Lessons Learned in Philadelphia Lesson 3

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?  

Lessons Learned in Philadelphia. Lesson 2

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.


Lessons Learned in Philadelphia, Part 1

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.



Back to Basics. Phonological Awareness

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.