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.

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.

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.

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.

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?

September 28, 2016

A few weeks ago, we went to the Saturday  Farmers Market in Boston.  Robert was not happy and he let us know that happy he wasn’t.  He made loud noises. He kept pulling his father in any direction that would take him out of the crowd, beyond vegetable stalls, boxes of strawberries, and  bags of onions. To demonstrate his distress he patted his ears in quick short movements.  One might say, that his behavior was a typical reaction of a person with autism to an overstimulation by, among others,   seemingly aimless swarm of people, noise, and  crowded sidewalks. One might also ask, how could  we, the parents, subject our son to such environment.  Shouldn’t we know better?

Well, we did and we did not.

Years ago, we visited Farmers Market with both of our children quite a few times.  They were not very pleased then either, but somehow they both were able to contain their displeasure to either  a few well articulated words (Amanda) or to a few vague gestures (Robert). We didn’t expect anything worse than that.  If anything we expected better behavior.  After all, Robert grew up and learned a few things in the time that passed.  So, the strong and loud negative reaction to the place startled us.  We knew, we shouldn’t  surrender to Robert’s will, but we didn’t want him to continue expressing his wishes in such inappropriate ways either.  So after we bought a few dollars worth of fruit and vegetables – less than half of what we had previously intended – we decided to leave.  For reasons I still don’t understand, Robert accepted all of our shopping with the exception of a small box of blueberries.  He took them out of the bag and tried to return them to the stall.   Well, we sort of argued.  We used words.  Robert used  gestures and grunting noises. But reluctantly he gave up.  He walked with us toward parked car still expressing his displeasure, but he calmed down in the car.

One might suggest that I should learn my lesson and never take Robert to such overstimulating places.

I did learn my lesson and that is why last Saturday, we took Robert to Farmers Market again.  But:

1.  We told him before leaving home that after walk around Pleasure Bay, we would go to Farmers Market.  We repeated that a few times on the way to Boston and mentioned that during the walk.
2. We told him what we needed to buy. Blueberries! Every day Robert takes a small container of blueberries to his Day Program.  I reminded him that we don’t have blueberries at home.  I said we would buy a few more vegetables and fruit.

This Saturday, it was still noisy,crowded, and chaotic, but Robert was fine. No pulling, no protesting, no screaming and no patting his ears.  The matter of fact, as soon as he recognize the place, he smiled. We bought blueberries and eggplant for Robert, grapes and strawberries for dad, cilantro, scallion, and radishes for me.

September 20, 2016

Two days ago, Robert and I started a new section of Horizon Reading to Learn. We are ready to leave the Earth for other planets in the Solar system.  We are also ready to jump into the future.  The year 2230 to be precise.  After traveling all over the Earth with Herman the Fly, after many  trips into the past and the future with Eric and Tom, after following Toby the Kangaroo from Australia to Canada and back, after learning from Linda and her sister Kathy how to survive on the desert island, after escaping with Carla ans Edna from make-believe island plagued by dinosaurs, earthquake and erupting volcano it was only natural that the next 10+ stories would take us into the future and other planets in our solar system.

We are still in the phase of getting ready. The first step for Wendy is to be accepted.  Thus, we witness Wendy taking the exam that might qualify her for the special trip. We feel her anxiety, we soar with her through some of the questions, and we learn  a few new facts from her answers. To make reading of the next section easier, we too prepare ourselves by recalling the name of the planets.  To the concepts of “past” and “future” we have just added the most elusive one, “present”.  (Before today, we used simpler term, but equally  evasive, “now”. )

I had the impression that Robert felt pretty good when he read   those questions on Wendy’s test to which he also knew the answers. Maybe this writer’s trick allowed Robert to compare his knowledge with the character in the story.  Maybe Robert realized that he knows almost as much as does Wendy.  So he too might qualify for the trip.

September 16, 2016

Robert and I continue to study almost every day but I write about teaching Robert much less than I did previously.  I have  doubts about practical aspects of the  knowledge Robert is gaining. I have always had them. But as Robert is getting older  those doubts  multiply and diminish my belief that knowledge and understanding improve quality of life even when they do not translate into practical tools.  Although I can still teach Robert,  it is much harder to write about tangible effects of our daily sessions as they seem not to address severe deficits impeding Robert’s life.

Should we spend time on Roman Numerals when Robert still doesn’t know how to set a correct water temperature for his bath or his shower?  Should we keep increasing his vocabulary to the fourth  grade level when Robert’s ability to communicate is that of 4 years old child?

Just yesterday, I found some validation for our hours of learning and teaching.  For the last two weeks, Robert and I spent an hour or more a day reading texts from Horizon Reading to Learn about a boy who, with the encouragement and support from his grandmother, invented a light saver.  I was very tempted to skip the 10 or so rather difficult texts dealing with ” electric eyes, beams, counters, patents, patent attorneys, manufacturers, legal agreements and so on.  I though that even explanation of how electric eye work and what happens when the beam is blocked were abstract enough to validate the decision to skip those texts.   Still, I went on. Well, we went on. We found out that one electric eye would not do the trick when two people get into the room as the blocked beam would turn the life off.  We found out that it is important for the device to recognize if the people come in or out of the room.  We learned that the contraption has to count how many people entered and left the room to avoid leaving some of the people in the darkness. For a few days, Robert was reading the story and analyzing the drawings of the electric eyes and beams stretching across the doorway counting how many people entered and how many people exited the room. He used that information to decide if the lights in the room were on or off.

