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.

August 12, 2016

It has never occurred to me that Robert might lose the skills  had already acquired. It is not that I believed that it would not happen.  It is just that I didn’t think about it at all  and thus I was not prepared for set backs.  When I write, “skill” I also mean ability to behave properly in different settings and changed circumstances.

When Robert’s father, Jan worked for three years in California, Robert accepted his absence and the rhythm of our trips to Boston or Providence Airports to pick up dad late at night and drive him there early in the morning.  Lately, however, Robert reacts with great anxiety when dad disappears from his view in places outside our home.  If dad goes to the restroom in the restaurant, the desperate call, “Dad, dad, dad”  follows dad’s every steps. When on a way from the ski slopes to the lodge, dad left Robert with ski instructors and turned toward the closely parked car to put skis in the trunk, Robert’s desperate, “Dad, dad, dad”  could be heard not only in the lodge but on the mountain peak, at least at the lower, South Peak of Sunapee Mountain.

In the last few years, Robert went with us to movies and always behaved appropriately and predictably.  Yes, he had to have something to munch on like M&Ms or Swedish Fish.  He had to make one trip to the restroom and if the movie was very long and scary, two trips, but that was all.  However, during our last three trips to the theater, Robert’s behavior became impossible to manage.  Somewhere in the middle of the movie he loudly demanded, “Home, home, home”.  But, when I got up to leave the theater Robert equally loudly protested, “No, no, no” only to call, “home, home, home” a few minutes later. This vocal pattern repeated itself many times.  Had he been still small, I would just pick him up and carry out of the theater.  But he is not small.  He is 24 years old man.  The only way to mitigate slightly the frequency and loudness of his repetitions was to reassure him that we would go home after the movie.

Six years ago, we drove to California and Oregon.  On the way we stopped at many hotels including those that didn’t have pools.  The one in Yellowstone National Park didn’t even have TV set.  (Although it had a wonderful view of the sky from the upper deck.) Robert didn’t mind.  Night after night we unpacked, slept, packed again and drove.  I don’t  remember even one moment of discomfort.  That is why  we were completely surprised when during our last trip to White Mountains, Robert didn’t want to stay the second night in the hotel. When the second evening approached, Robert went for the evening walk, ate dinner – take out from local restaurant -, went to the hotel pool and then started packing for home.  We were too tired to drive.  With difficulties we convinced him to stay the night in the hotel, but even as he was falling asleep he kept repeating louder or softer, “Home, home, home.”

Are those changes a result of never clearly articulated anxiety?  Is his anxiety caused by the development of understanding that the world is a dangerous place.  Is it possible that now, Robert wants to keep an eye on his father as a way of preventing him from going back to West Coast?  Does now, he understands (or feels) more the danger lurking from movie screens, and wants to assure that there is still option of going home?  Maybe the problem with staying in hotels comes from the fact that by usually staying in a hotel for just one night doing our trips to mountains, we taught Robert that one night is the limit of staying outside the home.

I don’t know what caused those changes in behaviors and I know even less about how to remedy them.

August 8, 2016

Herman the Fly, Linda and her sister Cathy, Tom and Eric, kangaroo Toby, and finally Edna and her friend Carla led Robert all over the world, into the past and the future mixing reality with a pinch of fantasy.

Herman the Fly was Robert’s guide during trips from East Coast to West Coast and back.  Herman’s experiences in the airplane came handy when Robert flew with me from Boston to San Francisco and back to Boston. Herman was the first character to cross over Pacific Ocean on the flight to Japan and Atlantic ocean on a flight from Italy back to New York.

Soon Linda and Cathy also crossed Pacific, but on the cruise ship  and  with a short detour to a desert island following the sinking of their ship.

Tom and Eric used the time machine to visit the  past and the future often witnessing important events  and thus giving Robert opportunity to to travel up and down time lines which listed years of San Francisco earthquake, Columbus discovery, United States Independence and …. Robert’s birthday.

Kangaroo Toby traveled unwillingly from Australia to Canada but soon he returned happily to his part of Outback.  Taken away from his mob by crooks he befriended a Peacock from India who provided important information in  regards to the trip and events. .

Edna and Carla escaped being swallowed by giant whirlpool somewhere in Bermuda Triangle only to unexplainably end up for a few days or a few hours in the land of dinosaurs.

I am not sure what concept of space and time those stories help Robert to develop (create?) I am not sure if by reading, looking on the maps of the World, and assigning dates to specific events on the time line, Robert grasps better his place in the world.  But then, I am not sure if I can do that myself.

August 1, 2016

Last Friday, Amanda (Robert’s sister) took Robert bike riding on the parking lot across the street. I was a little apprehensive.  Although the parking lot was mostly empty, there still were some cars passing through.  A few minutes later, Amanda came to tell me, “Robert said, ‘Coffee, coffee, coffee’ .  That means, ” She continued. “that he wants to go to Starbucks.”

