The Battles for the Teachers’ Souls

December 19, 2018

This is a difficult subject to write about. It opens never entirely healed wounds. It is also  complicated.  At the same time, it is both painfully sharp and confusingly foggy. There are hundreds e-mails, which I still keep, demonstrating how desperately I tried to deal with those never-ending problems  but kept failing. Finally I gave up.  Many parents burn all the documents related to the struggles for education of their children with special needs.  They want to move forward. This doesn’t help the children who come after. New parents have to go through the same battles and the same pains. That is why, almost 5 years after Robert “graduated” from Mytown Public Schools, I do feel obligated to write about some of the past experiences.  But because it is a difficult subject, I will write in short paragraphs which might seem loosely connected to each other.

1. Teacher and Teacher Aid

One of the reasons I took my son from a good private school for children with autism was the fact that he was  only taught in one to one arrangement. I wanted Robert to be a part of the group and listen to group instructions. So, what was my surprise when during observation of Robert in his new public school setting I noticed that he was separated from other children in the classroom and taught by the teacher aide in one to one model.  It was worse than what he had experienced in private school as he could see first hand that he was the only one not included. I voiced my concerns with the classroom main teacher and soon enough everything changed.  From that point on, all throughout the day, Robert was learning in one of the  few groups of children formed depending on the subject, the theme of the lesson, and  student’s skills and needs. I believe that this teacher was also using elements of Universal Design. The teacher’s aid became more important and his job more diverse but also more gratifying. That was the best year in Robert’s education.

2. How to Destroy a New Teacher

The wonderful teacher, I wrote about above, was  fired by the end of her first year in the school.  I don’t know what was the rationale of the school principal but I do believe that he didn’t know much about special needs and complexities of running as diverse classroom as was this one.  Instead, the principal hired a young teacher.  He based his choice on what he believed were her “qualifications” of which the most important one was that she had a brother with autism.  Moreover, she worked as a teacher’s aide in another district and before that she worked in a private school. Still, that was her first year of leading a classroom. It would help her if she were required to write lessons plans for, at least, a few hours a week.  It would help if she were supervised and instructed properly. It would help if she had a mentor who would be familiar with the range of needs the students had. It would help if  she were open to listening to their experiences of the teacher’s aides who worked in the classroom before.  Unfortunately, the principal never entertained any notion that this teacher might need intensive support.                                                                                                                                                                                                                                                                           Each month,  Robert became more anxious and agitated  – the consequences of his increased confusion.  Robert lost the classroom in which he new the rules. There is nothing Robert hates more than  contradictory directions. So, almost every week I was summoned to school, to pick up my bewildered son at the front door to which he was escorted by two people. One day he was brought home on a school van an hour before scheduled time without any prior notification. It was lucky that I was home. The day, I picked him up while he was hitting his own face with the full force of his two arms  I decided never to bring Robert to that program again. I believed that this  teacher’s abilities were destroyed beyond repair and thus my son who had been already seriously damaged would continue the spiral to abyss.

3. Hindering the Teacher’s Growth

It was his first year of leading a classroom.

He had the best possible personality to work with young people with special needs. He was warm, patient and calm. There is no doubt on my mind, that it was he, who let my son recover from distrust, confusion, and anger.  The consultant who had seen my son in his previous program and this one, attested to that. It was just a second week but Robert, according to the consultant, was much calmer than he was in the previous classroom.  “He was relaxed,” she said.

Unfortunately there were also problems. The classroom, although at first considered part of the high school, was situated  in the administrative building. Consequently, the TEACHER didn’t have any support from other teachers. And thus he relied heavily on a job coach/teacher’s aide working in this classroom. His reliance on her was amplified  by the fact  that this person was also a Gray Eminence as she was a secretary for the School Committee.

Moreover, she was very invested in this particular program because her daughter was attending it. As every mother, she wanted to make the program fit her daughter’ needs perfectly.  She had every right to do it, but somehow, her concept of that classroom didn’t involve group teaching. As she told me much later, in a heated phone conversation, “This program was for the students over 18 years old as a sort of waiting room from which students were bused to different places”.  Those different places might be a course in college, (provided that other institution and NOT Mytown Public Schools paid for it)  be it a place the students volunteered. As the woman stated, this program  could offer some job training, but no academics. Students were not to be told what to do and they could freely accept or reject what the teacher suggested.

