The most amazing thing about Nolan was that he knew what he wanted and went for it. He wanted to express himself so he talked. When that didn’t satisfied him, he drew pictures showing the world as he had seen it. There were his own interpretations of books and movies. As that was not enough, he decided to act and to direct. Mainly. he wanted to recreate scenes from the musical Annie, and thus he kept gathering… empty water bottles. He wanted to tell more, so he sang too.

He wanted to expose his palate to different flavors and thus he mixed all juices and cokes and lemonades he could find in my refrigerator. Although as food was concerned he usually settled for pizza.

He wanted to visit places and people, and he did. His parents took him to Hawaii, Grand Canyon, Yellowstone and many other places.

He knew what he wanted and went for it. I find it amazing. As I get older I realize that not many people know what they want and even less have courage to aim for it.

To Nolan Parents

Polish priest and poet Jan Twardowski wrote: Let us hurry to love people, They depart so quickly

I remembered that poem when I was thinking about Nolan. He was loved. You all did hurry to love him. Each of you in your own way.

You opened the whole world for him. Travelling with him to Hawaii, Yellowstone, Great Canyon, and many other places.

You searched for environments that would enrich his life; be it schools, adult programs, or programs in his community, and of course, his church.

You were gently educating others about Nolan’s ways of perceiving the world and by doing so, you not only tried to smooth Nolan’s path but also enrich and enlarge other people’s minds.

You were supporting Nolan’s talents, his never-quenched thirst for creative expression – drawing, singing, dancing.

You did so much more. You hurried….  

Missing a friend

Robert never hesitated when he needed to write down the name of his friend, Nolan.

The educational worksheets that were supposed to test Robert’s social skills and help him clarify the meaning of the word “FRIEND” began with the obvious direction:

Write the name of your friend…………………………………………………

Robert always wrote, “ Nolan”.

The following questions tested Robert’s knowledge of his friend’s habits and his preferred activities.

1.What Nolan_____ likes to eat? ______pizza, cookies.

2.What       ____Nolan____ likes to do?  draw, sing, talk.

3.What do you do together? _____watching Annie.

The questions are simple but not superficial. They address essence of what friendship is: knowing each other, sharing meal, communicating, and doing things together.

Nolan was Robert’s friend.  He was his only friend. As Nolan went to meet his Guarding Angels, the spaces on the friendship worksheets become empty.

Nolan, we miss you. we miss you very much.

I haven’t been writing in a long time. During COVID it has been harder to write than before. I don’t know why. But what also pushed me away from this blog is the change made by WordPress to the way this blog has to be written. The small thing but it alienated me.

I am old and don’t like changes made by the younger, smarter, and, I dare to assume, conceited people. Even more irritating is that they made those changes on my behalf. Of course, without consulting me at all.

So, I feel lost and humiliated.

Still, before I find someone who would help me move this blog somewhere else, to the place without so many confusing but really empty options, I am forced to write here, to do a simple accounting of Robert’s and my learning during COVID.

We did a lot of desk learning. However, despite the fact, that each day we spent between one and three hours of studying, I have the feeling of failure. I knew that it was not what Robert needed.

And I became too bitter to write. After all, Robert should be in a community. He should be among his peers. He should learn new jobs He should learn the way to act around people and with people. This is what I couldn’t teach him. Nobody else did.

We read about skills needed for community and for work, Completing the whole Curriculum I got even more bitter.

I realized that whatever I was doing was not what Robert needed. I realized that I was not able to entice/ force others to address Robert’s needs. There are organizations which are supposed to participate in his care , but I am unable to work with them. Well, it is more like they are not able to work with Robert.

I realized how little there is now for Robert, and how little it would be in the future. So, I am bittter.

In the first months of COVID, we did a lot of academic work. I used teacher’s made material to go over, social studies. We started with easy second grade level and progressed till six. We continue with math skills.

Later we moved toward more functional learning. From Remedia Publication we completed Everyday Reading and Writing, Everyday Math. From Attainment Company we completed Focus on Safety, Focus on Community, Focus on Feeling, and Focus on Work. Still, I got even more bitter. All those skills should be practiced in a group of his peers, he should be exposed to work/volunteer opportunities. He should be….

As we work on speech production using Weber workbooks and as I struggle to help robert produce some of the sounds, I am mad too. There should be a good speech pathologist working with him. There should be someone who knows how to use tongue depressor, who knows what cues to give for each and every sound. It shouldn’t be me, for whom English is a second language and who still cannot differentiate between sounds of short vowels “o”, “a” or “u”

I am not able to teach him that, but I still try because I am even less able to find someone who would help him learn, who would support him.

