Vicious Circle

October 9, 2017

It happens over and over.  Robert grows and learns.  But neither his increased understanding nor acquired knowledge  prevents him from falling in one of the similarly set traps .

The design is almost identical.  Robert enters a new program.  His teachers or program coordinators shower him with attention. Then a few weeks, a few months, or a couple of years later the attention is withdrawn. The structure of the program changes, the teachers change, his peers change.  Robert reacts with increased anxiety to the environment that left him in the cold.   The anxiety leads to more behavioral outbursts and that to even stronger rejections.  Those rejections however, are often presented as ways of dealing with his behavior not as emotional distance.  He feels farther and farther from everybody.  He feels something is different.  But he is unable to clearly grasp the factors of changing dynamics. He becomes even more anxious. Small things, f cause him to scream.  He grows frustrated, and even more anxious. He has to leave the program.

It has never been the case that the Robert’s teachers were able to stop this wheel from leading to the ravine.

Robert was 3 years old.  He was accepted with open arms in a preschool program.  For 3 weeks the main teacher showered him with attention.  After three weeks another boy entered the program, and the teacher directed her efforts to accommodate this new student.  Trying to regain his position, Robert followed the teacher everywhere, sometimes (I was told) dropping on the floor just in front of her. Of course, she was irritated.  After all, he precluded her from fulfilling her obligations toward other students.

The shameful thing is that nobody, including me, was at least concern with what that did to Robert. What he felt.

When Robert was 12 years old he entered a collaborative program.  Again, he was welcomed with open arms. There were only 4 students in the program and a teacher and three teachers aides. They needed more students for a very survival of the class. It seemed to go well. But the following year, three new students arrived and three of the experienced aides left. The classroom was placed in a new town.  Everything changed.  Most of all the atmosphere changed.  The previous year as I was walking toward the school, the aides always approached us.  They asked Robert to walk with them, so I could leave.  The following year, the aides never, not even once, approached us as we walked toward the school.  They scurried away, as if afraid that we could approach them and walk those 30 yards together.

I knew then, that there was something very wrong. Robert knew that as well.  He was much more anxious.  His OCD forced him to go every day to school, but as he was approaching the building his steps got heavier and slower.

When Robert was 14 years old, he entered public school program.  No, at first, he was not welcomed there by administrators, but he was welcomed by his aide, Mrs. Scott. Her attitude toward Robert was contagious and   soon he was sincerely accepted .  Then three years later a new teacher came.  Everything changed for Robert with that one person. Her aggression toward Robert’s aide, Mrs. Scott, was not lost on Robert.  He felt it, he felt changing atmosphere in the whole class.  He reacted with confusion, then anxiety. Then came screams, then more insecurity and confusion.  I kept being called to school over and over.  I felt Robert was falling apart.  I took him out.

In 2014, Robert entered an adult program with vocational component. He slowly kept adjusting.  He loved it.  But the good politicians who want to replace good with better, specially if the better is cheaper, ordered all sheltered workshop to cease.  So every day, something was changing in Robert’s program.  His most capable peers kept disappearing as they were introduced to jobs in the community.  The furniture kept disappearing, the work was gone.  As the one of he most difficult to be placed, he was left in the sheltered workshop longest.  He reacted with anxiety.  He was anxious during any outside trip, afraid that during his absence, other changes would happen. The ground was moving from under his feet.  The people were changing also.  The one who paid the most attention to him at the beginning were gone. They found better paid jobs.  Others got different assignments. He wasn’t sure to whom to turn for directions and well, for comfort.

He still doesn’t know.

Here we are now.  We are both older and both drifting without directions. We are both anxious and we both worry. 

 

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Quest for Missing Socks

October 2nd, 2017

Last night, as Robert and I were folding and hanging clean clothes, I noticed that one sock didn’t have its match. I knew that if Robert realized that, he would search for the missing sock as long as necessary. With the passing hours he would become more and more agitated.  He would rummage through all the hampers with dirty clothes and all the drawers with clean ones. He would demand our support in a few, but very loud words.  I didn’t want that to happen at 10 PM so I hid the sock under the pillow. Since all other socks had their companions, we all were spared the anxiety related to the possibly futile search for the evasive article of clothing.

