Rejecting Entropia

February 6, 2016

As soon as I drop dirty laundry into the hamper, Robert rushes to organize them in his way. He removes the clothes I have just dropped and places them back in the hamper one on top of the other in a the same pattern that he uses for his own garment. He places his clothes in the hamper in the same order he takes them off.  The shirt is on the bottom, followed by the white undershirt.  Next go his socks, jeans, and underwear. Every article of clothing is spread evenly.  In the morning, he does the same thing with his pajamas. He changes pajamas everyday.  Nothing would convince Robert to wear the same pajama two nights in a row.

When he suspects that either his dad or I messed up the clothes, he empties the whole hamper and meticulously places each item inside  making sure that the order is followed. Day clothes, then night ones, day clothes, then night ones.  My clothes are also placed in a proper sequence.  And so are dad’s.  Robert doesn’t rush.  He takes time.  He doesn’t make mistakes.

With similar attentiveness to the details, he places clothes in the washing machine and later in the drier.  When doing so, he separates white garment from the dark, but nonetheless, keeps as much of the original order as possible.  It is no wonder that Robert devotes a lot of his time to the laundry.

I have tried to explain to Robert that organizing dirty laundry is not important since the washing machine and the dryer would mix up all the clothes.    I have told him that we  could just drop the clothes randomly to the appliances and concentrate instead on folding and putting clean laundry in appropriate places.  I have told him that many times, but Robert doesn’t accept randomness. Unrelentingly, he keeps on organizing  each chaotic corner of the universe. One laundry basket at a time.

Decoding, Enforcing, and Correcting Rules

February 5, 2017

Robert tries to find patterns in  our chaotic movements and haphazardly performed everyday chores. If we repeat the same, meaningless behaviors a few times, Robert treats it as a paradigm of how we should behave every time. He insists that we  follow the model he established for us based on his observations.  We usually notice that when, for one reason or another, we abandon our insignificant routines and Robert becomes restless and  tries to compel us to return to our convenient but senseless habits.

We know we cannot allow that, but all too often we are compliant with Robert’s wishes.

  1. Robert wears his socks at home while I usually walk barefoot at home.  So, when I had my socks on, Robert followed me all over the house.  “Socks off, socks off” , he kept repeating.  A few times, I took them off not really caring one way or another.  Only when I noticed how distressed Robert became about my socks, I understood that we had a problem.  So, to Robert’s dismay, I started wearing socks more often.  Knowing, however, how persistent Robert can be, I developed a strategy that would give Robert an indication of how long I would keep them on.  “Socks off, socks off” , insisted Robert.  ” Oh, you want me to take socks off, I will do that when I finish this or that (usually short activity).  “I will take them off when I get on the sofa to watch TV”.  It took a while.  But today, I can proudly say that Robert doesn’t care one way or another if I wear socks at home or not.
  2. Robert doesn’t care if I do some work in the yard or in home.  He cares  a lot, HOWEVER,  if his dad instead of working on the computer decides to do a longer project in the back yard. Dad, s venture into backyard, makes Robert extremely anxious.  He follows his dad every step repeating, “Computer, computer.” He screams with a great pain when dad keeps reinforcing a wobbly vegetable garden gate.  He tries to pull him home.  Well, he is a pain in the neck.  The only tool to  mitigate this behavior was to ask Robert to help.  “Bring me the wrench from the garage”  “Hold this”  “Put this away in the garage.”  etc.  Giving Robert small tasks  didn’t extinguish the behavior completely, but it reduced it.  Still, we could plan it better.  we could tell Robert ahead of time of what dad would do and what would be expected of him.  Of course, Robert’s different reactions to my work in the yard and dad’s work are result of his observations.  Dad works on a computer almost all the time, while I work in the yard and in the home.
  3. I used to drive Robert to his afternoon activities, but for the last few months it has been his dad who has taken him swimming and horseback riding. Everything went smoothly until one Sunday dad get sick and I needed to take Robert to his horse riding class.  No way! Robert insisted that dad goes with him.  Nothing seemed to persuade him otherwise.  We had to cancel horseback riding class that day.  And as of now we are still planning out next move.


New Obstacles. New Frontiers. Part 1 Home, Home

February 2nd, 2017

Not so long ago, I had a notion that Robert’s behaviors would only get better.  I thought that as he grows and learns, the problem behaviors we had dealt with in the past would vanish. I believed that acquired knowledge would result in better understanding of his environment and thus result in appropriate adjustment to new situations. I didn’t anticipate new kinds of issues. But they kept emerging.   Some of them were created by Robert’s ideas about the rules controlling his world.  The sources of other remain murky.  Whatever their origins, the main cause of Robert’s problem behaviors remains the same.  It is the lack of ability to communicate the causes of his distresses to others.

