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-  https://krymarh.wordpress.com/2013/08/02/three-times-my-son-cried/   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.

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