This morning, however, Robert realized that one pair of socks was missing.  Moreover, it was exactly that pair that he planned to wear today with the pants and the shirt he had already chose. There were more than 30 pairs of socks Robert could choose from, but he wanted just the one that was missing.  He looked and looked, picking up pair after pair.  He took out the whole drawer.  He checked the drawer below.  He emptied all three compartments of the hamper with dirty laundry.  He moved the comforter and the pillow and he found it.  He found one sock I had hidden the previous night.  Encouraged by his discovery, he renew his hunt.  it was getting late so I had to cancel the van which takes him to his morning program.  Still, I decided not to help Robert.  I wanted him to have another experience that would tell him, that lives go even if it is not perfect.

I pretended to be oblivious to his exploration.  Finally, Robert relented and put on another pair of socks.  Then he showed me the sock he found, “Sock, sock”, he said.

“The sock is missing”, I confirmed.  “I will look for it when you are in your program. ”  Robert was fine with that. I drove him to his program.  As he was leaving the car, he reminded me, “sock, sock”.

“Yes, I will look for it”  I assured him.

And that is what I will do now.

Creating the Rules and Breaking Them

October 1st, 2017

As I said many times, Robert never explains himself.  He doesn’t tell us, for instance,  what rules govern his world.  Nonetheless, those rules exist and they are firmly established. We usually become aware of them only when we try to break them, unaware  they existed.  In those instances, we have to  confront powerful resistance from Robert who tries to maintain the established pattern with all his might. In those moments we also gain the understanding of how our own actions allowed Robert to intertwine another artificial rule into his  system of rigid convictions.

The rule we discovered this afternoon stated, that in our house only Robert has a right to eat eggplant and only when it is prepared with cheese and tomato sauce. I became aware of that imperative when I attempted to grill one of two eggplants for dinner.  Robert grabbed it from me and put back in the refrigerator.  I tried to get another one.  The same thing happened.  “Potato, potato” he kept saying letting me know that I had other options.  He tried to give me zucchini, a bag of mushrooms, and red pepper. Just not the eggplant. He defended the eggplant with his whole body letting us know that we had a problem.

I really didn’t need that eggplant for dinner.  There were other vegetables on the grill already.  What I needed, however, was for Robert to understand that he was not the only one allowed to eat  aubergine and that it could be prepared differently. Unfortunately, no amount of words would convince Robert of that possibility. Only fait accompli could force Robert to accept that fact. So we did play a trick on Robert.  Jan grabbed the box with three bottles of coke and ran with it. . Since having an  access to one 11 ounce bottle of coke was more important than eggplant, Robert followed Jan  leaving the fridge defenseless.  I picked the eggplant and before Robert returned with coke, I managed to peel, slice, and season it with soy sauce and sesame oil. Robert didn’t  mind.He looked calmly, turned over and left.

I couldn’t blame Robert for his strong conviction about eggplant. Years ago, he was extremely picky eater and when he began eating eggplants which I prepared for all of us, I was extremely happy.  So happy in fact, that once a week I prepared eggplant just for him.  During the years that followed, he became certain that he has exclusive right to eggplants and he tried to defend that right with all his might.

We, the parents already noticed that from the  actions we repeat from time to time,  Robert deduces pattern and  wants  us to maintain it forever. Usually, we find a way to deal with particular beliefs one at a time.  We didn’t however find a way to make Robert understand the general concept of changing the rules and expanding his world with a mental tool of flexibility.

Orchards and Rules of Happiness

September 20, 2017

I didn’t know why Robert screamed as we approached rows of Ginger Gold trees.  The orchard seemed to breathe calm contentment with just a slight touch of nostalgia. There were people, but not too many. They were separated from us by row upon row of branches overburdened by cornucopia of ripe apples.   It was a beautiful day.  But Robert screamed.  Not constantly but frequently and without a reason we could understand.  Moreover, he kept slapping? patting? stroking? his cheeks in quick, small movements of his palms in clear sign of distress.  It was a beautiful day, but my heart sunk.