As it happens, all of them rejected the idea of having gym with Robert. So it was Robert’s teacher’s aide and the gym teacher who exercised or played ball with him. Nobody else. This broke my heart and I blamed the teacher for it. He was in charge.  In my opinion he was there to install in the students that they do have some obligations toward others. That there are rules of the classroom.  He had a power to persuade them or convince them to play a ball for 30 minutes a week .  But he didn’t.  He didn’t because he had the gray eminence of Mytown Public Schools who told him that this is not, “HOW THIS PROGRAM WAS DESIGNED”  And thus Robert was  again lonely if not shunned by other students with special needs.

IN a letter to the School Board I stated that The School committee has a right to design program as it wishes, but the Mytown Public Schools cannot place my son in a program that is so horribly incompatible with his IEP.  Of course, it had to be said, that the most members of the School Committee had a very limited idea about IDEA or the state laws governing special education.  It is possible that they look at special education through the eyes of the former principle of High School or the secretary of the School Committee.

As I am writing this, I am still angry, as I see how much money was wasted on a program that didn’t accept my son and how many chances for learning social skills were lost. I am angry about the time and energy I spent trying to persuade the TEACHER, the special education director, the superintendent, and the members of the School committee to TEACH MY SON.  I wrote hundreds of e-mails persuading, begging, filling for mediation, and then for hearing,.  At some point I knew I just had to preserve my sanity and give up.

Even now, when I remember some of the things that happened,my blood boils and I have to take a break.

I don’t know how, but this TEACHER by the end of the January of the following school year, changed dramatically.   He began planning his lessons and he connected them with the real life experiences from community trips. He organized more opportunities for job trainings for the students. And he did so much more about having Robert accepted. He always had a very good, calm personality to work with special needs population but now he became a great teacher. He became the TEACHER,   I always wanted my son to have.

And then he quit.

Possibly, he couldn’t take the pressures coming from Gray Eminence and me.  He quit.

It is possible that I am the person who was blamed for his decision. I wanted the classroom to teach my son despite the fact that it was considered a waiting room for adulthood.  I wanted to make the way my son was taught to be also beneficial to other students.  I was the one voicing concerns, by bringing educational consultants to the classroom and offering new educational materials.

The Grey Eminence, was soft-spoken and only once she lost her cool when I asked her “Why she doesn’t want this classroom to teach its students”  It was clear that the anger about my effort to change the program was boiling and she exploded. That was when she told me that the program was a place where the teacher’s activities were, more or less,  reduced to janitorial supervision of students.  It was also implied that it was not the program, that was designed to answer my son’s need. No, she didn’t say, my son should go somewhere else. But she implied that.

Yes, I regret terribly that this TEACHER left, but I do not feel guilty.  I do think that it was The Grey Eminence who was impeding his teaching. Yes, I was loud, she was soft-spoken.  I was trying with the help of consultants bring changes to the classroom while she peacefully and pleasantly tried to keep the status quo. Yes, it was I who introduced criticism hardly hiding my disappointment which might come out as anger while she was spraying the balsam of contentment over  the classroom. .

At some point, the special ed director accused me of “hating the TEACHER”.  I told her, that nothing was farther from truth. He did save my son after hiatus of the previous 6 months in an old classroom. He did save him. I have never stopped being grateful for that. I liked his calming personality, but I did believe that given his appeal to the students, he could do so much more and I was bewildered why he was not trying.   Then I learned about the politics of the classroom.  The politics of opening a program by Mytown Public School and not giving almost any money for teaching materials.  It was the politics of the School Committee which had to separate students whose differences in ages were over 4 years as the law demanded after the expiration of the grace period given a few years before by the state.  The classroom had to be created and so The Mytown Public schools built it in such a way as to limit any expense  and by doing so it hindered education of almost all students placed there  including the Grey Eminence daughter.

I understood later how hard it would be for any teacher to open his/her wings and soar in those circumstances.  But he did.  For 5 months but he did.   I hope he is not discouraged from teaching.  I hope somewhere some other young people benefit from his skills, from his calm and patient attitudes and, most of all, from the strength and determination he showed when he regained the control of his teaching profession.

I have to add.  I don’t blame The Grey Eminence.  She fought for what she considered to be the best solution for her daughter just like I fought for my son. It is not her fault that she was given a power to influence the way, the program was designed. She might not even be aware of her prominent status. But I do blame members of the School Committee and the former superintendent of the Public Schools in Mytown. They allowed for this imbalance to the detriment of my son’s education.










