November 22, 2020

Robert continues to spend his days at home. As the number of COVID19 infections in US increases every day, we have confined ourselves to our home. No hotels, no day long trips, and no restaurants. However, Robert still goes for one or two walks each day. There are a few trails he frequents at Blue Hills  and  Borderland State Parks.  He visits either Stony Brook, Moose Hill, or Broadmoor Audubon Sanctuary, although his favorite Wellfleet Audubon Wildlife Sanctuary is beyond our reach in the COVID-tainted world. The newly-acquired membership in the Trustees of the Reservations allows him to hike in World’s End and Noanet parks.  Nonetheless, even the places we frequently visited in New Hampshire, Maine, and Vermont are now beyond the radius of our constricted world. In April, it became clear that we had to find a new way to enrich Robert’s life and… ours. So in May I ordered the first Kiwico Crate.

It was not easy for my husband to assemble with Robert the color-changing crystal, which arrived in the first Kiwico crate.  In the past Robert connected some electric circuits to turn on tiny fans, or light a lamp, but he had never seen resistors before. He seemed slightly confused and distrustful. It didn’t help that Jan needed more time than usually to grasp how all parts should be connected. A few times Robert left the project and returned reluctantly only after being called many times. But the crystal, although the paper one, was magical.  By setting each of the three levers in different position, Robert could change its color.  It could be blue, green, red, orange, yellow, and of course, his favorite – purple.

Robert was slightly more patient and more cooperative while building with his dad the glowing pendulum. Couple weeks later he became very engaged while constructing with me the wooden automaton.  He found it funny that by turning the knob he made the stairs move up and down, allowing the three balls to move to the top then to slide down to the bottom. However, he constructed most of Kiwico gadgets with his sister, Amanda. They built together two racing cars (with balloons as a power source) and two shuttles. Together they read instructions and then each of them built one item. Of course, Robert was watching Amanda’s movement very attentively and followed her lead.

With each of those projects, Robert’s world became deeper and richer. But so did ours. Robert’s dad, his sister, and I, we all, caught a whiff of refreshing air passing through our stale everyday routines.

Robert likes best those crate which are devoted to and inspired by different countries. Yes, he needs an encouragement to glimpse at the pictures included in thin booklets describing specific places but he doesn’t need an invitation to build a jumping kangaroo or make a coral reef panorama included in Australia create. For three days he patiently colored and assembled all the chapels of the Saint’s Basil Cathedral from Russia box.  After completing the tiny hockey set from Canada crate, he made a few successful shots and he defended one. He built a pizza oven with turning pizza dough and moving flames – part of the Italy crate.  Yesterday, to my surprise, he was very engaged in weaving a small rug to be placed on the back of the white alpaca model from the Peru crate.

In a way, Robert visited all those countries and had a close contact with one or two aspects of their culture. Most importantly, every completed project left him proud and happy.

November 20, 2020

There are days, although few, which we don’t begin by studying together. Today was such a day. I shopped for groceries then rushed to make lunch. It seemed I was late with all my chores. Luckily, Amanda took Robert for a walk.  When they came back I was still preoccupied  with hundreds small tasks. After dinner, I sat in front of TV to watch the last half of the old movie, Charade, when Robert approached me, smiled, and said, “Work, work”. That was his way od reminding me that we hadn’t studied yet. 

Robert words, “Work, work” have a magical effect on me. I leave everything, follow Robert to our overused dining table, and help him learn.