I didn’t expect that. Orchards were places where Robert seemed to be in harmony with the rest of his family and his surroundings. The old pictures in family albums attest to that. So why was he screaming? Was he not feeling well?  Did he miss his sister which just four days before went back to France?  Did he want to do something else? Robert doesn’t explain himself but without explanation his behavior is immediately placed in the rigid context of his diagnosis and read as “regression”.

I am not sure what I felt.  I was scared, confused, and hurt.  But we continue picking apples.  Jan and I were able to engage Robert in gathering fruit even though his screams continued. After our bags were full, it would be a good time to leave, but then we needed blueberries too.  So we went for blueberries.  They were not easy to gather, as the ripe ones were interspersed with green ones, not ready for picking.  But Robert’s screams ceased.  Just like that.  I don’t know why.  He continued taking ripe blueberries from little twigs, leaving the green blueberries untouched.

I wasn’t ready to celebrate yet,  but a ray of cautious hope was not lost on me and we dared to walk to another part of the orchard and relieve some of the branches of the  ripe peaches and almost ripe nectarines. We rode on a straw filled wagon back to the blueberry field and managed to pick a pint of raspberries too.  We ended our orchard excursion by buying apple cider donuts and, Robert’s favorite, honey sticks. As we returned to our car, we all seemed to feel the calm happiness that emanated from the orchard.

Two weeks later, we went to the same orchard again. We went, because Robert wanted to.  We gave him a choice, “Movie or apple picking?”   He chose apples.

 

 

Anger, Gratitude, and Confusion

September 13, 2017

I can write when I feel anger.  I can write when I feel gratitude. I cannot write when I feel confused.

Anger and gratitude are strong motivators. Anger forces me to confront something or somebody. Gratitude pulls me forward to follow someone else steps. But confusion mixes  my feelings and my words. I am left confused on a sticky web without directions and without energy.  I don’t even feel helpless.  I don’t know what I feel.

Over the years I was angry at some of the people for their neglect of my son and I was grateful to other for their thoughtful efforts to help Robert.  But on Labor Day Monday, as three of us were riding home from New York City, I was bewildered and lost.  That day we were planning a lunch with my husband’s relatives, but Robert kept screaming since 7 AM.  I didn’t know if he was in pain or “just” furious about something. As, I said over and over, Robert cannot explain himself. He screams leaving to us the interpretation of the noises he produces.  It might be a physical discomfort.  But what exactly?  He might be angry that we didn’t accommodate his wishes.  But what wishes?  And it might be that he is confused. What Robert hates more than anything else is to be confused.  He hates when he gets contradictory messages.  He hates when he doesn’t grasp why he is in a particular place, what is expected of him, how long he has to stay, or what would be the next step.

Robert almost continuous screaming put a dent in my brain.  I couldn’t stop the screaming.  No extinction and  no redirection which so well worked in the past.  I didn’t have any techniques to apply in this place, that day, and in the circumstances we were in.  I only wanted to leave.  I knew the car would calm Robert.  That is the only thing I knew.  So I woke up Robert’s father,canceled our lunch with relatives,  packed and a half hour later we were on our way to Massachusetts.  Robert calmed down considerably.Now, he just wanted to stop at the McDonald in one of the service area.  He was clear about what he wanted and he made it clear to us.

But I remained confused.  It was the first time when I surrendered to Robert’s behaviors. There were many difficult behaviors I  confronted before.  I don’t think I have ever given up.  I always tried to  manipulate the words and the situation in such a way that I wouldn’t feel that I lost the battle.

I remember that when I couldn’t stop 4 years old Robert from shutting repetitively door when I had sever headache, I made his access to the door contingent upon his efforts to say the word, “open”. (or rather its approximation)   When Robert had a terrible tantrum in a supermarket because I didn’t let him buy ALL the jars of bubble soap, I carried him outside to the car, buckled him, took a few minutes to pull myself together, drove home and immediately devised a plan to make sure that this won’t happened again. The plan included two trips to the stores made the SAME day.   Robert was allowed to buy three bottles but when he took the fourth, he  returned home with nothing.  And it worked.  We haven’t had tantrums in store in the next 20 years.

