Learning to Trust

April 27, 2016

Robert had to leave.  He shouted, “Car, car” , during the beginning of the presentation.  I put my finger on my mouth and whispered, “Shshshsh” .  Robert put his finger on his lips and whispered ,”SHSHSHSHSH”  then… he shouted again. He had to leave.  Except, he didn’t want to.  He didn’t want to stay but he didn’t want to leave either. I don’t know why.  Did he want to share his pain of not knowing where our car was with such a large  audience?  Or was he in the clutches of his obsessive compulsive disorder that  forced him to remain until the end of the presentation despite the fact that he really wanted to be somewhere else searching for our car.

I got up first hoping that Robert would follow. He didn’t.  Then Jan got up, but Robert tried to pull him down to sit. Nonetheless,  Jan began to leave and this time Robert stood up too. He still hesitated.  There were three other people in our group.  We, the parents,  wanted them to stay and listen to the short introduction, but Robert believed that they should do what we did.  We were supposed to stay together. Nonetheless, we left without Margaret, Jack, and Cynthia.  We sat on the bench next to the door, trying to regroup our thoughts and decide what to do next.  (I have to say, I was shaken.  This has never happened before.  Still, I wasn’t surprised. ) As Jan and I discussed what to do, Margaret, Jack, and Cynthia joined us.  I felt guilty for spoiling their visit, but Robert was clearly relived.

Soon, we joined the other visitors leaving the lecture, We walked toward the Independence Hall.  We passed through the building quickly.  Just to make one picture for Robert to contemplate it later.  We waited outside a few minutes for other members of OUR group and started moving back toward the hotel.

We walked slowly talking to each other about the city, history, and …the car.  Robert kept asking but not as often as before and not as dramatically and loudly as he did during the lecture.  He walked with his father, a few steps behind me.  Then he moved quickly to the front. I got ready to take his hand when  I noticed that Robert was already holding Cynthia’s hand.  Not mine, not his dad’s but Cynthia’s, the person he just met not even two hours before. He was calmer.  Much calmer.  The missing car was still on Robert’s mind but the frequency and the amplitude of the repetitive waves of his demands seemed to approach null.

I walked next to Cynthia and Robert watching him holding her hand, letting her hand go when other people were passing them and then searching for it again.

I tried to understand  Robert’s emotions.  Was he holding Cynthia’s hand because she was the one who knew Philadelphia best and her knowledge of the city translated  into assurance that everything would be fine?  Was he trusting our group for the simple reason that all members stayed with him in his moment of weakness?  I know  that Robert doesn’t like to scream or misbehave in public and although he cannot help himself at the given moment, when the crisis pass,  he feels sort of ashamed.  Maybe he was relieved that in this company he didn’t need to feel ashamed as everybody half understood and half felt the reasons for his actions. Did he sense the empathy surrounding him?  As I kept asking myself those questions, Robert kept holding Cynthia’s hand. 

April 22-25, 2016

Without Reference Points

A few years ago, our family went to Ellis Island.  We listened to a 15 minute long speech, watched a movie about history of the Island, and walked through a few (not all)  halls.  Yes, the visit was probably a much shorter than the average one, but nonetheless it was both pleasant and instructive.

Before the trip, Robert read a book from True Books series about Ellis Island.  The book had many pictures.  We also found some images on internet. It helped that my husband and I were there before so despite many  changes we knew what to expect. Thus we were able to tell Robert in a few, short sentences what he might see there.  So when Robert was walking through the Museum, he might have felt as if he entered the illustration he had seen a few days before.  He might or might not recognize the spaces, but they were not entirely alien to him.  I believe that he was not feeling lost because he had acquired a few reference points that helped him to feel in, at least partial, control of the space and activities.

Sadly, we didn’t prepare Robert for a trip to Philadelphia.  Neither my husband nor I have visited this city in the past.  Although we knew vaguely the history, we couldn’t connect places – buildings and streets  with people and events. I had not read with Robert two other True Books – one about Constitution and one about Declaration of Independence.   We had them, but we didn’t read them before the trip. And thus we arrived without any reference points that we could offer  Robert  to help him avoid the feelings of unpredictability and uncertainty.  We didn’t tell Robert what to expect because we didn’t know that either.