Robert used to like going out.  He still does.  He likes going skiing.  He likes going on Saturday’s field trips organized by one of the centers.  He loves SNL parties he can attend in another program. He wants to go to movies.  Yet,in the last year in all of those and other places he expressed very  loudly his desire to go home.

“Home, home”,  he would call in the middle of the movie.  “Home, home”, he demanded not even one hour into 2 hour-long ski lesson.  “Home, home”, he insisted in the middle of the party.  “Home, home, home” he would keep on saying using all kinds of voices, from a low one to a very dramatic high pitch.

It gets more complicated.

In the movie theater, for instance, Robert doesn’t want to leave before the movie is over.  He wants to go home, but not before the ending.  If I get up, and say, ” Let’s go”, he would equally loudly protest, “No, no, no!” .  Because Robert wants  the movie to end just that minute, so he could leave after finishing seeing it.

In the bowling alley, Robert would keep bringing regular shoes to his bowling companions, so they would stop playing, take off their bowling shoes, and leave so Robert could go home.

He can be extremely  persistent.  He can repeat “Home, home” ten times a minute, every minute for an hour or longer.  This is not easy for him, and it is equally difficult for everybody else.

If this behavior happens during his swimming or skiing lesson, it is helpful to tell Robert that he would go home after completing some other activity.  ” Robert’s swimming instructor, tells Robert that he would go home after swimming one or two more times(or three, depending on her assessment of his distress.) She moves her hand back and forth as many times as she wants Robert to swim.  The skiing instructors use similar explanation although they might tell Robert, “First we go on this trail, next on that one, then you will go home.”

The most important thing, however, is NOT to interpret this behavior as a sign that Robert doesn’t want swimming, skiing, field trips, or going to movies and parties. It is possible that when he goes to a new place or the old place he hasn’t visited for a while, he feels confused of how long he should stay there and what to expect.  So we kept going back with Robert.  We tell him what to expect in this place and what is expected of him.

That is why Robert went to two other SNL parties and three other ski lessons. He did better, then he did great.

It is not, that I believe that Robert has already learned not to call “Home, home”  in many new places, or the places he partially forgot and thus become confused and concerned.  He might call, “Home, home” again, but that is not the end of the world, and it shouldn’t be something that would prevent him for coming back.

Back to Writing a Journal, Page 17

January 12, 2017

One month has passed since my last post on this blog. We are still learning. We do a lot of ,so-called, “maintenance” by going over the same old topics that Robert encountered in the past. We review them through new worksheets or through the same ones we did years ago.  Meantime, Robert and I completed all the lessons from Saxon Math 4 and from Horizon Reading to Learn C-D Fast Track. I won’t claim that Robert mastered those curricula, but he grasped a lot and became familiar with the rest.

We started with Saxon Math 5, but after a few lessons and multiple exercises I decided to review fourth grade topics by using Singapore Math 4B.  US Edition which is a little simpler that the original one.  Many topics in Singapore Math are presented in a clear format allowing for better grasp pf concepts.  For instance rounding of decimals was introduced by drawing  appropriate number lines.  For instance to round 4.28 to the whole number Robert had in front of himself a segment with 4 and 5 at the end and 4.5 (or 4.50 ) in the middle.  Number 4.28 was clearly between 4 and 4.5 so the choice was easy to make.

To round the same number to the tenth decimal place, Robert could use a segment with 4.2 and 4.3 at the ends which he improved by adding zeros at the end and thus having 4.20 and 4.30.  He had already placed by the authors 4.25 in the middle and 4.28 on the right side of it, closer to 4.30.

That was exactly as we practiced before when Robert had to  round large whole numbers.  Except, it was Robert’s job to draw a line segment, write numbers at the ends and in the middle of a segment, and place the given number in the correct half.  This process was never easy.  For Robert the exercises which clearly placed all important number cues on the line segments seemed not just easy but also helpful in understanding better the concept behind rounding.

I am not sure, however, if the fact that we started with more difficult, but “hands on” approach  that forced Robert to do all the steps by himself was not beneficial to his learning even if it wasn’t completely understood.

We continue doing speech and language  exercises using worksheets from  Speech Improvement Reproducible Master and the  Fun Deck 4. They are easy because what is easy helps with fluency and reduces the stress Robert feels every time he has to speak.

