June 10, 2014
A week ago, Robert made noises in the bank. That took me off guard. I felt embarrassed. Unable to properly react, I left the bank. Of course, Robert left with me. Although we had planned going to the farm and to a park, I didn’t feel it would be appropriate given Robert’s unpredictable behavior. And thus, despite Robert’s protests, we returned home.
Robert didn’t want to leave the car. I turned it off and went home. Fifteen minutes later, Robert came too. We talked about not making noises. I mean, I talked. Robert, embarrassed as well, was agreeing with me, “Okay, okay”, he kept repeating after each of my scolding statements. The soft way he kept saying, “Okay, Okay”, melted my heart, so we went to the farm and to the park after all. At the farm we walked into a green house and bought a few herbs and a freshly baked bread. Then we drove to the Moose Hill Audubon. Robert was patiently listening to my conversation with the person in the visitor center about oncoming native plant sale. Then we went on a short Boardwalk Trail. It was a wonderful day. We rested on the bench standing at the edge of a meadow. We watched birds entering and leaving their homes, enjoyed scents of unknown plants, and admired wild irises. Robert was relaxed, calm and happy. I was too. On a way back to the parking lot I tripped and fell. Robert screamed and quickly patted his cheeks. He was upset. He was concerned. He was scared. I slowly got up. My knee hurt, my hand was bleeding. Robert was still making grunting noises. “I fell and you scream. That is not right.”,I said stupidly. As soon as I finished this idiotic observation, I realized, that if it were Robert who fell, he would not scream. He screamed because he was afraid for ME. He screamed because he felt MY discomfort.
We walked silently back to the visitor center. Robert rested on the bench while I went to wash my hand in the restroom.
It was only then that I understood why Robert made those grunting noises in the bank. Only then!
I should understand his behavior sooner. After all, he had never before behaved inappropriately in any of the banks he went with me. Not when we did transactions with tellers, not when he waited in line, not when we spent long time at the desk with the managers while opening an account or straightening some errors. Not even when the baskets which should have lollipops were empty. Never!
But then again, I had never felt so strangely in any bank before.
Cashing Robert’s check was not a problem. He signed the check, handed it to the teller, got his money, and put it in his wallet.
It was only when I turned to the man sitting in the open enclosure to ask a question that something strange happened. A tall woman coming from nowhere appeared in front of me, as if blocking me from trespassing. I realized that she came from a room with closed doors as if I were watched suspiciously from behind. I felt uneasy, as if I did something terribly inappropriate. Almost apologetically I restated my problem – need to recover Robert’s password so I could practice with him online banking. The woman stated in a manner which was both dismissive and pushy, that since Robert had a guardian, he couldn’t be allowed to do his online banking anyway. I responded that this didn’t sound right, because we had done online banking three years before. And exactly in this moment, Robert approached us making grunting noises and running his fingers through his cheeks.
As I washed off the dirt from my hand in the visitor center of the park, three hours later, I finally understood that Robert was upset, because he was afraid for ME. He thought we were fighting. The woman was a foot taller and she stood extremely closed to me in what one might called, my personal space. I felt intimidated, confused, and uncomfortable.
Those feelings negatively influenced my ability to understand Robert’s perspective. I didn’t think about how Robert read this situation and how he felt about it. I heard his noises and treated them as if they were expressing unprovoked anger.
If I were not so quick to blame Robert for inappropriate behavior, I would understand that he was afraid for me. He might either think that I was under sort of attack, or that I was arguing. He doesn’t like arguing.
If I were not so quick to blame, I would tell, Robert, “It’s okay, it’s okay. We are not arguing. I am just asking for advice. It’s okay. The lady is friendly. (I would lie) It’s okay.”
That would be the end of it.
But I didn’t do that. I left upset with Robert for loudly expressing his frustration. I left heartbroken that “Robert’s ‘irrational’ behaviors returned without a reason.” Robert left confused and ashamed.
Everything because of being too quick to blame and to slow to understand.

