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.

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?