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.






Saving the Day

October 11, 2016

On weekdays, Dad goes to work and Robert goes to Lifeworks.  On weekends and most of the holidays, Robert stays home and dad stays home.  Then there is the Columbus Day and nothing is as it should be.  Dad goes to work, but Robert stays home.

I tried to prepare Robert to accept such arrangement.  I told him ahead of time that he would stay home while dad would go to work.  Robert seemed to understand.  He repeated after me.  “On Monday, Dad goes to work.  I (Robert) stay home.” Three times.  He repeated that once on Saturday and twice on Sunday.  But on Columbus Day, Robert got up as soon as his dad did and tried to prevent his dad from leaving for work.  He didn’t want him to take shower.  He didn’t want him to take his lunch.  He didn’t want him to take his car keys.  Luckily the information, repeated over and over,  that Pam would take him to Applebee’s Restaurant lessened his resolve to stop dad from going to work.  So dad left and Robert without protesting began our daily session of learning while waiting for Pam to arrive.  Pam, however, called to reschedule her arrival for later time.  So I decided to take Robert to Roger William Zoo in Providence.  Robert agreed.  As soon as we entered the highway, the light on the dashboard informed me that there was something wrong with tires.  I decided to return home.  Robert was not very happy that the plans changed yet again, but after hearing from me that the dad would be coming home too, forgot about Zoo.   After all, that was the return to what it was supposed to be in the first place.  Robert home and dad home.

Except dad wasn’t home when we arrived.  He would not be home for another two hours.  I told that to Robert.  I told him that dad would be home at 2:15PM.  I told him that dad had to walk to the station, take train, and then switch to his car .  Robert should have understand.  Maybe he did understand, but he didn’t accept the delay.  For the next hour, he followed me all over the house repeating thousands of time, “Dad, dad, dad, dad, dad, dad (…).  My efforts to expand his utterances to the whole sentences were only partially successful. Yes, Robert repeated, “Dad takes train.  Dad drives a car.  It takes time. ”  but as soon as he finished, he returned to his never ending callings, “dad, dad, dad, dad (…).  I did feel drained.  And thus I used the most primitive form of extinction WITHOUT redirection.  So I pretended not to hear Robert and not to see Robert.  He was louder, he was wagging his finger closer and closer to my face and then he gave up.  He took IPAD and went to his bed.

Not much later, Robert’s dad came.  Robert noticed.  Everything returned to normal. Robert ate early dinner and dad ate early dinner.  Then, while dad went to continue his work on a computer, Robert fell asleep.  Only then I realized how exhausting this day had to be for Robert too. With difficulties and the best intention he kept accepting changes to the well known routine only to find out that something was wrong anyway and neither he nor I could fix it.  I let him sleep.  I probably dozed off myself.  I was exasperated and exhausted as well.  I didn’t do any of the things I planned to do for myself and I didn’t any of the things I planned to do for Robert.  I was devoid of will and energy to do anything else that day.  But I knew that if we didn’t do anything else we would all feel defeated.  So we decided to go to Roger William Zoo for evening display of Halloween Spectacular.  we knew it might be very crowded.  We might wait in line before entering.  It might be cold.  Robert might not like it.  We knew that, but we had to do something to save at least part of the day. So we drove there.

There were many people, but no waiting inline.  It was a cool evening but we didn’t get cold. Robert once said, “Home, home” but simply to let us know that this is where we should go AFTER the walk through the path decorated with thousand pumpkins.  Carved or painted, huge and small, real or plastic, hanging high or placed low they all had small lights inside.

How to Say No

October 6, 2016

I knew we should have studied before Robert went for his swimming instruction.  But we didn’t.  I got a call from a distressed close friend and talked for over an hour.  There was no time for learning before the swimming lesson.  There was no much time after the lesson either.  Robert returned after 7PM , ate his dinner, and wanted to study.  “Work, work”, he said and that meant learning.  I asked him to take a shower first. During his time in the bathroom I planned to reduce the number of worksheets to two or three.  And that is what I did.  I would rather avoid any teaching that evening, but I knew that with Robert’s OCD it was not possible.  So aiming at only completing two or three easy worksheets seemed like a fair solution.  There was one page from Saxon Math.  With the exception of one problem (finding the measure of the third angle in the triangle) all other problems Robert could solve easily and quickly.  Then we had two pages from Fun Deck &More.  Oral exercises in answering “yes” and “no” questions and “what” questions.  Although in the past, Robert not once demonstrated confusion with “yes” and “no” answers,  recently he seemed on a good track so  exercises should not take much time.