The Confusing Pains of Changing Habits

December 1, 2018

A few times during the last week, I told  Robert that we would move his horseback riding lesson from Sunday to Friday.  He accepted that change in a schedule without protests. However, nobody made Robert aware that during a lesson, he would have to use a blue helmet instead of a purple one. That was the last-minute switch and he was not ready for it.  As soon as the instructor told him to put on a new, blue helmet, he protested.  When, he was told that the purple one is not there anymore, he ran to the riding arena and came back with the  purple helmet already on his head.

This was one of those moments when I don’t know how to react.  Insist?  But insisting might result in failure to accomplish acceptable response.  Of course, when insisting doesn’t work, I can reduce the feeling of complete lack of influence over Robert’s behavior  by asking Robert a question. For instance, “Robert, do you really want to wear the purple helmet? Start with I, and tell me which helmet do you want to wear.” Then I should wait for an answer. Since the most severe of Robert’s problem is his very limited functional language, having Robert to respond in a full sentence could be treated as a valuable consolation prize. It could give Robert one more example of using language instead of non verbal behavior  and reduce his anxiety related to the fact that he did something other people consider wrong.  Because, even when he “wins” the battle” and continues wearing purple helmet, he is not happy, he is anxious and doubtful and he doesn’t know how to solve his dilemma.

This is what I should have done, but didn’t. In a public place, my responses are almost always tainted by the presence of other people.  I understand that each person brings to the conflict Robert has been causing, a different perspective. I feel obligated to take those perspective into account, even though, I don’t exactly understand them. Moreover, Robert usually gives the person who is in control of the physical place and who is his teacher preference over me.  Finally , there is a confusion I feel because on one hand I feel obligated to address Robert’s problem myself, on the other, I  prefer others to address Robert directly.  The effect is more doubts and hesitation on my part and more confusion on Robert;s part.

And confusion he hates.

That Friday, Robert’s instructor agreed that Robert could wear the purple helmet. She just made sure that Robert knew that the next time the blue helmet is obligatory.

Robert was fine with that. Well, for 10 seconds.

As soon as he felt that the pressure to wear blue helmet subsided, Robert discovered the freedom to do what was right.  Such freedom is a very difficult thing to deal with specially if you are used to always do what you are told  or by what you have done many times in the past.  When other people words or the past behaviors shape your reactions, then taking it upon yourself to make decision seems overwhelming.  And Robert was overwhelmed.  He moved closer to the shelf with the blue helmet, then away from it toward the riding arena. He didn’t know yet, what to do.  It took him a few more minutes to decide and many more trips between his horse and the shelf. He suffered, he was anxious.  He was confused. he made noises of frustration and patted his cheeks in short and quick motions.  He didn’t know what to do. He wanted to do what was right, what his instructor Meghan told him before, but that would mean he needed to change his habits.  The habits which suited him well for the last few months. After a few minutes, Rober was almost ready to mount his horse, Calvin, when he turned back and ran to the shelf.  He took off the purple helmet and put on the blue one.

He was still not sure that was the right decision, but as Calvin walked out of the arena to the the woody path by the edge of the lake, Robert’s doubts disappeared. He was fine.


For the Record 8

November 26, 2018

On Screaming

There was much less screaming in the last two weeks.  At least less screaming at home.

1. A few days ago, Robert began emptying dishwasher before the cycle ended.  I told him not to do so and Robert started screaming.  He was confused and upset. He wanted to help but instead was told that he did something wrong. He must have hated that. He expressed his confusion quite loudly.  When he calmed down, he didn’t continue taking dishes out, but instead stood silently in the kitchen.  After a while, he said softly “dishes”. “OK Robert,  you can put dishes away.” I decided that I would rinse dishes before using them.  It was late and I was not in a mood to teach-explain- struggle.  That is why I told Robert to put dishes away.  But at that moment, he wasn’t really sure what to do as he asked again, “Dishes” and I responded the same way.  He asked two more times before he removed cups and plates from the dishwasher.

2.  Robert waited for his lesson at the barn.  The cold, wet wind was passing through the corridor.  I asked Robert to move a few steps to escape the draft. He didn’t move.  Instead he patted/slapped his cheeks and he screamed.  Maybe for him my suggestion meant that the lesson was not going to happen.  Maybe he felt neglected.  Maybe he felt confused.  In the barn it was the instructor who should give him directions not his mother.  I don’t know why he screamed.  However, later that day, he threw up in the bathroom.  so maybe he was not feeling well.  Again, I don’t know.