Robert knew only two things –  he would sleep in a hotel and  he would see Liberty Bell.

It is true that during most of our stay in the city, Robert was preoccupied with the car.  He didn’t see where the car was parked, and thus became anxious.  I wonder, however, if this feeling of anxiety would lessen had Robert knew what to expect and what was expected of him. If he had a few reference points…

Are the abilities to recognize reference points and to use them to make more advanced connections the true goal of all the teaching and the essence of all the learning?  

April 21, 2016

Luxury That Wasn’t

It seemed like a good idea at the moment.  We were tired after driving for a couple of hours. Robert was anxious and his anxiety drained some of our energy.  We felt slightly lost in the city which none of us had visited before.  The directions to the garage seemed confusing.  We just wanted to get to our room, relax, and make the plans for the day. Robert and Jan took our baggage inside while I handed the car key to the driver.    As I said, it seemed like a good idea at the moment.  The little luxury we needed and certainly deserved would make our trip a little easier.

Except it didn’t. When we left the hotel to walk to the Liberty Bell, Robert noticed that the car was not there where we left it.

“Car, car, car”, Robert asked.

“Car is in the garage”.

“Car car car”

“Car is in the garage” I repeated.

“Car, car, car” Robert kept asking.

“What about car?” I asked.

“In the garage.” answered Robert and kept calm for a minute or two.

And then the whole cycle of questioning, answering, and keeping calm for a short time repeated itself over and over.

Robert called for our car during walk to Liberty Bell.  He called for the car in front of Liberty Bell while his photos were being taken.  He calmed considerably while waiting in line for the presentation prior to the visit to Independence Hall.  He seemed fine when we entered the room, but as soon as the lecture started, Robert with his more dramatic voice called, “Car, car, car.”  After he did that second time, I asked him to leave with me.  He didn’t want to leave, “No, no,no” , but he didn’t want to be calm either.  So with some commotion we all left.  Yet again, on the way back to the hotel – all six blocks from Independence Hall Robert kept demanding, asking, begging for car. But at least not as frequently as before and not as loud as he did in the Independence Hall.  He felt much calmer in the restaurant as he stuffed his mouth with fries and hamburger. After all it was probably impossible to make emotional appeals for car with mouth full of food. Two hours later, however,  snuggled comfortably in his bed, Robert was falling asleep with softly but clearly articulated word, “Caaaar”.

I should have known.  I should have remembered how desperate Robert felt when, almost 20 years before, we had left our car at the mechanic. He couldn’t talk at all at that time so he used other ways of communicating his wants. He tried to pull me back to the garage so I would retrieve the car. He tried to run back to retrieve the car himself.  I should have remembered that ten years ago, he kept asking, “Blue car, blue car”  the whole time, three days,  the car was in the body shop. I should have remember how reluctant he was to give the car key to the mechanic whenever there was a need to change oil or do yearly inspection.  Over time, Robert accepted the idea that the car has to be left with the mechanic from time to time.  He also never had problem with leaving the car at any of the parking lots when we drove there together.  He knew where it was and where to go to get it back.  That was not the case with valet parking. For Robert that was an equivalent of car disappearing.  No wonder he was anxious.

I should have known.  I should recall the past experiences to envision possible problems.  I didn’t . As I said, I was tired and a little confused.

April 21, 2016

When, during our trip to Philadelphia, Robert was exposed to new arrangements of familiar elements, he exhibited  the behaviors I knew from the past.  I dealt with them years ago and believed they were extinct.  They weren’t.

In the past, I discovered that Robert’s universe was made of separate bubbles. Each bubble consisted of specific places, concrete people, and a particular set of rules characteristic to that sub-world.

1.  Each person has assigned her own place  -in the world and shouldn’t encroach  on another person’s space. Robert tried to push me out when I visited HIS classroom.  He attempted to block his teachers from entering OUR home.  While we, the parents, could take him to almost any restaurant, only his respite providers (any of them) could take Robert to McDonald’s. 

