all-the-bubbles-in-the-world/ I wrote about Robert’s fascination  with bubbles which turned into a difficult to endure fixation.

For the first ten years of his life Robert believed that  the sudden appearance of colorful bottles filled with soapy liquid on the shelves of supermarkets heralded the arrival of spring. So, to properly celebrate spring he had to have bubbles.  He really had to.  For two or three months of each spring I was buying them and he was blowing them.  As he got older, his fixation subsided.  He still noticed the presence of bubbles in stores, he even kept stopping next to them and  touching  them but didn’t insist on buying.

This spring, it was I, who kept buying bubbles for Robert.  I believed, as it turned out correctly, that colorful jars with soapy solutions and wands would brighten our stay at home days. A few times a day, Robert opens each of the six bottles, takes out the wand and blows bubbles a few times.  Then he closes the jars and resumes his other activities.

Shelf liner

For many years, we used clear shelf liner as a laminate to prepare folders from Take Me to Your Seat workbooks. There were times when we made 4-5 folders a week. They were attractive and fun to make. They added variety to Robert’s learning. Lately, however, I was afraid that the educational tasks presented in these workbooks were too challenging for Robert, so we slowed down to maybe one folder every few month. But now, the need for refreshing variety in learning was stronger that my reluctance to subject Robert to more advanced tasks and we returned  to making 4-5 folders in a week. The rolls of clear shelf liner were gone in three weeks and I had to buy them again.  Just this time I did it on line.

Birdhouses and Other Woodworking Kits

When Robert was between 12 and 20, we built together many wooden birdhouses.  Then, the birdhouse kits were easy to find in Toys R Us.  Robert with my help assembled over 40 different birdhouses using on some screws, on some nuts and bolts, and on others just nails. We hang some outside, but only once they had a locators and they were…wasps.  The more sophisticated ones (shaped like pirate ship or a train) we keep at home. Many we gave as presents. Robert liked woodworking, although he preferred simple tasks like making a wooden planter instead of a two story birdhouse. I believe that this is also a good things to do while staying home, so I ordered another set of birdhouse kits. However, to my chagrin, they do require neither nails nor screws, just glue. Finally, I bought a set from Kiwico, a company advertising itself on TV -It is Make your Own Color Mixing LED Crystal. Yesterday Robert and his dad built it together. And it works!

Usborne Young Readers

Ever since I discovered, four or five years ago, Usborne Reading Programme, I kept buying Usborne’s books. I am not sure what an effect they had on Robert, but I appreciated the fact that they provided introduction to themes from classical literature.  Although one might argue that not much was left of the great literature -just a simplified plot and a few short quotations, I believed that it was important to Robert to be exposed even to the cut down versions specially since many great illustration supported his understanding of the texts.  After buying 10+ separate books I purchased the  The Usborne Reading Collection for Confident Readers. Robert read 39 out of 40 books in this set.  The last one which I was planning for him to read this March was Anne Frank. But with Covid 19 pandemic dramatically transforming Robert’s life I decided to postpone reading until return to “normal”.  As the return to normal seems farther and farther away I looked for other books to buy. And so I did.  However, I made mistake and instead of Usborne books I acquired Pearson English Active Readers. As I placed the first book  on a week long quarantine, I can only say, that it does some pictures and that each chapter ends with questions. I am not sure if those are questions checking understanding of text or something else.

 

 

 

 

 

Staying Home 2

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

 

 

 

Learning to Stay at Home

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.

 

 

 

 

 

 

 

Regaining Balance while Sheltering at Home

April 28, 2020

I am in search of words to describe the obvious and not so obvious changes to our lives brought by COVID 19 pandemic. As I wrote in my previous post, at least two weeks before Robert’s program was closed, I was trying to prepare him for time without HMEA, without swimming pool,  horseback riding, without skiing, and without trips to Cape Cod.  So we should be ready to face the challenges of sheltering at home. But we weren’t as  our first reaction to staying at home was oversleeping. That Robert slept until 10 or even 11 each day is not surprising. He  seems to believe that there is no point of getting up if nothing is planned for a day. And how something could be planned if every place Robert liked to attend was closed.  However, the fact that I kept sleeping past nine was harder to explain. I always get up at 6 AM even on weekends.  Now, I wanted to stay in bed longer as if I too lost focus and /or balance. I had to force myself to  resume basic daily routines and to adjust to new circumstances. Moreover, I needed to  entice Robert to do the same.

