For the Record 2

September 30, 2018

Last week, we went apple picking to Carlson Orchards on Saturday and pears picking somewhere in Rhode Island on Sunday.  Saturday afternoon we walked around Walden Pond and on Sunday we went on Cliff Walk in Newport.  On Sunday, we stopped at Wendy’s for late lunch.  We were reluctant to do so, because on two previous occasions Robert was screaming there.  Just for a few minutes, but nonetheless it was a problem.  So this time before we entered the restaurant. we reminded him what behavior we expected him to display.   Robert was very calm. He was calm despite the fact that neither of two soda fountains had regular coke.  He kept pushing all the right buttons in the right order, but the coke didn’t come out. Finally, without any complains, he resigned himself to cherry coke.

This weekend was much harder. On Saturday morning, I noticed that our cat, Amber was in distress.  I took her to the vet when Robert was still sleeping. Amber was very sick.  For three hours I didn’t know what to do. Should I let  her get a few hours of partial relief? Should I try to save her knowing that suffering was unavoidable? I didn’t want her to suffer so Amber was put to sleep. I returned home without her but Robert didn’t notice her absence.  After all they mostly avoided each other.

Amber was found 11 years ago in the middle of the street leading through forest to the Audubon park. She had many signs of trauma. We wanted to bring her to an animal shelters, but during Memorial weekend shelters were closed. Then we were afraid that a cat with her injuries might not be adopted at all, so her temporary stay in our house became permanent. Helas, she too eagerly tried to befriend us all and kept rubbing against our legs. This gestures petrified Robert so much, that he jumped every time. Amber learned to keep her distance from him. Robert avoided her too. But although he pet her only a few times and with my close proximity, he liked to give her food.  When he was doing that, Amber was watching him with complete bewilderment. Only once, just a few weeks ago, I have seen them both sitting next to each other on a couch.  However, in her first couple years in our home, Robert became anxious whenever Amber was outside. He wanted her to come home. So he was telling her, “Cat home, cat home, cat home”  and he showed her with a stretched arm which way to go. Since Amber didn’t listen, Robert demanded that we bring Amber home and usually we did.  Lately, he accepted the fact that Amber liked to sleep on the deck many hours a day.

Robert didn’t seem to notice her absence probably because I didn’t remove her dishes or her litter box yet. It also helped that we spent Saturday and Sunday mostly outside.  On Saturday, we walked along Pleasure Bay in Boston and then accompanied Robert during his horseback riding class. Today we drove to Wildlife Sanctuary on Cape Cod spending almost all day traveling.  Robert loves the Sanctuary and the Mac’s On the Pier Restaurant we went for lunch. It was a beautiful day.  Robert seemed to feel much better than he felt on Thursday, or Friday.  He wasn’t patting his cheeks or making noises.  He didn’t seem to feel any physical or emotional discomfort. As I said he didn’t notice Amber disappearance yet.

Summer of Kayaking

September 19, 2018

This summer Robert had seven kayaking instructions at Sunapee Lake in New Hampshire.  Only one lesson was canceled due to thunderstorm.  Previous year, we weren’t so lucky. Each of the three scheduled lessons happened on the day with thunderstorm. Two summers ago, however, Robert managed to reach the first milestones  with the help provided by NEHSA volunteers. Although he preferred to share the boat with a volunteer and sit passively while the volunteer did all the work, nonetheless, with minimal persuasion he agreed to get in the kayak alone. That was very important. During one of those lessons, he was sitting in the kayak while two volunteers were standing in the water.  Robert was rowing from one person to another. Not a very long distance, but he moved  independently nonetheless. That made him feel in control of his vessel despite the fact that he didn’t know how to  turn his kayak so the volunteers kept doing that whenever he approached them. I considered it a great achievement anyway. During the third lesson that summer, two volunteers were also in kayaks, but were able to help Robert steer his vessel.

