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