I felt obligated to fill Robert’s day with meaningful activities but I had neither will nor strength to do so. During the first three weeks we haven’t not been even study together. I felt drained.  I was also afraid that if we continue with our daily lessons, Robert would expect to go to his program as if nothing changed. That might cause some unnecessary friction, I wanted to avoid. There was also another reason for that, I wanted Robert to adjust to staying  home on his own terms. I wanted to see how that would go.

And yes, Robert slept a lot.  His naps, however, were intertwined with periods of watching Netflix on his IPAD or …. watching TV. That was new as in the past, Robert rarely, if ever, chose to watch television at home. Now, he discovered Bee Gees’ music and rediscovered Sesame Street.

Soon, Robert learned that he still could order what would be for  dinner the following day (the same way he always had done it before) . He also knew that the next day he will go for a walk with dad.  The walk became the highlight of his day and offered him something  to look forward to.

As he became, more and more comfortable with staying at home, he took charge of the laundry,(well, he still needed to be reminded of pouring detergent in the machine) and emptying dishwasher.  Moreover,  he also started rinsing the dishes  and placing them IN the dishwasher.

When, after a few weeks long break, I proposed that we return to studying together, Robert didn’t protest. We skipped writing in his notebook, he used to carry to HMEA as a communication device. Instead we enriched our time together by making folders from Take It to Your Seat workbooks. Finally, Robert colored two identical pictures from two Pirate Coloring books.  Originally there purpose was to teach Robert to color the same way I did AND to color differently than I did. But I was extremely happy that Robert colored both all by himself without me giving him any directions at all.

A few days ago, I started cleaning the bathroom.  Robert came in. “Do you want to clean?”

“Yes, yes, yes”.

And so he did.

As he was spraying the sink with a cleaner, I realized that he really wanted, much more than I expected, to contribute to our life and enrich his own.

 

 

 

 

 

 

 

 

Establishing New Routines, Food.

April 25, 2020

Long ago, before the times of COVID19, Robert had his life all figured out. He was going to HMEA from Monday to Thursday, On Friday, he did different chores with me which might have included picking up and depositing his check, paying one of the utilities, cleaning bathrooms, doing laundry, going for a walk to Stony Brook and eating in McDonald’s. On Mondays. Wednesdays, and Thursdays, Robert ate one of four dishes: hamburgers, chicken fingers, poblano, or eggplant. On Tuesday he went with Tim to Five Guys for dinner. On Saturdays or Sundays he either ate at home – potato with cheese or latkes or we ate in the restaurants on a way from one of the day trips.

No, Robert would not eat poblano, eggplant, hamburgers, or chicken fingers at home on any other day but on Mondays, Wednesdays, or Thursdays and only if on those days  he attended HMEA programs. That presented a problem when he had to stay home for days, weeks, and months. He protested vehemently when I tried to prepare one of the four dishes during the first week of “Stay at Home” advisory. So, for the first three days, he ate mostly potatoes with cheese and latkes for dinners. On the fourth day, I decided to prepare his food any way but during the time he was still sleeping.  As I anticipated, faced with such fait accompli Robert relented and not to let the his food get wasted, he consumed it, although a few hours before dinner time. The following day, I prepared his eggplant during the time Robert and dad took a short walk.  Robert didn’t mind.  Now, however, he decided to regain some control, and from that day on, he let me know what dish I should prepare for him the following day. Moreover, if he wanted either chicken fingers or hamburgers, he always moved them from freezer to the fridge one day before. He also kept checking if there were all ingredients needed for the dish he requested the following day.  If that was the case, he kept saying “store, store” and wrote on a notepad what he wanted.

With established dinner schedule, we moved to the next step in which Robert began to participate in cooking his own dishes.  He had used to do that when he was at school, but as he kept returning from his adult programs more tired and hungry I made sure (rightly or wrongly) that his dinner was waiting for him.

