June 29, 2014
On a way from New York City, I understood, I think, a reason why Robert still doesn't grasp what is weekend and what are weekdays. Of course, the wording is not precise. All seven days are week's days. And the ends of the week are also confusing. They are next to each other and, to make matter worse, the first day of the week comes after the last day of the week. Of course, if someone has a good short memory, then he or she can just memorize which days make a weekend and which days are weekdays.
But Robert doesn't have a good short memory. He needs reason, he needs connections, he needs patterns.
In the past, I emphasized that Sunday comes after Saturday by drawing the days of the week in a circle or a spiral. Circle doesn't have ends, so the word "weekend" didn't make much sense. If in America the Monday was the beginning of the week, then both Saturday and Sunday could make an end to a week. Meaning of the word 'weekend' would be clear. But in America week starts on Sunday...
It really doesn't make much sense, to build one concept on two imprecise and vague others.
For now, I asked Robert to write names of the days on a long line segment and then circle the words at both ends of the line. Robert circled Sunday and Saturday, then... he went to bed. He was very tired after two end days of the last week.
On Saturday morning, Robert went to meet his Walking Club. Unfortunately,the Club met somewhere else, so Robert hiked on a 2 mile long trail with his dad. Between noon and 2 PM, Robert managed to do laundry, complete independently a few easy worksheets related to animal shelters, and helped packing for a trip to New York.
On the way, we stopped at the Old Seaport in Mystic and spent an hour and a half walking on its grounds and visiting ships and stores.
On Sunday, Robert, with his grandmother and us, his parents, took a ferry from Liberty Park in Jersey City to Ellis Island and Stature of Liberty. It is much quicker to get on a ferry in Jersey City than in Manhattan where long lines scared us off on a few previous years. It took us no more than four hours to visit both islands, walk around a little, watch half an hour-long movie about immigrant experience on Ellis Island, and eat lunch with the view of Stature of Liberty.
I was afraid that the old, white and black documentary on immigrant plights would cause Robert to either make noises or request leaving the theater. But Robert was calm all the time. I don't know what he understood, as he never explains himself. What I know is that his behavior could be called - mature.
He got scared when the ferry we were on made sudden, loud beep. Robert responded with one loud scream.
Later, in the car,as we zigzagged through the streets of lower Manhattan amid closed streets, huge crowds, and a bumper to bumper traffic, with the speed of a sleepy snail, Robert made a few grunting noises of irritation. "I feel the same way," I said, "Too many cars, too many people and it is hard to find a way. I am tired too. I understand what you mean and how you feel. I understand." I lied.
I don't understand and I don't even know how to gain such understanding. I can only project my own feelings and my own reasoning on Robert.
Even I know that this is not enough.

Stress and Dull Teaching.

June 28, 2014
It was a rather tiring week. I was tired. When I am tired, teaching and learning is more bumpy. It is harder for me to specify short or long-term goals. In other words, I don’t know what I am teaching for and what possible benefits to Robert our efforts could bring. I know that Robert would answer questions and complete worksheets. What I don’t know is how would the topics we addressed relate to Robert’s life in general. I don’t know either how I could help Robert connect those “desk” exercises to his “real” life needs.
I have to admit that, for a last few days, I forced myself to study with Robert. Often, we started late in the evening. I couldn’t create the proper atmosphere and I was disappointed with myself.
Those are not the features of a successful instructor.
Robert and I just trudged through a few lessons from Reasoning and Writing, a few units from Functional Routines for Adolescents and Adults, a set of lessons from Singapore Math, and a few short texts from a reading workbook. As we went on, I felt more and more disappointed noticing how many opportunities I have been wasting because of my inability to make the teaching “ALIVE”.
That is such an important distinction between creating good, uplifting opportunity for learning, for opening another gate to the world, and dull, forced hammering the wall without even knowing what is behind.
Let me make sure, that distinction in no way relates to the student’s abilities or lack of them. It all relates to the teacher’s skills. Not general skills, but the skills as they are demonstrated that particular hour, day, week.
It was a tiring week for me and it was a week of dull teaching.

Four Poblanos for Robert, One for Dad. Or…not.

