Much Better Days

January 31, 2016

On Saturday, we all drove to Sunapee Mountain.  We arrived around noon.  Robert and his dad skied from the North Peak.  Meantime, I found out that there was a possibility of an afternoon lesson at the NEHSA, New England Healing Sport Association, so I secured one for Robert. He happily went with two instructors.  Almost two hours later, he returned as happy as before.  By introducing “Follow the Leader” game, the instructors enticed Robert to make many left and right turns and thus narrow the wedge between his skis. They said that Robert was listening most of the time, slowing down when asked to do so.  Nonetheless, he kept saying, “Fast, fast, fast.”

On a way home, we stopped at the service area by highway 93.  Robert ate a cheeseburger and a few sweet potatoes fries and didn’t insist on getting regular fries.  That is success.  At home, he initiated laundry realizing that he didn’t have pants for the next day. However, he was too tired, to wait for the end of a washing cycle.  He fell asleep long before he could put wet clothes in the drier.

So all the four pair of pants were wet the following morning when there was time to leave for horseback riding lesson.  Well, that is a lie.  I purposefully didn’t dry the pants in the morning. There was a new pair of pants bought a months before, which Robert had never worn. And I wanted Robert to put that pants  on. Five seconds sufficed to convince Robert to wear this pair together with a new shirt. This might  not be a highlight of Robert’s day but it certainly was a highlight of mine. Usually, it takes much longer to persuade Robert to put on something new.

Robert was leading the horse inside the arena and outside in the corral all by himself.  He trotted by himself. He followed all the directions given by instructor. He did almost everything by himself, because of two reasons:

  1. He knew how to do everything the instructor asked him to do.
  2. The instructor believed in Robert’s ability to perform the tasks, she taught him before.

Sadly when teachers/instructors (well, and mother)  don’t believe in Robert’s ability to do something independently, Robert doesn’t have a chance to prove them otherwise and thus he doesn’t progress.

Not so Good Days

January 31, 2016

Robert had a rough week at his program. Maybe because he was not feeling great.  Maybe antibiotic irritated his stomach. Maybe he was just bored with the task he had to complete. But of course, the biggest problem is that he cannot tell what is bothering him.  Instead his  OCD like behavior is spiking.

For two days during last week, he kept asking obsessively his job coaches to write in his notebook.  Since the instructors  write in his notebook just before Robert leaves for home I assume that Robert just wanted to go home.  He believed that by writing in his notebook, the instructors would accelerate the flow of time. So he kept asking over and over, “Notebook, notebook, notebook.”

It would be so much better if he could say, “I feel sick.”,”I want to go home.”, or even “I am bored.” ,”I need a break.” “I’m tired”.  but he doesn’t say that.  He says, “Notebook, notebook, notebook.”

Unfortunately, his frustration with the slow-moving time is all too easy to see and impossible to be soothed.









Different Perspectives, Various Perceptions

December 6, 2015 – January 24, 2016

I worry about Robert’s future. I worry every day. I teach Robert hoping that whatever he learns now, would make his future a little easier, nicer, and safer. But, of course his future also depends on the people who will have more or less contact with him in the years to come. Their approaches to  Robert, their empathy or lack of it, the images they form of Robert – all of that can either help Robert or it can destroy him.

Winter 2010

Robert was brought home on his school bus 30 minutes earlier than usually. Moreover, he was accompanied by his special ed teacher and the vice principal of the high school.  I rushed outside and anxiously asked what had happened. The answer was short and snappy, “He just wanted too many popsicles.”

-“Was he aggressive?” I asked already anticipating the dreaded answer.

I learned, that  he  grabbed the teacher’s arm

That is all what I learned. Nothing else.

I tried to  understand the circumstances in which the aggression happened. I called the teacher. I called the principal.  I called the special ed director. Nobody wanted to elucidate me on any details that led to this behaviors.

