Amanda exhausted almost all of her enthusiasm before we, her parents, finally agreed to go on an excursion to Peddocks Island. She found the needed information and bought the tickets. She drove us to Hingham and led us to the ferry. As the strong waves kept moving the boat up and down and side to side, Jan and I stayed glued to our seats. But not Robert. He moved around under the watchful eye of his sister. Finally, they both settled for the seats on the stern of the boat and stayed there until we reached the dock.

On the island we did what everybody else was doing. We walked. We looked at the ocean and the other islands of the Boston Harbor. We walked. We had a picnic. We walked. We fought off mosquitoes with a homemade remedy. We walked.

Amanda and Robert led the way. Jan was slightly behind. I was far behind. But from time to time Amanda and Robert stopped and waited for us to catch up with them.

It was the late afternoon; still a few hours before sunset. Nonetheless, I had the overwhelming feeling of walking into twilight. But it was our twilight, my husband’s and mine. Years ago, we were the ones who organized our trips. We bought tickets, made reservations, we drove, we watched Amanda and we watched Robert. We wanted to show our children whatever we could to enlarge their horizons and exposed them to experiences hoping that they would better adjust to the unpredictable world. But mostly, we wanted to make them happy.

Now, Amanda took those responsibilities upon herself. She wanted her aging parents to not succumb to the narrowing of their world. She wanted to recreate experiences from the past but with partial switch of the roles. However, when they were children, both parents took her of them. Now, she was the only one watching over her aging parents and the autistic brother.

And that broke my heart as I realized that I have to worry about both my children. Taking care of Robert, although often rewarding, was never easy. Moreover, it was overwhelming if not consuming.

It is not what I wanted for Amanda.

No, not at all.

.

In the last post, titled “Sew” I used verbs “sow” and “saw” instead of “sew”. I did that not once or twice but too many times to be considered typos. They were the fruits of the diminished prowess of my mind.

Because of aging, because of health issues, because of permanent stress, I too often feel that proper words are dissolving into the mist in my brain.

Isn’t this the same problem Robert has been having for years? Problem which makes it impossible for him to string words into sentences, or even just short phrases. He knows receptively more than thousand words, but uses only a few, one at a time. As his pronunciation is still difficult to understand, he repeats the same word quickly, many times, as if that could make up for the poor quality of the sounds he produces.

Yes, he can spell the word, he can write or print the word, but, nonetheless, it remains just a single word unattached to any companion words that would clarify its meaning by placing it in the specific context.

He is unable to retrieve those other words when he needs them..

Often, when I talk to someone, I know what meaning I want to convey., But since one or two necessary words don’t want to show up, I stumble in my communication attempts producing convoluted utterances that miss the meaning I wanted to express,

It is 9 minutes past midnight and Robert is still sewing. He has been sewing for two hours already. By now, he threaded the needle 7 times. It is not the first time he tries to repair his underwear. The only brown underwear he has. Every four or five days, he is sewing to mend it as it continues to tear over and over again. Now, his underwear is covered with colorful, thick scales. Colorful, because Robert used up all kinds of thread from the sewing kit.

I feel sort of powerless. I cannot find brown underwear briefs in any store. If I cut it into pieces or dispose of it, Robert will insist on buying a new one. And when I say “insist”, I mean INSIST!

Robert began sewing different items of fabrics a few years ago. He tried to mend the blue fitted sheet he liked. He sewed together two parts of an old towel. Then, he replaced the new towel with the one he just repaired.

A few days ago, he noticed that the duvet had a small hole. Without telling me, he fixed it.

He used to mend his socks, but lately, he doesn’t mind throwing them away. He also gave up on repairing tears in his jeans. In the past he insisted on mending the torn sleaves of his shirts. Now, he is happy to replace them with new shirts.

But the brown underwear is different. For over a year now Robert keeps wearing it, tearing it, and mending it. It became a pattern if not the ritual.

He knows, that we would like him to stop so he hides himself in the bathroom. There, sitting either on the rug or the toilet he continues his mission of saving his brown underwear.

In the past he needed our help to thread the needle and to make a tie at the end of the thread. Now, he doesn’t need our help. He is independent and he feels independent.

I wish I knew what he feels when he puts the needle away and drops the mended underwear in the laundry hamper.

Accomplishment?

Pride?

Relief?

I am not even sure what I feel.

Pride of his resolve?

Anger at his stubborness?

Confusion?

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.”