June 6, 2014
This week, Robert was home. We were both waiting for the recommendations about his adult program after the three weeks long vocational evaluation was completed. Robert was anxious and did not feel good. But since doing nothing doesn’t seem to make Robert feel better, we didn’t skip even one day of study. We just took more frequent and longer breaks. It was not a very original teaching. In more difficult times, the routine keeps both of us focused. So we continued most of the old programs. As before, Robert likes Reasoning and Writing exercises the best. The most difficult task is for him to retell the story, based on numbers he placed in the picture when I was reading the story for the first time. Those numbers followed the movement of the cat which tried to catch the goldfish, but was grabbed by the turtle instead. We continued with Linguisystem Cards for Adults and pronunciation exercises with the help of the spelling book level D and IPAD. The new thing is the curriculum Functional Routines for Adults and Adolescents. I believe that Robert recognizes practical implications of those illustrated stories followed by questions and seems interested and eager to practice. On Monday, we made a short trip to Roger William Park and Zoo, stopped at two banks, and bought pajama pants at KKohl’s Department Store. On Tuesday, we cashed Robert check at the bank, went to the farm, and then to Moose Hill Park. On Wednesday, we went to see Maleficent.
On Thursday, we didn’t go anywhere. We still studied, but after lunch Robert fell asleep and didn’t want to go anywhere. I think he didn’t feel good. It rained all day, and it was damp and dark outside. In the evening, Robert had to feel better as he rather happily took care of the two loads of laundry.
Today, Robert went with Pam to the library and later for a walk. She said, he was pretty anxious in the morning. Later, we prepared together chicken fingers and that improved his mood a lot. We studied for two hours and then watched TV.
I was pretty tense this week, and so was Robert. We read each other feelings and got even more anxious.
Oh well,

June 4, 2014
1.Learning the meaning of “OR”
Today, Robert and I worked on Unit 13 from Reasoning and Writing. One of the tasks called for Robert to pick up “red or green pencil as opposed to the task of picking “red and green”. Robert didn’t know the difference. We repeated the series of exercises twice, but Robert still has not fully grasped the ideas behind each of the two conjunctions. I need to rethink the way to teach that. I will probably use cards with written words “and” and “or”, but I am not sure yet.
2. Learning to Whisper.
After studying for 2 hours we went to see Maleficent. Remembering that a few weeks ago when we went to see Rio 2, Robert spoke twice and rather loudly, I tried to practice whispering. We had done it before, maybe a few months ago. We started with just blowing air and then adding voiceless consonants. With some consonants, Robert could whisper, with others he was unable to. I don’t know why we stopped. Today, we tried again, just for a few minutes. It was not enough for Robert to whisper in the Theatre, but it, at least, gave him an idea of what it is to speak softly.

3. Paying with money and rounding to the next dollar.
On Monday in the Zoo, on Tuesday at McDonald and on the farm, and today at the movie theatre, Robert was using cash instead of his credit card. Robert’s refusal on Friday to give enough money to his job coach to pay for ordered lunch, allowed me to discover another gap in Robert’s understanding of financial operations.
So, for the last three days, Robert was not allowed to use his credit card but had to pay using cash. On Monday, he rounded up $3.50 to $4.00 to pay for his watermelon frozen lemonade. On Tuesday, he gave the cashier at the farm store $11 to pay the bill of $10.49. Later, at McDonald, he used exactly $6.09 to pay the bill of $6.09. Today, he had to pay 4.50. He found out that he had only three one dollar bills, so he gave ten-dollar bill to the cashier. In three transactions he needed support, in two others, he didn’t.
4.Touching objects in the Museum.
On Thursday, I learned that Robert kept touching untouchable displays at the Museum. I realized that this behavior was enforced during our frequent trips to science museum, where every visitor is encouraged to touch, manipulate, check, and recheck all the displays to literally have hands on the presented ideas. At least a year has passed since our last visit to the Museum of Fine Arts and/or Metropolitan Museum of Art. I have to plan a visit to one gallery at the Museum. Maybe tomorrow?
(Update. We didn’t go to the Art Museum yet, as it rained all day and Robert was very sleepy.)
5. Staying in his seat during work and/or asking for a break.
It happens from time to time, during our studying sessions, that Robert suddenly gets up and runs/walks around. Since I perceived this behavior to be a stretching exercise, I didn’t mind it much. Now, I have realized that it might be problematic during work or any group activity. Had Robert had words to use before getting up, his behavior would be seen differently. I think I will place cards with phrases, “I need to stretch.” or ” I need a break” on the table and demand that Robert uses them whenever he wants to get up.
6.Greeting people.
I noticed that Robert still had to be prompted to greet the people who worked with him. Today, I used the unit on arriving at work from Functional Routines for Adolescents and Adults by Beverly Plass as an introduction. But, of course, learning at home with me and practicing in the community with other people are two different things.

I discovered those gaps mostly because I work with Robert and because I listened to all the job coaches who worked with Robert during three weeks long evaluation period. They just shared their observation. Sadly, many of his teachers in his former public school had rarely or never done that. The fact that I was not made aware of those and similar gaps during my son’s long stay in the transition classroom is the most demeaning commentary on the quality of special education programs in our public school.

