As Mother’s Day approaches I think about these moments, when different people, often strangers, unexpectedly touched my heart with words or gestures of acceptance, or even appreciation, of my son, who has autism:

I still remember how, 30 years ago, the secretary at the pediatrician’s office took my tiny but very energetic son into her arms. She noticed that I was not able to hold that wiggly creature on my lap any longer. Robert was so surprised that he calmed immediately, and we could see the doctor.

I remember how almost 20 years ago, Mrs. Scott, his teacher’s aide, was gently patting his cheeks, repeating, “It is OK, Robert. It is OK.” The approaching tsunami of a tantrum disappeared without a droplet of protest.

I remember, from just a year ago, the ladies working in a Polish deli calmly assuring Robert that everything was OK while simultaneously cleaning broken glass and spilled beet juice from the bottle that fell from the shelf when Robert tried to get another item behind it.

I remember the guide at the lighthouse in Truro giving Robert a high five.

I remember the hygienist taking Robert to clean his teeth and telling me that he can do just fine without me.

Because Robert doing fine without me is my biggest wish and the most needed blessing.

Maria Hrabowski

Difficult.

Confusing.

Painful.

Impossible?

Useless?

I haven’t been writing because I stopped teaching Robert. I realized that teaching him took away the time from his own learning through observation, through connecting images that surrounded him, through efforts to make sense of the life as it was given to him.

I hoped to give him the opportunity to figure out the things related to his and our family lives. And he did. But the ideas or rules that he discovered on his own were often not compatible with ours. Still, he rigidly stood by them protesting any attempt to lessen or modify them. Difficult and Confusing.

1.He gave himself a right to enter the bedroom of each family member without even knocking. At the same time if I went to my daughter bedroom to talk to her or to my husband’s office, Robert protested loudly. I was not allowed to.

2. He insisted on getting rid of items, he considered useless. Since in the last few years his father didn’t wear ties, he gave them all to charity. That was not a problem. However, when he he insisted on giving to charity all of his father polo shirts and vests, we felt angry but powerless.

3.When he noticed that large monitors in his sister’s office were not used, as she mostly worked with laptop, he calmly packed them in the boxes they had arrived, and put them in the garage.

4.Without my knowledge, he cleaned my desk of all the papers. However, he didn’t throw them away and he knew were they were, when I asked him, to retrieve them. They were in the folder on the shelf next to my desk. Not a bad solution.

As Robert continue to assert himself, I do feel slight discomfort of loosing control. At the same time I feel sort of pride and sort of relief.

I just didn’t know how to write about it.

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.