I see, that despite everything we have been doing, Robert is regressing.

So, I am bitter. very bitter.

September 26, 2021

How? 

By learning new things.

By developing new attitudes.

By visiting new places.

By meeting new people.

By having Amanda home….

That with the arrival of COVID19. the Robert’s world shrunk is obvious. His program was closed many month and when it partially opened Robert, with his unpredictable allergies and irritating asthmatic cough, couldn’t participate. For 198 months there were no horse riding. no swimming lessons, and no skiing instruction. 

But then, there was Amanda, Robert’s sister. 

She came home in the middle of July 2020, completed her two weeks long quarantine, and  began  pushing the invisible walls surrounding Robert. 

1. She took Robert for walks in many parks not far from our home. We, the parents new only a few which we visited regularly.  Amanda with an IPhone APP discovered many, many more. she took him on longer and more challenging trails. Robert loved it. 
2. Robert’s dad took him on bike trails on Cape Cod.  Amanda, however, dared to take Robert on bike rides to places in our neighborhood. They drove(for instance)  4 miles to Starbucks for Iced Carmel Macchiato. 
3. Amanda accompanied Robert to NEHSA at Little Sunapee Lake for his kayak lessons. That was not enough for her, so she bought inflatable two person kayak, so Robert, his dad, and she could go kayaking closer to home.
4.  She completed with Robert many Science project with the help of KIWICO kits, but more importantly she engaged Robert in baking all kinds of spinach pies.  I am not sure what Robert liked better, those pies or the time spent in the kitchen as baker assistant. 
5. She introduced to Robert new Netflix movies and showed him how to find them.
6. She made us, Robert’s parents, realize that more often than not, we have our own hazy biases that blind us to Robert’s abilities.    Last March,  we celebrated Robert’s 29th birthday. Robert blew the candles from his ice cream cake and then I took a knife to cut the ice cream.  Amanda protested, “It is his birthday, he should cut the cake.”  Of course he should. After all he could slice his bread since he was 4 years old.  So why we, the parents,  have never before let Robert cut his own birthday cake?  How many other tiny little things we keep from his reach? 

A week ago, Amanda returned to Paris. Robert misses her terribly, but hopefully, he also understands that his sister has her own goals she needs to pursue. Moreover, he wrote on a calendar the date, she is coming back, and every other day, she point to the written date and says, “Amanda home.” 

June 11, 2021

I have been writing this blog for over 9 years. At the beginning I wrote 7 to 10 posts each months. As the time progressed I became less prolific, less analytic, and less creative. Most importantly, I have never been able to organize this blog by dividing it into separate sections that would address and develop different concepts/topics.

A few times accidental readers, complain about the organization.

And rightly so.

It is impossible to find the main theme or to follow a few distinctive paths.

At the beginning, I felt that there was a value in simply recording what I had noticed and learned while teaching Robert. However, that value became forgotten and/or deformed as more and more posts piled up one on top of another.

So in a few days, this blog will cease to exist. To the few remaining readers. I say, “Thank you for being with me and Robert”

Maria Hrabowski

krymarh@gmail.com

June 10, 2021

Moon Sang-Tae, the thirty something fictional character in a Korean drama It’s OK to Not Be OK, has autism. His autism, however, is very different from Robert’s. Because Sang-Tae resembles Rain Man not Robert.

Unlike Robert, Sang-Tae has enough language to communicate not only his needs, but also his observations and his…feelings. Robert communicates his basic needs in one word utterances which are understood only by those who know him.

Unlike Robert, Sang-Tae has, so called, “splintered skills. He is a great illustrator while Robert has difficulties copying simple drawings.

Unlike Robert, Sang-Tae can become aggressive when in distress. In stressful situations, Robert exhibits self-injurious behaviors but doesn’t hit anybody.

With all those differences. I consider the K-Drama It’s OK to Not Be OK to be one of the best presentations of issues related to autism.

While watching each of the sixteen parts of the series, not once I held my breath deeply touched by the interpersonal dynamic as it relates to Moon Sang-Tae.

There were obvious similarities. The cards depicting emotions hanging on the wall to allow a child/person with autism decipher the feelings on real people faces. No, we didn’t have cards placed on the wall. Instead, we had them spread on the table many, many times. We played memory game or bingo with them. Only later I realized, that Robert “smelled” our emotions and reacted not by naming them but by tuning to them. I suspect that Moon Sang-Tae also “read” other person emotions not necessarily by visual cues but by feeling the air around that person.