I don’t know English well enough to find the most appropriate verbs and/or adjectives that would correctly present the sounds Robert was making today. Beside one scream in the morning all the other noises were not only toned down considerably but also hard to name or even categorize. Sometimes, they sounded like mixture of moaning and singing. Other times like laugh interrupted by confusion. They were not created to have any impact on Robert’s surrounding. They were soft, heartbreaking, and very personal.Whatever bothered Robert, he was dealing with his feeling through those song-like whining.

Robert woke up with his lips dry and white. He was holding his breath a little too long before exhaling. He was in pain. He said his stomach hurt, but that is what he learned to say when asked about pain. It might be that his chest hurt or his head. We gave him inhaler for possible asthmatic discomfort and matamucil cracker for digestive system problems. I told him that he could sleep longer and didn’t have to go horse riding. My words had the opposite effect. In a few second Robert was up. He spent a lot of time in the bathroom, so I again suggested to him to skip the horse riding lesson. But he didn’t want to.
As we drove, he chose listening to music, but was tense and a few times he produced some soft sounds. I asked Kate, his instructor, to stop the lesson as soon as the noises would interfere with the lesson. But there was no need for that. Robert followed all the directions given by Kate, although his reactions were rather delayed.
On a way home, he wanted to stop at the Supermarket. I wasn’t sure if that was a good idea, given his obvious discomfort, but agreed, nonetheless.
It would have been a very nice shopping experience if I were not so stressed. Robert helped bagging and got a sticker for helping the cashier.
After returning home, he fell asleep. He helped dad in his garden work then they went for a walk in the Moose Hill and to Subway Restaurant. Two first activities were accompanied by sounds.
We studied together in three intervals. First, Robert read Amelia Bedelia Makes a Friend and with my help (mostly turning pages) answered questions I wrote to accompany reading. The book is on a very low reading level. Its 32 pages could be read in 10 minutes. Decoding is, however, not a problem for Robert. Comprehension is. This book presented Amelia’s Bedelia problem of literal understanding of expressions in a very simple way. Robert answered two pages of questions and then he drew the appropriate pictures.
We proceeded to lesson 11 from Reasoning and Writing. A few years ago, I couldn’t really work on “If” problems (If I do that, you do this.) even though there was a picture model in the book to demonstrate to Robert what he was supposed to do. It didn’t offer sufficient help. There was a need for another person, live model. At that time, Jan was in California and Amanda was in Oregon. Now, with Jan coming to participate in that part of the lesson, it is much easier for Robert to understand the concept and respond timely and fluently.

We did most of our regular daily studies. After we finished, Robert again returned to making sounds and I returned him to piano to have him sing Are You sleeping? and to a set of Apraxia cards, to have him talk.
Robert relaxed watching on PBS the musicians performing on Ed Sullivan show. He kept running and finally seemed relaxed.
Still, before he went to bed, we approached piano three more times and sang together, “Are you sleeping? Are you sleeping?”
Obviously, not yet.

May 31, 2014

I haven’t written in a few days. I couldn’t write, because I had too much to tell, share, and analyze.
Having too many things to say at the same time, stops me like nothing else from writing. All those observations and experiences are all tangled together in a hard to untie knot. That is when I just write a page in a Journal, a simple report on what we did and/or what happened.
Yesterday, Robert was making noises. He uttered more long vowel sounds (and they were much, much longer) than he produced in a whole month of our speech exercises.
When we practice speech with the help of Speak It on IPAD, he still shortens his vowels. Yesterday and today, however, he made those vowels very, very long.
Of course, I was concerned. More than concerned. I have not noticed such behavior in a few years. Their return seemed like a big step backwards. I had almost forgotten about them and certainly didn’t anticipate their resurgence.
As it had been the case in the past, I became afraid that Robert had another bout of stomach pain. The different way of breathing and longer time spent in the bathroom seemed to confirm that suspicion. With that suspicion comes regular paranoia aimed at new food. What made him feel bad? Back to reading labels of every new item on his menu.
Was he making noises because he was disappointed that his evaluation program ended? I am not sure, if he really understand that…
Was he making those long vowel sounds as a way of singing? After all, he loves his weekly music therapy at Bridge Center.
Was he making noises, because he didn’t have anything else to do?
Should I really stop that behavior as highly inappropriate or should I embrace it as a way of practicing long sounds?
Well, yesterday, I went through the old procedure from years ago. When Robert was running and making noises, I responded, “I see, that you want to talk, so let’s talk.” I, then, took a set of language cards and we practiced saying different words.
Today, I did something different. I took Robert to the piano (needs tuning desperately) and played a very simple tune a few times while Robert tried to follow.
To my complete surprise, Robert was able to change the pitch of his sounds.
Rewind: A couple of weeks ago, my friend Jean played one note at a time and Robert sang that note. She played maybe two or three notes altogether. That surprised me as well, because….
Because until now, I didn’t believe that Robert was capable of changing the pitch of his voice on purpose, or when directed by anybody.
What has happened?
Is the music therapy he has been having for more than a year now responsible for that development?
How come I didn’t notice that sooner? Did I stop believing it can ever happen?

