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.

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.

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.

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.

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.

June 11, 2014
Yesterday, Robert and I were reading a section from The Social Skills Picture Book for High School and Beyond by Jed Baker. The section referred to the welcoming and unwelcoming ways of looking at people. Of course, given diagnosis of autism, one might be tempted to conclude that Robert is not able to differentiate between welcoming and unwelcoming expressions on other people faces. However, given my prior experiences with Robert, I don’t think that this is the case.
Something else had to stop Robert from trying to decipher other people attitudes toward him.
I realized that this morning when I walked with Robert to the van that took him to his day program. There were a few gentlemen already there. Robert struggled to say, “Hi”. He said it very softly with his head down. With my help, he followed with clearer, “Hello” accompanied by a quick glance at others. Then, without any prompt, he uttered, “Good Morn” . The gentlemen were smiling at him in the most welcoming way. All of them. They smiled as if they were saying, “We understand that you are struggling, but we appreciate your effort.”
In the past, when another van was taking Robert to his school, and another group of Robert’s peers was occupying the seats, Robert had never experienced a welcoming expressions on his classmates faces. Because they were all his classmates. They were not aggressive, they were not mean, they just ignored him as if he didn’t exist. Just from happening every day “polite” shunning, one could assume how lonely Robert must have been in his former classroom.

Today, such a difference! Maybe it was that now, Robert is travelling with adults, not adolescents. They know better. They understood that everyone has to struggle so they empathize with Robert’s difficulties.
Robert climbed on his seat quietly and got busy fastening his belt. I didn’t see his face.
I believe, he felt the same warmth I felt. He just doesn’t know yet what to do with it, how to reciprocate it.
One day he will learn. Just keep smiling at him.

June 10, 2014
A week ago, Robert made noises in the bank. That took me off guard. I felt embarrassed. Unable to properly react, I left the bank. Of course, Robert left with me. Although we had planned going to the farm and to a park, I didn’t feel it would be appropriate given Robert’s unpredictable behavior. And thus, despite Robert’s protests, we returned home.
Robert didn’t want to leave the car. I turned it off and went home. Fifteen minutes later, Robert came too. We talked about not making noises. I mean, I talked. Robert, embarrassed as well, was agreeing with me, “Okay, okay”, he kept repeating after each of my scolding statements. The soft way he kept saying, “Okay, Okay”, melted my heart, so we went to the farm and to the park after all. At the farm we walked into a green house and bought a few herbs and a freshly baked bread. Then we drove to the Moose Hill Audubon. Robert was patiently listening to my conversation with the person in the visitor center about oncoming native plant sale. Then we went on a short Boardwalk Trail. It was a wonderful day. We rested on the bench standing at the edge of a meadow. We watched birds entering and leaving their homes, enjoyed scents of unknown plants, and admired wild irises. Robert was relaxed, calm and happy. I was too. On a way back to the parking lot I tripped and fell. Robert screamed and quickly patted his cheeks. He was upset. He was concerned. He was scared. I slowly got up. My knee hurt, my hand was bleeding. Robert was still making grunting noises. “I fell and you scream. That is not right.”,I said stupidly. As soon as I finished this idiotic observation, I realized, that if it were Robert who fell, he would not scream. He screamed because he was afraid for ME. He screamed because he felt MY discomfort.
We walked silently back to the visitor center. Robert rested on the bench while I went to wash my hand in the restroom.
It was only then that I understood why Robert made those grunting noises in the bank. Only then!
I should understand his behavior sooner. After all, he had never before behaved inappropriately in any of the banks he went with me. Not when we did transactions with tellers, not when he waited in line, not when we spent long time at the desk with the managers while opening an account or straightening some errors. Not even when the baskets which should have lollipops were empty. Never!
But then again, I had never felt so strangely in any bank before.
Cashing Robert’s check was not a problem. He signed the check, handed it to the teller, got his money, and put it in his wallet.
It was only when I turned to the man sitting in the open enclosure to ask a question that something strange happened. A tall woman coming from nowhere appeared in front of me, as if blocking me from trespassing. I realized that she came from a room with closed doors as if I were watched suspiciously from behind. I felt uneasy, as if I did something terribly inappropriate. Almost apologetically I restated my problem – need to recover Robert’s password so I could practice with him online banking. The woman stated in a manner which was both dismissive and pushy, that since Robert had a guardian, he couldn’t be allowed to do his online banking anyway. I responded that this didn’t sound right, because we had done online banking three years before. And exactly in this moment, Robert approached us making grunting noises and running his fingers through his cheeks.
As I washed off the dirt from my hand in the visitor center of the park, three hours later, I finally understood that Robert was upset, because he was afraid for ME. He thought we were fighting. The woman was a foot taller and she stood extremely closed to me in what one might called, my personal space. I felt intimidated, confused, and uncomfortable.
Those feelings negatively influenced my ability to understand Robert’s perspective. I didn’t think about how Robert read this situation and how he felt about it. I heard his noises and treated them as if they were expressing unprovoked anger.
If I were not so quick to blame Robert for inappropriate behavior, I would understand that he was afraid for me. He might either think that I was under sort of attack, or that I was arguing. He doesn’t like arguing.
If I were not so quick to blame, I would tell, Robert, “It’s okay, it’s okay. We are not arguing. I am just asking for advice. It’s okay. The lady is friendly. (I would lie) It’s okay.”
That would be the end of it.
But I didn’t do that. I left upset with Robert for loudly expressing his frustration. I left heartbroken that “Robert’s ‘irrational’ behaviors returned without a reason.” Robert left confused and ashamed.
Everything because of being too quick to blame and to slow to understand.