October 6, 2014

In October of the last year, I came to observe Robert in his “transition” classroom. The observation was scheduled a couple weeks in advance. I didn’t ask to observe any specific activities. The teacher chose the place, time, and the activity. He chose cooking – frying tortillas with slices of apples and cheese. By the time, the lesson was over, I was depressed.
It was clear, that the teacher didn’t think about the lesson plan, he didn’t specified goals, he didn’t think about clarity of instruction, he didn’t make general introduction. There were so many things that could be taught: safety rules, hygiene, names of utensils. I was bitter. I knew how much more the students would learn if I WERE their teacher. I would introduce a new vocabulary, I would not just write the steps on a white board, but repeat them with the students in a funny way using some mnemonic technique. I would have arranged the tables in a horseshoe shape around the one and only flat, electric burner. I would have students work at the same time on cutting apples and cheese, as there were enough of aides to assure safety. I would put cooked tortilla in the pile and pass them to the students at the end, so they could eat together while having sort of light conversation prompted by the teacher. That would be a great opportunity to increase social interactions among students.
Student after student approached the burner, put on gloves, too big and too slippery for this job, and using tiny knife sliced the apples and cheese. The gloves were making it hard. The small knife made it even harder. The student poured some oil on the burner (some too much, some too little), placed tortilla with apples and cheese on it, folded it, and later with the spatula tried to flip it over. It was not easy, the tortilla kept sliding off the spatula and off the burner. While one student was doing this, all the others watched and waited for their turn.
Of course, I could blame the teacher for not thinking about the goals or for using wrong utensils. But then, he wasn’t a cooking instructor. Moreover, he didn’t have any utensils to choose from. The classroom didn’t have a bigger knife or tongues to flip over hot tortillas. The classroom didn’t even have sink. The electric flat burner was there because the students didn’t have access to a real kitchen. Although new high school had a splendid kitchen, those students in transition program didn’t have an access to it. That was the wish of my town’s school committee and the high school principal. While the students in high school had an access to the kitchen, students in the Transition Program, those who needed that access more than anybody else, didn’t. They didn’t because they were clearly treated like second class students. They needed more. But for my town’s school administrators those students who need more, are less deserving. So could I really blame the teacher who had neither training in teaching cooking nor an access to necessary equipment?
Maybe a should blame sped director? No, I couldn’t because she was new in the district, just five weeks on a job. Should I blame the old sped director? No, I couldn’t because I know that she tried to bring the transition program back to the spacious rooms in a new high school building where fully equipped kitchen could offer more opportunity to learn. She couldn’t do it, because of the opposition from the high school principal supported by superintendent. Could I blame the director of the program? No, because I was told that he was the director only on paper and was not really involved. Could I blame members of the school committee for opening a classroom without providing any money for a proper equipment, not to mention curricula materials? No, I couldn’t because the high school principal assured them that the students in the transition program won’t need anything and no dollar would be spent on that classroom. Could I blame the principal for lack of concern for the transition students if two mothers of children with disabilities wanted just a place where their TWO children could get custodial sort of care. They didn’t need more academics, they wanted a place to hang out between outings to job sites. Job sites which were mainly found for those two students using mothers connections. Because those mothers were well connected. Could I blame mothers that they wanted to make their TWO children happy and didn’t want to force them into any more learning of academics or life skills as that could backfire? Could I blame the school administrators for avoiding spending money on a transition classroom when the money could be spent on after school sport and art program. Could I blame the whole school district for neglecting children in the transition program ? No I couldn’t because they stated that they didn’t get money from the town to provide necessary equipment. I couldn’t blame the town leaders because it was the Department of Education in Commonwealth of Massachusetts that year after year kept sending a message that the neglect of special education children can go without any negative consequences while the effects of teaching typical children as measured by standardized tests are important and could have unwanted consequences to the district (even parents scorn). Could I then blame Department of Education? No, because they insist that all of the districts have under Commonwealth Law some autonomy and do not take lightly any interference from the State…
Thus I am the only person to blame. I knew that the civil rights of the transition students with disabilities had been violated for years, and yet I have never filled a complain with the Office of Civil Rights.