I  could always rescue something from almost any situation.  But not this time.  I was confused and resigned. After so many successful trips to New York, the last three have been very difficult. I didn’t know why and I certainly didn’t know what to do.  What did I miss?  What did I do wrong? What  could I salvage?  And how?

 

Worries and More Worries

August 13, 2017

I thought I would rest for a couple of days while my husband and my daughter traveled with Robert to New York City.  But I became anxious yesterday evening when I learned that after 5 hours long trip, my family still decided to drive for hour and a half  to Staten Island to meet with relatives in the restaurant. I suspected,  it would be too much for Robert.  Long trip along interstate 95, stop at the Tapas restaurant Robert, unlike his father,  really doesn’t like, coming to grandma apartment and then drive to Staten Island and meeting with people he didn’t expect, that is a lot for him.

I became very worried this morning when I called New York and heard loud screaming noises clearly indicating that Robert was mad.  He was mad because Amanda didn’t want to finish her food. The reason he wanted her to finish was that he believed that if she did then they would all go home.  He was mad because in other room of the apartment was his cousin instead of his grandmother. He was mad because it was already noon and they were still in the apartment instead of somewhere else.  Possibly,  on the way home.  From his perspective everything was not as it was supposed to be. He was mad because nobody discussed anything with him and prepared him for the sequence of events.  He was mad, because nobody understood the message in his frustration despite the fact that it was expressed with the loudest possible sounds and the most dramatic pitch.

I was far away.  I couldn’t help.  I only worried about what that all meant.

Robert cannot handle too many changes to his routine.  He never acquired tools to help him deal with that.  I should have taught him more about rules and how they need to be adjusted to the changing environment. But this is something I couldn’t do without help of others.

Robert still doesn’t have tools to communicate his wishes with appropriate signals. And nobody expects him to communicate with words, so nobody takes seriously his preferences.

The people around him, even the closest ones,  don’t understand him and don’t even try to adjust their decisions to what Robert wants.

I realized that Robert wouldn’t  have really anybody he could rely on to give him some clear directions,  when I am not there. Nothing I have done has been working for Robert to make his life easier, smoother, more pleasant in the future or even now, when I am not around.

Moreover, as I deal with so many new, difficult behaviors, I also notice dwindling number of people able to treat him like a human being, empathize with him, and lead him.

I am getting older and weaker.  I don’t have much time to address those new behaviors and arm Robert in tools enabling him to regulate his behaviors to fit changing circumstances.

So I have to start now.

 

Slow and Steady…

July 13, 2017

It is summer, but we keep on learning. Usually from 7PM till 8 PM we spent time learning new things, reviewing past information, and practicing skills Robert has never mastered.  That means speech.  But we take it easy.  Gaining confidence is the main goal of our evening sessions.

  1.  Among old Robert’s books I found A First Atlas by Scholastic Inc.  I bought it yeast ago, when both my children were very young and…. never used it.  It was too simple for my daughter and it seemed too complicated for Robert.  So I put it away.  Now, it seems like easy summer reading for Robert.  However, we are not reading one section each day, to memorize new facts.  That would not be possible without repetitions and additional practice.  We treat each section like a set of postcards sent from different continents. Many photographs help to understand short paragraphs.  The simplified maps, showing mainly landforms, allow to make connections to the places pictured in photographs. I don’t ask any questions during or after the reading although I sometimes comment on what we see.  This is my way of emphasizing some facts and making more probable that Robert notices the same things I do.
  2. Robert has just finished the workbook Cursive Success by Handwriting Without Tears. Most of the tasks he completed by himself.  Usually, he did them  after we had finished working together. The process of rewriting printed texts in cursive, seemed to calm Robert and make him feel independent.
  3. Everyday, we started and finished our learning with practicing speech using Autism and PDD Things I Can Say and Do. Robert kept memorizing some sentences.  A few of them we changed into ones more appropriate for him.  First, he read each sentence and then repeated it while looking at me.  Then he read three sentences and repeated them while they were hidden under my hand.  I pointed to the place where the phrase was written, and Robert looking at me stated it.  We did that two or three times each day.  It got easier.  Robert liked most those phrases we added to the text as they related to his experiences.  For instance, for Things I Can Say at the Beach he remembered best, “Let’s walk along the beach”, “Let’s play with waves”, and “Look at the seagull”.
  4. Each day, Robert completed,with different degrees of independence, one test from Math U See Epsilon section ( operation on fractions).  He was mostly independent and proud of himself while adding, subtracting, multiplying, and dividing fractions. Although as the problems became more complicated (for instance multiplying three mixed numbers or subtracting two mixed numbers which required both regrouping and finding common denominator), he insisted that I remain seated next to him.  Whenever, I tried to get up, he put his hand on my arm and demanded, “Sit, sit, sit” . I also helped sometimes (not always)  with word problems.  He did very well with mental operations.  He was very pleased with himself when he completed independently most of the calculations by himself.  It was a joy to see his face.
  5. After Robert finished reading selected chapters of The Odyssey that were included in Reading Mastery VI, we read The Odyssey  for children published by Usborne. That endeavor was both easier and more complex.  The fact that there were many pictures did help.  The texts were shorter, but the vocabulary was more challenging.  I could help by developing similar worksheets as those included in Reading Mastery, but I didn’t want to.  I just wanted to read and explain some words during reading.  Again, no asking questions to check Robert’s comprehension  although, I stopped a few times in each chapter to comment on the presented events or pictures.  I also expressed “surprise” about different adventures described in the book or I reminded Robert that there were some elements missing.

