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?