After “singing”, we still practiced words from apraxia language cards.
Robert was also working, completely independently, on a few math worksheets (easy, but wide range of skills required). He felt might proud about that. He did lesson 10 from Reasoning and Writing which was the test.He did well with only one small hiccups.
He didn’t make any noises after we finished studying. Maybe, his stomach stopped hurting.

May 26, 2014 Long, Very Long Memorial Day Weekend
Saturday
I was a little concerned when I was leaving Robert at Bridge Center. He made a few noises of disappointment and insisted that I take off the ACE wrist band I had put on just three hours before. He didn’t mind me wearing it at home or while driving, but somehow found it offensive that I wore it in Bridge Center. I pretended I didn’t mind taking it off but left anxious. I know so little about Robert that much too often I worry a lot when I leave him anywhere when he is not in a good mood.
I was still nervous when 4 hours later I came to pick him up but my anxiety disappeared when I heard that Robert did very well that day.
Since the weather was surprisingly nice, despite gloomy forecast, we decided to drive to a farm to buy more native plants. It was a long, but uneventful ride. On a way from the farm we found sign on the road Historic Deerfield and we decided to take a quick look. It was late already and visitor center was closed, so we walked a little, stopped in the restaurant for a dinner, and walked some more. I secretly cherished the fact that the historic houses were already closed, and thus we didn’t feel obligation to visit them. Walking and looking at them from outside was just enough to make the evening pleasant and relaxing.
Sunday
I woke up sick with what most probably was a food poisoning. Jan took Robert to Massachusetts Hospital School for horseback riding. Later they went for a short walk.
I hoped I would feel better, but I didn’t. Our plans for barbecue with friends had to be canceled. Since it was still not raining (despite the forecast), Jan took Robert biking to Blackstone River bike trail. They came a few hours later. I was half asleep when terrible, TERRIBLE scream woke me up. Robert was screaming as loudly as I have never heard him before. (At least not in the last 4 years) I knew something horrid had to happened. What else would provoke such a loud cry of distress?
What? What?
Broken door lock! It didn’t let the door open.
It had to be said that before Robert screamed, he first tried to rectify the situation on his own. He tried to use the key. It didn’t work. He went inside through the garage and tried to open the door from inside. The knob didn’t work. Nothing work. And that was when Robert understood that the world was, yet again, coming to its end. And he let everybody know that.
What surprised me, however, was that Robert didn’t continue persevering about the door, as he certainly would have done even a year ago. He went upstairs, watched his IPAD, took a bath and went to bed. Maybe he decided that the door would fix itself, so the best thing was to sleep it over. And he did.
Monday
The door didn’t fix itself and Jan was not able to fix it ether. There was no way to open it to remove the broken lock. There was no other way but to call the locksmith to come. And to come today, on Holiday Monday.
I knew that Robert would protest leaving his home in the morning through the garage door and not the regular door. So I called locksmith, three of them, canceled two then called one more again, as I didn’t really know what I was canceling. We cleverly decided that Jan would take Robert for a walk to stop Robert from helping the locksmith. Repairing the lock requires removing the lock and Robert doesn’t like removing. If he notices things out of place, he will put them back on.
So, Jan took Robert for a walk, and I kept calling. The locksmith arrived five minutes after Robert and Jan returned. And as, we knew it would happened, Robert knew better, and tried to put everything back, before it was even taken out. Somehow, Jan enticed Robert for a trip top McDonald.
And that was another progress. Just a year ago (as I wrote in https://krymarh.wordpress.com/2013/03/10/antipodes/, Robert wouldn’t leave knowing someone came to dismantle his house or part of his house.
When Robert returned,the lock was already in place and it worked.
Nonetheless, it was not the same lock so Robert took a screwdriver and unscrewed it.
However, when both Jan and I told him to put the new lock back, he…did.

We did a little studying together. Not much. Just enough to put Robert on track. We read last story from Spectrum reading, worked on pronunciation of “eeze” words, and a few new vocabulary words (second grade). We also did lesson 7 from Reasoning and Writing This is the part Robert likes best and becomes much, much better in recognizing what could and what couldn’t happen (girl riding a bike versus girl flying) and also in following the direction “If I do this, you do that” with the help of two pictures on line – one representing me and one him. We had done it three years ago, so Robert was a little rusty, but he gets the skill back. He better does, he needs it.