June 27, 2014
Since the time Robert discovered the taste of poblano pepper, stuffed with mozzarella, covered with flower, dipped in egg, and pan-fried in hot oil, he has been always eating four of them at a time. If there was the fifth pepper, it belonged to dad. As the poblano covered with golden crust was being removed from the stove, the four of them landed on a big plate for Robert and one on a small plate for dad. If the dad was home, Robert dutifully carried the poblano to his dad’s desk, and then ate the remaining four. It was different, when dad was still at work.
It is true that Robert placed the poblano in a plastic container and put it in the refrigerator. As he was doing that, he showed the box to me and said, “Dad, dad.”
A couple of times, he took the container out, showed it to me again, and repeated the same words, “Dad, dad”. I replied,”Yes, this poblano is for dad. He will eat it when he comes home after work. ” Robert returned the container back to the fridge. But somehow, a few hours later, the poblano was gone and the empty container was in the dishwasher.
It seemed that poblano called on Robert the same way the honey jars called on Winnie the Pooh. Their allure was too strong for Robert’s tummy to resist.
Robert does like candies, and in particular Twix candies, as much as he likes poblano. But the bag of candies resting in one of the kitchen drawers remained untouched throughout the weekend. The bag was placed next to paper and plastic lunch bags. Every time Robert goes to his Employment Agency, one Twix candy and one clementine go with him to serve him as his snack. Since Robert established that rule, he refrained himself from eating Twix candy at home. Although a few weeks passed since I purchased that bag, the candies are still there.
From time to time, Robert opens the drawer, checks if it still contains his candies and relaxes as the presence of candies reassures him that he will still go to his Employment Agency. Knowing that is as rewarding as eating a candy.

Mixed Feelings in Deerfield

June 24, 2014
I made a mistake of volunteering information about Robert’s autism. I wanted to explain why we wanted to refrain from entering the houses which were shown through guided tours. So I informed the lady at the visitor center that listening for 30-35 minutes to the history of the house’s former owners would be too hard for our son with autism. I couldn’t help noticing sudden spike of her anxiety elicited by the word “autism”. There were a few awkward moments during which she, through a few questions, tried to asses the possible danger to the collection exposed to a contact with someone with autism. I couldn’t point to anything clearly inappropriate in her questions, but they put me in the defensive mode. So I added that my son had already visited many places that housed expensive artifacts. During this outings he didn’t demonstrate any behavior that could be considered dangerous to the exhibits. He just doesn’t like to listen for too long. Somehow, we both recovered from this uncomfortable state and concentrated on the map of the street showing all the places that did not need a guide.

I did not volunteered, however, to share with the lady at the visitor center, the main reason for our visit to Historic Deerfield which was to practice with Robert not touching anything inside. A few weeks before, I had learned that during a visit to a small museum, Robert couldn’t stop himself from touching many of the museum’s objects.
We came to Deerfield to practice with Robert, NOT TOUCHING. We had already practiced that at one gallery of the Museum Of Fine Arts. That was easy. We just kept the distance and, sitting on the benches, we “talked” about what we saw. That was a good lesson of using eyes, not hands to get information.
In Deerfield, Robert didn’t touch any of the furniture. For once, some of the furniture was separated from the tourist by barriers. Secondly, I was watching Robert very closely.
The only things Robert touched were door latches. After he had difficulties entering one of the houses, Robert had to find out, how the latch at that door worked. Later, as we moved from house to house, from door to door, and from latch to latch, Robert kept observing and checking the mechanism making the doors open and close.
Open and close.