Since I didn’t learn events that lead to Robert’s aggressive behaviors I didn’t know how to react and what to tell Robert. He couldn’t tell me.  After all, Robert never explains himself.  To the contrary, it is I who helps him understand his actions and their consequences. But to do so, I would have to know all the details and those were concealed from me at that time. So I didn’t do anything, but sent Robert to school that day and the day after. I kept sending Robert to school for a few more weeks.  I knew he was in distress, but I didn’t know what was the reason for it.  One day in March, I was called to pick Robert from school.  When I saw him, he was walking with his teacher in a very busy hallway. He was hitting his own face with the full force over and over.  He seemed terribly unhappy.  He was crying either from pain or from being lost and misunderstood. Nobody would want to see a child in such a state. Nobody.

I removed Robert from this classroom. At home he quickly recovered.

After more than two years, I learned the circumstances of Robert’s behavior.

As he and other children were waiting in the classroom for the school bus, Robert was given a popsicle.  He consumed one and kept asking for another one. Maybe he got up from his chair.  The teacher told him to sit and Robert returned to his chair and sat down continuing waiting for the bus.  The teacher, however, went back to the freezer, took out one more popsicle and approached Robert’s chair. Waving popsicle in front of his eyes kept mocking Robert, “Popsicle, popsicle, you want another popsicle? ”

That is when Robert tried to grab the popsicle.  As I understand it now, Robert followed the teacher grabbing her arm as she tried to put popsicle back in the freezer.

No, I don’t condone Robert’s behavior at all. Not at all.  Had I known about it then, I would have taken a few steps to make Robert understand the ramifications of such actions and I would try to prevent similar behavior to be exhibited in the future.

Five Years Forward

Fall 2015

Robert came home from his Day Program.  In his notebook I found a long description of what had happened that day.  While walking through hallway during his lunch break, Robert noticed fish crackers in one of the rooms he walked by.  He loves those crackers, but he cannot eat them, as they cause, for unexplainable reason,  severe stomach pain a few hours later.  Still, he grabbed a bag of those crackers.  The instructor quickly took it back but Robert tried to retrieve it again. In an effort to do so, he grabbed and pinched the arm of instructor. He didn’t get the crackers, so he tried to get them another way. He stole 25 cents from the instructor’s purse and ran to the wending machine to purchase the crackers. It didn’t work, of course.  The bag of crackers cost more than what he stole.  I also learned from this note that later, Robert calmed down considerably and followed the rest of the day’s routine.

As I said, I didn’t condone Robert’s behavior. I thought about it. We talked about it. With my help, Robert wrote a long note to his instructors to tell them that he was sorry, that he understood what he did wrong. We went to his Day Program together with bunch of flowers.  Robert seemed very concerned as he read the long letter.  I had to give the instructor the copy of a letter, as Robert’s pronunciation was such that only a few words could be understood. The instructor who listened patiently seemed slightly embarrassed.  “Oh no”, she said when Robert finished, ” We were just feeling sorry for Robert because of his distress and confusion.”

I felt my heart melting.

Robert exhibited almost the same behavior in both situations and yet the reactions were so very different.

Those reactions were what caused Robert to fail in one setting and succeed  in the second.

He couldn’t trust his teacher in 2010.  But for Robert being in a setting in which he couldn’t trust anybody, meant losing the ground under his feet. He became lost, bewildered, and utterly miserable.

Although now, he still has and causes some problems (mainly because of his OCD like behaviors) he does trust the adults who surround him in his Day Program and he comes home not only happy but, well,  pleased with himself.

Dangerous Intimacy ?

January 20, 2016

When Robert was very little, I used to kiss his hand whenever he cried.  One day as he was sitting in a circle in his special needs private preschool, the girl, sitting next to him, began crying. Robert, five years old at that time, took her hand and kissed it. The girl was so surprised (shocked?) that she stopped crying.