Although I was skeptical about the value of those difficult texts, Robert insisted on reading.  So we read.

It was this morning, however, when our decision to continue reading and learning was vindicated.  I asked Robert to turn off TV.  He couldn’t.  His fingers obstructed the beam going from the remote to the TV set.  Many times before I had tried to change the position of his fingers, but it had never worked.  Today, however, I showed Robert “the electric eye”  in the remote and a little “eye” below the TV screen.  I explained as well as Grandmother Esther would explain it to Leonard that he should aim the remote at the target on the TV set and keep his fingers from covering the “electric eye” in the front of remote.  Robert got it!!!   With some difficulties, he repositioned his fingers and turned the TV off.

September 8, 2016

I don’t know when this behavior appeared for the first time.  Did it develop step by step or did the idea come to Robert suddenly in its complete form.

I know that it started with Robert hanging and folding laundry.  He learned years ago how to do it and where everything belonged. That was great!.  He also learned, at some point, to separate most of the white clothes from the dark ones.  I said, “MOST”, because for reasons Robert doesn’t explain, he always puts one or two pairs of his dad’s black socks with the white load.  Oh well!

A couple of months ago, I realized that Robert uses a special pattern to put DIRTY clothes in the hamper. He is not able to just drop them in and let them be crumpled and mixed up with other dirty clothes.  All pieces of his and everybody’s else garments have to be stretched one on top of the other in the same order they were worn (or taken off) by  members of our family.  Robert places socks on the bottom, then go his pants followed by his underwear, his shirt and, if it is colder season, by his white undershirt.  Robert’s pyjama and socks also follow a similar pattern.  When other members of our family drop their clothes in the hamper, Robert is immediately arranging them according to the rules only he knows.  That sometimes requires emptying the whole hamper and meticulous reorganizing.

Unfortunately, this behavior also controls the activity of placing the clothes in the washing machine, in the dryer, and moving the clean clothes back into the hamper.

Although Robert separates white clothes from the dark ones (except, that is, his dad’s socks) he still maintains a proper sequence with white and a proper sequence with dark. I haven’t decipher the general rule governing that activity but I know that all too often Robert searches carefully for the proper item to go next to the laundry machine. That, of course,  extends the time of the laundry ten fold and makes process of washing clothe extremely complex.

Very often, I do the laundry when Robert is not at home.  It is much simpler and quicker.  I refrain, however, from placing Robert’s clothes in the drawers as he never accepts my haphazard approach to his shirts or his underwear.  Yes, there are separate drawers for his underwear, pyjamas, pants (he doesn’t want to hang them), and his shirts. Still, only Robert know which shirt should be at the bottom of a pile and which one on top. So he  Robert takes them out and corrects my errors.

I have tried many times  to  persuade Robert that it doesn’t matter which way you drop dirty garment into the hamper or in which order the clothes enter the washing machine. They would get mixed up any way. But I do it in vain because when Robert discovered that order is important in some situations, he decided that order is important ALWAYS.

September 6, 2016

We drove to New York, Philadelphia and Washington D.C. we spent four nights out of the house.  Huge improvement comparing to the two night long trip to New Hampshire in July. During the second evening of that excursion, Robert kept repeating, “Home, home, home.”  We were too tired to drive, so we stayed despite Robert insistence on return.  Around 11 PM, Robert finally fell asleep with words “Home, home, home.”  on his lips. His persistence drained our energy so the following morning instead of going to Lincoln Woods, as we had planned, we aimed for home.

Nothing similar happen during our Washington trip.  Robert was mostly happy in Smithsonian Museum of Natural History, in the Flight and Space Museum.  He liked (with the exception of a few minutes long confusion) our evening walks toward White House or around Washington Memorial.  He seemed as flexible as he used to be during our longer trips to, from, and across California.

Most importantly, he didn’t mind that we separated.  He went with his dad to the Flight and Space Museum while Amanda and I visited National Gallery.  The trick was to just tell him ahead of time of that plan. Then he didn’t mind separating.  This leads me to the conclusion that when we don’t explain him what is going to happen, Robert might consider any separation to be an equivalent of loosing members of his family (or his group)  and thus reacts with increased anxiety.

Just the previous day, we didn’t do that.  Amanda and I decided to take a different path to the hotel so we could stop at CVS on the way. We mentioned that to Robert but in a way that he couldn’t really process. It was the last-minute decision made hastily in the middle of the path. Moreover, we hesitated.  Our hesitation became a clear indication that something was wrong.  So he took his dad’s hand and continued on 16th Street while Amanda and I already aimed for 15th.   Then he stopped and screamed again noticing that Amanda and I don’t follow them.  On one hand, he   felt the compulsion to follow the same path we took on the way to White House just backwards, on the other, he wanted  us to stay together. Dilemma. Robert hates dilemmas.  He hates being confused as the confusion is the indication that something is definitely wrong with the world. Robert didn’t know  didn’t know He took a few steps one way and a few steps the other way.  He stopped.  He screamed some more.  He pulled his dad along 16th Street only to stop again and turn back to join Amanda and me.

As soon, however, as he made that decision, his anxiety evaporated and calmly if not happily he walked with us all the way  to the hotel.