Talk to Them, Listen to Him

Every Wednesday, on a way home  from Robert’s adaptive  horseback riding we practice ordering a sandwich in Subway (his favorite chain). “It-al-ian”

-Louder. –

-It-al-ian-

Not much louder. Syllables are clustered together in a hard to recognize sound.

Making a game.  Repeating it over and over as if we were screaming the name of a soccer team during a match. “It-al-lian, It-al-ian, It-al-ian!”

It should come easy.  It almost does. “It-al-ian”

In the Subway, Robert’s production of “Italian”  regresses to a scrambled sound.  The confused employee looks at me for help and translation.  I turn to Robert and draw a triangle in the air to remind him that the word has three syllables and he should space them accordingly.  Robert says it better.  But the employee attention has already shifted to me.  Like so many people before him, he doesn’t give Robert a second chance.

With a hardly hidden mixture of frustration and irritation I refuse to translate. “‘You have to listen to him, I point to Robert, I won’t be always here to interpret what he says.”

Robert is lost and uncomfortable.  He repeats the word over and over but with each utterance it becomes less clear.

Time for plan B.  I ask Robert: “Do you want French or Italian bread?”  Robert replies: “Italian.” Since there is no French bread on the menu, the employee understands.  He asks, “Long or short?”

Robert says quickly, “long, long, long”.  Too quickly for the employee who, yet again, turns to me for help and asks, “Short?”.  I am both depressed and angry.  It is true that Robert’s speech is hard to understand. But there is also no effort on the part of other people to understand him.  The employees at this and other fast food restaurants don’t show any interest in engaging in communication with Robert. Maybe they are just simply lost.

So I continue with Plan B which is to give Robert two choices hoping that he would repeat the chosen word in such a way that the employee understands.  I ask again, “Robert, do you want looong or short? This time I move my hands out for “long” to demonstrate the longer span, and bring them together for “short”.  Robert says, “Long” and imitates my movement.  The employee understands.  It already took too much time, so I just continue with plan B, asking questions myself. “What cheese do you want, American or provolone?”  It doesn’t really matter because Robert likes both and chooses sometimes one, sometimes the other.  Today he chooses American and the employee understands.

“Robert, do you want pepperoni or ham?”

“Pepperoni.

The difference in sounds is such that there is no room for error.  And yet not once before when Robert pointed to Pepperoni and said “pepperoni” he was not understood.

I go on, “Do you want it toasted? YES or NO? ”

“Toasted, toasted.”

Now, I just ask for a few leaves of spinach on top.  I do that myself because  Robert is not really sure he wants anything green on his cheese. Still, he accepts my decision.  Maybe because protesting would be too hard and would take too much time.  He is hungry after all and wants to eat.

The employee asks Robert what he wants to drink.  Although Robert pronounced the word “coke” with a short “o” sound, the employee does understand.  There is of course one more question to ask, which I forgot about. So the employee utters it, “For here or to take out?”.  Robert understands and repeats a few times with a strong conviction “here, here, here”.  Then he pays with his debit card, places his tray on the table, and goes to the fountain to fill his cup with ice cubes and coke.

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Changing the Path

I often state that Robert exhibits many behaviors that seem similar to those associated with Obsessive Compulsive Disorder.  At the same time I am reluctant to say that Robert has OCD.  There are two reasons for my reluctance:

1. Robert has never been diagnosed with such disorder.

2. I associate Robert’s OCD like behaviors with Robert’s  efforts to establish structure of his world and rules that govern it.

Because Robert’s language was almost non-existent, and it still remains very limited, it could not be used as a tool allowing flexible manipulation of the environment.  The world without language is static.  The changes seemed dangerous to Robert as they indicated that the pillars supporting world’s  structure are missing. So Robert used to protest vehemently any change in the established order of the universe.  And that meant,switching from the winter jacket to the spring one, throwing old and /or broken things away, buying new clothes, moving the furniture to different rooms, and many other changes. 

There is no doubt in my mind that Robert’s “OCD like “behaviors are related to the limitations imposed on his cognitive functions by his almost non-existent language. It is also possible (just possible) that,vice versa, Robert’s  perception  of his environment as unchangeable became a factor that negatively impacted on Robert’s language.  

Based on a few observable behaviors I have tried  and I am still trying to reconstruct Robert’s model of his universe as it relates to his obsessiveness and his language.