October 4, 2014

We haven’t gotten a message so we brought Robert to the Ridge Hill Reservation for a walk with members of his Walking Club. Nobody was there, because the meeting was canceled due to the expected rain. The precipitation had already started with a shy drizzle, but soon it changed into regular rain. Nonetheless, there was this wonderful autumn scent in the air so we decided to take a short walk along the loop just to breathe. And we did.
After returning home, Robert read the last of the six easy books about Superman (from Costco). They are so easy, that reading seems rewarding to Robert. Later, Robert and I studied together, mostly following the same curricula:
Changing metric units (Singapore Math).
Elements of basic deductions (Reasoning and Writing)
Vocabulary words.
Pronunciation exercises based on Becoming Verbal and Intelligible (That brought again a bout of bitterness, as yet again I realized that this was what his schools’ speech therapists should had done years ago, but....)
Scholastic Comprehension Skills (comparing and contrasting Mars and Venus, based on a very short paragraph.)
Naming 3 things wrong with each of two pictures (to practice speaking without verbal prompting.)
After a short break we did SCIENCE.
We mixed oil and water, flour and iron shavings, flour and black beans, water and lentils, tea and sugar, water and salt. We watched as sugar and salt dissolved themselves in their respective liquids. We observed oil always push to the top of the water. We used magnet to remove iron from the flour, we boiled a small amount of salty water in microwave and tasted the powder on the side of the glass. We used strainer to retrieve beans and lentils from their mixtures. After all of that we read texts from Real Science (grade 3) and Core Skills Science (grade 3) about …mixtures and solutions.
Both texts contained some of the words which Robert probably didn’t understand, but they also described almost all of the experiments Robert had just performed with me.
Robert was thrilled! Maybe that was the way, he was able to return everything to previous (well, almost the same) state – by recovering beans, lentils, and salt. Maybe it was the funny way, the oil kept returning to the top. Maybe the easiness with which he could remove almost completely iron shavings from the flour making it perfectly white.
But maybe, just maybe, Robert was happy because he experienced yet another connection between written world and world of things and deeds.
Later, Robert, his dad and I played Trouble together. Robert was relaxed. He clearly enjoyed the game, even though I won.

October 1, 2014
I have written 300 posts already. I don’t remember many of them, as I rarely go back to read one or two of the previous posts. But it is harder to write now. Not because I wrote everything I wanted, but because I still have so much to write, that I am overburdened by the number and by the complexity of topics, I should write about. I should write what helped Robert and what was waste of time or even caused regress. I should rethink some of the approaches I had and think about what else can be done and how. I struggle with writing. Sometimes I want those paragraphs to be like light breathing, sometimes they are more labored as I want them to show structure made of discovered connections. Sometimes I tried to change the anger into something constructive. Sometimes I just want to enjoy a moment.
Yes, this writing changes mostly with my emotions, rarely with what I learned or understood.

We still study, most of the days. But not today. Today, Robert came back from his day program, ate something and off we went for his swimming lesson. Today he shared a lane in a pool with two other swimmers, while his teacher, Lucinda, kept giving him instruction from the side of the pool. I considered it a great achievement since Robert never get into collision course with other swimmer. Yes, he was still mixing styles, didn’t coordinate properly arms, legs, and head movements, but he paid attention to other people. That was the first time he was sharing lane with two swimmers, although a few times he shared a lane with another swimmer. On a way home we picked up Robert’s dad from the train station. We ate dinner, and Robert took a bath. He was too tired to study, Or maybe I was too tired to study.
Yesterday, I took Robert to the lab to check his blood for levels of vitamin D, B12, and of iron. We waited 20 minutes. Nothing special, Robert stretched his arm without any problems, observed phlebotomist taking two vials of blood, said, “thank you” (prompted) and left.
So easy.
But just a few years ago, three people had to hold him for short allergy shots or for blood test…
It rained, so we stayed home. Continued with lesson 7 from Reasoning and Writing, a few varied math pages. We read about waves and sound waves. I am not sure if Robert understands what the sound waves are, but he certainly remembers what the ocean waves were like and thus he grasp the meaning of the words: crest, trough, and wavelength. Although I am not sure if he remembers those words today.

