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.

Father

My son’s biking lesson started on endless boardwalk of New Jersey shore. We drove there in the evenings and walked along our children’s bikes.  Amanda rode her bike with training wheels while Robert kept getting off his tricycle every two seconds.  Our goal for Robert was to keep him sitting for 10-20 yards. My husband was bent over the bike with one hand on the handlebar and the other on the back of the seat. He was pushing the bike while  simultaneously trying to prevent Robert from escaping. When Robert was 2 years and 3-4 month old, he learned to tolerate sitting on the bike and being pushed by others.  I would risk stating that he even found it enjoyable. .

When he was three years old Jan started teaching Robert to turn pedals.  We had already moved to Massachusetts apartment complex which, with many narrow and winding streets, was not a good place to teach bike riding.  Harvard Arboretum in Jamaica Plain was much, much better.

First, Jan placed himself in front of the bike facing Robert , said, “Do this”, and demonstrated movement with his leg. He bent   and immediately straightened it with a  forceful exaggeration. Robert didn’t move.  Next, Jan pushed Robert’s leg down to make the bike move a little.  He repeated this series of actions hundred times. Next  day, another hundred times.  It took a few seasons before Robert started to push pedals on his own.

What surprised me about Jan’s teaching  was the fact that he used a  technique similar to discrete trails  (but without reinforcement if you don’t count the fact that bike moved a little with every turn of a pedal).  Since my husband avoided successfully all ABA trainings,  I must assume that he came up with this method on his own.

Well, Robert pushed pedals but he still didn’t steer the bike. The fact that we  didn’t realize that Robert needed a visual cue directing him where to go interfered with learning.  Robert wanted to ride on the edge of the asphalt, along the grass line. But my husband always placed bike in the center of the path believing that this position would give Robert more space to maneuver.  Wrong.  As soon as my husband took his hand of the handle bar Robert aimed at the grass at the right side of the road. One training wheel was on the asphalt while the other was on the grass.  It is possible that Robert already knew how to steer the bike, but because he always ended up with one training wheel on the grass we assumed that he didn’t know what he was doing. So my husband felt obligated to take the control of the bike again and bring it to the center.  When we finally realized what the problem was, Jan simply changed the position and instead of walking on the left side of Robert, walked on his right side.  This allowed Robert to ride close to the edge but not on the edge.

I don’t remember how Robert learned to slow down and/or stop the bike.

For a few more years he was still riding with training wheels.  When Robert was almost eleven years old, my husband went to a one day training on teaching children to ride without training wheels.  It was a free workshop offered by Ladders.  I don’t know what my husband learned there but the following weekend he took Robert to a church parking lot and managed to teach Robert to keep the balance on the bike without training wheels.

Of course,  Robert still had to learn changing gears, stopping at the stop signs, and many other skills.

I am writing this because today is Father Day and New York Times printed an article on parenting a child with autism.

It irritated me terribly.    I do  understand that other people have different attitudes/feelings/approaches toward their children with autism.  I don’t understand why those approaches are displayed prominently in  the  media.  Why it is more appealing  for editors to empathize with a father who suffers because of the issues related to his child with autism than to learn from the father who just do his parenting job with endurance, patience, and …great satisfaction?

Brace Yourself

For two years I have been bracing myself for the anticipated clash with Robert.  There was a game placed in the middle of the rug in Robert’s bedroom.  Rather large, blue, plastic contraption was a big nuisance as it required careful maneuvering around it on the way to the bed or to the door.  Moreover, the game included different size marbles which tended to released themselves whenever someone accidentally kick the game’s structure.  When that happened, Robert had to find all the marbles.  The fact that even one marble was missing caused Robert to be in such a distress that the whole family had to come to the rescue  at 1 or 2 at night and search for the shiny sphere under the  bed or desk and  behind the nightstand or the bookcase.  Robert would not sleep knowing that a marble was lost and alone  in the crevices of the dark room,  far away from its compartment  and the company of other marbles.

After two years, I do not remember any more  how to play the game.  I am sure I played it with Robert after I had bought it.  I know that you should put the marbles at the top and release them by turning a lever.  As the marbles rushed down one would win and one would lose. I have forgotten what factors decided  on winning or loosing. The rules of the game had long been gone.