This year, Robert had to start from the beginning. During his first lesson,  he shared a kayak with a volunteer and had to be reminded over and over to move his paddle. During the following lesson he had a kayak all to himself, but still was reluctant to row.  As long as the wind was pushing him, he didn’t bother to move his paddle.. On the way back, he made slight attempts to return to the beach, but the volunteers had to, at some point, attach a rope to his boat and pull it to the beach.  I am not sure, how the NEHSA volunteers encouraged him to row by himself, but they did.  Moreover, they managed to teach him how to control the kayak and move in a chosen direction.

However, we encountered another problem. Robert clearly wanted to go to the Lake Sunapee for his lessons.  When asked, “Do you want to go kayaking?”  He eagerly replied, “Kayak, yes, yes, yes.”  Moreover, he kept pointing almost daily to a date on a calendar where it was written, “kayak”.   However,  as soon as he got into a boat and moved away from the shore he began pointing to the beach and by repeating, “There there, there”, he let the volunteers know that he wanted to return. With advanced  negotiating skills, the volunteers and Robert’s sister, Amanda, who accompanied him on a few excursions, convinced Robert to extend his stay on the lake and explore its different corners. Robert could be persuaded to do so but only up to the point.  Then his demands became louder and more dramatic. He had to get out of the kayak. Even more confusing to me was the fact that at least on two occasions, as soon as he got to the beach and helped carry his kayak out of the water, he wanted to go back on the lake.

We all had a few difficult moments.  Once, he fell asleep in the car and when he woke up at the parking lot, he started screaming as if something was hurting him.  But, he didn’t want to return home.  He went to a changing room and kept screaming while I stood by the entrance watching just this one cabin not sure what to do.  Then he stopped and had a very calm lesson.  Another time, Amanda had to convince him to spent a little more time on the beach and swim in the lake after kayaking.  It was not easy as Robert doesn’t like to mix two different things together.  For him a place is either for kayaking or for swimming.  In his mind you are not supposed to do both on the same trip.  So he protested at first, but then he followed his sister and swam for a few minutes.

The Lake Sunapee is two hours away from our home. Robert could stay on the lake between 45 minutes and an hour and a half.  But each and every trip was worth the effort, time, and gas as  it was expanding Robert’s world forcing him to adjust to new instructors, new instructions, and new corners of the lake.


For the Record

September 16, 2018

The last week, Robert had three short 3-5 minutes episodes of screaming.  They happened suddenly without any noticeable cause during the days which, otherwise have been rather calm and pleasant.

On Tuesday, Robert screamed during bath.  Usually, that is the most relaxing time for him.  I first heard soft whining then the loud screams followed.  Robert was clearly in distress. His eyes emanated pain and confusion. I tried to massage his neck and face afraid he might have a muscle spasm.  Then I gave him inhalers Flovent and Pro-air  for asthma. I don’t know if that addressed the causes, but Robert calmed down and behaved as if nothing bothered him.

On Wednesday, according to Tim, Robert screamed during their ride to the mall.  Sudden and  very loud shouts lasted 2-3 minutes. Again, Robert never screamed in the car with Tim before. Nothing in Robert previous behavior alerted Tim to possibility that something was clearly bothering him.  During the visit to the mall, Robert behaved as if nothing happened.

On Saturday, we had a long drive to New York City and back home. Everything went smoothly.  We stopped at the diner for branch. We stopped at Robert’s grandmother apartment. We drove back. GPS directed us to different roads than we usually take. Robert fell asleep.  We stopped for gas at small service area.  Robert started screaming in the restroom. Very loud.  He left it and was marching back and forth through the small building.  He put back a bag of chips, I just bought him.  He wanted different bag, but put it away too. He kept marching, hitting his cheeks and screaming.  The manager of Dunkin Donut tried to help by offering  him a free donut, but Robert didn’t even notice. He didn’t want to leave the building. He didn’t know what he wanted! Finally he said, “Coke” .  I replied that I would buy it after he returns to the car.  Robert took the same bag of chips which he previously put away and went to the car…. calmly. I have to add that when he marched and screamed his eyes radiated confusion and pain.  But when he went to retrieve the bag of chips, he returned to his “normal” state.  For the reminder of the day, Robert  didn’t have any other problems.  Still, I don’t know the causes of his distress. Was he confused by finding himself in the service area different from all those we stopped before?  Was he in pain? Why did he scream? Why did he calm down?