September 21, 2014

We drove Robert to Chilli’s Restaurant. His pajama, toothbrush, medicine, and clothes to last for two days of the weekend in a duffle bag. We exchanged a few words with mike, a young man who was going to take care of him and two other young people and left. After returning home, I placed myself close to the phone ready to go and pick up Robert any minute. A couple of hours later, Mike called. Robert was anxiously asking for me at the store.
“Just tell him, he will go home to mother on Sunday. Tell Robert. ‘ Mother on Sunday or home on Sunday’. Do that a couple of times. Then switch the roles. If Robert continues with ‘mother, mother”. Ask him, “What about mother?”. And he will say “Mother on Sunday.” Providing answer on his own will calm Robert down.”
I think it all sounded convoluted and I am not sure if Mike understood me.
I called on Saturday morning. I learned that Robert fell asleep around 3 AM. I expected that. I didn’t expect that he woke up in much better mood. He went with the group to Special Olympics at the Center, to the 99 Restaurant. Following day, he ate breakfast with everybody, helped cleaning and doing laundry, went for a walk to a state park and was ready for us before noon.
When we picked him up, he was calm but tense, as if he tried to understand the significance of his new experiences of being separated from both parents for almost two days and two nights. At home, he unpacked his duffle bag. Then asked me to assist him in writing in his notebook about his weekend. That was another way of retelling the events and putting them in perspective.

Later we went to the orchard to pick apples and pears. We also studied a little. Maybe because the worksheets were very easy for him , or maybe because he liked the return to his routine, Robert seemed very pleased with himself.

He

September 18-19, 2014
1. Amanda
“Amanda, Amanda”, said Robert.
“Amanda is in France.”
“Amanda, Amanda”, he repeated.
I followed with a standard response to this part of dialogue, “What about Amanda?”
“Amanda is in France”, said Robert but there was a tone of resigned confusion in his voice. He said, what he was taught to say, but it was not what he meant. We stopped for a drink at the water fountain across from the Boating Club. Years ago, two summers in a row, Amanda took sailing lessons at this club. (They cost a dollar! I don’t remember if that was a price for one week or for the whole summer of instruction.)
After Robert drank the water, he looked at me and said again, “Amanda, Amanda.”
Only then, I understood what Robert was saying. He remembered that it was the place where we were coming with Amanda then and later. Sometimes to listen to the summer concerts, sometimes to play on the monkey bars, sometimes to just walk along the river. He missed her. ” She is in France.” I said, but I meant, “I miss her too.”
2. Playground
Nobody was there. Little children with their parents were in the next playground as this one was not suitable for babies, toddlers, or even preschoolers. It was built with older children in mind. But older children were in schools. “Let’s go there. ” I said as I opened the gate. “No, no, no”, said Robert but followed me inside. He wasn’t sure if that was the proper place to be. Many years passed since he went to any playground. I knew, he felt uneasy about being there. Almost as if he was trespassing. We went on the swings. He still couldn’t pump himself well enough to go higher or faster. He climbed up the ladder, the net, and a steep wall with the help of plastic chain. He slid down on each of the three slides, but used his feet and arms to slow down the movement. He was relieved when we left the playground. I was too. The piercing melancholy of a place one outgrew without really experiencing all the promises of a joy it promised, got to me too.
3. Weeping Willows
Weeping willows grew along the river banks, not very far from Harvard Bridge. Robert used to know their names. But not anymore. So we were walking and pointing to the trees and saying their names. Except, Robert couldn’t say, “Weeping willow” clearly. He squeezed syllables, and didn’t pronounce “l” sound at all. So, we stopped every few feet, touched the twigs, and practiced, “Wee-ping will-low. Wee-ping wiL-Low.” with emphasis on spacing the syllables and a proper tongue position for “l”. Robert tried hard, and I did too. But since English is a language I started learning by myself when I was 32, I was fully aware that my pronunciation didn’t give me any credential to teach articulation. For years, I avoided that task, knowing how inappropriate, if not damaging, my efforts to teach language might be. And then I realized, that almost nobody else worked systematically and intensively on Robert’s ability to have his speech understood or, more generally, on his ability to communicate. So now, when Robert was 22 years old, a person with a wrong accent was practicing with Robert what the specialists should have taught him when he was 3, 4, 5, 6 7, 8…… years old.
As I kept walking, stopping, touching the leaves of weeping willows, and waiting for Robert to say \ “WEE-PING WIL-LOW” clearly, I couldn’t help but feel bitter.

