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? 

February 16, 2016

Robert loves skiing.  He loves to ski with his father, going fast  from the North Peak of the Sunapee Mountain. He loves skiing with NEHSA instructors from the South Peak of the Mountain. He goes slower, following instructors  as they are taking left and right turns. With his father, Robert doesn’t listen, just skis down in a wedge position.  He feels safer this way and thus becomes more adventurous. With his instructors Robert attends to their directions and by trying to imitate their postures and following their paths he becomes more conscious skier.

When he skis with his father, Robert uses his own slightly outdated equipment. When he skis with NEHSA, Robert uses boots and skis that belong to the organization.  No problem so far.

But when Robert brings his equipment with him, he doesn’t want the one that belongs to NEHSA even when he has the lesson that calls for better and safer  skis.

Let me correct myself.  It is not that he doesn’t want NEHSA boots and skis.  Robert CANNOT have NEHSA stuff.  That would break one of Robert’s unwritten rules.  Not just Robert’s rules, but the rules of the universe.  No wonder that he protests loudly and forcefully. Everybody is wrong trying to break the rule.  Robert knows how it has to work. So, he tries to convince others of his righteousness the only way he can.  He screams, he keeps putting skis back. He protests some more. And more.

We could back off and cancel the lesson.  Robert could ski with dad on his own pair of skis.  Except, that would be a failure.  At least, I would consider that a failure. So I asked Jan, Robert’s father, to put the skis back in our car, parked far away from the lodge.  I gave Robert’s ultimatum. He either skis on NEHSA equipment or he returns home without skiing at all. I was serious.  I was heartbroken, but I was serious.  On one hand I knew that leaving the mountain without skiing would mean that even more important rule had been broken, so I did hope Robert would concede.  On the other hand, I wasn’t sure of that.  Moreover, I knew that given Robert’s determination, the ensuing battle of wills would be difficult and exhausting as Robert would use any sign of hesitation to reinforce his position.

It took another ten minutes before Robert gave up, put on skis from NEHSA and went with his instructors toward the ski lift.

Surprisingly, he had a very good lesson.  He listened, he followed. Although from time to time he reminded his instructors that there was an unsolved ski issue, he didn’t perseverate as much as he was capable of doing.

Moreover, he liked the skis. He liked skiing with instructors who besides being good teachers were also exceptionally patient and understanding.  Under their supervision, Robert practiced turning, improved his posture, and reduced the angle in his wedge aiming at parallel position of his skis.

I wonder if he also learned that some rules have to be broken to assure that other rules are upheld.

February 2, 2016

In my efforts to introduce Robert to as many aspects of human experience as possible I often lose balance.  I emphasize one subject or one skill while neglecting others.  Had Robert had an ability to extrapolate or to generalize what he seemed to learn during our sessions to other environments or situations that wouldn’t cause any problems.  However, I have the impression that the moment Robert leaves our table, his mind switches to a different mode of functioning. It is as if someone move the flashlight from one screen to another.  The problem is, I don’t know what that second screen presents.

When a typical child learns calendar skills, he soon utilizes those skills almost everyday either anticipating events in the future or recalling the past happenings. That means that the child puts all the occurrences on his or her personal time line. Although in the past, Robert had an ability to find what was the date a few months before or a few months after another date, presently he is unable to do that.  He didn’t have opportunity to utilize this skill.  His planning for the future is limited to the following day and his ability to recall the past doesn’t travel further back than one or two days.  Only lately, Robert grasped the idea that some activities happen on the same day of the week and he starts looking forward to them.

Sadly, I have been doing it all wrong.  Instead of asking Robert what date will be three and five days from now, I should help Robert extend his ability to anticipate those events that are important to HIM so he could more consciously  wait for them, count the time till they happen, or plan those special days in the future himself.  The calendar should be a tool helping Robert understand the passing of the time as it relates to his life. Without that understanding the abstract calendar skills are useless.

Two day ago, Robert and I were working with Functional Routines for Adolescents & Adults, Home,  reading a section about cleaning the bathroom. Robert was looking at the four pictures while I read texts related to them.  We did the same thing almost a year ago. At that time, we read the text on the beginner level while recently I read the slightly more complex text on the intermediate level. After I read  Robert, with the help of the pictures, answered a few questions from the book.  I reviewed the steps taken by the boy doing the cleaning in the workbook and told Robert that we would do similar things but in a different order. And then we began.  Robert put on the gloves. That was not something the boy in the workbook did, but given Robert tendency to eczema, it was necessary step.  Robert needed a few suggestions and a few corrections, but with the exception of the bathtub,  he did most of the cleaning by himself.

I planned that the following day we would clean second, smaller bathroom, but we didn’t, because of a few changes in our schedules.  We would do that today. And maybe then our teaching-learning will regain some sort of equilibrium.