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.

So Puzzling, So Easy. Learning Elements of Algebra

May 3, 2017


There are many aspects of Elements of Basic Algebra B written by Nancy Nichols and published by Firelight Books LLC, I don’t like. As I am using this workbook/textbook with Robert not once I find slightly incorrect statements.  Not once, I think that some concepts could be introduced differently.  Not once I think that I would  present some of the ideas in a simpler, clearer way.


The truth is, I wouldn’t.  I wouldn’t dare.

I wouldn’t have courage to teach Robert Algebra.  I would consider it too sophisticated, too complex, and too abstract. I would be afraid of failing to teach him and confronting the limits of his abilities.

So although there are many things I don’t like about this curriculum, nonetheless, I am sticking to it because it presents elements of Algebra in the easiest possible way.  In the way that shows how to introduce such concepts as “slope” or “y intercept” and then use them to present graphically linear equations.

No need to plug  in numbers and perform operations on integers which are still relatively confusing to Robert.  It is enough to look at the equation y= ax+b and plot the intercept (0, b) and then go a units up or down depending on the sign and one unit to the right remembering that slope = rise/run.  That has been explained on many pages of the workbook with both positive and negative a and b.

And of course, I feel encouraged to address any possible confusion, Robert might feel,  with additional, home-made, pages of tasks.



Daring to Read with Reading Mastery V

April 6, 2017

For three months now, Robert and I have been reading story after story from old Reading Mastery V Rainbow Edition Textbook. This out of print SRA reading curriculum that includes Skillbook and Workbook, two Presentation Books and a few additional books had been waiting on a shelf for a few years before I dared to introduce it to Robert. I doubted Robert’s ability to understand the stories. I also distrusted my ability to guide Robert through reading in a way that would enrich his life.

To put it simply, I was afraid of his and my failures.

I didn’t know if Robert was armed in prerequisite skills that would make it easier to take a plunge into this program.  After all, I didn’t work with Robert on any of the lower level curricula.  We didn’t have Reading Mastery IV or III  or any other. They were too expensive to purchase.  The one in our possession was  bought in a second hand store for a fraction of the original price.

Moreover, I felt intimidated by different approaches to reading comprehension. I read The Power of Retelling and The magic of Story.  They described very sound methods and yet I knew that it would be almost impossible to use them with Robert.  His ability to formulate sentences is so delayed that it renders him almost speechless.  All too often, the deficiency of speech is misconstrued as the lack of ability to think and/or to understand. That happens specially when the reading instructor doesn’t have tools to asses student’s comprehension of a particular text.

Those were the reason I didn’t start Reading Mastery years ago. Meantime, we went twice through some of the texts in Horizon Reading to Learn. We completed a few of the Spectrum Reading workbooks.  Some matched Robert’s developmental and personal needs, some didn’t.

Finally, I pulled the huge binder of the shelf, studied it for a while and presented the first story The Secret Cave to Robert. We analyzed the pictures that introduced the settings and characters. Then,  I read a paragraph.  Robert read the next one. The following paragraph, we read together. We kept switching until the end of the first part. Next, we worked on workbook and skillbook tasks that addressed comprehension in a few of its basic aspects. Mainly “WHO” “WHAT” and “WHERE”  Less of “HOW ” and “WHY”, as those questions would require longer verbal utterances which would immediately  discourage Robert from reading.

As we followed the textbook with The Wizard of OZ and other stories, I stopped using Presentation Book. Although that decision might have reduced Robert’s learning opportunities, it also simplified our reading process.  So, we just read together and then answered the questions as they were presented in student’s materials.  Some of them related to maps representing settings.  Some of them asked which character said something or could have said something.  Some asked if an event happened at the beginning or the end of the stories.   It was easy for Robert to answer because he didn’t have to string words into complex sentences.   It was reassuring to me because I  finally had a tool to check some aspects of Robert’s comprehension and assert that yes, he grasps many elements of the story.  He understands and /or remembers enough to let me go to the next story in the textbook or to the next event in our lives.

Since Robert’s language is delayed so severely that it interferes with expressing his thoughts, the options to answer in one word utterances to demonstrate his level of comprehension was rewarding to both of us. Finding the answer easy to say or write helped build his confidence.  He didn’t have to struggle with multiple syllables which always came out scrambled beyond recognition.  He could clearly say or write a word and be understood.  And I could clearly recognize and appreciate his level of comprehension.

So we kept reading and enjoying it more and more with every new story.


It came to my attention that Reading Mastery Rainbow Edition differs in some aspects from Reading Mastery Signature Edition.  For instance at least some of the stories in level V of an old edition are in level IV of a new edition.  