We are moving slowly, but we are moving forward. I see progress.  Maybe a little wobbly, maybe slow, but progress. I love noticing how much Robert has learned so far.  But I love even more watching Robert realizing how much he  knows.  That sly smile in his eyes! Priceless.

Trips and Screams

July 6, 2017

This is just a record of our trip interrupted many times by Robert making all sort of noises of unknown origin. There is nothing to learn about how to address such behavior, only a description of our clumsy attempts to go on while simultaneously addressing the behavior without any previously developed plan.  Almost every trip we take together has some moments like those.  I usually ignore them in my writing but they do happen and they do affect all of us in many ways.  

I am still getting back on track after four-day and 500 mile long vacation.  On Saturday, we went to Pleasure Bay for a walk around the bay.  Calm and peaceful.  Robert was calm.  He just insisted on getting his buttermilk crispy chicken sandwich and fries as he didn’t want to eat anything from the grill.  Specially since he ate four hamburgers the day before.  He said “Fries” hundred times or more. That is all.

On Sunday, we drove to Horseneck Beach.  We went for a walk along the beach, but surprisingly not extremely long walk, as Robert wanted to return to our spot relatively soon.  We played with strong waves for no longer than 10 minutes.  Still, Robert seemed to get some sort of rash from  water.  The water was not very appealing.  It seemed dirty with plenty of brown remains of the ocean plants floating in it.  We left the beach after a little more than an hour, but I got sunburn anyway.  We drove to Newport for the Cliff Walk.  Jan didn’t leave his jacket in the car.  It was very hot, and he got overheated, but Robert didn’t let him take off his jacket anyway.  I saw them from far away.  Jan attempting to carry his jacket and Robert trying to put it back on Jan.  His efforts were accompanied by screams of protests. Jan gave up and put his jacket back on.  I was upset.  Had they been not walking so fast and leaving me far behind I would insist on Jan not wearing a jacket.  Robert cannot dictate everybody what and when to wear .  This has been a problem lately.  It is mostly problem with Jan’s clothes not mine. There is for a reason for that.  For once, Jan forms habits which Robert notices and then he wants his dad to follow them to the fault.  Secondly, Jan  gives up easily, when Robert insists.  I usually present Robert with my passive resistance and that works. I stop in the middle and let Robert know that until he stops “insisting” we don’t go anywhere or don’t do anything.  On the way home,  we stopped in Fieldstone restaurant.  We spent relaxing time there with nice service and food everybody liked. Since I don’t remember Robert screaming, it is possible that he didn’t or if he did that was easy to manage and not loud.

On Monday,  we drove to Weirs Beach in New Hampshire, found a parking spot with some difficulties and went on an hour-long boat ride.  Robert was fine.  No screaming.  Well, there was some screaming before, as we drove this way and that way looking for a parking spot.  It was rather whining than screaming with words, “Boat, boat, boat” placed in between shouts.