When Robert was six or seven years old,  he was visiting the first grade classroom for an hour or two of weekly inclusion.  Despite the fact that Robert was accompanied by the teacher from his special needs program, the main classroom teacher treated him as if he were her responsibility the same way the other children were. (This is not as natural teacher behavior as it should be. Many main classroom teachers believe that when the student has an assigned aid, the teachers are relieved of any responsibility for such a child and thus rarely address him or her directly.)  That fact was not lost on Robert, who adored her and showed it in the only way he could:  He hugged her.  The teacher, one year short of retirement, couldn’t help noticing the paradox.  Robert, the little boy with autism, was the only child who hugged her in her many years of work.

For many years, Robert had a habit of kissing me (and at least one more favorite person) in the Eskimo style, by rubbing his nose on mine.   I suspected that besides demonstrating the need for closeness, Robert was also trying to sense my emotions or get some kind of reassurance whenever he felt a little uneasy. This kind of affection, had never bothered me until I was made aware that both the behavior and my acceptance of it were considered to be  highly inappropriate display of emotions.  At least two people – one working for a state agency, one working for … ARC found it offensive and/or suspicious. I reacted with bewilderment and the lingering uneasy feeling. Nonetheless,  I had never tried to stop Robert from expressing his need for closeness in this specific way.  By the time, Robert turned 18, this behavior disappeared.

When Robert was 15 years old and joined the special need classroom in public high school, he was the youngest student there.  One day, I was told that one of the girls, kissed Robert.  There was nothing I would have wanted more than Robert being liked and kissed, but I was petrified.  I was really petrified. I was afraid that if Robert return the affection or kiss someone who didn’t wish to be kissed he might get into very serious trouble.

A few years forward, Robert was presented with The Relationship Circles, Level 1, Social Boundaries program,   I don’t think Robert understood much from this presentation. Maybe he was too young and  because of his poor social exposure he couldn’t relate what he was told to his past experiences. The program presented issues related to appropriate and inappropriate forms of contacts with others depending on their closeness to the individual in the center. The program aimed to teach how to respond to OTHER people behaviors when it is correct and when it is not.

The program didn’t, however, offer any clues to a person with developmental disability of how to appropriately initiate closer relationship with someone he or she might like.





Hiccups on the Number Line

January 19, 2016

Today, I made another observation about genesis of Robert’s errors while adding integers with the help of a pnumber line.

As long as Robert could mentally add or subtract absolute values of the numbers, he didn’t make any mistakes in his calculations.

He correctly answer problems such as -12+(-15), -20+7, 8+(-10)

However, he hesitated and/or kept guessing the answer to such operations as: -19+31, -17+ (-38). The level of difficulties required to mentally subtract 31-19 or add 17+38 compounded with the need to decide on the sign, resulted in confusion.

I believe that such puzzlement cannot be addressed through more practice with the number line alone.  I think, it is time for Robert to grasp the fact  that when the numbers have opposite signs he is subtracting them (well, their absolute values) and when they have the same signs he is adding them (yes, yes, their absolute values).

Still, I am reluctant for practical purpose of teaching Robert mechanics of adding integers to involve the term “absolute value” in this context. This is a phrase which sacrifices simplicity for the sake of mathematical correctness. That creates additional difficulties for someone whose language is still in the early stages of development and every additional word baffles instead of elucidating.

Back and Forth on Number Line

January 18, 2016

For a few months now, Robert and I have been occupied with adding integers.  He was busy counting steps forward or backward depending on the sign of the number while I was searching for ways to help Robert generalize the skill to those numbers that didn’t fit on the line with its twenty five units starting with negative 12 and ending with 12.

Although I presented Robert with formulas for three cases of adding integers:  (both negative, one negative and one positive when the negative one has larger absolute value, and one negative and one positive when the positive one has larger absolute value), I had doubts that Robert can remember and properly apply the rules expressed through overly long sentences.

So I tried something else.  Instead of placing numbers from -12 to 12 on the number line I placed tens starting with -120 and ending with 120. As long as I asked Robert to add -30+20 or -40+(-50) Robert, counting by tens. moved appropriately one way or another.