Horse for Prompt Dependency

February 13, 2017

In many of my previous posts I whined about Robert being too prompt dependent. I complained that as soon as I leave Robert alone with the worksheet, he stops working and waits for my return.  I tried to make the tasks simpler.   I went over the worksheets with Robert.  After he  answered every question orally  I let him  write down the answers he had just practiced.  It didn’t help.  I reduced the number of questions.  It didn’t help. Every time, I left Robert alone with the problems he stopped working.  He waited for me not to tell him the answer, but to encourage him with nothing more than,  “Go on”.

 It seemed that my words of encouragement were the switch that could turn on his brain.  He would think when I asked him to think.

I realized that prompt dependency is not just the function of not knowing and waiting for someone to give an answer or to provide more or less subtle cue.  It might be that some of the individuals are so prompt dependent that they delegate to others the right to operate the button that controls their engagement in the given activity.  I realized that as I watched Robert trying to weave his horse, Calvin, between the cones.  Robert has done that many times before.  What was new, however,  was that this time, his instructor Cindy was standing behind the rider and WAS NOT offering constant directions or words of encouragement.  Moreover, Calvin was also reluctant to follow the path because he, too, needed constant reminders to continue.  As soon as Robert lead the horse from left to right and right to left, the horse stopped.  Calvin waited for a gentle nudge from Robert’s heels and the word, “Walk”.  Robert, however, didn’t do anything as he  was also waiting for Cindy to tell him, “Make the horse walk.”  Cindy didn’t say anything.  Since, she was standing behind him, Robert couldn’t even get a clue from her body language. So he waited.  And waited. And waited.  So Calvin waited.  And waited. And waited.  It seemed like a very long time passed before Robert nudged the horse and very softly said, “Walk”.  Calvin weaved from left to right and from right to left and stopped again.  Then Calvin waited for Robert and Robert waited for Cindy.  But Cindy said nothing. Finally, Robert used his feet a couple of times to give Calvin a cue.  Calvin moved again.  From left to tight and right to left.  This pattern of behaviors repeated itself one more time before the horse and the rider reached the end of the line of street cones.

It was an eye-opening experience for me.  There were a few discoveries I made at the same time. They seemed almost too congested to pull them apart for clarity.

  1. Robert needed a prompt almost in the same way Calvin needed a prompt.
  2. At the beginning, Robert didn’t believe that he can control Calvin’s behavior the same way he let Cindy control his own actions.
  3. Robert realized that he can control Calvin himself without being prompted to do so by someone else.
  4. As Robert regained control of Calvin, he also reasserted the control of … himself.  Robert gave command to Calvin AFTER he had given a command to himself.

I am not sure if Calvin was aware of the importance of this lesson for Robert.  Cindy, however, was very aware.  Just a few weeks before, we talked about Robert’s prompt dependency and she understood the nature of Robert’s problem much better than I.  She knew how to design the lesson to convince Robert that he has to decide on his own what to do and that he has the ability to do so.

Of course, Calvin also helped.

Robert’s instructor, Cindy Conquest, sent me an e-mail with more detailed description of her approach.  With her permission, I copied it below. It explains the steps involved in her teaching methodology.

“To give you a little background information if you have interest: I had to build up to get Robert do this gradually. I scaffold all of his lessons in this manner. In previous weeks, we started with the cue “walk around the barrel” and he would have to walk away from me 5 feet to get around the barrel, then turn to face me and come back to me. Sometimes Calvin would stop at the barrel, but as Robert turned around he would see my face and that prompted him to ask his horse to walk back to me.
Then we shifted to “walk to letter H (or any of the letters). I started out at the letters, then moved into Robert’s peripheral vision, then eventually moved behind him.
Finally, we graduated to the cones. Robert had completed the cone task many times with prompting, and Robert had successfully walked away from me many times by then withOUT prompting, so we combined the two. What was different this time was that it took Robert almost twice as long to initiate the task again once his horse stopped walking. However, he did initiate it. Others may consider this a “waste” of time as it appeared that Robert sat for at least a few minutes silently before he initiated the task. But, Robert finally did initiate the task on his own – which made all that waiting well worth the while. “




Forcing Flexibility

February 11, 2017

Writing about Robert is like describing the ride on the rollercoaster.  Before you find  sentences depicting your slow mount to the top, you are already loosing your breath while sliding down  with the speed that in a fraction of a second destroys all of your previously strung phrases turning them back into their gelatin beginning.