While I was cleaning drawers I found old worksheets related to time telling and we did many exercises on finding elapsed time. That is a topic that is still difficult.  However, I also found many exercises that seemed to be easy enough for Robert to do on his own.  Some of them required doing math operations, some matching synonyms or antonyms.  Leaving Robert alone for 15-20 minutes to do that work independently was very gratifying.



Win Some, Lose Some

December 6, 2016

  1. We completed Horizon Reading to Learn program and Saxon Math 4 curriculum. We did that almost two weeks ago.  Of course, this is not exactly true.  Yes, we read all the stories, solved all the problems and answered all the questions.  BUT not even once Robert completed just one of the tests included in those two programs.  Moreover, I didn’t ask him to do so.  Although, he answered many questions correctly, he did that only when I was sitting next to him.  I knew that repeating each unit many times would not necessary lead to mastering the test.  So I had a dilemma.  Should I spent more time teaching many things over and over maybe even applying many other methods hoping to build strong foundations or go forward unit by unit and expose Robert to many concepts that might widen his horizons?  I use different approach.  I repeated first two parts of both curricula a few times, from beginning to end.  I am not sure if that was the right approach, but…
  2. With Daily Geography 3 I proceed differently.  I repeat the same unit three times  hoping that Robert would answer the questions independently without my presence.  It has been hard as I discover so many obstacles.  My very absence causes Robert to stop working all together.  He would sit and wait for my return. From the doorway, I try to encourage Robert to go on his own.  Instead, he answers aloud and observes my reaction.  For reasons I still don’t grasp, my reaction gives him cues about correctness of his answer.  I don’t want to allow that so instead I back off to another room only to notice lately that Robert didn’t write the answer but sad and lonely waits again for my return.  So I do return.  We again look at the map, we underline important words in questions.  Are we looking for name of the state or the river or the ocean?  Are we looking for direction?  We make separate banks of words naming states or lakes to choose from.  We draw arrows leading from one word in the question to another word.  For the question, “What interstate highway passes through Concord, NH?”, the arrows goes from the word ” Concord”  to the words “highway”.  “First we find Concord then we will see a highway”  I explain.  We go over four questions, then I leave again.  I see Robert writing answers on his own. Two are correct, one is partially correct, one is wrong. The problems Robert has with answering those seemingly easy questions allowed me to understand the nature of difficulties Robert has in dealing with words that rely on each other to make sense.
  3. Finally, Robert can do something much easier for him.  He doesn’t have to read anything, just add fractions.  finding common denominator, simplifying, changing improper fraction into mixed fraction are not a problem.  Robert follows an algorithm which directs him to do one operation after another.  Finally, I can leave him to solve all those problems on his own.

About Those Difficult Moments

November 14, 2016

They do happen. Those difficult moments do happen.  They do not happen too often, but they  happen much more frequently than the posts in this blog would admit.  I could blame Robert’s issues with irritating skin eczema or his never fully understood (despite colonoscopy and endoscopy) digestive problems.  I could state that the increased anxiety was brought by unanticipated changes in Robert’s  environment.  Changes that also include alterations in behaviors of people surrounding him.  Robert responds to such changes by becoming more rigid in his insistence that other follow those rules that they exhibited in the past.

Too often, Robert’s reactions take me by surprise.  I realized that I had stopped planning ahead of their arrival and thus I was  not prepared to respond properly when they happened.

Well, you cannot always be prepared.  Just yesterday, Robert and I bumped into each other as he suddenly turned after closing the linen closet door.  We didn’t hurt each other, but Robert was scared and very upset. You couldn’t plan for that.  There was nothing else to do but to assure him that we didn’t do it on purpose.  It was an accident.  It was scary, but nothing bad happened. We are OK.

However, I could plan better for his outing in a place he hasn’t visited in the last six months.  I knew, that Robert might want to come home before the end of the program, because he had to adjust again to a place that changed slightly during the time he was absent.   I could have given a warning to the staff. I could have stayed close by and returned to pick him up as soon as was needed to  reduce his separation anxiety.

There are also those situation when just good planning of everyday activities might reduce unwanted behaviors, including OCD .

I realized that lately I have been doing with Robert much less than in the past.  Less cooking together, less shopping together, less walking together.  So, it might be that the lack of the activities that would reveal to Robert their importance in a day-to-day survival resulted in Robert’s  brain placing more attention on maintaining the same order as a way of assuring his safety.  For instance, since I stopped cooking with Robert, he has considered  cooking to be of lesser importance than  a  meticulous way of placing  dirty laundry in a hamper.

