No Recovery but Progress

September 24, 2014

Yesterday, Robert and I went to the Zoo in Providence. We came later in the day. A couple of hours before closing. No crowds! Nice weather for a walk! And surprisingly more to see than in the summer. Those animals which don’t like hot weather and usually hide from the view in shady places, yesterday showed themselves to us. Red wolf and two snow leopards. Grey kangaroos, in the Outback section of the Zoo, which usually sleep far away from the people’s path, jumped rather closely to us. Robert took notice and walked half a step behind me. I suspect, he wasn’t thrilled by the freedom those animals enjoyed and would rather see them behind glass or at least on leashes. But he said nothing.
He also didn’t show any disappointment that the watermelon frozen lemonade wasn’t there, although he expects this treat in the Zoo the same way he expects elephants or zebras.
I like visiting zoo mainly because it is the place which reminds me over and over again, how much progress Robert made in the years that have passed since our first trip almost 19 years ago.
No, Robert didn’t recover. He is not able to visit the zoo on his own, or drive himself there. He cannot say that zoos are for children and not for 22 years old young men. No, Robert hasn’t recovered from autism.
He doesn’t have tantrums in the middle of the paths, because he wants something we cannot understand.
He can write what he wants if his words come out scrambled beyond recognition.
He looks at the map of the zoo and shows or tells me where he wants to go first.
He follows me flexibly when I decide to change the route.
He knows the names of most of the animals.
He reads some of the information presented next to animals’ enclosures.
He is relaxed and so am I.
That is not a recovery, but it is enough to enjoy the day.


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.


As We Were Walking

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.

On Making, Changing, and Honoring Decisions

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?”
And so we went.
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.

Speech Therapy That Wasn’t

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.

Learning on a Hobo Train and Everywhere Else.

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.

Something About Something

September 12, 2014
The official goal of the last few tasks taken from Writing Extensions Level B was for Robert to learn to write “topic” sentence that would open a paragraph. But Robert’s learning is much more complicated than just learning one thing at a time. Moreover, there are times when more advanced ideas are used to teach something very basic, and thus the hardest to teach, like “SOMETHING”. Yesterday and today, in the process of formulating the main idea of the paragraph, Robert had to come up with more general words. At first it was easy. He could use ANIMALS instead of CATS and DOGS. It was simple to find a category for both objects. Then, it got a little less clear. What word could address two different objects such as BOX and BIKE to complete the sentence, “Each woman carried…..”?
SOMETHING of course.
Important word, but taken for granted by those who use it and overuse it in everyday communications. It stands for any object without really naming it. Like a mathematical variable which can be substituted by any number. Robert probably had difficulties with vagueness of the word, its lack of precise meaning. Using this word, I believe, for the first time in Robert’s life, was much more important achievement than writing a general, first sentence in a paragraph.

I hope that while completing his paragraph, Robert also understood how useful that word is, as it not only can name every object Robert knows, but also those things, which names Robert doesn’t know… yet.

A Week and a Half in Review 2

September 10, 2014
1. Airports.
Robert’s sister went back to France. We all drove her to the airport, but given all the security, we did not spend much time together. Just a few quick hugs. Still, very important for Robert. He learned to explain someone’s absence in his life by going to airports. When his dad worked almost three years on another coast, and when Amanda was going to college in Oregon, Robert and I were frequent visitors to the airports. We arrived at nights or in early mornings. We mostly waited. Those trips helped Robert later to go through the security on his two airplane trips to California.
2. Driving
The previous weekend, we drove a lot. On Saturday we went to New York. On Sunday, Robert and his dad went to New Jersey. On Monday, we drove to Pennsylvania and then back to Boston. Long time in the car. Robert took it all as calmly as ever. He was very quiet. As always. When he was very young, we often took him on short car trips as they always calmed him down. And calmed us too. That is why I wasn’t afraid of driving with him across The States to California and back. So 8 hours with three short breaks was surprisingly, pretty relaxing.
3. Picking Fruits.
Apples. peaches, nectarines, blueberries, and raspberries. Ten years ago, we went to pick apples in one of the Massachusetts orchards. There were still a few peaches on the peach trees. Robert dared to taste one. He liked it, he ate two. It was the first time he tried peaches. So we picked some more, paid, and brought them home. Robert didn’t touch them at all. Nothing could entice him to try. Robert has never touched blueberries or raspberries when they came out of the refrigerator. I thought he didn’t like them. But as we walked through a park on Cape Code, and later through Stony Brook Audubon, Robert couldn’t stop himself from picking wild blueberries. He ate them all. So we understood that Robert would eat blueberries and raspberries straight from the bush, but never from refrigerator.
That same rule probably applied to peaches. I should bring Robert to a peach orchard every year to have him try peaches. But somehow, year after year, we missed the peach picking time. And now, ten years later, Robert didn’t want to try peaches or nectarines, even when he took them out from the tree. After ten years, he didn’t remember the taste and was, as always, distrusting “new” food. Still, he ate so much of blueberries and raspberries, while we were gathering them, that I felt obligated to pay for containers we didn’t fill up. Except, at Carlson farm, I couldn’t. As raspberries and blueberries are concerned, you pay only for what you picked. We still picked a lot, but of course, Robert hasn’t eaten even one peach, nectarine, raspberry, or blueberry we brought home.
Luckily, he eats apples.

