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.