A few weeks ago, I tried to pat Robert’s head. With a swift and determined movement of his head, he prevented me from doing that. It felt strange. As if he were afraid of being hit. I was surprised by this reaction, which had never happened before. But then, I didn’t remember stroking his hair either. It was probably not because I didn’t do that in the past, but because I did it almost instinctively. Had Robert ever reacted by tilting his head to avoid being touched, I would have noticed.
I tried again, a few days later. The same reaction.
A few weeks passed. Robert, Jan, and I were meeting our friends at Burger Joint in Bethesda. As I was talking about Robert with friends, we had not seen for a long time, my hand stretched to pat Robert’s head. Swift movement allowed Robert to avoid being touched. Our friend made a connection with the movie There is Something About Mary and considered this behavior to be typical of autism. Except, that for me, it was relatively new. So was Robert becoming “more” autistic?
Another week passed. Robert, Jan, and I were eating at Outback with Robert’s grandmother. Again, my hand stretched and I stroke Robert’s hair. He did not try avoid being touched, but was quite happy. Moreover, he took my hand and with a smile placed it on his head repeating the movement.
I wondered.
1. Was that because on some days Robert is more and on some days less “autistic”?
2. Was it because, he was growing and found such displays of affection not appropriate in some circumstances, but acceptable in others?
I wonder…

May 22, 2014
Since May 12, Robert has been attending a vocational day program, just for an evaluation. As I keep getting feedbacks from his coaches and specialists, I cannot keep but look back at his school years and list all the things which could be done but weren’t to prepare Robert for this next step. Had Robert’s teachers worked every day on a fraction of the skills that are needed for successful transition to a workplace, Robert would not have the difficulties he has now. I am fully aware that in this new place, the people working with Robert have to address many skills which should be practiced during school years. What makes me bitter is that for many years, I asked exactly for:
1.Teaching how to greet peers and how to participate in group conversation even by tactful listening and answering the simplest questions.
2.Listening to group directions given by a person in charge and working in teams.
3.Removing one to one aide and having Robert following actions/behaviors of his peers.
4.Increasing hours of work to address both physical and psychological endurance.
5.Connecting work with pay, no matter how small, but related to the effort.
6.Practicing basic language phrases at work sites to give Robert tools to ask for help, additional explanation,or express his needs.
IEP meeting after IEP meeting I suggested, I asked, I asked again, and again and….I gave up.
Teachers were changing, aides were changing, special education directors were changing. I kept repeating myself as a broken record…
Now, as I am observing Robert’s difficult adjustments to a new place and his supervisors’ resolve to deal with Robert’s problems, I see how much more could be done during long years at schools if so much has been already addressed, if not achieved yet, in those eight days in the vocational day program.

May 9, 2014
Yesterday, we began the day with our regular work. Then, Robert worked for almost 2 hours on finishing Ancient Greece packet. There was a short, illustrated text to read which we(mostly I) talked a little about. Robert had to use the text to find meanings of four new words. That was the only comprehension task for Robert. The rest was cutting, coloring, gluing to make puppets, theatrical masks, and a model of the Parthenon. After completing those projects, Robert wrote a post card (with the Ancient Greece theme) to his grandma telling her about his project. I think that was rather relaxing but also very rewarding activity.
After lunch, we drove to the pharmacy, two supermarkets, vacuum repair shop, and another place with lawn mowers and their accessories. We needed a belt for a vacuum and a new filter for our lawn mower. The last two places were new for Robert. He was naturally curious and he followed me one step behind trying to get an idea how to behave in such environment.
May 22, 2014
We haven’t studied together for almost 10 days. Robert was busy with adjusting and working in the new place and with his regular activities. Yesterday, I thought that he would be reluctant to return to our regular studies. I was surprised that neither on Tuesday nor on Wednesday that was the case. In those two evenings, we went through lesson 4 and 5 from Reasoning and Writing by SRA. Robert seemed to like it a lot, almost as if he considered the tasks presented to him as a parts of a great game. I say, “Pick up the crayon that is not purple.” and Robert with this sly smile picks the yellow. That smile is worth million dollars. It is as if he were telling me, “You tried to trick me, but I didn’t fell for it.”
We continued with the help of IPad working on pronunciation of “ee” words and “ick” words. We read two next stories from 3rd grade Spectrum Reading , we worked (again) on rounding two and three digit numbers, and we built structures with cubes and assessed their volumes.
This is our routine, yet as all routines it has a good part (it is east to follow) and a bad side (it can be too stifling). So, maybe I will shake it today a little.