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.

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.

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.

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.”

January 15, 2020

We are still learning. Sort of.  We repeat the same pattern every day.   I am not sure, however,  if following the same order for extended periods of time helps with the acquisition and retention of  information and skills or does not. Maybe reruns of the same steps over and over again carve the path too deep to allow smooth transition to other ways of acquiring and utilizing new facts and abilities.

But then, I would also like Robert to gain confidence in his ability to solve tasks that the world places in front of him by presenting him with limited number of tasks.

But maybe too limited and thus leading to increased rigidity.

That is a dilemma I face every day. Dilemma I try to solve by using the same form but filling it with varied tasks.

Years ago, Robert and I used Saxon Math grades 1 to 4.  Each page presented 10-12problems, but they all belonged to different subset of math knowledge. One task was about measuring the line. The next asked to tell the time on the clock. There was a problem demanding adding or subtracting and there was also a task of completing a number pattern.Those were followed by drawings of partially shaded figures with questions about represented fractions.

Saxon Math pages were very different than typical workbooks made of pages filled with only additions or only multiplication.

However, the next page in Saxon Math had exactly the same format. First task on page one and page two required the same skill -for instance  of drawing the line of a given length. So did page 3 and 4. That was where routine – familiarity -was present.

In the last few weeks I have used Evan-Moor workbooks with titles starting with the word “Daily”.

There are:

Daily Word Problems Math . Grade 1 and 2.

Daily Math Practice Grade 3 and 4.

Robert challenges with understanding language as it relates to math problems are reasons for the discrepancy in the levels of those workbooks. It had to add that Robert was capable of solving problems from fifth, sixth and even seventh level of Momentum Math as we proceed from one unit to the next. The difficulties became obvious when there was a need to switch from one sort of tasks (for instance only adding fractions) to others (rounding numbers). That is why the above mentioned workbooks come handy.  On one hand they present Robert with easier demands but require him to apply different strategies to find answers.

Daily Reading Comprehension Still on Grade 1

Very simple texts followed by three multiple choice questions. We read two of them each day. They are not very interesting, We read them only because they are easy so Robert doesn’t have difficulties answering questions.

At the same time Robert is reading one chapter each day from one of the set of 40 Usborne Young Reading, currently  The Strange case of Dr.Jekyll & Mr. Hyde. Those books are considered to be on the third-fourth grade level. The easy texts are followed by questions to check comprehension in a non threatening way.  So Robert reads and chooses the answers to one of the three questions. I don’t ask, however, any questions following the reading of a chapter. Yes, I do sometimes quickly substitute a synonym for more difficult word. Yes, I come with sentences  connecting the texts with the illustrations, but I don’t punish Robert by checking his comprehension.

I need to add, however, that in two previous years, Robert and I worked with the old curriculum Reading Mastery V and VI.  We both were successful. He in learning and I in teaching because the curriculum addressed as much Robert’s needs as a learner as my needs as a teacher.  Unfortunately, those materials were also very expensive and I could afford only the old used ones.  The direct instruction format allowed me to present to Robert the string of  the well designed questions that addressed many different skills.  Yes, I followed the routine, but my  routine resulted in enlarging Robert’s world with new perspectives.

While writing this post, I realized that  there is not much benefit for Robert from Daily Reading Comprehension and that I should return to Reading Mastery. Why, didn’t I realize that sooner?

Well, I followed the daily routine and dug the path too deep to see that it doesn’t lead anywhere.