Well, Starbucks is 3 miles from our house and the ride there involve three streets – two of them with moderate traffic and one with a heavy traffic.  True, there is a sidewalk along those street with the exception of a few hundred yards.  Moreover, almost three years ago, Amanda and Robert rode their bikes there at least two times.  That is why, in the first place,  Robert associated bikes with coffee.   The three years passed, however, and Robert changed.  So, I was nervous. But then I realized that I should not be the one who is putting stiff limits to what Robert can and cannot do. So, I let them go.

Twenty minutes later, Amanda called from Starbucks to inform me that Robert was very proud of himself,  gave her high-five, drank quickly iced caramel Mocchiato with coconut milk and asked for more.  Her second call was to tell me that they are leaving to come home.

We should have waited.  Although it was an evening, it was not dark.  They were as safe on the way home as they were on the way to Starbucks. We should have waited.  But we haven’t.

Anxious Jan went to either pick them from the road or to shadow them on the way home.  Wrong idea.

Robert became both confused and angry.  After all, he was on his bike and he has not finished his bike route.  He was doing something with HIS SISTER and didn’t need his dad’s involvement.  They were peers, dad was not.  As he rode his bike he kept stretching his left hand calling very loudly, “Dad home, Dad, home.”

Dad, took a quick camera picture of his distressed son and accelerated  disappearing from his son vision.

Nonetheless, Robert was not happy. Our intervention/supervision to some degree spoiled this experience for him.  He wanted to grow up, and the best way to learn how to grow up is to follow his sister.  She is the role model demonstrating what it means to grow up step by step.  Dad and mom are parents, they keep the childhood like a sticky air all around.

July 31, 2016

Last few weeks have been very hard for Robert and for everybody around.  Robert has been suffering from all kinds of skin rashes with inflammation and/or secondary infections.  From head to toes coming and going in circles.  As soon as one part of his body gets better, the other part becomes affected.  To make it worse, I have been unable to secure an appointment with a dermatologist despite trying almost every day.

Such condition makes Robert much more irritable, anxious, impatient, and, worst of all, rigid in his way of assuring that his surrounding remains unchanged and that the ways of doing things by him and by EVERYBODY around remain the same all the time.

His ears and nose might be itching but it doesn’t help that he constantly pats his ears and cheeks in quick, repetitive movements or strikes his nose with all the fingers, one after the other, as fast as if he were playing short notes on one key of the piano.  Maybe he does that because the ears and the nose itch.  But maybe they itch because he strikes them many times a day.  Then there are sounds of his distress and repetitive demands presented in never-ending crescendo when we try to ignore them because we cannot fulfill them.

Although he relatively calmly survived 6 doctors’ visits in the last month, their sheer number and the lack of meaningful improvement didn’t help to put everything back to normal.  Whatever that normal might be.

And yet almost every day, there is the time when everything seems to fall back into place.  One or two hours of learning together.

A page from Saxon Math

A page from Math U See

A text from Horizon Reading to Learn

Two pages from workbook Human Body

A few pages of practicing talking from Fun Deck and Do

Our time of sanity, calm, and balance.  Even our old cat Amber wants to bask in the ambience of that time and that place.  She jumps on the table, spreads herself two feet away from us and half listens, half daydreams.

I don’t know if Robert would be ever able to use ten percent of what he is learning.  I know however, that this daily routine of teaching and learning let us survive the most chaotic and  difficult times without forgetting who we are and what we – Robert and I – are capable of.  This short time of studying together pulls us up from despair and doubts and let us regain our thoughtful human form one day at a time.

July 12, 2016

“Robert, do you want to go to the beach?”

“No, no, no, no no.”  Answers Robert between two bites of his cheese stuffed poblano pepper.

Years ago, such answer forced us to cancel the family trip to the beach.  Not anymore.  Now, Jan and I know that such  answer means, “I don’t want to go now, because I am eating.”  So, we have learned not to ask Robert if he would like to do something when he is busy doing something else. He might be putting away laundry or emptying dishwasher but as long as the job is not completed Robert will say, “No” to the most tempting alternative.

Of course, over the years, we have also learned to use a sentence of the form, ” After you finish…. we would….” Robert understands very well the concept of “after”.    He also grasps the meaning of “if” phrase as the condition of doing something. Still, the next step which would require using “after” in the question (Would you like to go to the beach AFTER you finish eating?” ) seems not reached yet.

“No, no, no” remains  Robert’s default answer to too many suggestions.  To escape such rejection I have learned to give Robert a choice.  Somehow, he feels obligated to demonstrate his preference even if both elements of the alternative don’t seem appealing.

