Progress? Regress? Progress?

May 26, 2014 Long, Very Long Memorial Day Weekend
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.
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.
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, 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.

Touch Me, Touch Me Not

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…

On Lost Opportunities

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.

Journal, Pages 13 and 14

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.

Quiet Weekend and Disquieting Question

May 20, 2014
Last week, Robert attended a new program. He has not been accepted yet. At this point, he is evaluated for its suitability for him. Except, Robert doesn’t know that yet. So he is happy and relaxed. And it shows.
Last Saturday, Robert had a good time at his vocational/life skill program. He cooked, he had music therapy outside (Just a month ago, he was not happy about that), he worked with his peers, and he followed directions. After we picked him up, we drove to New York City. Robert was very calm. Because of that calmness, I didn’t feel forced to use language to explain things to him as I had to do during our trip, a month ago, to New York and North Carolina.
His anxiety at that time required that I kept explaining things to him and provide him with phrases he could use to gain information and assurances.
This time, nothing of sorts. The only “conversation” we had was about eating.
“Fries, fries”, said Robert
“We will eat at exit 40,” answered one of us.
“Fries, fries”, repeated Robert.
“What about fries?” asked one of us.
“Exit 40” replied Robert.
“You are right. We will eat in MacDonald at exit 40”
Over two hours long period, we had three such or similar conversations. Not bad.
No obsessing there.
In the evening, Robert still managed to go with his father for a walk around reservoir in Central Park.
On Sunday morning, we drove to New York Botanical Garden in Bronx. We took a ride on a train and then walked through three of its sections. As I was taking photographs of some of the native plants, Robert wither walked slowly with his father or relaxed on benches. In rhododendrons’ section he posed for pictures. The only teaching I managed to squeeze in was in the Haupt Conservatory as we passed through Rain Forest Section. Using the board on the top platform, I reminded Robert names of the layers of the jungles.
After lunch at the cafe, we made a short trip through the grounds of Bronx Zoo. Then we were on a way home. We arrived around 7PM and Robert, as always, unpacked everything – medicines, toiletries, and food. He started laundry and took a bath.
It would be hard not to notice the difference in his demeanor from that he had exhibited a month before. I think it was because he felt that he found his place after two months of being in limbo.
But did he?

That Finger in the Nose

I don’t want to be graphic, but since one of the issues Robert (and I ) struggled frequently, was his reaction to sudden bouts of hay fever, I have to address that problem. This habit stigmatized Robert, diminished his social appeal, and reduced, more than anything else, the range of possible vocational opportunities.
When the allergic rhinitis attacks, Robert puts his fingers in the nostril trying to block the watery discharge. He can do that many times in a short period of time.
It would help if Robert could blow his nose. Unfortunately, my efforts to teach him that failed. He is pulling air into his nose instead of blowing it out. It would help if Robert kept using tissue consistently wiping his nose but he uses tissues not as often as his nose requires. It would help if Robert washed his hands immediately after he had used them to plug his nostrils, but he does it only when he is reminded by insistent observer.
Why doesn’t he get it?

1. I am the only one who tried to teach Robert blowing his nose. I was not very consistent mainly because I didn’t see a progress. I was not even able to teach Robert to blow clean air out of his nose. I know that this is a skill, that Robert could learn in his private school. That was one of the times, I regretted that I took him out from that school.
2. Only Robert’s teachers in the Collaborative program, he attended during one summer (extended year) noticed Robert’s habit and worked through a few weeks on eradicating it. They made gross pictures of a person (I think one of the teachers volunteered to be a negative model for this one.) picking his nose and the crowd of people being disgusted by it. The social story followed.
At the same time, I used a chapter from Taking care of Myself by Mary Wrobel dealing with the same issue. If neither Collaborative program nor I spent too much time on addressing this problem it was because with the disappearance of allergens, Robert stopped using his fingers to plug his nose and it is hard to work on reducing behavior which is no longer present. Still, during those first 3 weeks in a collaborative program, Robert clearly got an idea what was and what wasn’t appropriate behavior and he increased the first and reduced the second.
3. When Robert returned to his regular program in public school, I brought the issue into the open. Nonetheless, during two classroom observation I watched to my dismay that Robert kept plugging his running nose again and that neither his teacher nor his aide reacted. Again I talked about the need to address this issue with the school. A few months later I came again to observe Robert during a group instruction. There were three or four students in the whole classroom – three people were watching them – a teacher and two aides. Everybody was sitting at the large, round table. The students were learning and practicing appropriate behavior during job interviews. That called for, among other things, right kind of handshake. Not too strong, not too flimsy. Except, Robert was using his fingers to plug his runny nose. I saw it, other students had to see it and yet, the teacher asked one of them to practice handshake with Robert. The student extended his arm toward Robert. And it was then when I had to interfere. From my seat, I asked Robert to wash his hands.
I know, I was only the observer, and as such, I should wait with sharing my observations until the end of the session. I couldn’t.
There was a sink in the classroom, so Robert didn’t even have to leave the room.
I have learned recently that I was talked about as the kind of overbearing parents that expects impossible things from the teachers. Well, the one of the things I really expected from the teachers was to ask Robert to wash his hands every time (or almost every time) he touched the inside of his nose. I expected them to making clear that this behavior is not socially acceptable, that it might affect Robert’s health and the other students’ health.