2. Each person also had  special role in Robert’s life.  When outside, Robert followed Amanda example to the T’s.  She climbed on a rock, he did too.  She walked on a fallen tree, he walked on it too. She jumped in a funny way from the curb, he returned to the sidewalk to emulate her movement.  But when Amanda reached for the bottle of juice which was placed too high for Robert (he was shorter then she at that time), he got mad. It was not her job to do so.  Only parents could give him his juice.  It was their prerogative and their responsibility.  

3. Robert could go to any place provided that after each visit we returned home.  Then he could go again. The home was the center connected to other bubbles, but the remaining bubbles were not supposed to be connected to each other.

4. The things should remain in the same places.  All things, but specially our cars.

Over the years, we managed to help Robert expand his worlds and connect many of those separate sub-worlds into more complex but hopefully more uniform universe replacing narrow rules with more general ones that allowed for flexible adjustments. However, during our trip to Philadelphia Robert seemed to recreate his old model of the universe.  When we didn’t act in accordance with this model, Robert tried to remedy  that by constantly remaining us about the problem and, when we didn’t react properly, he protested.  

Hotels and Friends Don’t Mix.  Or Do They?

I had told Robert that we would first stop at  my friends’ house and then we would go to a hotel.   I repeated that information a couple of times.  So we stopped at friends’ house and that was not a problem.  The problem was staying longer.  Just long enough to eat lunch.  My friends prepared  rich vegetarian lunch for us and a few items for Robert.  Robert had arugula and chips and his favorite ginseng green tea.   Robert didn’t want chips.  He ate the whole bowl of arugula and drank a large glass of tea. That he ate anything at all was a surprise in itself as usually in other people houses, Robert eats only what we bring with us.  He ate very quickly, even before the rest of us managed to put great macaroni salad and vegetable Sloppy Joe on our plates.  Somehow, he managed to wait anxiously until we finish our dishes.  He agreed to drink coffee  we offered him hoping it will take him a few minutes to drink. But he chugged it in a few seconds.   Then he went on helping cleaning the dishes believing that the empty table would be a clear signal to leave.  Almost every other minute, Robert was repeating, “Hotel, hotel, hotel”, to remind us about the main goal of the trip which was staying in hotel. We could stop at our friends’ house, but the hotel was where we were supposed to be.

As we drove with our friends to the heart of Philadelphia, Robert kept pointing at them and repeating, “House, house.”  letting us know that they should stay in their house.  I  tried to explain my friends that this is nothing personal just an example of Robert’s ontology, in particular, his strong conviction  that people belong to certain places which shouldn’t be changed.  At least not before Robert learns more about them and builds additional routes for them to travel. That, however, requires learning new paths and that is not always easy.  Every time we encounter Robert’s rigid assumption about the rules of the world, we use it as  another opportunity to expand his world by presenting new connections.   It is often uncomfortable at the given moment, but it is the lesson Robert won’t forget and thus he will accept easily similar arrangements in the future.

Next day, just before exiting Philadelphia Robert said, “House, house.”

“Yes, we are going home”, I assured him.

“No, house, house.”

I understood. “Robert do you want to go home or to Maggie’s house?”

“Maggie’s house” he replied.

Robert’s world grew wider and more flexible.   Now it included our new friends, their house and new connections.

April 13, 2016

A few days ago, I wrote a post in which I reported on the topics we had studied that day. It was rather a boring post, but necessary for me as the easiest way to get back to writing. Unfortunately, I forgot to save it or to publish it.  So the post vanished.  I will try to recreate it now having the same purpose in mind:  state where we are now and go back to writing from that point on. 

When Robert was 4 or 5 years old, he used computer program Sound It Out Loud. That was his first and… the last contact with phonology. Later we used Edmark reading program.  Robert was able to recognize and read the whole words. Except, his pronunciation was faulty.  The level of his distortions, however, was not discovered until Robert’s instructors (including myself) stopped looking at the words Robert was reading.  When they saw the words, Robert’s approximations of the sounds seemed sufficient.  When they didn’t see the words, they couldn’t understand what he read.