It is much more difficult to understand the thinking process behind other “No”   answers and consequently it is much harder to decide how to deal with such rejections.  Not surprisingly, we, the parents, often encounter “no” when we try to widen Robert’s world and present him with new situations or new arrangements of old objects.  “Robert’s “No” can mean,  “We have never done that before.”  or “This is not how the world works”  or ” I would consider such change if I were not so scared” .

Using “No” as a way of assuring that the rigid limits of  Robert’s world are not punctured, is leading to the most severe dilemma.  Accepting “No” might lead to reinforcing the walls separating Robert from the freedom provided by wider perspectives on life, but rejecting it might lead to increased fear and distrust of others.

And of course, there  are many situations in which Robert says. “no” for very valid reasons. Because, however,  he doesn’t have  words to explain them, those reasons are not understood and too often the “No” is considered just another symptom of Robert’s condition – be it autism or OCD and not of his much more insightful view  of the circumstances.

June 19, 2016

We had a very difficult weekend.  I don’t even know how to write about what caused the problem as it was long in the making and it had many components.

Robert chooses what to wear every day.  Convincing him to wear something different is not easy but possible. Lately, however, he also wants to decide what his father wears.  And he can be very persistent.  If I look back, I could notice that the Robert’s attitudes developed over time and went unchecked with my husband passively accepting suggestions of what he should be wearing and what not.

I should also notice that this habit was connected to another one Robert acquired in the last few months.  Robert organizes not only clean clothes, but also the dirty ones which are already in the hamper.  He makes sure that all the clothes are spread on top of each other in a way they were worn: underwear, then white T-shirt than pants, then another shirt then socks.  Day after day the same order.  even worse, Robert organizes our dirty clothes in the hamper in the same way. That is why, he doesn’t accept the fact that sometimes we drop in the hamper two dirty shirts.  Then he takes one  and hangs it in the closet.

As I wrote in one of the previous posts, Robert believes that each day demands only one set of clothes.  Although he can make allowances for special occasion and change clothes for instance for a special banquet, whenever banquet is over and Robert returns home, he immediately returns to the clothes he wore before.

That is exactly what Robert did last Friday, after returning from a banquet.  That wouldn’t be a problem, but he also wanted his dad to wear his old dirty shirt from the morning.  Dad resisted telling Robert that it was dirty. Do Robert decided to wash that one shirt and he did.  He brought it back after washing cycle ended and demanded again that dad puts it on before going to bed. still dad resisted and Robert gave up.

Well, only until Saturday morning.  On Saturday, everything started again.  Moreover, I insisted that Robert (and his dad) wear short pants for a walk in Pleasure Bay.  It took a long time but I managed to convince both men to do so.  Then Robert insisted that despite hot weather dad still had to put on his jacket.  Another 20 minutes spent on convincing and Robert agreed to leave Jan’s jacket in the closet.

Still, all that convincing took so much energy yesterday, that today I didn’t even mention short pants and Jan didn’t dare to leave without his jacket even if it was much hotter than yesterday.

At least, we managed to salvage a few relaxing hours each day with pleasant walks, one along the Pleasure Bay and another one at World’s End park.

June 8-11, 2016

Robert did all of that before.  He read texts from Horizon Reading to Learn C-D Fast Track.  He solved problems from all 140 lessons of Saxon Math level 4. He completed Daily Geography Practice –levels 1 through 5.  He performed operations on decimals. However, in the past he used Momentum Math to do so, while currently he follows Math U See Zeta level.  Moreover, we kept doing the same things every couple of years.

Usually a year or two pass before we redo the old curriculum.  During that time, we study using other sets of textbooks or workbooks. Those books might present similar topics in different contexts or might address new set of subjects and/or skills.

In the past, we read the same texts and completed the same worksheets dealing with science (human body, animals, habitats), social studies,  math.  We redid all three levels of Writing to Learn and repeated at least twice all the sections from grade 6 of Momentum Math.

Over and over. It looks as we got stuck in the same place.  But this is not the case.  We both learned.  We both perform on slightly higher levels.

I understand better, how to prepare Robert for reading a new (well relatively new) text in a way that would help him attend more closely to the story. Robert retains more facts  from the texts he read and increase his ability to find the information he somehow missed.

I learned to simplify my explanations.  Robert became more skillful in applying either my directions or his prior knowledge to answer questions from variety of subjects.

I learned to go ignore some topics as unnecessary ballast (For instance in Math U See I ignored hectograms into decagrams deciding that a familiarity with grams and kilograms should suffice.)  Robert became more flexible with switching among different kinds of tasks in Saxon Math.

Finally, there is this sly smile on Robert’s face when he solves the problem or comes with a correct answer. He knows that he knows.  And that is priceless.