As Robert began his two weeks vocational evaluation during the peak of the allergy season, the first thing that stigmatized him among a new group of his peers and alerted the job coach, was Robert plugging his nose.
Unfortunately for Robert, he didn’t present himself well to his coworkers.
Fortunately for Robert, his job coach had to immediately focus on this habit and consistently address it.

Finding Pillars of Robert’s World.

The difficult aspect of finding those basic rules that govern Robert’s understanding of his environment is the fact, that they can be discovered only when they are broken or in the danger of being broken. Only when Robert reacts to their perceived demise, we can “see” what caused Robert’s protests and understand his efforts to rectify the situation.
1. In anticipation of the arrival of the three family members, Robert and I were changing two beds (bunk) in Amanda’s bedroom. Those beds were not used for the last four months, as Amanda extended her stay abroad. Nonetheless, the clean sheets were in order. Robert helped to remove the sheets and pillow covers from both beds and promptly placed them in the washing machine. He protested, in his own way, when I tried to put two different sets on. Running his fingers on his ears and cheeks, and making relatively soft but grunting noises, was Robert’s way to express his displeasure with such arrangement. It didn’t help that one set was dark blue. After I explain to him that mattresses and pillows have to be covered, Robert consented and put clean bedding on. What could be more gratifying than watching Robert being convinced by my logical arguments and doing the work all by himself?
But I knew Robert all too well, to know that this was not the end of the story.
It wasn’t.
As soon as the old bedding was washed and dried, Robert instead of folding it and placing it in the linen closet, brought it to Amanda’s bedroom and… changed both beds again. Since, however, he folded the sets he had just removed and placed them on the proper shelves, I pretended that I didn’t notice. Since Robert tried to avoid confrontation and found a way to compromise, why shouldn’t I? Although….
2. Robert rather easily accepted the guests in the house. Not the first time and not the last. He didn’t mind them eating, working on computers, watching his IPAD, talking to parents. But on Sunday morning, he became concerned when he saw his uncle taking the box of his dad’s Familia cereal from the top of the refrigerator. As long as he had remembered, no guest had ever done that before. The guests ate all kinds of bread –Italian, Iggy’s, Peasano, Spiralonga, whole wheat, English muffins. All kinds of breads and rolls, but no Familia cereal. Even Amanda didn’t eat that one. That meant the cereal was untouchable. Before the aunt placed two bowls on the kitchen table, Robert managed to put the box back.
Still, he didn’t want to be an inhospitable host, so, without a word to support his ideas of rectifying the situation, he placed two halves of already toasted English Muffin in his aunt’s hand insisting that she eats those instead.
When Robert left the kitchen (His father called him to another part of the house to distract him), uncle and aunt pour cereal AND MILK into their bowls. When Robert returned, he glimpsed at the bowls and didn’t seem to be bothered by the fact that the aunt and uncle were eating his father’s favorite oats.
I know that the next time another guest takes a box of cereal down, Robert won’t mind. He has already learned, that “such thing can happen and that the world survives. In a way, he will understand that what he considered to be the pillar supporting his world, was really a wire in the psychological cage he constructed around himself. It was liberating to see the wire go.

He Got His Bounce Back

Of course, we tried to extinguish it. After all it is a stigmatizing behavior. Robert bounces and flaps his hands. This behavior immediately sets him apart from others. Not that he jumps high. His feet hardly leave the ground. Nonetheless, it attracts unwelcome attention. He bounces when he doesn’t know what to do,when he waits, or when he attends a gathering with speeches. Everybody else listens or pretends to listens. Robert doesn’t know how to listen or pretend to listen. He bounces. I put my arms on his shoulder and he stops for a few seconds, then bounces again.
He bounces when he is excited. He bounces when he feels shy or confused.
Except, he hasn’t been bouncing recently much. I don’t think I saw much of that soft jumping in the last four or five months.
Yesterday, we attended a rally All Aboard the ARC ARC meaning The Association for Retarded Citizens. Many people representing local chapters of ARC attended the gathering held in Boston Common. They didn’t jump. They listened or talked softly with each other. Robert bounced. He heard the music and felt it was an invitation to bouncing. We moved around from place to place. We were not the only people moving, but Robert was the only person bouncing. I sensed that his light bouncing although much less disruptive than other people talking or walking attracted attention not completely devoid of disapproval. Although I kept placing my hand on Robert shoulders which always resulted with a temporary break in bouncing, I wasn’t concerned much about this behavior. I was in a way glad that Robert got his bounce back.
When robert bounces, he seems happier. When he doesn’t bounce he is tense. When he stops bouncing, he gains weight. I know that watching Netflix on his IPAD is less stigmatizing than bouncing during the rally. But bouncing during the rally is still better for Robert than watching Netflix on his couch.
So, we came to the rally. We slowly moved around. Someone gave Robert an orange banner so he could wave it too. Waving a banner would be much more typical behavior than bouncing. Good try. But it wasn’t his banner, so Robert gave it back. Then he bounced again. We walked around, stopping frequently to pretend to listen and look at other participants but Robert couldn’t help himself. He had to bounce. And so he did.