I do think that all too often, we use the perceived intellectual disability of others as a way to reduce even further their chances for fruitful existence. Planning for NOT REDUCING such chances is one of the most difficult preparations needed to be done thoughtfully and adjusted every day.

Learning This Way and That Way

November 13, 2016

A few months ago –  and before that a years and a few months ago – Robert and I were learning about human body from the workbook “Human Body grade 3-4″ . We familiarized ourselves  with drawings of internal organs of different systems and with their names and their functions.  “Familiarized” is a good word.  Even though we read the texts, analyzed pictures,  and answered questions related to the provided information, I cannot say what, if anything, Robert learned.

I also don’t know how much Robert understands from reading texts about human body from Horizon Reading to Learn Fast Track C-D.  The texts in this book approach learning differently.  Robert observes what two characters Al and Angela learn while traveling through a human body.  The old man who is their guide explains everything to THEM.  Then THEY tell EACH OTHER and  the old man what they have learned.   The number of words to learn and remember is reduced to just a few, but the  simple mechanics are explained. There are no terms “motor neurons” or “sensory neurons” in the text. Instead, Al and Angela (and thus Robert too)  learn that the nerves that go from the hand (or foot) to the brain tell the brain what the hand (or foot) feels and the nerves that go from the brain to the hand (or foot) tell the hand (or the foot) how to move.

I am still not sure how much of that information Robert understands and/or retains. Although Robert  answers most of the questions correctly WHEN I AM SITTING NEXT TO HIM, I doubt if he would do the same when I leave the room.

Having one on one teacher during most of his learning time might have reduced Robert’s independence and his confidence.  When I am next to him, he tries to answer, when I leave, he stops altogether.  The words, he reads quickly and softly, lose their meanings. He reads mechanically. He stops thinking.

For now, I assume that despite all of that, Robert gained some sort of understanding of the mechanics involved in the way humans move, feel, hear, and see. What he doesn’t have is the ability to complete any quiz (involving understanding language) when separated from me even by a few steps.

That is why our teaching-learning time is spent on:

  1. learning new concepts
  2. thinking while separated from me

Searching for Roads

November 5, 2016

I am still looking for a way to help Robert to independently  solve the same kind of problems that he is capable of solving when I am sitting next to him.  I am baffled by the whole process.  First, I don’t grasp the reasons behind those different outcomes.

  1. Does the way I am emphasizing some words when I read the question give him some cues?
  2. Does he simply pay more attention when I am present?
  3. Does he stop believing in himself when I move away from the table?
  4. Do I somehow, without knowing it, direct him toward proper answer?

Sadly, I think that all of the above contribute to the fact that Robert answers questions properly when I am next to him and seems reluctant or unable to provide correct answers when he is alone.

As I spend more time working with Robert on the same pages three days in a row, I notice that his understanding of some of the words is very weak.  For instance,in the presence of the world map, Robert, when ask to do so, provides all the correct names of continents.  But he didn’t provide a name for the one and only continent presented on the map (North America) and wrote down names of the countries instead.  He had to be directed to the inset map of the world to come with the name of the continent.

When Robert reads the question on his own he doesn’t seem to grasp meaning of all important words.  He slides through the letters without understanding the question.  And thus when asked, “On which U.S. highway you can find Aberdeen?”  he is confused.  he looks at the map, finds Aberdeen and writes…… “Aberdeen” .  But when shown once that the proper answer is the name of the road, he doesn’t repeat the same mistake with other towns and correctly names roads that pass through them.  Helas, the following day, the same pattern of errors and correct answers repeats itself.

So, I do try different things to remedy that.

  1. We practice underlying (emphasizing) two or three important words in the question.
  2. We practice with two or three boxes of specific words to choose from (for instance, one lists continents, another  oceans and yet another countries).  When the question ask for a continent, Robert can choose one from the box which names them all.
  3. We answer together orally two to six questions and then I ask him to write down the answers  while I retreat to the kitchen.

It is still work in progress.  I don’t see much improvement, but then my observations might be tainted by my emotional investment in the process.  As for Robert, he reaches for math worksheets and solves the problems which do not involve words.


