August 26, 2014
Ten years ago, I flew to Poland for my mother’s funeral. I returned home after 5 days. The next few months were very, very difficult. Robert was very difficult. I thought, he was punishing me for my absence. Maybe he was punishing me for mourning. Maybe I couldn’t deal with my loss in a way that would not affect Robert. Anyway, Robert was very, very difficult. I couldn’t be specific as to what exactly he did. The year remains a blur. But I remember that Jan and I found it necessary to learn how to restrain Robert. I remember that I was asked by behaviorist from private school to sign permission to keep Robert in a tiny room as a next step of restrain. I remember that I dreaded Robert’s return home after school. I remember calling my husband during his job interview begging him to come home. I remember broken bookshelf and floors covered with bear counters, pegs, puzzles, blocks, shapes as Robert kept dumping the boxes of educational materials almost everyday.
I don’t even think, I had will or ability to force Robert to pick up everything, as I did eight years earlier when he kept dumping buckets of Lego blocks on the floor. At that time, Robert’s teacher used overcorrection once and I used it twice, and the habit disappeared. In 2004, it came back, and I don’t think I was able to address it. I really don’t know what my husband, my daughter, and I did to help Robert and us slowly recover from that disaster.
I know however, that for the next ten years, I was afraid to leave the house without Robert. we could travel together. My husband could leave for work out of state, my daughter could leave for college. I couldn’t go anywhere. Jan could take Robert and Amanda skiing and they could stay in a hotel without me. But I was always at home, when Robert was there.
Last week, for the first time in 10 years, I left the house for 24 hours. Of course, Robert had good care. His sister was there to take care of him when dad was at work, Robert went to his day program one day, and the second day Pam, provided 4 hours of interesting activities.
When I came on Thursday evening, Robert didn’t jump excitedly, although a sly smile passed through his face. He had to be asked to give me a hug, which he did. Half a second long. Robert was much more interested in my backpack than in me. He took it from me and immediately started washing my clothes. That is what he always does whenever our family returns home after staying overnight somewhere else.
His restrained welcome was a proof that Robert can survive pretty well without me. I felt relieved and, to some, small degree, liberated.

August 23-24, 2014
I often state that Robert doesn’t explain anything. At least not in a way I understand. He has his way of asking questions using one word or no words at all. But until this Friday, he had not explained anything to me.
That is why the small event I will describe below, means much more than many other things Robert did during the whole last week.

I was rinsing dishes and placing them in the dishwasher. I noticed two cups on the kitchen table. I asked Robert to bring them to the me. He brought one cup placing it on the counter next to the sink. I ask for another cup. Robert returned to the table and turned around as if he wasn’t sure what to do. So, I repeated the demand, “Robert, bring me the dirty cup so I could turn washing machine on.” Robert didn’t touch the cup. Instead he picked a jar of freshly brewed coffee and placed it over the cup tilting it a little as if he wanted to fill it with a drink. He didn’t, however, poured the coffee. He just pretended to do so. Then he put the coffee jar back in an espresso machine.
I understood! Well, I did. But, I needed a confirmation! I approached the table and looked inside the cup. It was half full with frosted milk. Robert’s sister, Amanda, made a cup of espresso but left the kitchen to answer her cell phone,before pouring coffee into a cup.
That is why Robert didn’t bring me the cup and that is what Robert tried to explain to me by pretending to pour coffee into the cup.
His gestures replaced hard to find words. He didn’t know the words to explain, that the cup contained frosted milk for Amanda’s cappuccino. But he still found his way of explaining me exactly that.

This is one of the reasons I really don’t believe that any IQ test can really assess Robert’s intelligence as it reveals itself in very unpredictable forms.

August 20, 2014
I haven’t written for over 10 days. There was really no time to write. Robert and I didn’t keep our daily schedule of study. In those 10+ days, Robert and I had maybe 5 lessons. We continued with all the same things. Singapore Math 4A (Standard edition), Reasoning and Writing – up to lesson 56, Copying Pictures and writing about them. Each day 10 cards from each of the three sets of cards from Super Duper School company with the emphasis on pronunciation. I read, Robert answered. Robert read, I tried to understand what he was reading and then answered. When I didn’t understand, I looked at the sentence with Robert. Sometimes we concentrated on the first sound in the name of a person (the names were the hardest for Robert), sometimes we divided words into syllables and worked on the sounds of the consonants ending each of the syllables, sometimes we just worked on extending long vowels sounds.
We didn’t work every day as there were many changes to the daily schedules over those 10+ days. On Tuesday, last week, we drove to the JFK airport in New York city to pick up Robert’s sister, Amanda, coming from France. Robert survived the trip and three hours long wait at the airport very well. We used monorail to ride around the airport twice. That helped a lot. It was not just a pleasant entertainment but also allowed Robert to get a general picture of the airport. On Wednesday afternoon, we drove back to Massachusetts in a crowded car with not only Amanda but also Robert’s grandma coming for a week-long visit. Again, Robert didn’t complain at all. The following week required a lot of adjusting, and that went well also. Of course, we tried to make up for less attention we could give him. So Robert went to Science Museum with his father and grandma to see a movie about Pandas, he went to movies with dad to see Guardians of the Galaxy, he went to Outback, he went for a walk in Moose Hill with Amanda. He helped with laundry, as always. Nonetheless, he spent more time than usually on his IPAD, mostly watching Grease.
His response to a full house was a surprising one. He became less obsessive compulsive and let many things be left in the “wrong” places. My purse, my cell phone, for instance. It was as if during the visits of his sister and his grandma the house rules, as Robert imagined them and kept maintaining, were suspended.
In a way, they were.