Second Month at Home

May 7, 2014
Two months and a week passed since Robert finished his education. Hard to asses what Robert learned in April. It is clear that he got more anxious. At least on three occasions in April, he demonstrated increased anxiety during the last hour of each of the programs he attended (in three different settings). Regular Saturday session, a trip to a Car Museum, and chores with his skill instruction. He wanted to go home. It seems like he cannot attend any program for more than 4 hours at this point and that is very concerning. In April, he didn’t have his cooking class. I think that loosing even this program – two hours a week was harder than I anticipated as it added to all the things which suddenly disappeared from his life and were not replaced by anything else. He really liked relaxed atmosphere of the large group of his peers. The young people there were much friendlier than his classmates at school. They were different, but not much different than he was. He felt it, and he felt good about being there. He didn’t talk, but he felt that he belonged to the group. But the program ended.
And so Robert had to add one more item to the list of things that disappeared from his life in just one month – school ended, Erin had a baby, leased car was returned to the dealer, and a cooking class ended.

In April, we did less desk work than usually. We spent 9 days traveling and visiting other places. Robert’s grandma stayed with us for another week so our regular schedules had to be adjusted. Nonetheless, Robert kept doing his usual chores – laundry, dishes, and putting everything in right places. But I did not teach him to do anything new at home. We continued with the same workbooks and the same language related exercises. We did a little more walking because of a nicer weather.
Over all I worked with Robert less. Much less than in March.
I did feel drained. Very drained. And this is something new. Robert and I were in this situation before. He didn’t have school and I taught him at home for weeks and months. But I was younger and Robert had a few more years to learn. Now, I see that there is really no place for Robert. That although Robert learned a lot and grew a lot, the world didn’t grow with him and didn’t create new places that would match Robert’s personality.
I found myself loosing courage and energy.
I have to almost force myself to take Robert to new places.

On the other hand, Robert has been pretty happy, smiling and laughing a lot since Saturday. In the last few days, many things seemed to amuse him and a new kind of spark appeared in his eyes.

Two Days Without Studying Together

Yesterday, I did not work with Robert. In the morning, Robert helped his dad to fix the fence around a vegetable garden. After an hour, he came home. I don’t blame him. It was cold and windy. Later, the three of us went for a walk in Stony Brook Audubon. As always, rather calm walk. There were not many birds to see. The male swan managed to chase away most of the fowls. He kept guard on the other side of the pond by swimming back and forth at the edge of the pond. One Canadian goose hid under the branches near the bridge. I noticed, however, that Robert kept close to us, and only two or three times, I had to ask him to stop and wait for us. On a way home, we stopped at the supermarket. This time, Robert chose a register with a cashier. I did not let him buy candies and then was surprised when Robert twice expressed his loud but wordless disappointment. He remembered that last time I let him buy two different candy bars. Oh, well.
I felt very drained for the rest of the day, and skipped our daily lesson, second day in a row.
Because on Saturday, I did not work with Robert either. I drove him to Bridgewater train station. With his friends and teachers from Bridges to Independence program he was going on a train trip to Boston. I was pretty stressed about that, as during his last session in the program he caused some troubles. One of the things I was recently experiencing with Robert was the return of his verbal perseverations. As if reading my mind, Claudia, teacher/speech therapist/volunteer, calmed me down. She told me that when she read one of my previous posts, she noticed that I wrote about the tool, she had been using with Robert for many months. She treated persevatarions as an invitation to a dialogue and an opportunity to expand his language. After she told me that, I felt much better. Knowing how to deal with those obsessive repetitions helps Robert and the people who are with him. When Robert repeats the same word (mostly because of the undefined anxiety) he sounds like a broken robot. When, however, you treat that word as a beginning of the conversation and ask question and then another (sometimes not without providing a new answer) Robert becomes a young man again.
When the group returned five hours later, everybody seemed very happy. Robert loved the trip. He was fascinated by street performers – playing instruments, singing and dancing. One of the most important thing that Claudia or Amanda told me was that they all had a great time and that they LAUGHED.
If Robert could be a part of a group whose members laugh, there is nothing more I could wish for.
I couldn’t top that with our daily lesson.