3. Today, as he was undressing himself to take a bath, he  produced two sharp and long screams.  I don’t know why.  Maybe something hurt him.  Maybe he waited for one of us to turn on the water, although that is something he usually initiates. We  get inside the bathroom when we hear the water running.  Then we check the temperature and adjust it if necessary.  today, I turned on the water and that somehow calmed Robert.

On Visiting Relatives and Guests.

Grandma came for two weeks visit.  The uncle only stayed one night.  Robert didn’t tell grandma, “New York, New York” as he used to do during previous visits.  “New York, New York”  meant that grandma should go back to New York City. The fact that Robert refrained himself from repeating those words was a sign that he got used to grandma’s visit.  It is also possible that grandma bribed Robert by inviting the whole family to Outback restaurant. Whatever the reason, the visit became much more pleasant for everybody.

Not so for Robert’s uncle.  On the first day of the visit, he heard, “House, house, house” quite often.  Robert wanted his uncle to return to his HOUSE instead of staying in our HOME. Still, Robert expressed his demands with much less intensity than he did it during previous visits.  The second day, he accepted uncle wholeheartedly.

Robert tolerated a few guests during Thanksgiving dinner.  Not even once he told anybody, “House, house”.


We Are Still Learning

But nothing very challenging.  Easy, simple, short.

A page from Autism and PDD Adolescent Social skills Lessons.  Interacting.  Today, Modesty and Looking Neat

A page from Functional Routines Work.  Today, Housekeeper Hotel Bedroom

One Easy Sudoku

One simple writing exercise.  Today, writing a friendly letter

Two pages of math – mostly reviews, Today, adding and subtracting fractions.

A page from Weber’s book. Today, words ending in “L”

One chapter of a 2-4 grade book. Today, Usborne Reading Programme A Story of Ships.




He Voted

November 13, 2018

A couple of years ago, Robert accompanied me to my pooling place.  He didn’t vote.  He was not a registered voter at that time. I dragged him along for learning purposes.  The visit would not help him understand what election is.  The purpose of that visit was to create images related to words “Ballot”, “Candidate”, “pooling place” and to observe the steps each voter had to take to fulfill his or her civil obligation.

My efforts to teach Robert  the idea of selecting a better person for specific responsibilities related to either activity or position were not successful. With Robert narrow social circle there was nobody to choose from.  Yes, we read about three branches of government.  We read about elected positions.  I tried to explain to Robert that people chosen to be his representative might do something that would either benefit him or not.  I tried.  But I wasn’t sure Robert was ready to vote in 2016 election. so, he didn’t vote.

I am not sure he was much more attuned to the idea of electing his representatives even this year.  Nonetheless, we continued to read about elections, practice vocabulary, and learn a few names of people who were candidates with election on our minds.

I helped Robert to become registered voter.  We voted in primary and we voted on November 6.

Robert was extremely serious. He took the ballot, followed me to a booth,  and without one word between us, he… copied all my choices.

No, I didn’t feel bad about that. Robert didn’t vote the way Trump directed his supporters to vote.  No, Robert didn’t attend any of Trump crowded, loud rallies. He would hate them. No, he didn’t vote like Trump’s base did.  However, he didn’t vote the way I told him to.  I didn’t tell him anything.  He decided on his own to vote the same way I did because he trusted my judgement.

And in doing that, he showed more maturity and wisdom then  you know who.


For the Record 7

November 12, 2018

I had to pick Robert from his program before 11 AM.  I heard he was sleepy. He was asking for the bus, so it was assumed that he wanted to go home. When asked if he felt good,  he answered , “No”. He was pacing.  Of course, I am not sure really what was the cause. He could ask for a bus because something out of ordinary happened in his van today.  There was a different driver.  Moreover, other passengers ordered Robert to sit in a different place. They always do that when there is a new driver. They order him around. He listened but maybe he wasn’t happy about that,  So, when he was saying, “Bus” it might be that he wanted to share that information but didn’t have verbal tools to express himself.  That might be why he was pacing.  That might be why he said, he wasn’t feeling good. Of course there is also his sleepiness and that is harder to explain.  Because he slept well at home.  Maybe he didn’t sleep but was just enough quiet not to wake up anybody.  I don’t know.