1. Today Robert practiced dividing fractions with a page of problems from Spectrum Math. Robert had problems with division when divider was a mixed number. He wanted immediately flip over just fraction part. Thus we practiced changing mixed number into improper fraction BERFORE replacing division with the multiplication and replacing improper fraction with its reciprocal.
2. I have two workbooks Skill Sharpener Geography. One for grade 4 and one for grade 5. I wanted to start with the higher grade as the first lesson in it was about using GPS. From time to time, while we are traveling, one of us attempts to demonstrate to Robert how the GPS locates our destination and tells us  how to get there.  I should start with that, but, for reason I don’t completely understand we began with reviewing parallels and meridians. Oh well.
3. We are almost finishing No Glamour Grammar – the last worksheets in the book are devoted to additional reviews of previous concept. However, no grammatical concept or rule in this book was new to Robert. He loved that it was easy.  I loved that it was easy. today, he was finding adverbs in sentences.
4. Still pronunciation. Still page from old Weber book. Today, Robert practiced “cl” and “gl” in words or phrases.  However, I found pages of short but frequently used phrases among the materials Robert must had gotten from his school speech pathologist. So useful! So easy! Most importantly, Robert liked practicing them much more than words, phrases or sentences from Weber. I don’t understand why I didn’t use them before.
5. I stopped using exercises from No Glamour Following Directions.  Robert still has difficulties with one step directions given in this book, so there was no point of going further toward two and three step directions. Instead every day, I give him from 2 to 10 directions. I start with two but if he is not answering correctly, I quickly make additional exercises emphasizing just one concept but mixing it with other. If Robert has problem with “draw a circle AROUND” I ask him to draw a circle around or square around  something different. I add a few other directions, but the one Robert already knows well.
6. In the past Robert drew people following instruction from Usborne I can draw people.  We returned to the same book, but this time Robert is drawing scenes with two or more people.
7. For the last couple days we were also completing pages from Banking Math, old PCI publication. After reading the short text Robert had to do a simple calculation and then either write a check, pay by his ATM or withdrew appropriate amount of money from the machine to pay by cash. The hardest part of each assignment was to decide which numbers provided in the text relate to his calculations as they were many additional information. Over all, he was doing pretty well.  Maybe because each month, Robert pays by check for one of our monthly utilities.
8. Web Sudoku! It is getting better and better. Robert very quickly (before I notice) find first 10 -15 numbers, He is also very quick in finding last 10-15 numbers. He also quickly notices when something is wrong on the grid. We are working on noticing that the number must be in a given row or column and writing it besides the edges of the frame. Most importantly – Robert loves it.

September 21, 2020

In the evenings, Robert sometimes assembles puzzles, builds birdhouses, or completes a project from a Kiwico crate.  Two days ago, Robert opened a box from Kiwico. It contained cards with information about Australia and components needed to complete two activities. One was to build a jumping kangaroo, the second to make a coral reef panorama. With minimal help from his sister, Robert constructed the kangaroo and the kangaroo jumped. It jumped quite a few times as each of us wanted to play with it.

Then we moved to the second job. It required painting white coral shapes. Amanda pour three colors into small containers and with Q-tips we began to color. That didn’t take long.  We left them to dry. Amanda picked the small cups with the remaining paint, but Robert protested. He didn’t want the paint to be disposed of. He wanted paints to be poured back into tiny bottles. That was impossible. The only solution acceptable by Robert was to use the paint by… painting some more.

And so we did.  At first we used Q-Tips  in our attempt to create a picture according to rules of pointillism.  We made a lot of tiny points, but we still didn’t use all the paints. So we took cotton balls and painted with them.  Soon, the paint was gone and the picture was done. It had many colors and many spots. Most importantly, however, it contained memory of the time we all painted together feeling happy, free, and connected.

September 9, 2020

Over the years, Robert and I used many workbooks with titles that began with “no-glamour” (yes, with lower case letters) . They were published by Linguisystems, the company, not  long ago, acquired by Pro-ed. A few weeks ago, we started working with No-Glamour Following Directions and No- Glamour Grammar.  Although neither book presented anything new for Robert, he still experienced difficulties in following some of the directions.

1. Robert completed many exercises in No-Glamour Grammar  all by himself. He didn’t even insist that I sit next to him when he was writing the missing words or circling the appropriate ones. He felt sufficiently confident, to proceed without my directions or emotional support. He was proud of his knowledge and abilities. I was proud of him too. He needed suggestions, however, when he had to write sentences (or parts of them – subject or predicate ) based on ideas from his own head. Robert experiences, his observations, his actions, his feelings do not change into language without additional cues. So, the most important part of our session was to create sentences that would use a proper word or proper form of the word, I wanted each sentence to relate to Robert;s experiences, possibly the most recent. For instance, Robert had to write a sentence with the past tense of “ride”. He knew it was “rode” but he didn’t know how to use it in the sentence. Thus I asked him, what he usually rides.  he answered, “bike, horse” Now he was ready to say, “I rode a bike”  The I would ask either where he rode the bike (to the beach) or with whom he rode a bike (with dad and Amanda).  He sometimes chose one and sometimes both phrases to finish the sentence.
2. In  No-Glamour Following Directions, Robert, without any errors, completed those tasks that were self explanatory like connecting two pictures that were in some way related to each other. An object and its category (car and vehicles) , an object and its part (a cup and its handle) objects use together (pen and paper).  He had more trouble with the task that relied heavily on the words, specially pronouns. I wrote about that in https://krymarh.wordpress.com/2020/08/30/pictures-and-words/.  as I observed Robert to either quickly connecting the pictures, hesitating, or making mistakes while responding to verbal directions, I, once again, became convinced that many words which were supposed to help Robert  navigate the world, are confusing him instead.