I need to record those episodes as they might give me some clue as to the causes of Robert’s distress. However, for a more accurate description of Robert days I have to document the moments that bring balance to his life.

As we were solving Sudoku today, the moment came when Robert without any additional prompting entered into the puzzle five numbers one after another. Then, he waited for a cue, and after getting it he went forward with three other numbers.  The amused expression on his face tainted by satisfaction was priceless.

During our afternoon walk around the Pleasure Bay in Boston, Robert as always went ahead.  Still,  from time to time, without being called to slow down and wait, he did stop and either waited or walked toward me.

On Wednesday, I couldn’t understand what Robert was saying, so he wrote down, “Costco”.  “What do you want to buy in Costco?” He answered, but noticing the blank expression on my face, he followed with writing, “Pesto”.

On Monday, Robert fetched a few items from the shopping list. When he couldn’t find his Arizona Ice Tea in a regular place he quickly ventured to another aisle in the store and retrieved the bottle from there. Then he reminded me that we needed one item which was not on the list, and quickly grab that too.



Update from A Roller Coaster Ride

September 13, 2018

The last few weeks have been difficult.  Robert has been screaming for the reasons I could only guess and thus I couldn’t do much about it.  I am sure he is suffering. I do believe that some of his screaming is related to physical pain.  And I suspect that everything beginning with his stomach, through his lungs, possibly teeth to the spastic muscles of face and neck might be affected.

We have seen the gastroenterology specialist.  No relief, no explanation. Moreover, Robert’s belly still seems extended and hard to touch. We have seen the neurologist, done CT Scan of the brain. The scan didn’t show any changes except for a mucus retaining cyst behind one eye.  The ENT doctor  assured me that it shouldn’t cause any discomfort.  I try to believe him. Robert is seeing physical therapist for spastic muscles.  the therapy relaxes him but doesn’t prevent other episodes of screaming.  We have seen psychiatrist – believing that he might be very anxious.  Robert got a new proscription but the only result is extreme sleepiness in the morning.

To make matter more complicated, some of the episodes of very sharp screaming come out of the blue in the environment which has been always relaxing and has never produced such episodes before:  car ride with Tim or bathtub time.

Some episodes, however, come as a reaction to change in the environment and can be attributed to Robert’s OCD.  I believe that I can tell the difference based on the pitch and volume of the shouts, but nobody, I mean no physician,  is inclined to believe me. For them all is autism, all is OCD, all is my imagination.

Those are very difficult moments. I think I leave to another occasion the description  of those episodes, as this writing has drained me already.

So, on a brighter note I have to state that we are still learning together, although I make studying much easier for Robert.  Robert completes pages from the old workbook Write from the Start.  We practice pronunciation using very old Weber’s workbook.  We review some science information from the third grade level Real Math and we practice math skills with the help of Fifth Grade Singapore Math.  Each day, we read one chapter of an abridged children’s classic.  Currently it is Robinson Crusoe. Each day we solve one easy Web Sudoku. Robert continues to ride a horse once a week, swim once a week, play basketball or Frisbee for a few minutes each week (Not very fond yet, but going there). He continues helping with laundry and he does write, as needed,  a shopping list with names of items and stores you can purchase them from. Every few weeks, he either builds with his dad  wooden birdhouses or does a science projects. When weather permits, he rides his bike with dad or goes to Audubon Parks. When the weather is not great, he might go to the Science Museum or movie Theater.  Yes, he does scream, but he does all those things too.

Still, I am very concerned.