Both Sang-Tae and Robert have caring siblings, who deal with their respective brothers with love and determination while hiding skillfully resentments and hurt they must feel in many challenging moments.

When Sang Tae squeezes himself between his brother and his brother girlfriend (well less and more than girlfriend) during their walk, I thought about Robert placing himself between Amanda and her friend Igor.

As I empathized with Gang-Tae feeling of being less loved than his brother I thought about Amanda. When she was younger, she believed that the sentence I often used while talking to Robert, “I love you AS MUCH AS I LOVE AMANDA” meant that I loved her less.

But it is more than that. It was Amanda who was born three months prematurely and it was Robert who, in at least a few quickly passing but nonetheless real thoughts, was going to watch over his premature sibling.

As I wrote above, Moon Sang-Tae presented himself very differently than Robert and yet, I still saw Robert, Amanda, and myself in It’s OK to Not Be OK.

June 6, 2021

I have not written anything during the last six months. What should I write if everything seems to remain the same? Weekends are not different than weekdays.

Every day now, Robert sleeps longer than he used to as if there was no reason to get up early. He eats his breakfast, studies with me, goes for the walk to one of  parks, eats late lunch/dinner, naps, watches TV, or completes a project, and, after a small supper and a long bath, he goes to sleep.

I realized how much more he sleeps at home when we traveled to his grandmother in Pennsylvania. During the five days we spent there, Robert was awaken very early and ready for new places and new experiences. However, as soon as he returned home, the sleeping became his favorite activity again.

He sleeps as if repeating the same pattern of food and activities was not a good reason to get up.

Yes, Robert likes patterns, and still expects his dinner menus to follow the nine day cycle:

poblano, eggplant, chicken fingers, hamburgers, poblano, eggplant, chicken fingers, hamburgers and TAKE OUT from one of his favorite restaurants.

He makes sure that this ninth day is special. So special that even the restaurant can be different each time.

There are at least 15 new trails Robert visited during the last year. However more than Audubon parks or Trustees reservation, Robert likes Blue Hill State Park. He insists on visiting Blue Hill at least twice a week.

He studies with me almost every day, but doesn’t insist, as he did in the past, that we complete all the worksheets left by me on the table. There is nothing very exciting about our studies lately. We mostly review what Robert learned (or at least was presented with in the past.) So, I cannot really claim that he learned something new. Since he doesn’t make recurring errors there is no reason for me to think about new approaches to teaching to address those errors.

The only thing he likes to do now, are the Kiwico projects which Robert completes with Amanda’s assistance twice a week.

He still prepares (almost independently) breaded chicken tenderloins, and helps with other dishes.

As before, he still does laundry. Using one of the words: “dark, colored or light” he informs me which pile of clothes he will wash. Sadly, he often forgets to use laundry detergent or change the washing cycle.

The only new development is Robert rinsing dishes and placing them in the dishwasher!  He does it, without being asked every time he notices a few dirty plates or bowls in the sink. Lately, he even dared to wash a few pots and pans.

Unfortunately, he poured all the oil from the pan into the drain.

Oh, well.

December 15, 2020

Warning:  This is one of the boring posts, I write rather regularly to document what Robert is learning. However, I found out that during the process of writing I am also rethinking my approach to teaching.  I discover missing opportunities, and find more appropriate methods. I started writing this text hoping to prove that even our desk, academic studies do prepare Robert for a real world. I drifted and probably missed the point, I attempted to make. But I learned something else. So let it be. 

Facing the Real World while Sitting at the Desk

To be precise, it is not the desk, but the dining table. We are sitting there every day  doing our routine studies – math, reading comprehension, a little science, some geography, pronunciation and other language related exercises.  Meantime, the real world at large remains mostly inaccessible.