Reading My Mind

October 26, 2016

No, I don’t believe it.  I know that Robert is not reading my mind.  I know I don’t send him telepathically correct (or wrong ) answers.  I know that. Still,  there is something deeply unsettling in the way my thinking (?) determines the answers Robert is giving.  When I think about correct answer, Robert answers correctly ALL the time.  When I purposefully think about the wrong answer, Robert answers incorrectly more than 50% of the time.  Moreover, when he gives the right answer, there is this short, not longer than fraction of a second, moment when he hesitates as if he were shaking off the first incorrect ( I assume) response that came to his mind.

Even more concerning is the fact that my presence seem to influence Robert’s quality of thinking.  When I sit next to him (well, at the corner of the table), he rushes through answers without a mistake and without much hesitation.  When I go to the kitchen, leaving Robert with the same page of tasks, Robert hesitates, stops working, reads without noticing those two or three words that are the essence of the question and writes nothing or writes wrong answers.

For the last few days, we have been working on questions from third grade Daily Geography. They seem easy.   First, we talk about the map, then I underline important words in the question.  It might be one word.  For instance “continent” or there might be a few  words, “island, east of Mexico”  Then I ask and Robert answers, but I don’t let him write down his correct replies.  Finally, I ask Robert to read the questions and answer them, while I go to the kitchen.  But he either doesn’t answer, or he reads mechanically and answers incorrectly. For instance, instead of writing names of the three largest countries in North America, he writes names of three oceans surrounding the continent.  He seems lost and helpless.

We do the same pages, the next day and the following day.  I ask Robert to point to the important (defining) words in the question.  I hope he remembers from the previous days not the answer but this part of the question which is supposed to direct him toward the answer.  Sometimes he does, sometimes he doesn’t.

It is possible that too much of one to one work, too many hours of being thought that teachers or therapists are the sources of answers made Robert extremely sensitive to the slightest movements of cheeks, eyes, or mouth.  He reads those movements and provides responses. without them he is lost, as he still doesn’t rely on his knowledge.  It is also possible that he is so used to my presence that without me he feels lost and helpless.  I cannot understand that mechanism.  I know he should know.  I know he knows.  And yet,

Perceptive but Speechless

October 13, 2016

One of the problems that worry me the most is the fact that Robert understands and feels much more than he can express with his limited language.  The observations he makes do not translate into words but into actions.  Those actions are often misconstrued by those incapable of noticing the same things Robert sees.  When the valid reasons for Robert’s behaviors are not understood, everything Robert does is interpreted as a form of “severe behavioral issues” and dealt accordingly to that label. Not only  have I witnessed that many times but I wrote about this issue a few times. Still, all too often, I act with the same ignorance of Robert’s motivation I was guilty of before.

Stop and Shop Supermarket has a few self registers.  That is why we are shopping there.  Robert has a place to practice the basic cashier skills.  He was becoming more and more efficient and everything went smoothly until one day, couple months ago, there was a problem.

At first, everything went smoothly. Robert was doing a good job passing codes through the scanner and placing food on the belt.  I was packing and watching Robert at the same time.  Soon he had a problem.  The package of meat didn’t scan.  I came to help.  I took the package out of a thin plastic bag and passed it through the reader.  Since I also noticed that the number code on the eggplant was hardly visible, I removed the eggplant from its plastic bag and entered the code into the machine.  Then I put the package of meat and the eggplant in the plastic bags. As I moved toward the end of the belt to continue with packing, I was unpleasantly surprised when I saw Robert walking along the belt and trying to take the meat and the eggplant of their respective plastic bags.

“They have to be in plastic bags.  What are you doing? ”  I took the bags out of Robert’s hands and again put both items in.  Robert became upset.  He started making inarticulate noises and quickly pat his ears.  He tried to take the bags off again. I, with a very unpleasant voice, asked him to finish scanning.  Still demonstrating his distress, he went back to the cash register.  After he completed his task, I helped him use his ATM card to pay for grocery.  I was upset.  We have had many pleasant trips to Stop and Shop and Robert was doing so well at “being his own cashier”  and unexpectedly we had such a brawl.   Robert was pushing a shopping cart toward the exit and at the same time he tried to take out the thin plastic bags from the meat and the eggplant.  I didn’t want to create any more scene at the store, so I let him.

Well, he took off those thin bags and then put each of them on the other item.  Only then, I looked closely at those bags and realized that they were different.  The bag for eggplant had a light green, hardly visible print on it, while the bag for the meat was covered with equally unnoticeable red littering.  I hadn’t noticed that before, but Robert had.   He realized that I switched bags at the cash register as I tried to scan both items.  He tried to correct me all this time and grew more and more distressed not only by the impossibility of correcting my error but also by the fact that he couldn’t make me understand  what he tried to do.