Although Robert made sure that no part of the game was missing, he, nonetheless,  has not shown any interest in playing the game. Maybe that had something to do with my decision to use this toy  as a great tool to teach  concept of “cause and effect”. Somehow, Robert was not thrilled that I shouted “cause” when he moved the lever and “effect” when the marbles rolled down.

A few times during those two years,  I picked the toy from the floor and placed it on the dresser.  Robert always returned it to the floor.  That further convinced me that it would not be easy to permanently remove the game from the rug.  Robert, who considered himself a guardian of his environment, would react with a heartbreaking despair and a vehement protest.  I would be no match for his strong will.  So I kept on postponing the moment of unavoidable confrontation and tried to brace myself for the battle. Meantime, we kept on tripping on that blue contraption, falling many times, and waking up in the middle of the night to search for the missing marbles.

Finally, I decided it was enough.  I was tense but ready to stood my ground despite envisioned tantrums, screams, and protests.  I suspected that Robert might try to take the toy out of my hands by force.  If that would have  happened I would not scuffle with him, but throw the toy away following day, when he was at school.  Everything else I was ready for.

I called Robert to his bedroom and calmly started, “Robert, this toy should not be here.  We tripped over it many times.  It is dangerous.  It should go on this shelf.  Right here.  Please, put the toy on the shelf.”

In the next 5 seconds:

Robert looked at the toy.

Picked it up.

Placed it on the shelf.

In the next five months:

I felt like a fool.

Negotiations

The only thing that Robert disliked more than throwing old and broken stuff  away was buying new items.  He didn’t mind going to the store and trying on new shoes, but he would not allow us to take them to the cash register, pay for them, and bring them home.  Since we (the parents) didn’t feel we were able to handle major tantrum at the shoe store, we developed two stops shopping.  First, we would go to the store with Robert to find a right pair of shoes but refrained from buying it.  Then, we would return without Robert and purchase that pair.

Now, we just had to convince Robert to wear these shoes.

Well…

We knew that persuading Robert to wear the new shoes  would be a major challenge so we  waited until the weekend to deal with the problem. On Saturdays, Robert used to go for a long walk at Blue Hills and then to his favorite Outback Restaurant.  So making this outing contingent upon wearing a new pair of shoes seemed like a good idea.  If he wanted to go for a walk he would have to put on a new pair of shoes.  Robert complied.  He put on a new pair and then immediately took it off returning to the old one. “No walk.” I said.  Robert took the old shoes off  but was clearly in distress.  He was getting more and more upset.  He made a series of heartbreaking noises, and those sounds  melted both my husband’s heart and his resolve.  He wanted to give up. Robert sensed his father’s weakness and quickly put on old shoes again.  We already had struggled for 40 minutes or more, and now, my husband’s hesitations convinced Robert that his chances for winning this battle increased significantly.

I have to say.  I was mad.  My husband and I talked about this before and we both decided that we had to be firm. I knew it would be difficult  and now  I felt betrayed. My ally was changing his position in the midst of the fight.  Discussing the situation at this moment would be disastrous. We couldn’t show that we disagreed with each other. I felt that we couldn’t back off either.  I took a deep breath and relatively calmly persuaded my husband to leave it to me. I asked him to go to his computer and wait until Robert is ready.   Jan withdrew to his office.  That didn’t make Robert happy.  He already knew that his dad was easier to convince (manipulate). So without him Robert was even more distressed, sad, and mad.  He put his old shoes yet again.”No walk.” He took them off just to put them on  again. “No walk.”  He took them off.  Next, he brought the pair of his mountain hiking shoes.  “No walk” .  Then he brought one old, one new shoe.  “No walk”  He was negotiating with me by trying to find a middle ground. He was furious that I didn’t accept any of the suggestions he was making.  When I think about this today I feel that it was a very funny event. Yet at that time it was a real struggle. It lasted over 2 full hours.  Finally, Robert gave up.  He put on his new shoes and his father took him for a walk and to Outback.

During this walk Robert felt defeated and was not happy about that.  From time to time during the walk, he let Jan know, that it was not his choice to part with the shoes which seemed to be as significant and important to Robert  as parts of his own body. Every few steps he  made   sounds expressing his suffering.  Outback, however,  helped to cheer him a little.