And they didn’t.  But Robert was not satisfied with this amount of learning. He knew that something was missing and soon he found three pages from Social Studies grade 3. It was the  chapter Communities Have Rules. So we went through that as well.  It was 10 PM and I was tired.  Very tired.  But Robert was not giving up yet.  He knew that we didn’t read the following chapter from Horizon Reading to Learn.  He searched for the pages with questions to the lesson 123.  “Read, read, read” he said as he was pulling them from the pile I had hidden them.

I tried to say”no”.  I was tired. It was very late.  But I couldn’t.  I knew I would have to be very strong to refuse such demand.  I knew it would take at least 20 -30 minutes to convince Robert that it was too late for such an endeavor.  I knew that not reading  would leave Robert  anxious.  Too anxious to sleep.  Besides, there was something in the expression on Robert’s face that melted my resolve in a second.  He really wanted to read.

And so we did.

Snapshots of a Very Good Day

  1. October 3, 2016

It is 7:30 AM and Robert has already taken a few steps down the stairs on the way to the van.  Before he leaves, however, he wants to make sure that dad takes the shower.  “Shower, shower, shower”, he says. His loud words sound more like a command than gentle reminder.  It is Robert’s way to ascertain his role as a family member  with all the  rights we, the parents, have.  We tell him what and when to do things, he tells us too.

It is 3:45 PM. Robert has just came home.  He notices four poblanos on one plate and one on the other, but ignores them for now.  Instead, he runs through all the rooms of the house, including bathrooms and checks if everything remains where it is, according to Robert, supposed to be.   Today, he has a lot of corrections to do, as I washed the bathrooms and thus put some items in wrong places. Then he shows me his notebook, “Read, read, read.” When I finish reading, he places it, as usual, in the drawer under coffeemaker and only then he turns his attention to the poblanos.

It is 4:15 PM.  Robert has just finished eating his four poblanos and a half of the fifth, which, as usual, he has shared with his dad.  Since Robert has a habit of eating each poblano on a separate plate, using a different fork for each pepper, the table is covered six plates.  One large and five medium size. Robert gathers dishes, placing each plate and a fork on the other plate and a fork.  He seems a little apprehensive when I remove forks from the plates and put them all on the top plate.  But he doesn’t protest.

It is 5:00 PM.  As I drop  washed clothes on the bed, Robert shuts off  his IPAD and begins to put laundry away.  He doesn’t pile similar items together but deals with each article of clothing separately.  Carrying one item at a time he runs to all the  closets and drawers in every bedroom.  It will take him more than an hour to put everything away. I don’t mind.  I sit on a bed, relax, and watch Rosemary and Thyme on Netflix.

It is 7:30 PM. We have just finished reading the story about Wendy and Sidney trip to Jupiter. Well, not to Jupiter exactly but to its  moon, Io. With my assistance, Robert has answered two sets of questions.  Feeling a little drained I say, “Let’s take a break”.  Robert grabs four pages from the third grate Social Science workbook and says, “Work, work, work”.  So we keep working.

It is 9:00 PM.  I am sitting in front of TV.  Robert, who has just finished his bath, handles me my nightgown.  “Mama shower” he says.

Oh well.





Sounds of the Aching Soul

October 2, 2016

I had learned that Robert had a difficult time in his Day Program, long before he came home.  His case manager sent me an e-mail early in the morning. Although, Robert calmed down later and was able to participate in other activities, with the help of his instructors, I knew that he would arrive home confused, embarrassed, and anxious.  He usually needs at least 24 hours to recover from the psychological consequences of the behaviors he was not able to control. I don’t know how he remembers the episodes of his heightened anxiety.  I suspect that they are as foreign and strange to him as they are to the witnesses.   I suspect that some of them present themselves to him  like shocks or even seizures.  I suspect everything.  I know nothing.

All afternoon, Robert was making noises.  For the first few hours he kept producing never-ending cooing sounds.  They were painfully sad as if they were weaved from the strings of loneliness, estrangement, and melancholy.  They were soft but piercing.

“Are you singing?” I asked as I followed Robert.  He wandered from room to room carrying his sad music everywhere with him.  “Are you singing? ”  I kept asking.  Robert didn’t stop and didn’t answer.  Although my question was stupid, it was, nonetheless, a form of a well-meaning effort to break Robert’s alienation.  I felt that he was moving farther and farther from me. With my clumsy question I attempted to reestablish connection I felt I was loosing.

I was glad when Robert replaced the cooing sounds by the sounds of irritation and anger.    It was a step toward our mutual world.  The sounds of anger were loud and directed at something and someone (me).  I didn’t like those sounds, but I understood them.   I didn’t agree with the message but I understood it.

Of course, I still didn’t know the exact reasons for his low tolerance level and the explosion  of trumpeting irritation. Did his stomach hurt?

Did his soul ache?