As soon as I wrote the above sentences, Robert, who was folding and hanging laundry, began to scream. I didn’t know why. Maybe something hurt.  But he couldn’t tell me what. So, as always , I brought his inhalers, in case his screams had something to do with sinuses or asthma. I gave him additional Metamucil cracker and a glass of water in case the problem were gases. I suspected that his noises might be related to a piece of garment he couldn’t locate since yesterday.  Unfortunately, we didn’t know what exactly was missing, although he clearly wrote: “Blue shirt Robert”.  Any way, he froze standing next to the pile of clean clothes and screamed. I deduced that my presence didn’t help either. I quickly made a list of topics to write about in this post and removed myself from Robert’s proximity. Not much later, he calmed down, put away all the clothes and came to the dining table to study.  Just like that,  

1. Real-World Math 1                                                                                                                                                                                                                                                                    I I bought it more than 8 years ago for Robert’s classroom. The teacher kept the original but made copies of the student’s worksheets and gave them to me. I placed them on a shelf among other copies and forgot about them. I probably thought that they were too difficult for Robert then. I don’t believe that anymore, although we take it slowly.                              Today, we worked on an assignment which asked Robert to choose food from the restaurant’s menu and 1. find the cost of all chosen items. 2. Find the amount of tax related to that cost. 3. Find the amount of 20% tip. 4. Find the total cost of the dishes, tax, and tip. Since every nine days (always every nine days) Robert want take-out, We will be doing the same thing on computer ordering that is. The counting we will still do on paper.
2. Comprehending Descriptive Language                                                                                                                                                                                                                                        This is another very old workbook. In the past, I read two words describing one of two pictures in the box and Robert was supposed to point to the correct one. Now, I give Robert the instructor’s page and Robert reads and circles the proper drawing on his own. Those are very easy tasks. I gave them to Robert mainly to increase his independence from me.
3. No Glamour Problem Solving Robert read a short text – one or two sentences and then circled one of three sentences which correctly stated why there was a problem. I am not sure how much Robert understood. I need to rethink the presentation of those tasks.
4. No Glamour Inferences we are still doing again (yes we did that before) first pages with easy problems. Today Robert was supposed to say, what was the missing part of the presented object.  To tell in a full sentence why the missing element was important part of the object, was much, much harder.
5. Saxon Math grade 5th. Today, Robert completed one page with relatively easy problems. Well,  with the exception of those tasks where either one addend in addition or minuend or subtrahend in subtraction were missing when those operations were written vertically (one number under the other).  Since Robert would know how to solve those problems if they were written horizontally, I have to assume it was my fault for not telling him to switch from one way of presenting problem to another. I think, I was as surprised as Robert was with those form of presenting operations. So instead of giving him simple way of translating something new into something he knows well, I lead him through torturous path of finding the answer.
6. No Glamour Language Elementary. We became familiar with this workbook years ago and completed easy (first) pages from different chapters . Now, we are dealing with slightly more challenging tasks. Today, Robert had to finish sentences of the form, “you should do this or that because….” by giving the appropriate reason. It was a difficult task for both Robert and me. I think, it would be much more beneficial, if I create sentences related closer to Robert’s experiences.
7. Skill Sharpener Geography 5,  I use the texts from this workbook mostly to practice reading comprehension. to every test, I write three to six questions. The workbook either doesn’t have questions or the questions seem to abstract.
8. Skill sharpener Science. Today two easy pages on magnets. Luckily, I had many magnets and even iron shavings to do additional experiments. well, we have done them before.  Nonetheless, words “attract” and “repel” still needed repetition.
9. Pronunciation. Never ending old big Weber book of words, phrases,  and sentences. I don’t even have a cover, so don’t remember its title. Anyway, that book has been replaced by few other, less intimidating. How long have we been practicing pronunciation with the help of that book? Well,  each page with either 60 words or 40 phrases lasts the whole week.  We completed at least 350 pages.  Thus we have been practicing pronunciation for 175 weeks. Three years and a half. Today we practiced “FR” in phrases and sentences.

Most surprising, however, is the fact that Robert seems to like it! Yes, there are moments when he seems frustrated, when he doesn’t understand and feels confused, but those are short moments. Very short. He does want to learn. Because of his willingness to learn, I need to learn to teach better.  I should use all the educational materials more flexibly as a suggestion, model and then create something more attuned to Robert’s  abilities and his needs. 

December 14, 2020

Why do all the candy wrappers have to be thrown into the waste basket in the basement bathroom?  No other waste basket will do. Not the one in the bathroom upstairs, not the one in the kitchen, not the one in Robert’s bedroom. No matter what sort of candies the wrapper came from, it still has to go to that one and only waste basket. If anyone places a shiny wrapper in any other place, Robert will retrieve it and carry to the bathroom downstairs.

Why does the floss pick have to be disposed of by dropping it into the waste basket in the main bathroom? Not any other container. Not even if that requires patiently waiting outside the bathroom until Robert’s cousin finishes his shower – sometimes more than 30 minutes.