I am saddened by this experience, because whatever happened Robert couldn’t express himself and nobody was able to understand him.  Not that I can either.  I picked him around 11.  I was at least relived that he was calm. He doesn’t like to leave in the middle of the day. But today  he was fine.  Although, he ate his lunch already, he still wanted to eat an eggplant which he planned for dinner. Since he insisted, I asked him to help cooking. And he did.  I peeled and sliced the aubergine and Robert  seasoned it with salt and pepper, sprinkled with flour, dipped in the egg and breadcrumbs, and fried in the oil. He ate and watched Netflix.

Later he went with me to Stop and Shop.  Two different man who suddenly appeared in front of him seemed to startled him and for 10 second he froze then he hit his face a few times, made some sounds. After we passed one of those men, he calmed down and continued shopping.  From that point on everything was uneventful.  Yes, we had to wait at the self register as one shopper had  problem with payments and needed assistance, but Robert didn’t mind.  He didn’t ask for potato chips, as I told him before entering the store that we are not going to buy them.  At home, he unpacked everything and put all the groceries away. I let him do that, but from the living room I heard one short expression of frustration.  I didn’t run to check what was the reason.

Later we were folding laundry together.  Robert patiently kept folding white T-shirt. He didn’t mind that I corrected him a few times.

As always, we studied together for an hour and a half.  I prepared pages for Robert to copy, trying to improve the size of some of his letters.  Over last couple years, they became tiny and hard to decipher. Robert finished reading book about Olympics, worked on ratios, and with my diminishing assistance solved Sudoku.

It was a good day at home. Robert had an opportunity to practice skills I used to teach him – cooking, folding laundry, using self register.  It was over all good day, and yet those few moments of his frustration, his psychological or physiological discomfort he cannot explain left me concerned and worried.

Improving the World One Pen at a Time

November 6, 2018

To complete Robert’s  registration for an appointment with a  physical therapist, I signed my name on a small black screen and put the rectangular pen next to it. Robert immediately picked the pen and placed it carefully in its appropriately shaped black casing attached to the counter. Then, he looked at the next window and noticed another pencil  haphazardly disposed on the surface.  He rushed in and again, put it in the casing.  Then he repeated the same action in another unoccupied window.

A few days later, in the lobby of our local bank, Robert continued his mission to attach each idling pen to its proper resting place. By the time, I reached the teller’s window, Robert managed to correct the world three times.  There was the fourth pen, but it was still being used.

Every place we are going, Robert tries to improve his surrounding by many tiny corrections. Today, as he was leaving the barn after horseback lesson, he closed completely two slightly open drawers, and ajar doors to two bathrooms. Just before leaving, he noticed a small helmet left in the barn and placed it on the shelf by the exit.  He did a few other things, but so quickly one after the other, that I was not able even to register them in my memory.

Our trips to supermarkets are enriched by Robert’s effort to straighten and line up all the items in front of shelves. When he needs to purchase a can or a box of food, he chooses to take the one from behind so  the frontal display remains undisturbed.

A couple month ago, when Robert was leaving his neurologist’ s office,  Robert, without one word notice, turned upside down the mat under the computer mouse while the physician was still working on this gadget.  I am not sure if the doctor was more surprised that Robert moved the mat without asking for permission or that he noticed that it was, in fact, upside down.

Years ago, Robert became anxious during dental procedure not because he couldn’t tolerate discomfort, but because the cabinet doors were opened. So he got up, shut the door, and much calmer he relaxed on a chair letting the dentist continue with filling.

It used to be that Robert paid similar attention to the misplaced things at home.  Not any more.  In McDonald’s, Burger King, or Wendy’s, Robert will pick all kind of litter from the floor or other tables, but two pieces of the white paper I left on the hallway floor yesterday, are still there, waiting for me to pick them up.

No surprise there. Robert feels responsible for the whole outside world, but home, home is mother’s responsibility.

For the Record 6

October 28, 2018

As long as Robert screams intermittently and without any clearly identifiable cause, I feel obligated to record his screams and situations in which they happen. Yes, Robert is still learning.  Yes, Robert is still participating in old and new activities.  It is all important.  But his screams take precedence over everything else.  There are sounds which I blame on unidentified pain.  There are sounds which I attribute to his confusion or anger.  It is possible that I am wrong both times.  I hope to find answers and possibly a treatment.  Cure? 