Learning How to Teach

September 9, 2014

For the last few weeks, Robert was working on “Writing Extensions”, a part of Reasoning and Writing Part B curriculum. He was presented with a picture and he was asked to write two sentences about it. One sentence about one character (or one group of characters), the other sentence about another character (or another group of characters). The exercises were very simple, still they provided a great opportunity to understand concepts and learn to discriminate between two characters and their actions. Today, Robert was presented with a different task. He had the same picture, as the one he wrote about just a week ago. This time, however, he had to start with a general sentence addressing what both characters (or both group of characters) were doing.
For instance:
In the past he wrote, “The older women were raking leaves. The younger women were mowing the lawn.” This time, he had to start with a sentence such as, “The women were working in the yard”, and follow with the details expressed in the two sentences.

This way Robert was exposed to a new way of thinking. Writing a topic sentence that would embrace two details is a step in generalization or… abstract thinking. The fact that the tasks were easy shouldn’t diminish their importance. They were steps leading into new realm of processing information.
I admired the fact that the authors of the program started with practicing writing details first. After all they are foundation for more advanced thinking. The fact that the topic sentence comes first in the processes of writing paragraph shouldn’t obscure the fact, that in real life, the thinking starts with details and changes into more abstract forms later.
It seems obvious, and yet, I have never been aware of that fact. Only through teaching I was able to slow the process, analyze it, and finally notice forgotten roots of our thinking.

I have to add, that we worked on Writing Extensions Part B while simultaneously working on Part A of Reasoning and Writing.
As I wrote before, some concepts in part A are much harder for Robert than the concepts in Part C.

The second lesson on teaching came from Singapore Math. In the past. Robert was able to change fractions with 10 or 100 in denominators into decimal. To my surprise, however, he became often confused when it was mixed fraction.
So 3/10 Robert change almost automatically into 0.3. But when he had 7and 3/10 he made mistakes changing it into 7.3.
I was able to write a few pages of exercises in which the first type of problem was followed by the second where the fraction part was the same.
The problem was, that I didn’t start this way. I used this approach after I noticed Robert having difficulties. The authors of the Singapore Math, started this way. It is so simple. They were showing relation between the kinds of problems.
My fault was not realizing how different those two types of tasks might be for Robert.
This is probably my Achilles’ heel. Instead of thinking about teaching before I start, I learn as I go. I do not anticipate possible problems and thus I am forced later to fix errors that shouldn’t happen.

Defining Moments. Really?

September 4, 2014
It was very hot last Tuesday. Still, Robert and I spent the morning at home. Robert was finishing the laundry he started on Monday evening after we returned from Pennsylvania. We studied for 90 minutes following easy routines to get back on track after three days of travels. After lunch, I suggested and Robert consented to drive to Castle Island in Boston and take a walk around the bay and the fort. When we left the car, the hot, humid air almost knocked me out. Soon, however, the breeze from the ocean relieved the heat. Slightly. We watched airplanes take off, kites soar, and seagulls glide over the water. We watched people swimming, cormorants diving, and sailboats floating. It was a very relaxing walk. On a way home, we stopped at Polish Deli. Robert chose his favorite chocolate. I paid for it and for a few other items and we left. Then, I decided to stop in the Irish Deli to buy White Breakfast Pudding. We went to that store once before. Robert knew the way, opened the door, got in and…. started screaming and slapping his ears. I was two steps behind. Two young men who worked there were startled, but recovered quickly. I said very sternly, “Robert, calm down. Everything is fine. Calm down. We will buy white pudding for dad. He likes it. ” Robert calmed down almost before I finished. I apologized and so did Robert. “We understand”, said one man.
The rest of the day was uneventful. We stopped at Stop and Shop Supermarket to buy milk and bread. Robert put all the shopping away, helped with dishes, and watched Netflix on his IPAD.

I don’t know why Robert started screaming in the Irish Deli. Maybe those two friendly men who welcomed him in a very pleasant way did scare him as Robert is not used to being talked to by strangers. Maybe the store looked different than what he expected. I don’t know and Robert won’t tell me.
I know that it was one of those moments happening from time to time when Robert demonstrates “atypical” behavior. But this 10-20 second in the span of the whole year seems almost nothing. And yet, it is in those instants that most of the people form their opinions about Robert.

Of course, we will visit the same store next week. The worst thing would be not to go there again. Robert will have an opportunity to conquer his anxiety and the young men will get a chance to understand Robert better.