But the next day and every day after that he didn’t have any problems with wearing these shoes.

I have to add that the shoes were comfortable, fitting Robert better than the old pair.

Even more importantly, from that time on, five minutes sufficed to convince Robert to wear any new pair of shoes.

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.

Parenting the Sibling.

I have not written anything since May 10.  My “other” child, child without autism, had a commencement ceremony.  I flew to Oregon and  spent a few days in Portland. It was my first time away from Robert, with the exception of 4 day emergency trip to Poland. I felt strange. I didn’t even think about Robert yet I felt alienated from myself and out of place.  I followed the crowd of  other parents, clapped when other people clapped , walked when others walked.  I saw the exhibit of her work, read her thesis.  I talked to a few professors about Amanda.  I felt they knew more about her than I did.  I didn’t know what to say, but I talked a lot anyway. I helped with cooking and packing.  After my daughter either  disposed of or packed everything she gathered over the last four years,  we drove east hoping to get to Boston in our 12 years old Honda Civic.  We stopped to look at Multnomah Falls. We took pictures.  In  Baker City we found out that the lower engine of our car was damaged.  Since there was no other way out of Baker City we kept on driving. When we reached Boise, with the help of Goodwill, junk yard, and bike store  we got rid of the full trunk of stuff,the bike ,and the car.  We sent four huge boxes home and packed everything else in four suitcases.  We didn’t want to fly yet.  It supposed to be our road trip. Mother and daughter. In a rented  car we drove to Denver.  This time, only Amanda, my child without autism, was driving.  I drive with a left foot gas pedal.   It can be removed when someone else is driving and put in when I drive.  Yet, in the whole USA there is no car renting company which would rent a car with such a  pedal.   So only Amanda could drive.   And she did.    We talked a lot because we had a lot to say to each other and because we didn’t want to  fell asleep. We missed exit for Shoshone Falls.  We turned back to see them.  We took pictures.  We stopped a lot.  We were tired.  Both of us.  The 60+ miles after  Ogden were the hardest. We stopped at Days Inn in Evanstone, we watched Doctor Who, we hung out.   The next morning Amanda got a speeding ticket.   According to the state trooper she went 20 miles over speed limit.  I don’t know. I doze off for a few minutes.   Getting a ticket was a good wake up call. Our adrenaline jumped up and we didn’t feel sleepy any more.  We stopped to get gas,  eat, and look at the mountains. We talked a lot.  Mostly about  this, that, and nothing.  Just the fluff.  We were stressed and relaxed at the same time. We reached Denver before it got dark, drove through its streets, got to the hotel, returned the car to Avis, watched Doctor Who again, and talked about this and that.

As,the following morning, we were waiting for a plane, I realized that during those nine days we spent together we had a very different connections than we had ever in the past.   In the past Amanda often had to  be in the background. To make it worse, she understood perfectly why we, her parents, had to pay so much attention to Robert.  She understood this all too well.  And acted as if that was fine with her.

When she was younger I signed her for piano lessons, ballet, and art classes.  Not so much because I wanted her to develop all the talents she had, but because I felt that other people could give her more than I could.  Today, I don’t want to remember how  full of tension and stress our home was then, but I felt that for Amanda  being somewhere else was preferable to being home.  I am not so sure of that today.

I  couldn’t concentrate on what she was saying. I often interrupted her because I had to attend to her brother.  For many reasons, which luckily disappeared as Robert grew and changed, our trips to movies, restaurants, museums were always tense.

When she had  problems at school I helped her in the worst possible way explaining,for instance, math with poisonous impatience.

Even when we managed to go somewhere together – museums, independent movie theaters, cafes I was constantly checking time to make sure we would return home in time to relieve the respite provider.

Of course, she understood then and she understands now.  Still, she had her own problems, she tried to hide them.  Maybe she didn’t want to overwhelm me, knowing how on edge our lives were.  Maybe she knew that I wouldn’t be able to help anyway?

In the plane she read, while I  dealt with the  guilt, for so little time spent together, for impatience, lack of attention.  I realized how little I know about her.  And yet during all these years, not only the last four years in Portland, she managed to shape herself without my interference and/or despite my interferences, into a wonderful person I know so little about.  She is smart and yet seems lost, seems vulnerable and yet is strong.

She is alright.

And yet…