Eating apples at home was another issue we encountered. Robert ate one apple everyday at lunch time in his program.  He also ate apples in the car during our day trips. The apples belong to those times and those spaces. I decided to make a special celebration for eating apples together.  I told Robert about the special  apple family afternoon during the breakfast and the lunch.  “At 5 o’clock , we will all eat apples.”  . And that is what happened.  Apples were served in a glass bowl. Each of us reached for one that day and every other day afterwards.

 

 

 

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Learning at Home, Again

April 24, 2020

As COVID 19 is still a real danger and Robert is staying home, we returned to more divers teaching and learning.

Today, Robert and I prepared three new  folders from three different Take It to Your Seat Centers. Each of them required a new skill to be used to complete previously acquired knowledge.

1. Prefixes.

The concept of prefixes is not new to Robert.  Many times he practiced adding “re”, “un” “dis” “mis” to other words. Today however, he faced previously unknown prefixes “co”, “fore”, “super”, “sub” “multi”. and “im” .  With new prefixes came  words, he was not familiar with: forewarned, coexist, supersonic, immature, submerge, multipurpose.  I gave him a few examples, but of course I didn’t expect him to master them yet.  I opted for creating a vague idea of their meaning and possible usage.

2. Name that Relationship

Robert and I completed many sets of analogies in the past. I dare to say that he was rather familiar with them and able to finish quite a few independently. Today’s task, however, was a different one. The analogies were already completed.  Robert’s assignment was to decide what kind of relationship were they based on and place them in one of the 4 categories: Cause and Effect, Part- Whole, Antonyms, or Synonyms. That was slightly confusing as it required Robert to change the focus and opt for more abstract ideas.

3.Compare Decimals

Robert encountered two kinds of problems while working with this folder. He had unexpected difficulties with the first kind. He was so unsure of himself, and made so many errors that I started believing that he forgot how to compare numbers in general, not just decimals. Then I realized that adding a new element to comparisons baffled Robert. There were already mathematical signs of “less”, “more”, and “equal” placed between numbers but sometimes those signs were correct and sometimes not. Robert had to decide if those were true or false statements. He clearly didn’t want to disagree with what was in front of him and thus hesitated, seemed to smell a trap and trying to avoid it he chose the wrong answer. When I realized that, I covered the sign with my finger and asked Robert which one of two number is larger.  He knew that.  I took my finger out and allowed him to decide if the answer on the page was the same he gave me. Now he realized that when the sign didn’t match his response it meant that the inequality was false and if the sign agreed with his answer then the inequality (or equation ) was true. I do hope that it was also a lesson in understanding that he should trust and rely on his own judgement.

Not surprisingly the task of just placing correct signs in the empty circles between two decimals was an easy one for Robert since there was nothing to misdirect him and confuse him.

 

 

 

Social Distancing with Robert

March 29, 2020

For the last two weeks Robert has stayed home. His program was temporarily closed as was YMCA and JCC where he swims. His last couple skiing lessons were cancelled as were his horse riding classes. Moreover, I canceled weekly companion hours with Tim, as they involved visits to many community settings.  The life suddenly became very different with closed movie theaters and museums.  Also, trips to stores were out of the question as Robert tendency to fix all misplaced items, turn them to face the front, straighten them, pick them up was contraindicative in times deformed by Covid-19. Even the trip to bank to deposit his check changed. No more going inside to use ATM machine, but driving to the window and passing the check to the teller and not even asking for recite.

Still, there were parks –  Mass Audubon and Trustees of the Reservation. But after ninth day, they closed as well. Now, only  state parks remain. That allows for short daily walks around lunch time.  This is what Robert plans every day – a walk with dad.

However, this is an allergy season for Robert. In the past, we mostly walked by the ocean where there was the least amount of pollen. That helped to calm his sinuses. This is out of the question now.