Not sure yet, how to address Robert’s problem with language. Meantime, however, we will continue with both No Glamour book

September 8, 2020

Extinction and redirection are familiar concepts to many parents of children with autism. It was our defense against tantrums of unknown origins. Since Robert couldn’t explain and we couldn’t understand the only response on our part was pretending we didn’t notice and engaging Robert in some sort of activity.  Twenty years ago when my response to Robert screaming, biting his wrist, or kicking while stretched on the floor was to:

1. I said, “Work”
2.  I took Robert’s hand  or picked him from the floor
3. I brought him to the table where the very simple tasks waited for him.
4. Together we completed the tasks presented in toddler level, then preschool level, than kindergarten level workbooks

It wasn’t easy at first. I was standing behind Robert’s chair. With his hands in mine we kept moving  large stickers from one side of the page to the other. Not once,  Robert tried to hit my chin with sudden, backward movement of his head. I used thin workbooks because paper didn’t have the same dramatic effect as plastic or wooden pegs had when they were thrown  from the table with one, quick movement of Robert’s arm.

Soon, Robert got the idea and was ready, if necessary, to use it to deal with inappropriate behavior of others. There was a day when I was upset with another member of our family and was rambling loudly with my voice clearly expressing anger. Five years old Robert became very anxious.  He grabbed one of his workbooks, ran toward me and kept saying. “ork. ork. ork”. At that time he still couldn’t say “work” but he knew how to use extinction and redirection.

Twenty three years later, having this behavioral tool in a sleeve saved us again.

Robert’s sister Amanda went for an afternoon hike with a friend. Robert shouldn’t be upset because he went for a walk with her in the morning.  He should understand that his sister has a right to go out without him. He shouldn’t be upset.

But he was. “Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home…..”

Yes, we explained that Amanda has her friends too, that she has the right, that she will be back in a couple hours.  But, Robert’s response was the same, “Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home Amanda home, Amanda home, Amanda home, Amanda home, Amanda home,”

Finally, I opened a new puzzle box. 100 pieces puzzle by Eurographics with Emojis Sadness.  I pour the pieces out on the dining table. I didn’t say anything. I left the room. I didn’t need to bring Robert to the table. Maybe he found assembling puzzles interesting. Maybe it was his utilization behavior which “forced” him to “fix” the puzzle. Whatever it was, Robert sat down and began putting pieces together.  During his time only twice, softly he said, “Amanda home, Amanda home.”  My husband and I regained our breath.

However, as soon, as he completed the puzzle, Robert began again with mixture of the  impatience , anger, and desperation,” Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home, Amanda home Amanda home, Amanda home, Amanda home, Amanda home, Amanda home,”

I responded with another box of puzzle.  This time Eurographics Emojis  Joy.  It worked again.  As soon as he finished, Amanda returned home.

What a joy.

September 3, 2020

Robert didn’t like changes. He searched diligently (including the outside trash can) for a thrown away dish. He retrieved it and put it back in the cupboard. (Well, he agreed to place it in the dishwasher.)  He was reluctant to unpack and try on a  new pair of pants or a new shirt. By repeating, “Store, store”, he insisted on returning to the store any new article of clothing. He protested when at the start of a new month, I removed the calendar page displaying the previous month. It took a lot of “arguing” and a long time to convince Robert to adjust his dressing pattern to the changing weather.

Not anymore!

As the morning of one of the last days of August turned cooler, we asked Robert to wear a white T-shirt under his other shirt. He wasn’t convinced. He just put on his striped red and blue shirt. “Robert”, said his dad, “it is colder than yesterday. We won’t go for a walk, if you don’t wear a white shirt under. ” Robert agreed. The following day, before dressing up, Robert showed me the white T-shirt as if either asking or demonstrating his willingness to wear it. As he uses a very few words the exact meaning of his actions remains foggy.  Nonetheless, I responded,   “Yes, it is a good idea to wear it”.

Robert noticed a new blue shirt resting on the chair.  It still had a tag attached to it. He brought the shirt to me.  “Yes, it is for you. Could you try it? ” Robert did.  It was his size. “OK, it looks very well on you.  Cut off the tag and rinse it in the washing machine. ” I advised. Without a sigh of protest, Robert did just that.

I purchased a few food containers. I needed to replace four of the old ones and use remaining four to organize the food in the pantry. When Robert was still sleeping, I poured the flour, buckwheat, and two kinds of pasta into new jars. I left empty, old containers on the kitchen table. When Robert woke up, he examined empty containers for a while. he noticed the new ones already swerving their purpose.  “Robert, we don’t need those jars any more. Could you carry them to the garage and put them on the shelves?” Without hesitation, Robert took two of them to the garage, returned for another two and completed my request. It has to be clarified, that I didn’t Robert to throw the old containers away.  Such change would be much too radical for Robert.

