Looking Through Empty Frames

It was nothing really.  Robert JUST wanted to put the glasses away in their place in a display box.  He did not want anything else.  Just this.

But

He was very dramatic.

Extremely dramatic.

And loud.

And forceful.

And quick.

The fact that the new pair of frames  was removed from its rightful place in a display box and was put in the optometrist’s hands meant that the world was falling apart.  Even worse, it might signify that he, Robert, would get a new pair of glasses.  After all, he knew from past experiences, how those things usually ended.

So as soon as the optometrist placed the glasses on the table,  Robert grabbed them and carried to the display an to the wall.  After he did that, I asked him to bring the glasses back.

Reluctantly, with many loud protests, he did. Then he took them again and carried back to the enclosure on the wall.  SO, I asked again to bring them back. As reluctantly as before, with as many grunting noises as before, Robert brought them back to the counter.

Asking Robert to bring the frame back was the only way to rectify situation.  He would not let anybody else do that.  Only he could bring them back.

The optometrist was filling a computer forms and from time to time looked at the frame.  It was clear that this would take a few more minutes.  Too long.  I encouraged Robert to wait outside with his father.  But Robert could not abandon his responsibility as a guardian of the Universe when the empty hook in a display box was warning him  of the encroaching chaos. No, Robert couldn’t leave. not yet. Getting more tense and anxious, he watched optometrist’s writing on a computer until it was just too much to bear. Suddenly, Robert reached over the counter trying to pry the frame from optometrist’s hands.  We did not let him. A short struggle.  Robert calmed down. I kept explaining why he could not do that.  Short sentences, one or two arguments, artificially assertive voice.  I repeated the same sentences two or three times. I wasn’t sure what effect my explanations had on Robert.  It seemed that he at least calmed down.  The optometrist noticing how a big deal was that to Robert wanted to give him the glasses.  But since Robert was already accepting the outcome – either as a defeat or as a lesson – there was no point of giving him glasses.

After optometrist placed the frame in the envelope and hid it somewhere, Robert went for a short walk with his dad, but returned exactly when I was choosing frames for myself.  He watched me trying a couple of new frames, bringing one of them to the counter, and passing it to the optometrist.  Robert was tense, but did not protest.  He was  not convinced that it was the right thing to do, but the protests were to exhausting and left unpleasant aftertaste.

It had to be said, that Robert doesn’t like to be dramatic, he doesn’t like to grab things from others.  Such episodes drain him and leave him confused if not ashamed for at least two days.  He doesn’t like doing things he feels forced to do.

I did not expect this outburst to happen.  Seven years passed since I witnessed similar behavior.  I believed it would not happen again. I believed Robert knew better.

After all there was a steady progress.  For instance, for at least year,  Rober thas been able not only to buy clothes, but also  try them in the store.  I did not assume that getting a new pair of glasses would be different.

I don’t know all the triggers or variables that control  Robert  actions and reactions.  But I  know the next time will be easier.  As strange as this might seem, this was a lesson to Robert, that taking the frames from display doesn’t lead to a disaster.   It was also a lesson on how to buy a new pair of glasses.  Robert will remember the sequence – trying frames, choosing one, giving it to the optometrist, looking through strange binoculars, waiting for forms, and  paying.

As hard as this Monday’s  afternoon  was for Robert and me, it was a step forward. Lesson taught and lesson learned.

I just wish that the lesson was simpler and much, much easier.

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Surviving Mayhem

The three months long mayhem came to an end.  All the basement walls were replaced with  mold resistant sheetrock and most of them was already painted.  The carpet was removed to let vinyl tiles cover the basement’s floor. Not without problems, a new shower was installed in the bathroom.   A few minor touches are still needed to complete the work, but they do not affect the overall presentation of the basement’s family room.

It was a hard time for Robert.

In my  post Antipodes I described Robert’s first encounter with a contractor. Knowing that  it would not be possible for contractors to remove the walls with Robert in the house, we took Robert skiing.  Of course when Robert came home, he noticed missing walls and was not happy about that.  “Wall, wall, wall”, he kept repeating and we kept answering with vague promises that walls will be installed next day.  Suffice to say, that Robert asked many, many, many times for the walls. To counter his perseveration, which after first hundred times, was getting on our nerves , I used the old trick, which helped me in the past.

“Wall, wall, wall.”

” What about wall?”

A second of hesitation. “Tomorrow.”

“You right.  The contractors will put the wall tomorrow.”

I had found out in the past, that when I responded to Robert’s obsessive repetitions with a question and thus changed them  into a dialogue, their frequency decreased.

Almost every day, I used the same strategy, to help Robert deal with new changes, and help myself deal with Robert’s reactions.

It was a winter vacation week.  A few times I took Robert to Sunapee Mountain for adaptive ski lesson at NEHSA.  Upon our return, Robert immediately inspected the house and noticing unwelcome changes demanded explanations. It could be another wall, which missing, it could be a missing thermostat, or temporarily covered by new wall, old electric outlet.  For the first ten times, we kept giving straight, short answers. “Thermostat is broken.  We have to buy a new one. The outlet is under the wall.  Tomorrow we will fix it.”

After ten times, when Robert already knew the answers but kept his fixation alive, we went back to dialogue.

“Here, here, here.” Robert did not know the word “thermostat”  and to let us know what he meant, he was knocking on the wall, where thermostat used to be.

“Oh, you mean thermostat?”

Unclear imitation followed, “Stat, stat”

“What about thermostat?”

“Is broken.”

“You right, thermostat is broken.  We will buy a new one tomorrow.”

“Store.”

“Yes, we will buy new one in the store.”

I have to say, that the unwelcome changes in the basement forced Robert to initiate many more conversations and at some point I started enjoying our relatively intense communication. However, at some point,  Robert got used to the mayhem and stopped obsessing about it. That meant that he also stopped asking.  His anxiety decreased, because  every day after coming from school, he was met with clear improvement that did not require any additional explanation. Because there was no need to ask, he didn’t.

One of the hardest thing for Robert to tolerate was the moving of the furniture. Soon however, we found a middle ground.  As long as the TV, VCR, and DVD player reminded connected and watchable from the sofa, everything else was less important.

Robert, who as a self-proclaimed guardian of his environments attempts with all his might to keep his surrounding unchanged, not only survived three months of pandemonium, but accepted all the alternations in the end.

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.