August 8, 2014
We have done it before. Maybe 4 maybe 5 times. We made simple electric circuits that lightened the bulb, moved the fan, made sounds. I remember using a special set bought in the Learning Store to build complex circuits with the support of multistep instructions. I remember building simpler circuits too. Many times.
But I also remember that, no matter how entertaining and interesting (Sometimes challenging too.) I found those tasks, Robert couldn’t care less. He passively connected wires from batteries to switches, to light bulbs but as soon as he completed the task, he quickly and silently dismantled the circuits and returned them to the boxes they came in. His attitudes were such that I almost lost interest in teaching him elements of science.

Today, Robert read very short paragraphs-one about static electricity, the other about batteries. He rubbed the sleeve of the wool sweater on the large comb and was clearly amused when my hair stood up after he placed the comb above my head.
When we used different batteries (AA, C, and 9V) to lighten a bulb with the help of red and black wires, Robert was thrilled. He kept closing the circuit over and over again changing the batteries and observing the changes in the brightness of the light. A few minutes after we finished and I put all the tools in the drawer, Robert took them out and a few more times closed the circuits.

August 7, 2014
Last Tuesday, Robert and I hurried to his horseback lesson. We studied longer than I expected. Then he had to change his shorts into long pants needed for riding. I quickly changed into more suitable clothes. We drove to the barn only to learn that the lessons were canceled for the rest of the month. Robert was not happy and in one 3 second long sound expressed his disappointment. Still, he left a bag of carrots for horses and returned to the car.
As I started the car, Robert suddenly pulled my shirt as if he wanted to take it off. “What are you doing? Stop it now”, I said. It was clear that Robert was angry. But after my scolding, he gave up and for the rest of the ride home he didn’t pay any attention to my shirt. He was calm and quiet. I, on the other hand, was petrified with the sudden appearance of this strange behavior. It had never happened before. And there was clearly no reason for it, thus I resigned myself to considering it a new symptom of the autistic disorder.
Every time, Robert does something, I don’t understand, I feel a new chasm opening between us. I felt it then and there.
The only way to recover from that feeling was to do something “normal”, something we do often and without special effort. So I suggested to Robert to go to a supermarket. we needed a few things including some of his favorite pablano peppers. He usually likes going shopping. But that Tuesday, Robert didn’t want to go to any of the supermarkets I suggested. He responded by saying, “Home, home,” every time I mentioned the name of the store. So, we came home. Robert took his IPAD to watch Grease, his latest favorite movie and disappeared in his room. I made myself a cup of tea and sat at the table.
Only then did I notice that I wore my embroidered, fancy shirt inside out with all the multicolored stitches hanging out in a rather messy way. Robert pulled my shirt to alert me to my breaking the dress code. He was angry, that I didn’t understand. He was mad that I even DID NOT TRY to understand. Maybe , he felt too that my own assumption about his behavior are the impossible to conquer obstacles in communication with me. He was quiet but he wasn’t calm. He gave up. Moreover, he was too ashamed of my attire to walk with me to any of his favorite stores. After all, people knew him there. He had his image to maintain.

August 3, 2014
On Friday evening, we picked up a new Honda Civic from the dealer. At first, Robert seemed very happy about getting a second car, but soon the problem surfaced.
The car came with three keys, one grey and two black. The gray one was easy to dispose. Robert put it in a box where another the grey key has been kept. Two black keys, however, came with the questions, “Who should be in charge? Where should they be kept?” We suggested to Robert to put them on two old key chains, one for Jan and one for me. But Robert wasn’t convinced. He took one new key and one key chain and made such movements as if he tried to put them together but then he stopped. Something was not right. Robert didn’t want to put the new key on a key chain. But he didn’t want to put it in the drawer either. There was only one solution to this conundrum.
“Car back, car back, dealer.”, demanded Robert and handed Jan two black car keys. Nonetheless, a minute later, he agreed to be driven in a new car to a park.i

The plate has had a crack for more than a year. But a very thin fracture was not a reason for Robert to throw the plate away. I tried twice to do that and twice Robert found a plate in the trash and put it back in the kitchen cabinet. Today, the crack got bigger, and when I slightly pushed its two sides down, it broke into two pieces. I put them in the trash. An hour later, I found both pieces in the cabinet among other plates. “Robert they are broken. They cannot be used. You have to throw them”, I told Robert. And so he did. He dropped them in the trash pretending he didn’t care. However, when I returned to the kitchen, I found again both pieces hidden among the pile of plates. I asked again, and Robert concurred. But, I would not be surprise if tomorrow I would find those two parts of a broken plate again in the kitchen cabinet.