On the evening of the last Tuesday (September 1st), Robert took dad’s hand and led him to the kitchen wall. He tapped on the calendar page which was still showing August. Dad understood, “Yes, we need to change the month. Take it off Robert”. Robert carefully tore the page and brought it … to me.  He wanted to show me not only that he understood the reasons for removing calendar pages. He was telling me something much more important.  He was telling me that HE CHANGED.

As negligent as the changes in Robert’s attitudes and behaviors seem to others, for us they are huge! We noticed them with surprise and relief.

I still wonder, why now?

Is it possible that when so many things remain the same or repeat themselves in a circular patterns, Robert longs for a change and accepts it whenever he finds it?

September 2, 2020

Since Robert’s program closed in the middle of March, Robert’s sleep pattern has changed. He sleeps longer than he did before, as if he believed that there were no reasons to get up. It is the behavior I observed in the past during those times (13 and 9 years ago.) when Robert didn’t have any program to attend to. He didn’t want to get out of bed before 10 and sometimes, he stayed in bed until noon.  I relatively quickly realized that without a class to go to, Robert felt that there was no point of getting up. So, I had to prove otherwise. It wasn’t difficult to do so. Movie theaters, museums, restaurants, zoos were all opened. The stores didn’t ask for “just one person from a household” to do the shopping. There were swimming classes and horseback lessons to attend. Yes, there was no classroom for him to learn, but the rest of the world was accepting him.  The fact that there were many places to go to, motivated Robert not only to get up relatively early but also to patiently study with me. But of course, he still wanted to go to school.

It is different now. We, Robert’s aging parents, won’t take him to restaurants, even though they are open. The matter of fact, we don’t take Robert anywhere but to different parks.  No movies, no stores, no Roger William Park and Zoo, no hotels, no museums. Just parks.

Thus, the daily walks became highlights of Robert’s days. Each day after lunch, he makes plans for the next day. He tells me what he expects for dinner and where he wants to go for a walk. One day, he says, “Cranberry Bog” another day he says, “Blue Hill”,  And that is where he goes.  But not only there. Because the trail in Cranberry Bog is relatively short – less than 20 minutes, he also goes to either Audubon in Stony Brook or Moose Hill (Boardwalk Trail). But that is not all. Since Robert’s sister, Amanda,  came home, she has been taking Robert on a second excursions of the day.  They usually go to the places he never hikes with his father. They walk on different and usually longer trails in Moose Hill (Bluff and Vernal Poll). They explore  Boardwalk leading to  the Ponkapoag Pond in Blue Hills, or Endean trail along Neponset River.

Clearly, the walks became very important for Robert. So, when in the morning, Robert responds second or third time to my attempts to wake him up with  “Five more minutes” , I do remind him what is planned for the day and he gets up.

To my surprise, however, there were also equally valid reasons for Robert to start the day.  The need to fold laundry or put away the dishes!

Fulfilling his obligations!

T

August 30, 2020

A few years ago, I wrote about Robert’s difficulties with learning those basic, little words that squeeze between other words connecting them to each other and to the space and time concepts that our brain tries to establish. I noticed then, that Robert grasped quickly the meaning of the word “reciprocal” but had difficulties with the word “instead”.  The matter of fact, I believe that it was during learning how to divide fractions, (telling him “multiply by reciprocal instead of dividing” and placing a reciprocal fraction and a multiplication sign on top of the division sign and the divisor) when Robert grasp the concept of “instead”.

Over the years we spent many hours practicing “on, off, under, below, next to, far, near, around, over, on the bottom, on the top, left, right, before, after, behind, in front” and many others. We practiced using many worksheets taken from books on following directions. We practiced during driving. “We are on the bridge”, “The canal is below“. We are under the bridge (I meant overpass). The red car is in front of us.  We pass the truck.  The track is behind us,”

We practiced while emptying a dishwasher. Although Robert knew where to put the silverware, plates. and cups, I, nonetheless, often and to his slight irritation, kept describing what he was doing. “Great, you put large plates on the top shelf.  You placed plastic containers on the bottom.” etc.

However, when  a couple of weeks ago, we returned to the easy (EASY?!) first pages from No-Glamour Following Direction, I realized that the little words remain the stumbling blocks on Robert’s path to more practical language. He had difficulties differentiating between, “Draw a circle on the picture” and “Draw a circle around the picture”. He had problems with “on” and “off” as they related to the pictures (He doesn’t have problems with turning something on or off.) He was unsure about top and bottom.  He hesitated with below and over.

