The difficulties I encounter while trying to explain past problems and successes in Robert’s education stem from the facts that they happened many years ago. The time, obviously, tainted my memory. Moreover, the effects of particular methods and attitudes on Robert’s development seemed to fluctuate over time.

It was hard to assess, at a given point in time, what helped, what was neutral, and what, sadly, slowed or even hampered Robert’s growth. Often, the LATER-SEEN EFFECTS forced me to asses the varied educational methods and attitudes in a new light.

I purposefully used terms “methods and attitudes” as I had found out long ago that “attitudes” were as important as “methods” in affecting Robert’s development.

Robert’s teachers/therapists were as baffled as I was by the fact that Robert was unable to point to even one correct picture when asked by his therapists to do so, but he was successfully pointing to almost 50 pictures when demand was given by a computer voice from the program First Words. I quickly came up with the explanation. I argued that Robert’s hearing was so sharp that for him even slight differences in the therapist’s utterances sounded completely different, while the computer voice was always the same.

It took me a few more months to realized how wrong I was. After I found out using the Shaffer set of picture cards that Robert has receptive knowledge of more than 50 words, I visited the program to ask to check if I was right. Two therapists confirmed that Robert pointed correctly to many words.

Unfortunately, they still didn’t seem completely convinced, and one of the therapists said: “To make sure that that HE REALLY KNOWS the words, we will practice with him just three words: ‘table, chair, and bed.'” And so they did practice. Every day a few sessions of 10 questions in a row, asking for one of those three words. Robert had to point to one of the two out of three. It was always one of the same three pictures. If he answered correctly he was given a piece of cracker or a candy and then asked again and again and again.

A few months passed, now at home Robert could point correctly to over 100 pictures (From Shaffer, sets 1 and 2) but he hesitated and was wrong while asked about….

You guessed it. “Bed, Table, or Chair.”

So it was not Robert’s hypersensitivity to vocal utterances that stopped him from learning from his therapists, but it was the difference in methods. The computer program was giving Robert pairs (maybe later three pictures even, I don’t remember it too well) chosen from 50 words. When Robert answered correctly, the other pair was presented. When he was wrong, the computer gave him the correct answer and went on.

Of course, I was mad that so much time was wasted impeding learning but I understood that everybody, including therapists, was learning as well. Still, I wish there were some scientific minds analyzing the way Robert was learning or not learning. Maybe then many errors in educating Robert could be avoided.

As for the attitudes.

As he started the ABA program, Robert had two therapists working with him. One was very well-trained. Yet it was the new, not so well-trained therapist who helped Robert make the first breakthrough with a processing a couple of first receptive labels uttered by a human, not a computer.

Both therapists kept rewarding Robert with proper reinforcers; be it pieces of chips or the words “great job.” But a new therapist was so happy every time Robert answered properly and so disappointed when he was wrong that her feelings affected Robert. He read her feelings and learned from them more than from the used and overused reinforcers.

I have to state very clearly that the word “helplessness” doesn’t relates to my son, Robert. It relates to the people and, institutions, which held and still hold the power to make decisions about Robert’s education and his life and thus were and are partially responsible for his current state and his wellbeing. .Unfortunately, that power was used to undermine, ignore. and /or deny my suggestions or requests.

In May of 2005, Robert attended T- Collaborative. It was his second year there and it wasn’t going well. The previous year the same program was pretty good for him. But from year to the next everything changed. The experienced, well trained teacher’s aides left to pursue more challenging opportunities. The new ones were not sure what were their roles and mostly were seating next to Robert as motionless as Egyptian relief sculptures. The old aides welcomed him warmly when they saw him approaching the school building, while the new ones seemed to scurry quickly pretending not to see him.

Robert didn’t like the program. I knew that despite the fact that his OCD was forcing him to go there every day. As we approached the building Robert walked slower and slower. His steps heavier and heavier. NO, he didn’t like the program, and the people there didn’t like him either. And he knew it.

One day, he behaved badly ( I still don’t know what he did exactly) and he was expelled to another room. It was a large room in a mobile unit. I was told that he was crying and banging on the window. That was a window with the glass loosely attached to the metal frame. More like a storm window, than a solid window in a regular school building. Robert cried, banged, and broke it.

No, he didn’t hurt himself, but he was suspended for a week.

Since he was suspended, the teachers, administrators of the school, the Collaborative, and the Department of Mental Retardation (as Department of Developmental Services was called then) had to meet with us, parents. I didn’t complain that Robert, who was clearly in distress, was left unattended in an empty room and could hurt himself very badly. Maybe there were reasons for that I didn’t complain about suspension, although given Robert’s diagnosis was illegal. I though the week at home would help Robert recover from emotional residues of the incident.

I didn’t complain.

I begged. I begged. I really begged all the attendees to find a different program for Robert. I begged over and over, but everybody there was firm that the different program wasn’t needed. Seemed that everybody there like Robert and wanted the best for him.

I felt hopeless, but then I started believing that maybe the teachers in this program, really can help him to adjust better and learn more.

I hoped.

But a few weeks later, the T Collaborative shut the door for Robert. I couldn’t understand it. There was no other incident that would have given me any idea that this was coming.

The main teacher, Julie X, told me in her slightly irritated tone (over the phone) that everything was legal, because they just didn’t want him in the summer program. And that is different than year long program. That this was all legal. Of course it wasn’t. It was a cruel thing to do and it was illegal.

Of course, Robert shouldn’t stay in the program where his teachers didn’t like him. Where his teachers displayed compassionless manipulativeness. Where he was never understood. He shouldn’t. Still, facing that reality was very hard on us, his parents, and it certainly had some negative effect on Robert. He dealt with it in his own wordless way. Wordless thus very damaging.

Many times I felt powerless when I couldn’t prevent problems with Robert’s education, problems that were caused by specific methods of teaching. But at that time, I at least knew, that the teachers tried to do their best as they perceived it. But with T Collaborative the sheer cruelty of the teachers, cruelty aimed at Robert really knocked me down.

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.