Sister and Daughter

October 29, 2019

This post should be an easy one to write. Nothing simpler than to write about Amanda helping her brother to learn new things, participate in different events, and expand his life almost every day. Had  Amanda not been my daughter, I could write this quickly . But Amanda is my daughter and her life is valuable in its own right. Not just as the life of a good sister and a care provider to her brother.  I am afraid that by putting too much emphasis on the part of her life which relates to her brother I would make an impression of ignoring Amanda’s own interests, perspectives, and aspirations.

As the conflicting emotions tie my thoughts into a knot, I will start with recording Amanda’s simple acts of care, love, and understanding.

1. Teaching Robert and me to play UNO.

2. Taking Robert to movies. Twice.

3.Assisting Robert and dad on a bike ride at shining Sea Sea Bike Trail in Falmouth

4. Teaching Robert to use watercolor to paint the picture.

5.Taking Robert twice to Boston by train and traveling there using subways.

6. Taking Robert to Boston by train the third time to demonstrate to me how doable that is.

7. Taking Robert for a walk along the ocean in Bar Harbor.

8. Teaching Robert to use bathrobe.

9. Never ending trips to Blue Hill, Stony Brook, and Moose Hill parks

In one way or another Amanda expanded Robert’s world beyond what we, the parents, thought was doable. That was the case with trips by train and subway to Boston.  She took over when we couldn’t keep up with Robert on a bike trail.  She noticed and addressed those Robert’s behaviors that were a problem already but which could be a bigger problem in the future. He insisted successfully on Robert wearing a robe wherever he was leaving bathroom after a shower or bath. She showed him what it is to be his friend by going to movies, parks, and MacDonald’s and just spending time together with board games or art projects.  She took from us the pressure of worrying about Robert.  The pressure we feel without even realizing it. She let us relax for a couple hours.  Most importantly, Amanda proved to us that Robert has ability to accept changes to his routines and is willing to expand his life beyond the walls, we build around him without even realizing that.

There is no hiding that Amanda became a very positive force in her brother life.  Despite dealing with her own problems and pursuing, not without setbacks, her own goals, she managed to improve Robert’s life during those two months.  She also managed to teach us something about Robert and about us. Yes, we do worry that Robert’s issues might affect Amanda.  But in the past we believed that this impact would be always negative..  Now we see it as a mixed blessing. And for now, lets leave it at that..

Fighting Entropy

October 24, 2019


It was almost midnight.

A few hours before, we had returned from a trip to New Hampshire and Vermont. We were all tired, but that didn’t stop Robert from unpacking all our things and placing them where they belonged. Pills returned to medicine cabinet, toothbrushes to bathrooms, unconsumed food  to the fridge, and dirty clothes to the washing machine. After Robert filled the machine with dark clothes, he met me at the dining room table for an hour or so of learning. He searched for the worksheets I had hidden to keep our learning to a minimum that evening. He found them and insisted on completing them . He didn’t allow our daily routine to be changed.

He did, however, took a few short breaks to check the status of the laundry, switch clean, dark clothes to the drier and start a new cycle with lightly colored clothes.

He also mixed a box of pineapple jello with hot and cold water and placed it in the fridge. Then he took his evening bath.

He was tired and sleepy. He went to bed. We, his parents, did too.

Hardly, we closed our eyes when we were awaken by Robert dragging a hamper with dark clothes.

“Go to sleep Robert.  We will put clothes away tomorrow.  Go to sleep”

But sleep he couldn’t. He had to fold or hang all the clothes. Then he went to bed.  As soon as we  sighted in relief, Robert turned the light on in the kitchen. He remembered his pineapple jello. It couldn’t remain in the fridge until morning. He had to eat it. Then, and only then he went to bed.

But not for long. After an hour he was awaken by the call of the lightly colored clothes coming from the drier. They could not be left there tangled with each other in one big mess. So a few minutes before midnight, Robert took them out and patiently carried them to their proper drawers and closets.  Only when he finished we all could finally sleep.

Robert doesn’t tolerate unpredictability.  He tries to make sure that his universe changes as little as possible.  He wants the order  of things to remain undisturbed. He craves simple patterns that repeat themselves.

Years ago he failed a simple test made of questions requiring “yes” or “no” answers.  Without bothering himself with reading, he answered “yes, no, yes, no, yes, no”.  He wanted a clear pattern not a chaotic set of “yes” and “no”.

Even now, when while working with language cards, I use the card No 14 after card number 10, Robert answers the question but puts the card aside until he answers questions on cards 11, 12, and 13. Then he returns the card 14 to the pile.

In efforts to maintain the structure of the world as he knows it, Robert creates separated knots or strings of people and events. There was a time when only some people could take him to McDonald or to Five Guys. Moreover, those people could take him to those places only on specific days. Tomorrow, we could go to the Zoo, but not to the orchard to pick up apples. For apples we can go on Saturday not on Friday.

It is I who tries to increase the entropy of Robert’s world by having him to tolerate more possibilities, more places to go, things to do, by changing orders of his patterns. By doing so, I learned that entropy is not just chaos but also freedom.