It got even worse, when later on, Robert was learning to spell the words.  Spelling requires naming the letters.  The names sounded differently than the sounds they were supposed to produce. I had the feeling that Robert’s clarity of speech not only didn’t get better, but to the contrary, his verbal utterances became more muffled. The words were distorted while sounds were omitted completely or squeezed together into undecipherable murmur.

And of course, Robert kept making errors which I – person without proper experience –  didn’t even notice.  I was glad that my “discovery” of how to help Robert pronounce two, three, or more syllable words by synchronizing each of the syllable with an appropriate movement of the arms – making a swing for two-syllable, triangle for three syllables, square for four –  slowed Robert’s verbal expressions and made the  articulation  clearer.  I didn’t notice, however,  that Robert kept omitting the last consonant in each of the syllables.

As I wrote in one of my previous posts we had to return to CVC words to address those ending sounds.  Robert had to read a word (or name the picture), I didn’t see and I had to repeat it.  That worked on approximately half of the words.  Moreover, Robert all too often would not give me a proper clue by, for instance, saying the first sound.  What he could do was to spell the word. Somehow I knew that this was not a good approach.

Just last week, I realized how confusing my efforts to teach Robert proper articulation have been when I talked to Claudia.  Claudia, speech pathologist by trade and a generous volunteer by inborn spirit, knew Robert well.  She brought up the subject of phonological awareness and suddenly everything became much clearer.  So we went back to sounding them loud – two letter words, three-letter words, and those words  Robert stumbled upon during other activities.

February 28, 2016

I have been writing this blog for four years now.  I started on February 26, 2012.  I thought I had something to share.  I felt, I learned so much about teaching and learning.  After all, I made so many mistakes that it would be hard not to learn at least what was and what continues to be wrong in teaching.  Feeling that I know something worth sharing was an excuse to write and to advertise some of the e-mails on a few e-mail lists.

But the main reason for writing was to beg others, those I don’t even know yet, to take upon themselves the challenge of helping Robert to navigate his life when neither my husband nor I are still there to do so.  As my husband and I are getting older we think more and more about Robert’s future and feel that it might be rather harsh.

It is hard to understand Robert and know what he is able of doing.  He listens to others but he seems not to.  He talks to others but is not understood.

That carries the risk that the people in Robert’s future would put more and more restrains on him.  Who will take him horseback riding?  Who will ski with him?  Who will go on a long, Cape Cod bike trail?  Who will ask him to learn new skills for a new job?  Who will continue to talk to him even when he doesn’t answer?  Who will take him on a trip to another National Park or another city?  Who will know what food would result in an onset of  allergy or in an upset stomach with severe pains?  Who will be attuned to him well enough to understand that he has a full range of emotions and longings?

In many of the posts written on this blog I tried to present the fuller picture of Robert.  I longed for  somebody to respond with healthy curiosity and deep empathy.

I have mostly failed.

February 17, 2016

We came home after a trip to Supercuts and short stop at McDonald to pick up Crispy Chicken Sandwich at the take out window.

-“Take off your jacket, but don’t take off your shoes”- I told Robert. “In a few minutes we will go to the station to pick up dad. There is just enough time to eat your sandwich.”-

Robert took off his jacket and ate the sandwich while I was checking e-mails. Just then the phone rang. Jan told me that the train was not moving as there was a problem on the tracks.  He asked us to wait for his call.

“Robert, we cannot go yet.  We have to wait for dad’s call.  His train broke.”  I passed the message to Robert changing one detail to make the situation easier to understand.  Robert sat down and then got up.  “Robert we have to wait for dad’s call.” I repeated

Robert partially understood the message as he sat down again. He stayed seated for almost 5 minutes, then he got up and tried to pull me out of my chair.  Not forcefully.  He was just letting me know that we should go to the train station as there was enough waiting already.  I responded with taking my shoes off, to let Robert know that there was going to be more waiting.  Robert picked the left shoe and attempted to place it on my left foot.  I didn’t let him.  I asked him to sit and relax.  I gave him choice of doing puzzles, word searches or watching TV.  He hesitated and chose watching TV. And he did, for another 5 minutes.  He was ready to go and expected me to do the same.  With scorn on his face, he stood silently next to me for another few minutes. I called Jan asking him to talk to Robert.  Jan did.  Robert sat again and stood up again. “Dad, Dad”, he said.  “Train, train” Then again, “Dad, Dad”, followed by “train, train.”  And again, and again, and again.  I went back to the computer.  Robert followed me carrying my shoes and repeating the same words over and over.