Almost as soon as our family moved to Massachusetts we became members of Mass Audubon and visited a few Audubon’s parks, including our favorite, Moose Hill in Sharon.  Moose Hill has many trails which can be accessed either directly from the parking lot or after crossing one of the two streets passing through the park. Soon we discovered patterns of Robert’s relations with space.

1.We could always go to a new park and Robert was ready to go to any of the trails.  It was not surprising.  Since that was the first visit, there was no opportunity to establish rules that would manage Robert’s approach to the park. Every path had the same appeal to Robert.

2. When we parked our car close to the Vernal Pool trail at Moose Hill, Robert immediately followed the path that started a few steps down from the car.

3.When  we parked our car farther from the Vernal Pool trail, Robert turned toward the street exit from the parking and followed the Billing Loop.  That was fine as long as we didn’t want to leave the Billing Loop and enter the  Summit Trail.   Every attempt to do just that met with Robert’s  strongest protests. So strong  that we kept  giving up and continued on Billing Loop. Over and over.

We would probably never had a strength to oppose Robert if it had not been for Robert’s sister, Amanda.  She had enough of the Billing Loop.  She was ready for something new; she wanted to conquer Summit.   And she had a right to make a decision.  Too many times,  she gave up on what she wanted because her wishes were not compatible with Robert’s.  Since she  was the wiser one, she had to surrender her wants and needs because she understood all too well the family dynamics.  She did that when she was five, and seven, and nine.  And it was enough.

My husband and I decided to go on the Summit Trail.  We told Robert that many times.  He probably didn’t understand any way.  But repeating many times that there would be a change, that we would go on a different path was, nonetheless, very important.  This way we were introducing language as an agent of change.  Of course I didn’t realize at that time how important it was.  It just seemed a right thing to do even though it was not very logical to expect Robert to understand what we planned for that outing.  I also had a map of all the trails in Moose Hill.  Yet as soon as we got to the place where the Summit Trail began Robert protested and ran ahead along the Billing Loop.  We called him, he stopped and waited for us.  We waited for him.  He screamed a lot while  we kept calling him to come back.  He ran away from us, then he stopped and waited.  It lasted a while.  Amanda wanted to give up on the Summit Trail.  The price seemed too high.  Of course I expected the “extinction outburst” and was prepared for all that screaming and running, and flopping on the ground and … you name it.  At this point we couldn’t surrender.  We ran to Robert and holding him by both arms tried to walk with him back to the entrance to the Summit trail.  Not easy.  He used his legs to trip us. Each of us lost a balance a few times.  Robert was screaming and protesting.  He seemed to have eight limbs, wiggling out of our hold.  The good thing that the park was almost empty.  It would be much harder do the same thing in a crowded place with well-meaning people around.  This time there was only one woman walking by.  Still, I felt the  obligation to explain to her what was going on.  At some point my husband, Jan, decided to carry Robert alone.  Seemed easier and safer.  It wasn’t. There were reasons why Robert was called “little Houdini”.  He could wiggle out of any hold.  I showed Robert a map.  He looked curiously but didn’t change his resolve to continue on the Billing Loop. Again, we both held his arms and tried to walk with him. It seemed to take forever, but the distance we passed before Robert calmly decided that it was OK to walk on the Summit Trail was less than 40 yards.  Twenty yards on a Billing Loop and around 15 on the Summit.  During the next 2 or 3 miles of the walk Robert demonstrated how good hiker he was.  He didn’t complain even though we sort of got confused a few times and didn’t know which way to go.  Luckily we had a map with us.  We used it not only to point the place where we were to Robert but to find our way back to our car.   We never had the same problem again.  We let either Amanda or Robert decide which path they wanted to take. Sometimes when we get to the place the trail divides we ask Robert which way he wants to go next.  He points and says “This way”.  Not much more. If he chooses the same path more than two times, I tell him that now it is my turn to choose and we are going on a different trail so Robert doesn’t get used to just one way.

This episode helped me later deal with many other OCD-like behaviors.  Of course, I do choose my battles.  And of course, since Robert is now bigger  and stronger I have to apply different methods.  I cannot anymore  pick him up and carry him.

But I learned that

1. It is important to use words even when I am not sure if Robert understands them.  He will eventually make a connection between words and events.  Specially when those events seem as dramatic to him as they were to us.

2.You cannot allow a child to be all the time in control because you are afraid of the consequences of challenging his will.