Why do Robert’s lunches always come in the same sequence:  poblano, eggplant, chicken fingers, hamburgers, poblano, eggplant, chicken fingers, hamburgers, take out form Outback or Applebees’ and then again poblano, eggplant…. I am glad that Robert asks for the take-out after running his four dishes twice but I don’t know why he makes this arrangement either. Does he believe that the take-outs are something special and thus are both: the part of the routine and the break in the routine?

Why does Robert get agitated when I enter my daughter’s room or my husband’s office to talk with either of them for a few minutes. From another end of the house, Robert calls, “Out, out, out”.  He wants us to be assigned to our specific places when we are not in the living room, dinning room, or kitchen. At the same time, he allows himself to enter and stay in every room in the house.

Why does Robert eat each of the four stuffed poblano peppers on a different plate? Moreover, there are always the same four plates (with different patterns).  Only when one plate is broken, Robert would choose another specific plate to replace it then and in the future.  This is the custom he created only for the sake of poblano peppers. He can put on the same plate many slices of an eggplant with cheese and tomato sauce. That sometimes makes the plate look very unappealing, but Robert doesn’t care.

A few times on this blog, I wrote about Robert’s vision of the universe which consists of either separate bubbles, or strings with the same sort of knots on them.   Those strings do not cross each other. For those purposefully disjointed worlds Robert establishes rules that he knows well but we desperately want to understand.

In two previously written posts: Fighting Entropy, https://krymarh.wordpress.com/2019/10/25/fighting-entropy/ and Rejecting Entropy https://krymarh.wordpress.com/2017/02/06/rejecting-entropy/ I connected Robert’s behaviors to his resistance against Entropy. I also wrote how often we tried to make Robert more flexible by having him to accept new situations or new solutions to repeated events. We want Robert to create a more general, unified vision of the universe with more chaos but also more freedom.

December 7, 2020

I searched this blog for the first post about Robert learning to solve Sudoku. I found out that two and a half years ago, in July of 2018, I posted this: https://krymarh.wordpress.com/2018/07/18/on-sudoku-and-screams/ .  Since then, I wrote dozen of posts in which I mentioned Sudoku as a part of the daily routine. I know that at least in a couple of posts, I wrote  paragraphs about teaching Robert to write a specific number under a column or to the side of the row to which this number belonged when the exact cell couldn’t be yet identified. Sadly, given how chaotic this blog is organized, I couldn’t locate these posts without reading all of them. Nonetheless, it was illuminating to recall Robert’s first encounters with Sudoku.  His first struggles to understand the concepts behind the puzzle.

1. In the morning of one, sunny, September day, I prepared a few pages for Robert to complete them later with my assistance. I left them on the table and went outside to sweep the deck and water the plants. Fifteen or twenty minutes later, I heard Robert calling, “Mom, mom.” I rushed inside, to see him sitting by a Sudoku which was already more than half filled. Robert called me because he realized that he made a mistake and needed help.  That was a moment to remember because:

a) He started Sudoku all by himself.

b) He filled most of the cells correctly.

c) He realized that he made a mistake and stopped.

d) He asked for help. !!!!!!!

2.  Three days ago, Robert began solving Sudoku while I was busy in the kitchen and he completed it while I was still busy.  Then he showed it to me.

a) He solved the whole Sudoku.

b) He shared his success with me.

3. Yesterday, I asked Robert’s sister, Amanda, to practice pronunciation of words with both voiceless and voiced “TH” sounds. I asked because I still don’t say those sounds correctly. Moreover,  my throat hurt. As Amanda went down the list of words and Robert kept quietly repeating them, he also reached for the page with Sudoku and began solving it. At some point, he stopped, tapped one Sudoku cell with his pencil, and looked at Amanda expectantly. She understood, looked at the puzzle and suggested the next number to look for. Robert did and soon Sudoku was solved.

a) Robert accepted Amanda (someone beside me) to model his pronunciation.

b) He was able to repeat the words almost as if that was the natural conversation while simultaneously, he did something else.

c) He asked for and accepted Amanda’s help.

Of course, of course, there is a lot more for Robert to learn. He could /should learn to fix his errors even if that meant to start from the beginning. He could/should learn to more often utilize writing number below or next to a column or a row, if the proper cell is not completely specified. Yes, yes, yes, of course there is always more to learn and do. But today is the day to brag about Robert’s achievements.  So let’s brag.