Given all these changes, Robert is surviving relatively well. Yes, he asked about his program HMEA Employment in Plainville, he asked about riding, skiing, and swimming.  He suggested movie theater and science museum, bank and post office. MOst often he asked for a trip to Cape Cod as he loves Audubon Wildlife Sanctuary in Wellfleet.  He walks during times of low tide on the boardwalk toward wet sand of the bay, sits on the dry dune and breathes calmly the air devoid of pollen. But accepted my response that those places are closed because of the virus.

So now, his plans for the following day, which he keeps making, are reduced to walk and a specific dish for dinner – hamburgers, chicken fingers, potato and cheese, eggplant or poblano.

It did help that almost two weeks before all programs closed, I tried to prepare Robert for that.  Seeing what was happening all over the world, I knew that such closure were imminent.

So every other day, I wrote the text for him to copy.  Doing that was not new, as that was the part of our daily routine.  I wrote something about what has already happened or what was planned to happen in the close future, or something to explain new ideas, and Robert copied the text in the lines below.  The difference was, that two weeks prior to the closure (or maybe even sooner) I started writing that there would be time when Robert would have to stay home.  That the HMEA would be close.  That we would not be able to go to movies or restaurants or museums.  Robert copied slightly anxious.  Usually, after he did, he still wanted to make sure the following day, he would go to HMEA.  And usually, I confirmed that he would still go.

Until, I didn’t.

So now we are home.  Robert, his dad working from home and I.  Only his sister, Amanda, is in Paris, practicing social distancing on her own.

This is not a great time for Robert. He still tries to be occupied.  He folds laundry, he helped baked chocolate chips cookies.  He does, what he very rarely did before – watches TV. Not that he is thrilled.  He sleeps more than before as if that were the best way to adjust to the world that closed itself to us.

Well, still there are board games,Sudoku,  and stationary bike. Maybe when it gets warmer and stops raining we will do some work in the tiny, plastic greenhouse. Maybe.

 

 

 

 

On Importance of Shoes and Mother

January 21, 2020

It was not easy for Robert to stay home while I took a 10 days long trip to France. He asked about me hundred times each day. He kept checking and rechecking on a calendar the date of my return. Often, he displayed anxiety and confusion.  My absence was not easy for my husband either as not only he had to take care of Robert alone but  he had to keep responding to wave upon wave of Robert’s repetitive inquiries.

They missed me.  No doubt about that, They wanted me home.

So I expected them to impatiently wait for me  at our town’s train station.  I called my husband from the airport. I called him from the Silver Line bus and from the commuter train. He knew when I was coming and he was supposed to wait for me.   But he wasn’t.

I called him only to find out that they didn’t leave the house yet. As they were getting ready to leave,  Robert shoe laces broke and he couldn’t tie them.  He couldn’t!  But if he couldn’t tie shoe laces  he couldn’t wear his shoes. Of course, he couldn’t leave the house in untied shoes. Those are Robert’s rules and he doesn’t break them easily. So he tried to fix them over and over and over again. He was not able.  He got frustrated and angry. And stubborn.

Although Robert had a pair of new shoes bought just a few weeks before, he didn’t want to put them on as that meant giving up on his broken shoe laces.

Moreover, Robert really wanted to drive with dad to the station.  He really did. He didn’t want dad to go alone but how he could go when the shoe laces were broken. Besides, Dad couldn’t go either as Robert was too agitated to be left alone. With  loud sounds Robert expressed his confusion and displeasure with this unsolvable dilemma.

Only when he saw his father getting into the car, Robert decided to put shoes on and drive with him. He was still tense when I finally met him. He was clearly contemplating if he made a right decision. Ignoring my presence, he  kept repeating “shoes, shoes, shoes. Ten times, hundred times.

With a tint of irritation in my voice I asked, “Robert what is more important: mother or shoes”.

“Shoes, shoes” he answered without hesitation.

I didn’t hesitate either and sternly replied, “Well, if shoes are more important to you, I am going back to France. Jan, please stop the car.”

Jan pulled to the curb and stopped the car.   I opened the door and put one leg on the sidewalk.  Only then I heard very loud, panicked voice,

“Mother!!!! Mother!!!! Mother!!!.”

For the next few days, whenever Robert began to perseverate  about shoes I asked the same question and got the same answer. “Mother, mother, mother.”