And yet, despite his confusion in regards to those little words, he still  managed to complete thousands directions given to him over the years. He did that by using his brain and deciding what makes sense in a given environment and context .  I suspect that there is a part of his brain that does a lot of thinking WITHOUT language but through the vivid images of the world that surrounds him.

He has been learning language slowly, but for him it remains a second or a third mode of understanding,  He puts a lot of effort into learning. He learns for my benefit, for the benefits of people he loves, appreciates, and has contact with.  He learns it to better understand us.

He knows, and that often frustrates him a lot, that we are unable to learn from him.

I cannot see, what he sees.  I cannot understand what he knows. So, I have to teach him our ways of communicating, our language. This way he can try to translate his multidimensional pictures into linear trail of words.

August 29, 2020

Robert and I used to buy food in Stop and Shop Supermarket. We usually bought ten to twenty items and Robert ran them through the scanner at the self register. He used his ATM card to pay for the groceries. Scanning wasn’t a problem. He mastered that easily. However, he still needed encouragement to search for 4-5 number code on some of the vegetables or for a specific item among the pictures on the screens. He was getting slightly better using his alphabet skills to move the screens to the desired letters, but he still needed practice.  I do miss going to store with Robert and watching him learning to do cashier job.

I also miss Robert reminding me what we were supposed to buy. Before most of the trips to the grocery store, Robert made a shopping list. He put down a few things he considered important and let me add some other items.  However, I might forget the list, or there might be a product which we needed but not on the list.

There was time when Robert was adamant about NOT BUYING  food which was not on the list. Luckily, later, he understood that the lists are not perfect and needed to be supplemented by additional items. So, he not only let me buy something not previously written on the list, but he also placed in a shopping cart things which were not on the list, but were, nonetheless needed (like eggs).

Before COVID19 changed our shopping habits, Robert never wanted to buy things which we already had in the refrigerator. But when, starting in March, I tried to keep two week supply of food, Robert attitudes changed.

Maybe because he is not going shopping anymore, he puts more efforts into making  lists of needed products.  Moreover, he wants to have reserves of food.  He prepares the list usually in the late afternoon, knowing that I shop early in the morning during hours for people over 60.

One evening he made a list:

2 peach jello

2 strawberry jello

2 lemon jello

2 lime jello

2 eggplant

2 poblano (he meant two packets of poblano the way it has been sold in Walmart)

2 eggs (he corrected himself to write 12 when I asked him to choose between 2 and 12) Possibly, he meant 2 dozen, but I am not sure.

1 mozzarella cheese

2 Mexico ( Not sure if I understood, he brought me almost empty packet of shreded cheese and read “Four Cheese Mexican.

That was all.  Robert put the card on the kitchen table, took a bath, and went to bed.

We did too.

Around 2AM at night, extremely agitated Robert came into our bedroom screaming, “Ketchup. ketchup, ketchup, ketchup.”

It took me a while to understood the reason for his distress. Then I said, “OK, Write it on the list. ”

Robert calmed down, went to the kitchen, completed the list, and returned to his bed.

August 13, 2020

I cannot say that our days are difficult.  I cannot say that they are easy. They seem vague like out of focus pictures. Although they pass quickly, they seem not to move at all. We repeat the same activities every day. So, today seems like yesterday and the day before that.  Knowing that tomorrow will be like today, we don’t make any special arrangement for tomorrow.

Yes, we continue to study by following the simple and rigid pattern. However, we mostly review topics we dealt with before. No giant breakthroughs.  Not even slow accumulation of knowledge or skills. And yet, our hour or two of learning together became the cornerstone of our days. After breakfast (as late as it happens now) Robert joins me to solve a few math problems, practice pronunciation, read, and write a few sentences about his day.

A few times, we didn’t study in the morning. It happened  either because I was shopping or because one of us had a virtual doctor’s appointment. But if I thought that we could skip learning, Robert proved me wrong. It was not his love of learning but his OCD that precluded him from going to bed without an hour spent on completing  his worksheets.

The plan for desk ( well, dinner table) work is simple.

1. A few math problems – currently from Singapore Math 5th grade.  Today – rounding number to two decimal places.

2. Grammar and Punctuation. Today- using comas in letters.

3. Reading. A chapter from Pearson English Active Readers Anne of Green Gables.

4. A text in Functional Routines. Today-  how to make salad for dinner.

5. Pronunciation.  Today – words and phrases beginning with “sn”

Also: one Sudoku, two pages from Logic Links, and a few short texts to practice inference.

Robert concludes his study with coloring a page from, not very interesting coloring book.  He  hangs the picture on the refrigerator and gets ready for a walk. .