Not much has changed since, almost a year ago (February 23, 2016), I wrote the above sentences.  There are calm times when Robert and I are learning.  Robert is reading, answering questions, completing worksheets, speaking, solving problems.  Slowly, with some difficulties we move from one concept to another.  But before I write in this blog describing some of the idiosyncrasies that affect Robert’s appropriation of the specific ideas, something else happens, and I have to use all my resolve to steer Robert and us (his family) out of the path sharply descending into unknown. It might be that Robert wants our guests to leave and demonstrates his wishes in a way that cannot be accepted.  It might be that Robert refuses to go to horse riding lesson with me but for hours keeps demanding that dad, who happens to be sick,  takes him there. It might be that Robert insists that his dad stops working in the garden and returns to the computer.  It would be so easy to give up.  It would be much easier to tell the guests to end the visit.  They would understand.  It is much harder to make Robert accept their presence. It would be easier for dad, even when sick to get up and drive Robert to the horse riding lesson, than to teach Robert to accept that sick parent cannot always do what Robert wants. It would be easier to do garden work when Robert is not at home than to make Robert tolerate dad’s yard work.

It  is  much easier doing everything the same way since for Robert any change provokes his strong and long resistance. And yet we have learned that we have to do everything to make sure that Robert accepts different solutions or outcomes.

Years ago, Robert had to learn that different roads might still lead home.  He wasn’t even three years old when we noticed that he always became agitated when on the way home, we took slight detour.  He noticed immediately that it was a wrong way and acted up – kicking, wiggling in his seat and making noises. It took a lot of road constructions and detours before he understood that different roads might lead to the same place. Ability to adjust to change enlarges one’s world and frees a person from the rigid bars of rituals.  Yes, Robert appears to feel safer when things remain the same. But, the things never remain the same forever.  The change is inevitable. Robert cannot escape it.  That is why we try to help Robert to adjust to the change or, sadly, show the consequences of not accepting it.

Those difficult moments often make me forget about calm hours of learning.  But we still learn.  Following old Reading Mastery V curriculum, we kept reading The Wizard of Oz. We solve problems – two pages a day from Singapore Math 4B . We build birdhouses or assemble 4 cylinder working toy engine.  And we regain our serenity.

Fait Acompli

February 9, 2017

Two weeks ago, Robert wanted to go to his adaptive horse back riding class.  He really wanted to go. However, his dad, who has been taking him there in the last few months, was sick and couldn’t drive.  I wanted to drive Robert, but he refused to go with me.  It was strange since it was  I who used to drive Robert there most of the time in the previous few years.  Robert wanted his dad.  It was their Sunday routine.  Horseback riding, shopping in Costco, and Crispy Chicken sandwich from Mac Donald.  I promised to do the same, but Robert refused.  He kept repeating, “Dad, dad, dad”.  He brought his dad’s pants and sweater, so dad would get up, dress, and drive.  He even tried to pull dad from the bed.  No words would persuade Robert to change his mind.  I had to cancel the lesson.  But Robert still wanted to go.  He didn’t seem to grasp the concept of cancellation.  At least not then and there.  I tried to turn his attention to something else.  We studied a little.  We went to the supermarket. But when we came back, Robert began insisting again,  Insisting!!!.  “Horse, horse”, he kept telling his dad while dad tried his best to sleep.  Over, and over and over.  Since the words didn’t persuade dad to drive Robert to the riding lesson, Robert emphasized his wish by taking a bag of carrots from the refrigerator and bringing it to dad.  “Horse, horse”, he kept repeating and simultaneously pointing to carrots.  Every time dad responded by telling Robert to put carrots back in the fridge.  Robert complied every time only to return to dad without carrots but with the same message, “Horse, horse, horse.”  When that didn’t help, Robert again took carrots to his dad repeating the same mantra “Horse, horse, horse” and then again returning it to the fridge.

It was exhausting.  It was hard for my husband and  for me. But  it was excruciating for Robert. He was clearly in distress.  Ignoring him didn’t help.  Redirecting him didn’t help. So I did the only thing I could do.  When Robert went to his dad again but without carrots, I took all the carrots out of the plastic bag and hid them.  I left, however,  the empty bag in the refrigerator.

Robert opened the refrigerator drawer and found an empty bag,  threw it away, and …. went to watch Netflix on his IPAD.  After four hours of attempts to force his dad to go with him to the horse riding class, Robert calmed down in a second.  Just like that.  He didn’t mention riding class not even once that day.  Maybe for Robert there was no point of going horseback riding since not even one carrot left.

I left an empty bag because of my previous observations of Robert’s reactions.  Many times in the past, when I tried to throw away his socks with holes, Robert would go through all the trash cans to find them and put them back in his dresser.  When I, however, cut  socks from top to bottom leaving a flat pieces of fabric and left them in the open, Robert accepted the fact that they couldn’t be worn anymore and dropped them in the garbage basket.

So I believed that hiding of the whole bag of carrot, would make Robert even more anxious. He doesn’t like when imperishable things vanish without explanation. Thus he would keep looking and persevering even more.  Carrots, after all, could be eaten or used in cooking. Their disappearance could be explained and accepted to everybody’s relief.