In the afternoon,  we arrived at the Days Inn in North Lincoln.  We unpacked and went to Truant Tavern in Woodstock for dinner.   First, we wanted to go to Brewery, as we  had never been there before. , but it was very noisy and the rules for seating were unclear, so I decided to leave,  Robert didn’t mind, although before that he made some disgruntled noises. I think walking through very crowded maze of corridors  with lots of commotions  made him feel lost and confused. He doesn’t like that.  Truant Tavern was perfect.  Calm and empty at that time, a few minutes before 4 PM.  We sat outside.  It was a very pleasant afternoon. No noises.  Robert ate everything from his plate and some from Jan’s (clam strips).  We returned to a hotel.  Jan and Robert went to the pool while I went to the store to buy a few items.

Unfortunately, I bought a bottle of coke hoping to leave it for the following morning for Robert, but Robert drank it that evening  and then he couldn’t fall asleep until 2 AM.  He also had a lot of allergies, as he kept sneezing.  Maybe his stomach also bothered him. He went many times to the bathroom and spent a considerable amount of time there every time. It was clear that he was not feeling well, and he kept pacing the room getting up over and over. But he did it quietly trying not to wake his dad. As for me, when Robert doesn’t sleep, I don’t sleep either.

Robert went with us for breakfast in the hotel.  He ate a half of English muffin but reluctantly.  He made a few sounds of displeasure or confusion.  Hard to tell.  Enough to turn attention of a Chinese woman, who commented on Robert to her family, as all three, the husband and two boys, turned to observe Robert.  I was infuriated.  I stared at the woman with most angry eyes I could force myself to make.  Every time she looked at Robert, I resisted her stare with lightning  after lightning coming from my eyes.  Robert was not screaming any more but he was taking to the trash every item that expired its usefulness for his dining parents – plastic fork, then plastic knife, then one cup, then the other.  He got up at least 7 times walking to the trash and disposing of the garbage.  This way he kept himself occupied. He also must have felt that with every item removed from the table we were closer to leaving.  So there was no more making noises.

We drove to Lincoln Woods for the walk to Franconia Falls.  Robert and Jan went ahead waiting for me to catch up from time to time.  There were muddy places that had to be navigated carefully, but Robert didn’t mind.  He made the first set of noises when we got to the second bridge and weren’t sure which way to go next.  Robert doesn’t like our hesitation. It confuses him and scares him.  Moreover, it breaks the rhythm of things. As soon, however, as his dad chose the direction, he followed him up the narrow, steep, and muddy path to the Falls.  I lingered behind, finally deciding to turn back  and walk slowly down. Too slippery for me.  Robert and Jan passed me on their way back.  I heard Robert screaming again, I fell down.  I didn’t hurt myself and was more concerned with another sharp and loud sound than with my dirty pants.  On the way back, Robert screamed again when he got to the first muddy place and a group of young people blocked the better path around the mud.  Still, he followed dad on the other side.  He stopped before crossing another muddy site.  Two little girls walking in the opposite direction, far away from him, decided to run back to their parents.  As Robert walked down with his dad and pass them by (again on other side of the wide road) he screeched.  Was he angry at the girls that they treated him as if he were dangerous animal?  Did he sensed their contempt and fear?  I am afraid so, as he usually feels much more about people reaction to him than you would give him credit for. No, he was never, NEVER in any way dangerous to strangers, he never approaches others and tries to navigate as far as possible from other hikers. He didn’t make any noises for the rest of the hike. Given the fact that the walk lasted 4 hours (6.4 miles) those episodes that all together didn’t last longer than 20 second should not concern me, but they did.  The Chinese woman’s stare got to me and everything seemed harder to accept.