I got angry. ” Stop that.  It is obnoxious.  We are waiting  for the phone call.  We are not going anywhere until Dad calls. ”  I shouted and I regretted it immediately. Robert seemed hurt, but took my shoes and carried them to the closet. Just then Jan called.  The train moved and with a great relief so did we.

We waited no more than an hour.  It was a very hard time for Robert and thus for me.  I asked myself why Robert could wait long hours at the airports but waiting at home became so difficult.  There were times when we waited at the train station for almost half an hour and Robert didn’t show any signs of distress.  Why then, he was so anxious when we waited at home for the phone call?  Was that because we were distance away from the place of dad’s arrival. maybe according to Robert waiting for a train should happen at the train station not at home.  Was that because Robert became confused by contradictory statements I made. I told him that we would leave soon and then I told him to wait for the call from Dad.  Maybe because it was an open end waiting without knowing for how long.  Or was Robert anxious because he missed his father and wanted him to come home safely as soon as possible? 

February 16, 2016

Robert loves skiing.  He loves to ski with his father, going fast  from the North Peak of the Sunapee Mountain. He loves skiing with NEHSA instructors from the South Peak of the Mountain. He goes slower, following instructors  as they are taking left and right turns. With his father, Robert doesn’t listen, just skis down in a wedge position.  He feels safer this way and thus becomes more adventurous. With his instructors Robert attends to their directions and by trying to imitate their postures and following their paths he becomes more conscious skier.

When he skis with his father, Robert uses his own slightly outdated equipment. When he skis with NEHSA, Robert uses boots and skis that belong to the organization.  No problem so far.

But when Robert brings his equipment with him, he doesn’t want the one that belongs to NEHSA even when he has the lesson that calls for better and safer  skis.

Let me correct myself.  It is not that he doesn’t want NEHSA boots and skis.  Robert CANNOT have NEHSA stuff.  That would break one of Robert’s unwritten rules.  Not just Robert’s rules, but the rules of the universe.  No wonder that he protests loudly and forcefully. Everybody is wrong trying to break the rule.  Robert knows how it has to work. So, he tries to convince others of his righteousness the only way he can.  He screams, he keeps putting skis back. He protests some more. And more.

We could back off and cancel the lesson.  Robert could ski with dad on his own pair of skis.  Except, that would be a failure.  At least, I would consider that a failure. So I asked Jan, Robert’s father, to put the skis back in our car, parked far away from the lodge.  I gave Robert’s ultimatum. He either skis on NEHSA equipment or he returns home without skiing at all. I was serious.  I was heartbroken, but I was serious.  On one hand I knew that leaving the mountain without skiing would mean that even more important rule had been broken, so I did hope Robert would concede.  On the other hand, I wasn’t sure of that.  Moreover, I knew that given Robert’s determination, the ensuing battle of wills would be difficult and exhausting as Robert would use any sign of hesitation to reinforce his position.

It took another ten minutes before Robert gave up, put on skis from NEHSA and went with his instructors toward the ski lift.

Surprisingly, he had a very good lesson.  He listened, he followed. Although from time to time he reminded his instructors that there was an unsolved ski issue, he didn’t perseverate as much as he was capable of doing.

Moreover, he liked the skis. He liked skiing with instructors who besides being good teachers were also exceptionally patient and understanding.  Under their supervision, Robert practiced turning, improved his posture, and reduced the angle in his wedge aiming at parallel position of his skis.

I wonder if he also learned that some rules have to be broken to assure that other rules are upheld.