September 18, 2014
Part 1
This morning, I was planning a trip to an apple orchard. I wanted to leave after 10:30 AM to avoid morning traffic. So Robert and I studied for an hour – place values for decimals and the first lesson from Reasoning and Writing Part B. The lesson mostly reviewed some of the concepts from the part A. After short session we were ready to go. However, before we left the house, I asked Robert where HE would like to go: apple picking, Pleasure Bay, or Boston’s bridges. What I meant, by the last suggestion was a walk along the Charles River and over two bridges to cross from and to Cambridge.
Robert’s answer was unequivocal, “Bridges, bridges.”
“So, you don’t want to go apple picking?” I tried to make sure. (Or, possibly, because I wanted to go apple picking, I attempted to change Robert’s mind in this unsettling way.)
“Apple, apple”, replied Robert.
We were already driving but there was still time to decide which road to take next.
“Where do you want to go, apple picking, Pleasure Bay, or bridges?”
“Pleasure Bay”, was the answer.
And then I understood. Because I kept asking, Robert assumed that the first answer was wrong, so to please me, he kept changing them. By not accepting the first choice, I undermined Robert’s trust in his ability to make correct decisions. I put myself and Robert in an almost impossible position. Either asking or not asking again meant that Robert’s choices were not important. How to recover?
I didn’t know. After a few minutes of driving, I said, “I like to go apple picking because I like to walk among trees and I like apples. I like to go to Bridges, because I like crossing the river on those bridges and walking along the river looking at the other side. I like to go to Pleasure Bay, because I like going along the bay and watching people, airplanes,ships, and birds. I like apple picking, Bridges, and Pleasure Bay. You like apple picking, Bridges, and Pleasure Bay too, but what do you like the best? Where do you want to go today?”
“Bridges!”
And so we went.
Part2
We took our jackets with us. Just in case. When we stopped on Memorial Drive in Cambridge, I asked Robert to take jackets on our walk. He did. But the air was so warm, that I changed my mind. There was no point of carrying our jackets with us on a couple miles long walk. So, I asked Robert to leave jackets in the car. He did. But then a cooler gust of dust reminded me about our last walk. It was cold and windy. Very windy. So I asked Robert to take our jackets from the car. He hesitated, looked at me with sort of silly disbelief, but took the jackets nonetheless.
That was not all. I changed my mind two more times. Robert hesitated even more next time, but not the last time. Maybe, he assumed it was a game. Maybe he just felt pity for a person unable to make his mind. Or maybe, he understood that he was not the only one unable to make decision when so many factors were to be considered.

