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.

May 26, 2016

I had the idea of working simultaneously on Daily Geography Level 3 and Daily Geography Level 6.  I imagined that the  level 6  would widen Robert’s horizons while Level 3 would increase his independence and consequently his self-confidence.  So, for the last couple weeks, we studied using both curricula.  Sometimes one or two units from level 3.  Sometimes one unit from each level.  Sometimes just one unit from level 6.

In the past, Robert completed with me all 5 levels of Daily Geography. I used them as the easiest approach to reading comprehension. Except I didn’t have the clear idea of what exactly I was doing and what exactly  Robert was learning.  Well, Robert did learn elements of Geography: directions,  parts of the map, US states, using legend.  But  reading comprehension  is another story.

One of the surprising findings while working with both levels was the realization that for Robert neither level was more difficult than the other one.

I also discovered that Robert had difficulties with processing questions he was reading.  I didn’t realize that before because… I always helped Robert by repeating the question he read.  So he must have attended to my words and not to words he had just read.

He read questions without recognizing the informative value of some of the words as those directing him toward the answer which, I was sure,  ( still am) he knew.  The simplest example would be this question, “How many states are in Southwest Region?”  Robert directed his attention toward words “southwest region” and completely ignored phrase “How many”. Consequently, he didn’t know what he was supposed to do.  To help him, I covered the part of the sentence in such a way that only words “How many” were visible.  Robert read them again and waited just a few second until I uncovered the rest of the question. Then still a little hesitant, he counted all four states.  With some of the following questions I asked Robert to find the important words that would tell him what to do.  That seemed to helped Robert.  Twenty minutes later, we returned to almost the same types of questions but in connection with Northeast region.  Robert was more independent  despite the fact that this time he had to deal with  not four but nine states.

It is possible that by performing second activity  not long after the first one, Robert  relied on memorized connections between specific words and tasks they called for.  But it is also possible that Robert understood that specific words can give him directions straight forward to a correct answer.

May 18, 2016

Last Monday evening, Robert and I went to see the new Jungle Book movie.  Pam, who usually comes on Mondays, was sick so I tried to replace her and provide some excitement  That is why we went to movies. It was a Disney movie.  The movie  retold the same story that old Disney cartoon Jungle Book had told before. It should be a children movie.  But it wasn’t.  At least not for Robert.  For Robert it was a jungle and he was being immersed in it by his mother.

Moreover, I thought that the  3D version of the movie would be  more entertaining than the regular one.  For better effects I chose seats very close to the screen.  Everything was fine at the beginning. Robert watched all the ads and all the previews.  He watched the beginning of the story and calmly consummated  his Swedish Fish candies.

Then, as soon as the candies were gone, Robert said, “Home, home.”  I didn’t expect that. I didn’t make a connection between the appearance of the Shere Khan and Robert’s  demand to leave the theater.  I didn’t make a connection between rather dark and gloomy setting of the movie and Robert’s raising anxiety.  Because, sadly, his anxiety kept raising as did the volume of his demands to go home.  With the appearance of the herd of elephants and then the gigantic serpent Kaa, Robert was getting more and more upset.  So, I decided to leave the theater.  Except Robert didn’t want to.  He protested even louder when I took off the 3D glasses and got up.

I didn’t know what to do.  Luckily, there were very few people watching the movie and they were seated at the very end of the auditorium.  Still, Robert was disruptive and I didn’t know how to remedy that. .   There were hardly lighter moments in this version of the story.  The screen reminded mostly dark and gloomy.  Yes, it was a jungle there.  Even Baloo, when he first showed up, seemed slightly threatening.  And then there was immense King Louie, the jungle fire, and helpful but still threatening elephants. Robert was petrified.  The characters were so real and so close. Every few minutes, I tried to entice Robert to leave.  But although he had difficulties being immersed in the jungle,  he didn’t want to leave without final resolution. He had to stay. At some point Robert began to move my arm toward the screen.  It took me a while to understand that Robert wanted me to get into action and save Mowgli from Shere Khan or even better take him home.  Only then I realized how petrified Robert was and only then I started to reassure him by letting  him know that it was only a movie, a make-believe story, and that it would end well.  That helped a little.  Robert and I survived to the end, but as soon as the credits showed up on the screen with great relief we both left.

May 7, 2016

For almost two years now, every evening, Robert has been approaching  me saying, “Notebook, notebook.”  I have followed him to the dining room table.  There, Robert takes his special pen and writes down what he ate, where he went, or what he did.  Some sentences come to him easily. Some sentences need my prompting – sometimes one word, often more than one.

Of course, Robert had been writing in his notebook for years.  The difference, the last two years made, is that now he is the one who initiates that part of our evening routine.  Every day! That change came with Robert’s participation in his Day Program.  He  finds it important, if not enjoyable, to share with his instructors and peers the events taking place in his life.  He cannot talk freely, the words don’t come when he needs them, so he shares by writing.  It is easier.

In the last month, I noticed another behavior which I couldn’t understand at first.  After Robert wrote down what he ate, what he did, or where he went, he  was still not ready to close his notebook.  He wanted to write more.  He was holding his pen moving it above the notebook pages  showing me that there was something else to be noted.  Except, I didn’t know what.

One evening, Robert came home late after going with Pam to the restaurant and bowling alley. It was too late for us to  study together.  We only had time for a short note in Robert’s Notebook to record his outings with Pam.  Robert, however, did something surprising.  He began searching among workbooks and papers until he found  a few worksheets.  He placed them on a table in front of his chair and sat down to complete them with (well still) my help.  It was late.  Moreover, two of the worksheets presented problems which I considered two difficult for Robert.  Robert was supposed to find the time of the flight through different time zones. At that time we still worked on understanding time zones by comparing the time in different zones.  We also counted elapsed time.  Both skills were relatively new and not  mastered yet.  Still, Robert insisted.  Step after step, we came to the solution. I am not sure he grasped it.  When, however, I was telling Robert that the problems were really, really difficult, he smiled.  Smiled.  He wanted to do difficult problems!

Since the other few worksheets were rather simple, Robert finished them quickly with my minimal assistance and only then he reached for…. Notebook. That is when I finally understood.

Robert wanted to write not only about his food, daily chores, or places.  He wanted to  note much more meaningful activity – his LEARNING.

Even more, he wanted to write about solving difficult problems!  That is why he smiled!

If he wanted to write about how hard he studied it was because someone else was admiring Robert’s determination to study and the skills he kept acquiring and honing.   I called the only place when that could happen – his Day Program, Lifeworks.  I confirmed what I suspected. For  every evening filled with learning and writing in a notebook there was a morning, when Robert’s case manager, Nicole read with him his notes from home. She praised Robert for hard work and sometimes admired the fact that Robert studied difficult topics.  That is why Robert wanted to solve difficult problems.  He wanted to be admired.