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. https://krymarh.wordpress.com/2014/04/26/predicaments-and-language-concepts/.
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?

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.

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.

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.