Connecting the Dots

October 17, 2019

Dots 1, 2, 3

One Friday in each month -June, July, and August, Robert with my help cleaned two bathrooms. He sprayed mirrors with window cleaner and wiped them with the paper towel. After moving all toiletries from the counter surrounding the sink, he sprayed it with bathroom cleaners and scrubbed it with the sponge and wiped it with a rag. He poured toilet bowl cleaned inside the toilets and scrubbed them with the brush. He kept spraying, brushing, and wiping until they looked clean. However, I never suggested to him to wash bathtub or shower.  I thought it would be too much for him. I didn’t want Robert to be overwhelmed thus the task of cleaning bathtub and shower, I left for myself and for later.

Dots 4, 5, 6

During the last couple years, Robert and I used Functional Routines for Adolescents & Adults to provide exposure and/or understanding of issues related to recreation, work, community, and home.  I read a text, Robert listened, looked at the four pictures related to the appropriate part of the story, and answered the questions. Each topic was presented on three different levels: beginners, intermediate, and advance.  Two years ago, knowing Robert’s difficulties with listening comprehension, I read only the shortest and simplest texts.  The following year, we moved to intermediate and this year we graduated to the advanced level.  Among the stories we read was the one about Christina, hotel’s housekeeper, who was cleaning hotel’s bathroom. She cleaned counter, mirror, toilet, and… bathtub.


We read that story on Thursday.  The following day we decided to clean bathrooms. With my minimal involvement and supervision, Robert sprayed, scrubbed, wiped.  When, I thought he was almost finished, I left the bathroom. A minute later, Robert followed me to the kitchen.  He held bathroom cleaner in one hand and the sponge in the other. “Bathtub, bathtub”, he said.

“Ok, you can clean the tub” I responded.  And bathtub he cleaned.


We moved to the second bathroom. Robert took care of the mirror, sink, and toilet.  After he finished,  he said, “Shower, shower”, and washed the shower too,

Still Learning 2

October 16, 2019

I don’t have any excuse for not writing. Yes, I was busy, but I had been busy before and that didn’t stop me from writing. In the three months that have passed from my last post many things happened.  Robert’s sister came from France and stay for two month providing Robert with much needed company.  We visited Acadia, New Hampshire, and Maine.  We made day trips to Cape Cod.  Robert’s grandma was visiting. Robert with his dad participated in a second 5K race finishing it, well, second to last, but having a lot of fun and feeling very proud. There were doctor’s visits and dentist’s visits.  There were trips to the stores and orchards.  These and many other events are worthy of being written about as many of them expanded Robert’s world and helped him grow. So, maybe I will write about them, but not today. Today, I just write about another hour of learning together.  Not because it is more important but because it is easier…

1. Robert still solves one Sudoku a day with my decreasing help.  At times he enters 5-6 numbers in a row.  Sometimes he gets stuck. He learned however to write a number above or under a column or to the left or right of the row when he doesn’t know the exact square but knows the column or row.  Then he uses that information to find other numbers. That was a step into more abstract thinking.

2. Robert knows many relatively advanced algorithms to do operation on fractions, but he still has difficulties changing word problems into math operation or equation. More complicated than that. He can write algebraic expression and solve equation of the form ax+b=c BUT answering the question, “How much more?” still confuses him. He continues to rigidly read the word “more” no matter what context as a signal to add instead of subtract.  I believed he has already understood that  this is a question about difference, but I was wrong.  I have to reevaluate my approach to teach the idea behind the question.  I possibly use family of facts as a starting point. Not sure yet.  Because of Robert’s difficulties with translating words into math operations, I gave up on practicing Pre Algebra and returned to the second grade math with the help of Daily Word Problems Math.  Everyday, Robert solves  3 or 4 problems often with the help of drawings. He seems very proud when he does so,

3. Years ago, I bought No Glamour Listening Comprehension by Linguisystem and was soon dismayed by the fact that Robert was not able to answer any question that followed a short sentence read to him by me.  I decided to go backwards and have Robert READ the text himself and then answer the question in writing. That is much MUCH easier for Robert.  Currently, Robert reads a text supported by a picture and answers 6 questions related to it.  As I notice, four – five questions he is answering almost automatically but still needs support when the answer has to be infer from the text as is not written there directly.  I ask robert to write the answers instead of telling them, as that gives me better insight.  His speech is still very unclear. Also, by writing, I hope, Robert finds patterns.  I consider it positive that some of the answers are almost automatic.

4. New set of cards, Emotions Skill Strips presents Robert with some challenge.  Not only he has to point to the person exhibiting particular emotion but at the higher level he has to point to a person who finds self in specific situation that might evoke particular emotion.

5. We still practice pronunciation with pages from old Weber’s book.

6. Each day, Robert copies the sentences I wrote. Sadly his handwriting doesn’t improve.  However, I use this opportunity to write about practical topics that seem closely related to his recent experiences. I hope that rewriting them would allow Robert to see them from different perspective.