I hoped that if Robert knows that -30+20=-10 then he might notice that -30+ 17= -13 or that -27+20=-7.

But Robert didn’t notice.

I had to divide each segment into 10 smaller ones – millimeter long at best, so Robert could keep counting.

So he still relied on mechanically counting and not on doing the proper operations in his head.

Now, I just draw a line with a zero in its center. Above this line I drew a few arrows to the right with plus signs above them and a few arrows to the left with a minus drawn above them.

Below I write a few problems starting with the same number.

-7+8=   -7+(-8)=  -7+4=   -7+7=

Robert has to point to the place where -7 could be (just any place to the left of zero) and then move backward or forward and come with an answer.

He cannot count by one as there is nothing to be counted on the number line, he has to do all those operations in his head deciding by himself if the answer is moving past zero in one or another direction or if it moves farther away from zero.  Thus, he has to add or subtract absolute values and decide on which side of zero the answer is placed.

We do just a few operations like that every day.  Robert still has problems with going in the right directions.  When, however, he chooses the correct direction he quickly comes with the proper answer.

The fact that Robert chooses too often the arrow with the wrong direction is  a result of the habit, he has never conquered in general (he manages it in some specific situations but not in all).  Robert answers too quickly before applying all the information he gets. To be blunt – Robert answers without thinking.

If I slow him down, stopping him from automatic answer, his performance improves. That means just covering the problem for a second, asking him to repeat the operation from his memory.

Why is it so important for me to have Robert dto those operations correctly?  Of course, I want Robert to know more and understand more.   But what motivates me mostly is my wish that Robert learns to generalize skills – from the numbers he can see on number line to numbers he can see only  in his mind.

What Else Can I Do?

January 16, 2016

One of the reasons I have difficulties writing lately is the lack of clarity of what else I can do to help Robert be prepared for life without us, his parents.

It seems that he needs to learn so much more than what he knows or does now.  I also realized that he can learn very little outside of our home. yes, he is surrounded by nice people at his programs.  Yes, he seems happy whenever he attends any of the programs ran by three different agencies and two other organizations. I love his happiness.  But the happiness without gaining knowledge, skills, and understanding is short lived.  It is a fool’s gold.

Robert in his own way, understand that too. That is why he is not protesting our daily learning routine. He does want to learn.  He wants to understand more. He wants to do new things.

The problem is that I don’t know what what else I can or/and should teach him.  There is so much, he still has to learn and I have so little opportunities to help him.

During the holiday season, with his sister visiting, I let Robert spend as much time with her as they both were able to tolerate and/or enjoy. Walking with Amanda and her friends was an important experience.  Following Amanda’s directions while making origami with her and her friends was priceless. I didn’t study with Robert at all. We only played a few board games and did puzzles together.

After the holidays, we went back to daily routine. Robert seemed relived by return of “normalcy.

We continue with learning about human body.  We continue with talking in sentences, asking questions, and explaining.  We returned to the same series of books Functional Routines but we stepped up from the basic to the intermediate level of text and questions.

We still practice with Apraxia cards.

Robert practices counting – just to make sure he didn’t forget the algorithms.

But then , I realize that Robert should learn other things as well.  So last two day we began again going together to grocery stores. I ask Robert to find a few items while I wait around cash registers.  Yesterday, Robert found three gallons of water and a bottle of his favorite Arizona Ice Tea.  He tried to find All detergent, but couldn’t as the store ran out of it.

Today, he just went to buy three boxes of tissues , then he returned to cash register, placed them on the belt and with my help used his ATM card (still uneasy about his pin).  With slight prompts,  he also took $10 to have it for his Friday’s lunch.

At home, he set the espresso machine, but was reluctant to make frosted milk, as he couldn’t figure out how close he should keep milk to the stem pipe.

It seems we did a lot, but Robert needs so much more.