We went for lunch to the same Truant Tavern we diner the previous day because I wanted to eat outside as I was sweating.  In the restaurant Robert made three times 3 second long noises.  I cannot tell why.  I just told him, that if he continues we have to leave.  That didn’t make him happy.  He responded with the murmur of anger but then  calmed down.,For the remainder of our stay there, he was perfect. It helped that as we waited for food I tried to interest Robert with pictures from our trip and pictures of him riding a horse and playing mini golf.  That seemed to distract him from whatever bothered him.  Although he didn’t want to look for long, he seemed to regain his posture, as he smiled and kept answering my questions about our trips. As usual, he responded either with one word utterances or with repetitions of two-three word long phrases.  Any way, no more inarticulate noises in the restaurant. Just pleasant lunch, with all of us enjoying each other company. I wonder, however, if looking at the pictures of himself, somehow reminded Robert who he was and let him centered himself on that realization. Maybe, he understood that the pictures and the questions were our ways of turning attention back to him and maybe he just wanted that – more personal attention in the very changing environment.

 

While we were driving home, Robert demanded to go to the restroom.  There was none on the way.  Besides, he had already gone to the restroom in the restaurant just 30 minutes before. Moreover, he also kept asking for coke, which he kept drinking.  So I assumed that he really didn’t need to go that badly. Still, he kept whining and demanding restroom and coke for  all the 30 minutes that took  us to come to the Service Area on Route 3.  According to Jan, there was nothing urgent.  Nonetheless, when he went yesterday with Pam, to Applebee’s, he exhibited discomfort in the restaurant bathroom. Something was clearly not right.  So this morning I let him sleep longer and didn’t rush him from the bathroom to get ready for the van.  Jan drove him to his program later.  We hoped that Myralax and  two Metamucil  wafers would do the trick. Also asthma medication might address possible breathing discomfort, if Robert felt any.  I am not sure they did but there was no more screaming.  There was a smiling young man getting ready for his day.

Over all, it was a beautiful weekend interrupted a few times with screaming.  The noises were relatively short and in four-day long stretch not too many.  Still, I didn’t grasp the reasons for their occurrences. Was that asthma, stomach discomfort , maddening allergies, change of routines, confusion?

All of the above?

Possibly yes..

The Odyssey. Next Chapter Please

June 28, 2017

A week ago, we started reading The Odyssey.  We read the abridged version as it is presented in 9 chapters in Reading Mastery 6.  Usually after reading chapters from this textbook, Robert, with my help, completes 2-4 pages of worksheets from Workbook and Skillbook.

It takes a lot of time and a lot of energy to do so every evening. The problem is that Robert INSISTS on reading and completing exercises EVERY EVENING.  That might be because the story is so enticing that Robert wants to find out what are  Odysseus’ next adventure.  But it is entirely possible, that it is Robert’s need to follow the same routine every day that forces him, and me, to stuck to it and read even when we are both exhausted long into the night.

That is what happened four days ago.  We had a busy Saturday.  In the morning, Robert went with his dad to the town’s landfill to get garden soil while I cleaned the house.  In the afternoon, we went shopping and then for 4 miles walk along two sides of Charles River. When we returned home, I made dinner while Robert took a nap.  Then around 9 PM, he realized that we didn’t do our reading yet.  So he searched through the copies of all the worksheets I prepared for the whole week and pulled the ones for the chapter 3 of The Odyssey. “Read, read, read”, he said.  “No, I am too tired”, I responded, but he didn’t accept that response.  He insisted, “Read, read, read”  He followed me everywhere holding the textbook in his hands.  “You have to take a bath now” I told him.  He agreed,  went to the bathroom, finished his bath quickly, put on his pajama and…. grabbed the textbook.  “Read, read, read”. I gave up.  We read the chapter.  He read one paragraph, I read next one, and then we tried to synchronize our voices to read together the following paragraph.  Reading together was always the most difficult part, but that was exactly the reason why we were practicing it.  After finishing reading we moved on to workbook exercises.  They are usually easier to do, consisting mostly of one word answers.  Still, by the time Robert completed them I was exhausted.  My eyes were hardly open, and my mind was closing for the day.  There was no way I could lead Robert through the whole text of the chapter to help him answer questions from skillbook worksheets.  That would require going back to the text, rereading some of the paragraphs, explaining some of the details.  I couldn’t do that.  Even if I forced myself to do so, the benefits for Robert would be negligent.  I tried to put the worksheets away, but Robert protested again.  He was agitated and anxious.  “Work, work, work” he kept repeating and in clear sign of distress he kept patting quickly his cheeks.