Filling the Gaps. Exercises in Reading Comprehension

June 23, 2014
Robert and I spent a couple of hours on Friday and on Saturday reading two stories from The Reading Comprehension Kit for Hyperlexia and Autism, Level 2 by Phyllis Kupperman. It was published by Linguisystems. A few months ago, we read and analyzed first two stories about a girl named Brianna and her fondness for toy trains and real trains. This time we concentrated on the first independent trip along the city block by the boy named Alec.
I am aware, that the stories address experiences of children much younger than Robert, but unfortunately, at the time when his age matched he protagonists of the stories, I didn’t have this book. Thus some of the concepts those stories introduced have remained unfamiliar to Robert.
I regret not having this book earlier for another more important reason. I am not a reading specialist. I am learning as I go on, often from the additional books I encounter. (For instance, The Magic of Stories or The Power of Retelling) Kupperman’s book offers very methodical approach to reading comprehension.
The comprehension starts not with reading but with deducing what would happened in the story based on titles and illustrations. There is a lot of “priming” by having a student/child discuss some of his/her experiences as they might relate to the story they have not read yet. The teacher/parent asks questions trying to evoke future understanding of the text by placing it in the context of a child’s real life events. There are also pages devoted to clarifying meaning of some words in the story.
After reading, the student retells the story, to answers the comprehension questions, and visualizes it through drawing pictures (Robert needs a lot of help with that part mostly because of his difficulties drawing). There is also a page allowing Robert to understand which pronoun replaces which noun.
To make it all much easier to deal with, there are colored strips with phrases or full sentences that could be used.
I don’t know the nature of difficulties Robert demonstrated while trying to retrieve answers from his memory, but I know that those strips help him a lot. It is much easier to look for answers on the “Outside” as that requires choosing from responses clearly visible and already formulated. I do believe that this approach is not replacing the memory, but does clarify for Robert what is expected.
At this point, Robert is probably ready to answer some parts without the help of the strips with written replies.
Each story requires two 45 minutes session with a short break between them. I don’t spread it over a couple of days, because Robert tends to forget quickly and reviewing takes too much time.
Unfortunately, the two stories about Alec dealt with the problem of independence – walking alone where it is safe, and not going alone where it is not safe yet.
This is a problem. We live on the a very narrow, but relatively busy street. Robert doesn’t know any of his neighbors. So sadly, we cannot replicate Alec’s experiences.

On Lights and Shadows

June 20, 2014
There are hours that leave shadows lasting for days. Only for two hours between 10PM and midnight, Robert was insisting on washing and then on finding (after I had hidden it.) dirty bed sheet. He was determined. He was obsessed. He was anxious. Very anxious. He kept checking the same closets, drawers, cabinets many times. He asked over and over. We both, Jan and I, tried to be as calm and soothing as possible, despite noticing how distraught Robert was. Only two hours, but the shadow spread over a few days. Even after finding a sheet and washing it, the following morning, Robert was more anxious than he usually is. I kept worrying about Robert’s obsessive need to keep everything the same way. I kept asking myself what other changes would make Robert so anxious. And of course, I kept questioning my reaction. Wouldn’t it be better to let Robert do laundry that same night. It wouldn’t last as long. He would calm down knowing that the order of the Universe had been restored.
In this shadow of cascading worries, many bright events seem dim. They remain unnoticed or are ignored as lacking any positive value.
Still, there are days of calm happiness. Days that shows steady growth. Days that expand Robert’s universe without causing any distress, but to the contrary, offering a new kind of freedom.

When I write this blog, I tend to use more words to describe the ways we stumbled, tripped, or were blocked than to report on those times when we moved smoothly forward.
Of course, when I encountered a problem I also think about two things: how it would affect Robert’s future and what can be done to fix it.
For instance, after the event with a bed sheet, I looked differently at Robert’s insistence on using always the same towel. I thought about ways to change it without causing too much protests. At this point I persuaded Robert to keep two towels on “his” towel rack and use either one or the other. So the “shadow” is a way to anticipating and preventing future problems. Is not all bad and it shouldn’t be avoided.

Nonetheless, I should not skip recording small gains, specially since I didn’t expect them. From mature behavior during blood test or X-ray, to helping during house cleaning, to uttering longer sentences (well, still prompted.), and to…tolerating two towels on “his” towel rack.

The More Things Change, the More They Stay the Same

June 19, 2014
Fifteen or Sixteen years ago, during our family trip to Quebec, at the request of our daughter, ten years old at that time, we went to the French restaurant specializing in crepes. We knew, that going to French restaurant meant we wouldn’t be able to order french fries for Robert or any other food he would eat. Still, Amanda deserved to have her wishes fulfilled at least once in a while. So we went there. We ordered crepes with different fillings for each of us, including Robert.
We ate our crepes. Robert didn’t. He smiled, he might have even touched a small piece of crepe with his lips, but that was all. We finished, paid, and left the restaurant.
We weren’t three steps from the door when Robert suddenly began screaming. He tried to pull us back to the restaurant. We knew, he felt cheated. He didn’t get HIS food. He wanted go back and get it. After all. he waited patiently. Both, Jan and I tried to half pull half carry him to the car on the other side of the street. Robert’s efforts to prevent that were partially successful. Using masterfully passive resistance tricks, he spread himself in the middle of the busy street. We had difficulties picking him up and carrying to the car. I still sweat when I remember that experience. The worst part was that Amanda, was sincerely sorry, that she “made” us go to the French restaurant.
Of course, we quickly found a restaurant that had fries and nuggets. We sat quietly watching Robert taking his time to savor every bite of his food.
The fact that this situation didn’t repeat itself for those 15 or 16 years, was because we had learned our lesson. We have never ventured with Robert to a restaurant that didn’t have something for him.That meant that the best restaurants were out of questions.
As we kept taking Robert to restaurants that offered fries, chicken fingers, cheeseburgers,chicken wings,or pizza, Robert didn’t need to protest. That fooled us into believing that the problem dissipated.