September 16, 2016

In December of 1995, during PCDI conference, I watched a video of a group of preteens (or teens) with autism working on some sort of art project and simultaneously “conversing”. At first, to start the conversation going, the students read whole questions prepared by the teachers/therapists. Initiating the conversation is usually the hardest thing for a person with autism. Later, the written prompts were reduced to three, two, one word. or just the question mark as a prompt to ask for something.
Although in 1995, Robert still didn’t understand one word we were saying and rarely used two or three word approximation to demand something, I, nonetheless, hoped that at some point my son would have enough prerequisite skills to benefit from such approach. And the matter of fact, I believe, he gained enough skills to participate in such program. What I didn’t realize was that his speech therapists would never learn about such approach and thus would never apply it to Robert.
Below are those aspects of the “therapy” presented in the video that I considered then in 1995, and still consider it today the most beneficial :
1. The children were sitting around the rectangular table, next to each other and facing each other. They knew each other names.
2. They concentrated on their art projects and thus the pressure related to talking was clearly decreased. “Talking” seemed like a supplement to the art project and not a main thing to fret about.
3. The emphasis was on students starting the conversation, not on them answering questions from speech therapist.
4. Written questions as the starting point (and not the speech therapist verbal prompts) were the easiest for students to internalize.
Sadly, none of Robert’s speech therapists had ever attended such conference or any other conference (for instance on verbal behavior). They were expensive, the administration didn’t want to found them, and the therapists didn’t feel the need to attend anyway.
Thus Robert has never had a chance to have his most serious language deficits addressed.
He never had such speech intervention.

I spent a lot of time working on Robert’s language. Increasing vocabulary, understanding two, three or four steps directions, understanding basic verbal concepts in different contexts, extending long vowel sounds, pacing to increase clarity, answering wh questions, talking in sentences, asking questions and more, and more, and more. But all of that was in the 1:1 setting in a format so disconnected from the real needs that it couldn’t offer Robert any real language benefits.

September 14, 2014
I was awaken at 7 AM on Saturday by Robert who was emptying the dishwasher not without some rattling noises. He probably wanted to get a drink of green tea, but all the cups were in the dishwasher. Robert couldn’t take just one cup from the dishwasher. He had to first put all of the dishes in proper places before he could take a cup from the cupboard and fill it with his ice tea. We ate breakfast and drove to Cambridge side of the Charles River. We walked along the river until we reached Longfellow Bridge. We crossed it to Boston. The Boston side was crowded with people arriving for a concert, with policemen and police women, police cars, and VIP cars which were allowed to drive on walking lanes and park on the grass. That required some adjustments on our part – waiting, maneuvering, and omitting closed sections. Still, Robert not only didn’t mind but seemed to be quite pleased with the commotion. We walked back along the river, until we reached Harvard Bridge. The wind on the bridge was so strong that I took off my glasses afraid I would lose them. Without glasses my balance was a little off, but Robert didn’t seem to notice. Or maybe he did and that was why he walked behind me, instead of getting ahead with his dad. Was he afraid that I would fell down? I am not sure.
So what did Robert learn during this walk? To be among people and be self at the same time? To be alone and yet to be connected ?
On Sunday, we drove to White Mountains in New Hampshire. We arrived just in time to get on a Hobo train. For 80 minutes, we were sitting and looking through the windows at rather monotone view of woods with the highlight of two bridges over stony river. Of course, there were snacks. Chips that Robert likes, and ice cream Robert ignores. I bought both. Robert ate chips and very reluctantly with many words of encouragement tried ice cream. Touched the spoon with his lips. After more words of encouragement and blackmail (No chips if you don’t eat the rest), he managed to eat a quarter of a teaspoon of ice cream. Slowly, he warmed up to the cold treat and ate at least ten more halves of the spoon.
Why it that important? Because Robert goes to ice cream places with other people and doesn’t eat anything. So although we are concerned with his weight gain, we also want him to enlarge his food repertoire.
At the end of the trip, Robert got a souvenir – a red bandana tied to a wooden stick. He looked at it and wanted to give it back. One shouldn’t take an object from one place to another. Thus the bandana should stay in the place it belonged to – the train. It took a lot of repetitive explanations of what the souvenirs are and what people do with them, before Robert accepted the gift and allowed us to take it to our car.
After the train ride we drove to Flume Gorge. It was rather cold and there were very few people in the park. So on the part of the trail between the Gorge and the Pool, we practiced walking in the MIDDLE of the path. That was something we had done, in exactly the same place, a year or two ago. Stretching arms in both directions, Robert tried to find a path between poison ivy on right and the steep down slope on left.
Neither Jan nor I felt an urge to teach Robert anything else as any information added artificially to our walk would interfere with Robert’s being attuned to the surrounding him nature, to his parents, and to himself. And so he was.