Over the weekend we practiced with four sets of cards. I noticed the previous week, when we used set What Does Miss Bee See? that when we take turns asking the question everything goes smoother. I take the card, ask the question, “What does Miss Bee see?”, and Robert answers. Then he takes the card, asks the same question, and I answer. When we change the roles, those language exercises sound more natural and Robert is much less stressed. This weekend we did the same thing with What’s Wrong? cards and three other sets.
When it is Robert’s turn to ask “What’s wrong”, he clearly relaxes and his pronunciation of those two words become less and less forced. It gives him a break when he has to ask. Two other sets didn’t have questions. One set required us to change a verb to present progressive, the other to change the sentence in such a way that would replace “I” with “Me”. I read the first sentence, and Robert changed it. Then Robert read the sentence, and I changed it. It went very smoothly until we returned (after a few months) to the cards from Auditory Memory Riddles. When I read three clues, Robert didn’t have problem solving the riddles. When Robert read, I had difficulties answering even one. Without seeing what Robert was reading I couldn’t understand what he was saying.
So Jan joined us. I was helping Robert read the clues and Jan was guessing. I could help Robert just by showing him where the word is split into two syllables, or by pointing to a letter that called for long (or longer) sound. That part was still very difficult for Robert. Nonetheless, Jan guessed seven out of 10 riddles.

This evening Robert and I went to see Jersey Boys in the small theater in Sharon. There were very few people watching with us. All of them much older than Robert and not much younger than I. We spent two and a half hour in the theater. I mostly watched the movie as there was no need to watch Robert. Still, whenever I turned to him, while the “Four Seasons” sang, I could see how much Robert enjoyed this movie and this music. He was moving in his seat following the music. Not too much, not too little. He was attuned to sounds and sights.The joy radiated from him. He kept his hands ready to clap at the end of each song and he clapped together with the audience in the movie even if the audience in our theater didn’t.

I started writing this post with a simple lesson in mind, ” Don’t give up after the first failure.”  Robert’s first encounter with a day care was a disaster.  So I gave up. Later, I learned that trying again and easing Robert’s way into new places and new situations could bring positive outcomes. But as I was writing I discovered another, more important, connection between our experiences with Robert, and the possible effects of one on one aide at school on Robert’s delayed (if not missing entirely) understanding of  belonging to a group of his peers. 

July 31, 2014

When Robert was 2 years old, I left him once, on a trail basis, in a day care.  I picked him up two or three hours later only to learn that he had extremely hard time and so did everybody else.  He cried without even short break during the whole time he was there.   So I have never signed him again.  It was long before Robert got his diagnosis, but I had already known that the serious diagnosis was imminent.

A few month later, Robert had equally hard time separating from me during three hours a week of his early intervention program followed by equally hard time in his special preschool.  He did not have problems with separation when he joined private ABA school.  I believe that it was because he knew some of his teachers as they had already worked with him during home program.

Nineteen years later,  I brought Robert to a new program – a cooking class.  He knew the place, he knew the person in charge and yet, he didn’t want to stay.  He did not want me to leave.  So I stayed.  I stayed the whole two hours.  Robert was tense.  Although he followed directions and did a fair amount of work, he watched my every move.

The next week, he found his way to the kitchen and joined the group not even checking if I was still there.  I was there.  At least for the next five or ten minutes.  Then, not really sure if that was a right decision, I left. Somehow,Robert understood (or felt) that my presence was unnecessary or even unwelcome.

This pattern of requesting the presence of a parent during the first encounter with a new place or a new activity, repeated itself when Robert joined Walking Club at local ARC.  The first time, he attended it, he requested his dad’s company. “Requested”  is an understatement.  It was clear that Robert would not make one step without his dad and that he wouldn’t let  his dad take one step without him either. So dad accompanied him during that walk.  The next Saturday, however, Robert joined the group without even looking at his dad.  He understood, yet again, social rule about this group.  It excluded parents.  And for a good reason. It is harder to connect with peers when the parent is present.  Even if the word “connect” means only “observe” and “follow” .  Parent (be it me, be it Jan) was like a magnetic charge which although invisible, was  pulling Robert away from the group and thus it was making the identification with other member of the walking club much more difficult.