It didn’t.
Just yesterday, Robert protested very loudly when members of his walking club entered a frozen yogurt shop to give themselves a healthy reward. Robert doesn’t eat frozen yogurt. He doesn’t eat ice cream either. The place was not what he expected. Maybe he was confused. Maybe he felt cheated. But he was angry and/or disappointed and he showed it. He screamed. He screamed loud enough for the members of his Club to leave the place.
They might feel as embarrassed as Amanda felt long before them.

Robert and I talked about that today. We wrote a two paragraph report about the Wednesday’s event. It is time, I believe, for Robert to learn a lesson what it means to be a part of the group: Share what the members have in common, accept what is different. Think, how others might be impacted by your behavior.
He wrote something to the same effect, but he used simpler, concrete words. After all. he doesn’t know the word “impact” yet, although he makes it frequently.

Easygoing? Not so.

June 18, 2014
Easygoing? Oh well, not so.
As we all prepared to go to beds, Robert’s dad, Jan, noticed that there were smudges of hot and spicy sauce from Tyson Hot and Spicy Chicken on our bed. It seemed that despite having such a busy day, Robert managed to find a way (and time) to our bedroom with either his favorite food or his hands still dirty from the food he ate. He must have hidden under the comforter with his Ipad. Because the IPAD was dirty too.
Jan took off the sheets. And that was when Robert protested. He didn’t want the sheets to be changed. Sometime, during the last year, Robert began to believe that only one set of sheets can go on each bed. We can take them off, wash and dry them, but we have to put the same set back after that. Robert tolerates putting a new set on, but only for as long as the old one undergoes washing and drying. I noticed that a month ago when I tried to replaced sheets on Robert’s bed. He didn’t mind washing, but as soon as his flannel set was dried, he put it back.
I didn’t notice that sooner, because it was always Robert’s job to put clean sheets on. So he did it in his own way.
Yesterday, it was too late to do laundry. Robert knew that and we knew that. It would take up to midnight to complete it. Still, for Robert it was unacceptable to put different sheets on the bed for the duration of the whole night. He would rather do laundry and wait till midnight instead of having his parents sleep between different sheets. He tried to start laundry then and there. I called him back. He put the sheets in the hamper and pretended, he didn’t mind. A few seconds later, he grabbed them again. I protested. Robert put them back in the hamper.I knew that as soon, as Jan and I stop watching the hamper, the sheets would end up in the washing machine. I used a moment Robert went to brush his teeth to hide the sheets. That allowed us not to watch Robert, but that didn’t stop Robert to demand that we give back the sheets. Since we refused, he tried to find them. He checked closets. He checked garbage. He checked containers under all beds. He didn’t find them. Over and over he asked, “Green laundry”,”Green bed”, or “Green sheets”. Over and over, Jan or I, explained, “Tomorrow, we will wash sheets, dry them, and put them back on the bed. ” It is OK. It is OK . It is time to sleep. Go to your bed. ” And he went. Around midnight.
Of course, the laundry would be completed by then. But…
Robert woke up at 6:30 this morning. He found green sheets in the hamper. He started washing cycle. before he left for his program, he already put the bedding in the drier. But he didn’t wait until they dry. He went outside and waited for his van instead.
Although that is a good sign the problem has not been solved yet.