February 2, 2016

In my efforts to introduce Robert to as many aspects of human experience as possible I often lose balance.  I emphasize one subject or one skill while neglecting others.  Had Robert had an ability to extrapolate or to generalize what he seemed to learn during our sessions to other environments or situations that wouldn’t cause any problems.  However, I have the impression that the moment Robert leaves our table, his mind switches to a different mode of functioning. It is as if someone move the flashlight from one screen to another.  The problem is, I don’t know what that second screen presents.

When a typical child learns calendar skills, he soon utilizes those skills almost everyday either anticipating events in the future or recalling the past happenings. That means that the child puts all the occurrences on his or her personal time line. Although in the past, Robert had an ability to find what was the date a few months before or a few months after another date, presently he is unable to do that.  He didn’t have opportunity to utilize this skill.  His planning for the future is limited to the following day and his ability to recall the past doesn’t travel further back than one or two days.  Only lately, Robert grasped the idea that some activities happen on the same day of the week and he starts looking forward to them.

Sadly, I have been doing it all wrong.  Instead of asking Robert what date will be three and five days from now, I should help Robert extend his ability to anticipate those events that are important to HIM so he could more consciously  wait for them, count the time till they happen, or plan those special days in the future himself.  The calendar should be a tool helping Robert understand the passing of the time as it relates to his life. Without that understanding the abstract calendar skills are useless.

Two day ago, Robert and I were working with Functional Routines for Adolescents & Adults, Home,  reading a section about cleaning the bathroom. Robert was looking at the four pictures while I read texts related to them.  We did the same thing almost a year ago. At that time, we read the text on the beginner level while recently I read the slightly more complex text on the intermediate level. After I read  Robert, with the help of the pictures, answered a few questions from the book.  I reviewed the steps taken by the boy doing the cleaning in the workbook and told Robert that we would do similar things but in a different order. And then we began.  Robert put on the gloves. That was not something the boy in the workbook did, but given Robert tendency to eczema, it was necessary step.  Robert needed a few suggestions and a few corrections, but with the exception of the bathtub,  he did most of the cleaning by himself.

I planned that the following day we would clean second, smaller bathroom, but we didn’t, because of a few changes in our schedules.  We would do that today. And maybe then our teaching-learning will regain some sort of equilibrium.

January 31, 2016

On Saturday, we all drove to Sunapee Mountain.  We arrived around noon.  Robert and his dad skied from the North Peak.  Meantime, I found out that there was a possibility of an afternoon lesson at the NEHSA, New England Healing Sport Association, so I secured one for Robert. He happily went with two instructors.  Almost two hours later, he returned as happy as before.  By introducing “Follow the Leader” game, the instructors enticed Robert to make many left and right turns and thus narrow the wedge between his skis. They said that Robert was listening most of the time, slowing down when asked to do so.  Nonetheless, he kept saying, “Fast, fast, fast.”

On a way home, we stopped at the service area by highway 93.  Robert ate a cheeseburger and a few sweet potatoes fries and didn’t insist on getting regular fries.  That is success.  At home, he initiated laundry realizing that he didn’t have pants for the next day. However, he was too tired, to wait for the end of a washing cycle.  He fell asleep long before he could put wet clothes in the drier.

So all the four pair of pants were wet the following morning when there was time to leave for horseback riding lesson.  Well, that is a lie.  I purposefully didn’t dry the pants in the morning. There was a new pair of pants bought a months before, which Robert had never worn. And I wanted Robert to put that pants  on. Five seconds sufficed to convince Robert to wear this pair together with a new shirt. This might  not be a highlight of Robert’s day but it certainly was a highlight of mine. Usually, it takes much longer to persuade Robert to put on something new.

Robert was leading the horse inside the arena and outside in the corral all by himself.  He trotted by himself. He followed all the directions given by instructor. He did almost everything by himself, because of two reasons:

1. He knew how to do everything the instructor asked him to do.
2. The instructor believed in Robert’s ability to perform the tasks, she taught him before.

Sadly when teachers/instructors (well, and mother)  don’t believe in Robert’s ability to do something independently, Robert doesn’t have a chance to prove them otherwise and thus he doesn’t progress.