On Wednesday, as Robert was writing in his Journal he misspelled the word “solved”. He wrote “sloved”.  When I pointed the error to him, he tried to write correct version  on top of the misspelled one. The word became unreadable.  I asked him to cross it and write the correct word after it.  He did, but he was upset. He made a few angry sounds and hit his cheeks. I turned away and pretended to leave the table. He calmed down and continued writing his daily note.  When we finished, I got up while Robert was still correcting some of the letters in his note. In a few minutes I heard him screaming and patting/hitting/ his cheeks again. When I came back to the table he was sitting at, he pointed to  two words “solved” in his Journal. I realized that he wanted me to confirm that it was fine to have them written like that.  So I did, and he calmed down.

On Thursday, Robert screamed for a few second when the door to the swimming pool opened and two people came out. It was clear that he was startled. Besides, the screams were short.  Then, he took time getting in the water.  But at least he didn’t scream as it was the case during previous three visits. However, he made frustrated vocalization after one lap.  Then, he calmed down completely and swam another 10 or 11 times.  It is possible that Robert felt some discomfort because the instructor was not in the water as she usually is.

On Friday, Robert screamed a lot more during his physical therapy.  It was different than what he experienced before.  He had to do some exercises.  Moreover, the therapist left for a couple of minutes, so Robert probably thought the session was over.  Nonetheless it was a difficult time for him and for me.  As Robert was screaming he was also reluctant to move. He made noises, hit his face and keep freezing in place.  He still wanted to go to a store as we had planned before, but I told him we couldn’t go there, because of his behavior. I said it a few times.  By the time we reach our home, Robert was his calm if not relaxed.

He had a good outing with Tim, even though they did something new – walked on an indoor track in YMCA. But when he returned home, Robert made many noises of either discomfort or anger. Since, he held each breath slightly longer and exhaled loudly, I assumed he didn’t feel well. He also made noises while in the bathroom which let me to believe that his stomach might be a problem.

There were no screams on Saturday.  We went to Polish Store in the morning. In the evening, he went with his dad to a swimming pool in YMCA. On Sunday, he didn’t make any grunting sounds of disappointment when his horseback class was canceled and he had to turn back.  He was also behaving perfectly in the evening while  watching Johnny English new movie in Showcase Cinema.

It surprises me that Robert almost never makes any noises while we are learning together.  This week we read about electromagnets and build one.  We finished a book about King Arthur and began reading abridged version of Oliver Twist. We counted areas of different triangles (Singapore Math level 5A)  and then switched to solving simple equations (Momentum Math level H).  We used cards to practice verb tenses.  He continues with perceptual demands posed by worksheets from Write from the Start”. He also solves one easy Sudoku with my decreasing level of help.


For the Record 5

October 21, 2018

Robert had a relatively peaceful week.  At least that is how the last seven days appear from my perspective.

On Thursday, he  was  anxious during his swimming class wanting to leave before the end of the lesson. But his behavior was slightly better than it was the previous week and much better than two weeks before.

On Friday, Robert had an ultrasound of his kidneys. Jan and I accompanied him to the lab afraid that he might be anxious and need our support. But he wasn’t and he didn’t.  The technician who administrated the test with her calm, matter of fact demeanor and a very warm voice talked to Robert DIRECTLY. He followed her instructions WITHOUT WAITING FOR ME TO REPEAT THEM.  I was present but not needed.  I sensed that this was the situation Robert could handle on his own and that felt great. As we walked through t he building Robert noticed Dunkin Donut and Five Guys. He first said, “Dunkin Donut” but I reminded him , that he would go there with Tim in the afternoon.  That made sense to him as he quickly turned and marched toward Five Guys.

On Saturday, we went apple picking to Carlson Orchards. This is a place which became familiar to Robert so even though we had to go to a new place to find Fuji apples, he didn’t mind.  We walked one way and rode on the hay wagon back to the store.  it was a very relaxing day for all of us.

In the early afternoon, Robert’s uncle came for a weekend visit which included sleepover. His presence made Robert happy for most of the day.  When it became dark outside, he deduced that it was the time for uncle to go to his house. “House house”,  he said quite a few times. When I, however, prepared a bed  for our guest, Robert accepted his uncle extended presence.  After all,  Robert never tries to undermine any fait accompli.

Today, Robert had a horseback lesson.  He rode on his old horse Calvin and practiced trotting. I think Robert was happy that Calvin had recovered from his illness and was back in the rink.  They both, Robert and Calvin, seemed to have fun.   In the afternoon, Robert went for a walk in Blue Hill with his dad.  On the way home, they stopped at Costco to buy blueberries and water.  All the time Robert was calm and happy.

When Robert is relaxed, I am relaxed.  But given the recurring episodes of his unexplained discomfort, I cannot stop worrying.