3.What I considered “his will” was not really that but a mental prison Robert was in. I didn’t break Robert’s will by forcing him to go on a different path, but liberated him from his cell.

4.I found out how helpful reading maps can be for a child like Robert.  Later, I understood that reading maps can help to develop reading comprehension.

On Language. His and Mine

A few months ago Robert was classifying vehicles. He was supposed to place  a picture of a vehicle in one of the three categories : air, land, or water.   I didn’t anticipate any mistakes.  Based on my previous experiences with teaching Robert, this activity should be almost mechanical.  I was using it only as a visual support for practicing speech.   While placing each object in a proper column Robert was expected to say for instance, ” Airplane goes in the air” . To my dismay, Robert was making mistakes.  Many of them.   I couldn’t understand. He should have known. Yet he didn’t. Why?  I decided to present Robert with just two categories . I removed “land” leaving only “air” and “water”.  No errors.  “Air” and “land” many errors.  “Land” and “water” no errors.

It was clear, Robert couldn’t differentiate between objects  moving through the air and those moving on land. Did he forget? I showed him proper answers and repeated the task.  No improvement.   Was I mistaken in assuming that he knew what vehicles could fly?  I decided to check if he could hand me all the flying objects. He could.  No errors.

I replaced the word “air”  with the word “sky” . Now the categories were: sky, land, and water. Robert classified all the vehicles correctly.

I understood my blunder.  I assumed that if Robert knew what flew in the sky he should have known what traveled through air.  Since he knew that airplanes flew in the sky he should have known that “air”, in this context,  meant “sky”.  But then I recognized that he also knew that the airport was on the land. So…

How confusing!

Utilization Behavior

I am glad that I learned about UTILIZATION BEHAVIOR when Robert was already 17.  For a few previous years I suspected that Robert’s behavior was controlled by his environment. I attributed this enslavement by the environment to Robert’s  severe language deficits.

Language gives flexibility.  Language allows for modification.  Language provides directions. Language is  a tool . Language is a shield.   But Robert didn’t have language.  Because of that,  Robert had to deduce all the relevant information from his surroundings.

When the bicycle was in the garage Robert ignored it.  But when the same bicycle was left in a driveway Robert “read” the message from the environment and act upon it.  He got on a bike, crossed the street, and rode alone to the church’s parking lot, the place where his father had taught him to ride a two wheeler.  He did it “only” twice as only twice the bike was left in the driveway by the member of the family.  Each time his sister, Amanda, took another bike and rushed after him.  Robert followed Amanda home without any reluctance.  Why should he resist?  He had already fulfilled the command expressed to him loudly and clearly by the placement of the bike in the driveway.

Robert didn’t feel urge to light matches when he saw them on a shelf, although he could reach and get them.  But when someone left matches  next to a candle he had to lighten it.   He “utilized” the matches and the candle the way they should be used. Still,  the candle was near the curtains, the curtains near the bookshelf.  Although  the fire was mostly extinguished  before firemen arrived a couple minutes later  the smoke and the uneasy feelings lingered longer.

It became obvious to me that  the environment was controlling Robert’s behavior.  The question is, why didn’t I become aware of that fact  before those dramatic events took place?

Well, I didn’t feel the need to analyze everyday, repetitive events.  If they struck me as unusual I found it sufficient to rely on a few artificial explanations based on stereotypes about autism .  Moreover, Robert had complex relations with his environment.  He was a guardian of his surroundings.  He had to maintain it by bringing it to the previous balance when something was disturbed. For instance, empty space on a shelf over the coffee maker was calling on Robert to give it back the missing phone.  Objects out of place were requesting that Robert puts them back in the right drawers, closets, cabinets,or shelves. Those behaviors could be considered just “tiding up” or… signs of obsessive compulsive disorder.  Only after incidents with a bike and matches I view them as the examples of Robert serving his environment.

If I knew more about utilization behavior when Robert was younger I would have considered it a  result of the frontal lobe damage and felt unable to alleviate it.

Luckily, I didn’t know.  So Robert and I spent  a lot of time squeezing new words between Robert and objects that surrounded him.  Those little words “up, under, first, later, if, then” and many other did what words supposed to do.  They imposed a new structure with passable roads, tunnels, and bridges over Robert’s environment.  They showed that he could move between any two objects, modify them, or even … ignore them.  Those little words  considerably lessened the pressure coming from the environment and ( to some degree) liberated Robert.