“Robert, bring me a glass of water”, I asked.  Robert got up and went to the kitchen.  I quickly tore the two pages into many pieces.  I didn’t hide them, because from the past, I knew that he would keep looking for them.  I didn’t  just tear them into two or four pieces, because Robert would try to assemble them together like a pieces of the puzzle and keep reading.  I had to tear them into many small pieces.  Robert brought me a glass of water, looked at the pieces, moved them around, decided they were not usable and threw them away.

Next day, I made the copies of the same pages.  Without rereading, I went with Robert over the text of the chapter and then Robert answered all the questions related to the story.  With or without my help.

I though we were done with reading that day.  Robert wasn’t.  He wanted to read the next chapter.  yet again, he went to the pile of worksheets and pulled the one for the following chapter.  Luckily for me, he only found worksheets coming from the workbook and not the skillbook.  So we read, the next chapter, Robert completed exercises from his worksheets and then moved to writing in his notebook.

That let me to discover much better approach to reading those chapters.  We do that in two phases.  First day we read, talk a little about the text and do simple exercises.  The following day we review the text again, retelling the plot and then we complete skillbook exercises related to the story items.  Then we go and read the next chapter.

That helps with retaining the memory of the story.  It also helps to connect events from previous part to the following one.  So, at least in theory that would allow for better grasp of the whole book.

The Prince and the Pauper and The Theory of Mind

June 2, 2017

The last 25 chapters of The Reading Mastery V Textbook present an abridged version of The Prince and the Pauper. Since I don’t remember the original text, I am not sure how much more complicated or longer the original is. However, I don’t find the textbook version simple. It must be specially difficult for a person with autism.  The person whose ability to take into account how the perception of things varies from reality seems to be limited. It is difficult to explain trepidation Tom Canty and Edward Tudor had to feel while being thrust into each other life. It is even harder to make sense of other characters treating Tom as if he were Prince Edward and treating Edward Tudor as if he were the poor boy from Pudding Lane.

June 21, 2017

On June 16, Robert finished reading The Prince and the Pauper.  His dad accompanied him in this endeavor and later completed with him three pages of related worksheets.   I regret that I was too tired to read with Robert that last chapter because I wanted to see Robert  reaction to the ending.  However, reading this text was extremely challenging.  Maybe more challenging for me than for Robert.  First, I had difficult time reading the parts that related to cruel mistreatment of Edward and his companion, Miles Hendon.  I wasn’t sure if I should explain the cruelty of those times.  I felt very uneasy reading about betrayals, flogging, begging, and all kinds of punishments mentioned in the book. I felt even worse knowing that Robert is reading  as well.  What pictures were created in his mind?  What emotions were evoked? Would they stay with him or evaporate at the end of the chapter?

Over and over I kept remaining Robert that Tom Canty was treated like a king. The people in the palace believed that he was the king. Their beliefs were based on the way Tom  was dressed. At first Tom protested but since his denials didn’t work, he decided to pretend to be the king. So he began to act like one.   Edward, however, strongly and stubbornly kept behaving like Tudor, he was.   Although he was confronted by people’s beliefs that he was a poor boy from Pudding Lane, he refused to act like one.  Not only he didn’t beg and didn’t steal but he also made Miles Hendon a knight and, later,  an earl.  He would avoid  mockery and mistreatment if he pretended to be Tom Canty, or at least stopped demanding to be treated like royalty.  Yet, he constantly demanded to be recognized as a prince and then as a king. He didn’t adjust his behavior to match the  expectations of those who formed false beliefs of who he was based on his tattered clothes.

Those are not easy concepts to grasp.  I struggled with explaining the plot and struggled even more trying to figure out what Robert understood and HOW he understood it.

From the way, Robert answered questions in the worksheets, I should deduce that the complexities of the situations the boys put themselves in were not lost on him.  He answered correctly.  Still, I had doubts regarding Robert’s comprehension of the whole story.  After all, Robert cannot explain anything with full sentences,  The best I can count on are one word answers.