For the Record 4

October 15, 2018

The life with Robert more and more resembles roller coaster ride.

Last Tuesday, Robert cried.  When Jean picked him up from Lifeworks, Robert was happy, but as soon as they boarded the Red Line train, Robert started crying with big tears rolling down his face. Jean has never seen Robert crying.  He has seen Robert screaming, making noises, hitting his own face, but never crying. Well, I have seen Robert crying only three times in his whole life. I listed those rare events  in the post-   Jean didn’t know why Robert was crying and Robert couldn’t explain why.  Maybe he was crying precisely because of the incapability to explain himself. Maybe…He cried a few minutes or so and then he returned to his “typical” behavior – either happy, or frustrated or in angry distress.

On Wednesday, Robert went to his new program and so he did on Thursday.  Since he had a doctor appointment, Jan and I picked him at 1 PM from HMEA.  We arrived a few minutes before 1 and had an opportunity to observe Robert. He was wearing an apron and gloves and was separating cans by the corporation. He seemed proud of his work and pretended not to see us.  Exactly at 1 PM, he took off apron and gloves and went for his notebook.  Well, that when the problems started.  He didn’t accept what the job coach has written, but couldn’t explain what he wanted there. He kept erasing some words and asking in the way nobody understood to write something instead or something additionally.  That lasted almost 15 minutes.  he was frustrated but persistent.  Possibly, the sentence “Have a good night” was not what he expected.  He expected “Robert had a good time” so he wrote the word “time” , packed his bag, and left.

During the visit with urologist, Robert was very tense and impatient. He wanted to leave and go home.  It was hard to talk to the doctor, as he interrupted often with loud, “Home, home.” Finally I told him what he always tells me, “Five more minutes”.  That did the trick. doctor and I could finish our discussion.

On Friday, we drove to New York City.  In Providence, a driver who lost control on curvy road hit our car.  Robert was relatively patient during the time it took the state trooper to arrive and collect information.  He was calm in the restaurant and happy to be in grandma’s apartment.  He went as always for a walk to Central Park and had his usual sandwich at Subway. On Saturday, we drove to Philadelphia with Robert’s grandmother and took a long bus tour.  Robert was very calm.  He also didn’t seem to mind a visit to IKEA. However, he showed us his disappointment when we returned to his grandma place.  I knew that he felt upset that we didn’t go to a restaurant for dinner. I made him potato and cheese, not sure if he would eat it.  Robert doesn’t accept the same or similar food in a different setting. But Robert ate it.  He also ate chicken cutlet.  The matter of fact, he ate two of them.  For me, this was the highlight of the trip.  Robert eats either at home or at restaurants. Sometime when we are visiting relatives, we have to bring his food from McDonald.  I remember only two times when the hosts prepared something for Robert. Once it was a bowl of plain arugula and crackers.  Second time it was a very good bread with butter. The fact that Robert ate potato and cheese and chicken cutlet in his grandma’s house was a milestone on torturous road to normalcy.

On Sunday, we drove home. We stopped at Outback restaurant. It had a toilet in a different corner than the Outback, Robert has been patronizing in the past.  Robert got upset, screamed and hit his face.  He stopped, but he was tense most of the time.  However, he let us take out the hamburger he was not able to finish. In the past Robert would rather staff himself with food he couldn’t digest then take it home. So,I consider his willingness to take the food home another milestone toward soothing commonality.

Unfortunately, the next two stops stressed all of us. Robert wanted to go on a Cliff Walk, but when we stopped there, he became upset again screaming and hitting his face. It didn’t help that his dad suddenly turned back to change parking space.  But during the walk, Robert calmed down.  He was so calm in the car, that we ventured to go to the orchard for pears. Again, that was something Robert also agreed to do. But, his screaming and hitting his face was such, that we had to retreat. To make it worse. Robert wanted to pick up pears, but he didn’t want to stop screaming and hitting himself.  It didn’t help that Jan was hesitant. Robert reads all degrees of Jan’s hesitation very well and thus becomes even more confused.  But after I got to the car and Jan stood by the car, Robert gave up.  In the car, he quickly calmed down again.  By the time we arrived home, he seemed happy again.  As always, in a few minutes, he unpacked everything placing medicines, toiletries, clothes, and some groceries bought on the way in right places. Then, he studied with me following our rather rigid routine. Later, he ate his hamburger from Outback, took a bath, shaved himself and went to bed.