June 17/18, 2014
Last night, I was going to write a short post about a few relaxing days. Nothing special, just a list of places we went to and topics we addressed during our learning sessions.
From Saturday to Tuesday, we had a pretty good time. Even more, CALM time. Robert went to the Bridge Center, then we all went for a walk along the Pleasure Bay in South Boston. On Sunday, we drove to Newport, RI hoping to go on a whole Cliff Walk, as the part of the trail which was closed for more than a year, was supposed to be opened that weekend. It wasn’t. But that didn’t spoil our afternoon, which we finished with a dinner in a restaurant.
The Monday’s visit with the gastroenterologist went well. Robert seemed relaxed. Oh well, he fell asleep as the Doctor discussed with me Robert’s issues with digestive system.
He went to his Work Program, where he folded sheets and pillow cases with a co-worker. In the afternoon, he went to his cooking class. On Tuesday, we went to the bank to deposit his previous earning ($3.61), to a pharmacy to pick up a new medication, to Social Security Office to provide additional information, to Moose Hill Park, for a walk on a Boardwalk Trail, to the gas station and to Stop and Shop supermarket. Over those few days, we also did a lot of work. Every day we did four stories from Functional Routines for Adolescents and Adults. One story from each section of the curriculum – Home, Leisure, Work, Community.
I had this curriculum for at least 4 years now. For over a year it was kept at his school, but not much was done. Maybe one lesson. So I took the books back while the school kept CDs that accompanied the presentation books. I hope they will use them, but I am not sure.
A few words about this curriculum. There are four pictures for Robert to look at when I read the short text. I have three level of the text to choose from, but I always choose the beginner’s level. This is because of Robert’s difficulties with short memory. Some of the topics in those stories, Robert is very familiar with, as he already master the skills presented. Still, it is good for him, to have another look at the things he can do. Some of the topics are only vaguely familiar and although they expose Robert to different requirements (for different jobs for instance) they do not apply to him directly, at least not yet. Some topics prepare Robert for next skill, I will practice with Robert at home – like cleaning the bathroom. I have an impression that since Robert joined his vocational program, his interest in this part of our session, increased a lot.
We continued practicing language concepts (some, all, none, before, and, or) through the exercises presented in Reasoning and Writing, worked on Adult Cards for Apraxia, practice pronunciation of another group of words, finished Greece History Packet and did, for entertainment, a few math exercises from Singapore Math, level 4.
That is, what I wanted to write yesterday. I wanted to state, that when I take it easy, Robert takes it easy too. It would be such a nice conclusion.
Oh well, not so.

Facing the World

June 14, 2014
It is tough to face the world. It is tougher for a person sheltered, for too long, by intensive supervision. It is still tougher when such person doesn’t have the language that would act as a buffer between him/her and the world.
He cannot ask for clarification.
He cannot explain himself.
He tries to understand the wordless world by watching where the things are. He will keep them in the same place.
He tries to understand the wordless world by repeating the same things in the same order.
On the quest to decipher rules of the world, mistakes are made. The rules which govern one place are forbidden in another place. What was the rule yesterday doesn’t work today. The language offers flexible adjustments. Without it, the present is determined by previous experiences and rigid rules.
1. Years ago, in 2008, Robert would make his class and teachers laugh WITH him. It had something to do with Robert simultaneously wanting and not wanting to share his candies with everybody. He stretched his arm to share the candies, but then he pulled the hand back. He did it again and again. The children giggled watching Robert being pulled in opposite directions – sharing with others and keeping for himself. At some point Robert realized that it was, indeed, funny and he laughed at himself too. It felt soo good! Not just to share the laugh, but understanding his own reactions. Understanding that his efforts to reconcile two opposite drives were sort of silly. It was also important for Robert to notice that his peers laughed not in a mean way. He made everybody happy.
A few days later, he tried to do the same. His peers and teachers were seating the same way as they did before. So Robert stretched the arm and pulled it back. But instead of making everybody happy, he got in trouble for being unruly.
2.There is a basket of lollipops in the branch of his favorite bank. It is sitting on the table just by the door. It is understood that the lollipops are there for customers. Robert never forgets to find one purple lollipop.
There are also lollipops in the basket in the bowling alley. They look the same as the lollipops in the bank. Robert assumes that he not only can, but is obligated to take one. He gets in trouble.
The words of advice that Robert hears are two-week to shield against the power of things surrounding him. They only cause more confusion.
To increase the strength of words, they should precede the confrontation with an environment.
Before entering a place governed by new sets of rule, it is a good idea to tell Robert what he should expect and what is expected of him. With such a warning, Robert enters a place knowing that it is, at least partially, under his control. That he doesn’t have to be enslaved by the place, but that he, to some degree, is in charge.
The grip of the world as it is, has been loosened by a few timely delivered words.