For the Record 3

October 7, 2018

This week, Robert’s schedule changed. On Monday, as always, he went to Lifeworks for the full day.  On Tuesday, he still went to Lifeworks for a half day and then he went with Jean on a train trip to Boston.  Jean said that Robert  had good time.  On Wednesday, however, Robert went for the first time to a different program in HMEA.  He went there on Thursday also.  On Wednesday, he came home relaxed and ready to go to HMEA the following day.  But on Thursday, he came home slightly tense and kept asking about Lifeworks.   I calmed him when I said that he would still go to Lifeworks on Tuesday (Monday is the Columbus Day and the programs  are closed.) Unfortunately, when we went to the swimming pool for his weekly lesson, he started screaming and hitting his face as he was about to jump in the water. He swam one length of the pool and at the other end he again started screaming and hitting his face. Each episode lasted for a minute or two, but for me, they seemed like eternity. Then, Robert calmed down, swam 12 times back and forth and followed all Lucinda’s, his swimming instructor, directions.

However, at home, during his bath, the very loud screams returned.  He was clearly not feeling well.  I massaged his cheeks and gave him asthma inhalers.  Robert calmed down but not completely.  He still seemed to hold his breath a little longer, for me the sign of his discomfort.  On Friday, he slept past 10 AM, which is rare.  He had stuffy nose and he screamed and hit his face again.  I gave up on the activities I prepared for this day.  However, when he felt better, we drove to a bank and a post office.  On the way home, we got take out lunch from McDonald.  For the remainder of the day, Robert was calm but sleepy until Tim arrived.  Tim presence perked up Robert and in a record time he was ready to go out to play basketball, walk in the park, and have a donut in Dunkin Donuts.

On Saturday, we had a wonderful day.  Robert was calm and happy all day. When he is happy. Jan and I are relaxed as well.  Robert reiterated request for a trip to the ocean and so we drove to Newport.  First, we walked through the town’s fair and then we went on a Cliff Walk.  Robert wanted to go on the rocky part of the trail, but I was afraid I will trip and fall because I am much more wobbly lately. Although I wanted them to go alone, they both decided to return to the car. On the way home, we stopped at the Stonefield Restaurant.  It was slightly past Saturday’s branch but before early dinner, so there were no many people there. Really, the best time for us to visit.  It was such a relaxing day.  Not even one incident to be concerned about.

We started Sunday with Robert’s horseback riding lesson.  He was riding Governor, a tall white horse.  Since Governor is not as sensitive to touch as Calvin, Robert had to kick harder to make Governor walk.  Robert was also practicing moving a few steps back. And of course, he had an opportunity to enjoy himself walking outside along the lake.  After the lesson, as always, he took off the reins.  He didn’t take off the saddle as Governor was getting ready for a next rider. That surprised Robert slightly, as a change in routine, but he didn’t protest at all.  And that surprised me! Robert gave Governor carrots and it looked as if all went as smoothly as possible except…. When Robert closed the door to the equipment room, I told him to keep the door open because two instructors were still there.  Robert started screaming.  Maybe because, he really wanted the door closed, or maybe because I didn’t appreciate his efforts to make everything rightand pointed to him that he did something wrong when he tried to do his best.  Luckily Meghan stepped in and pointed to Robert all other doors, he could close.  So he did and calmed down.  After the lesson, we drove to Public Market in Boston to buy some vegetables.  Later, we walked to Boston Commons. We bought and shared one piece of fried dough, rested a little, and returned to the car.

Last night, Robert wanted to write about his weekend in his notebook.  For him writing in the notebook, means that the following day he would attend his program.  Since that was not the case, I tried to prevent Robert from writing.   But Robert insisted so he wrote with dad, who still kept reminding Robert that there won’t be Lifeworks on Monday. That must confuser Robert.  Maybe because of that fact,  Robert started whining when he was taking an evening bath.  Maybe because of that, he didn’t go to his bed but instead slept in different bedroom and without his favorite comforter. He wanted to pretend that it was not a normal night, or maybe not a night at all. Just an afternoon nap. Maybe he tried to stay awake all night and now. Maybe that is why he doesn’t want to get up today and hasn’t even eaten his breakfast. Maybe he wants to pretend that this day doesn’t exist since it is not a day hewas supposed to go to  Lifeworks.

I hope he is not sick.

I hope he is not depressed.

Also, I wondered if Robert’s screaming in the pool on Thursday was not related to his dinner of eggplant with cheese and tomato sauce.