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.


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.





August 21, 2018

The postcards found their ways to Robert even though the street number was wrong. Even more surprisingly the cards were coming despite the wrong zip code.  They were coming from all over America. From the north, south, and west. Robert could see images of the Great Wheel in Seattle, the Parthenon in Nashville, and the Gateway Arch in Saint Louis. He could imagine steps down the Mammoth Cave, a place he has never seen. He recognized the view from Acadia National Park, but not Lexington Arch in Nevada, although he drove through that state. The bison from North Dakota and Tinker Bell from Florida joined Jesse in sending greetings. Just this month three postcards arrived from Washington DC.  There was a picture of the steam locomotive “Charlotte” taken at the National Museum of American History, there were cherry blossoms beautifully framing Arlington Cemetery, and there were pictures from the Holocaust Museum’s The Wall of Remembrance.

There are so many cards from Jesse that Robert found it appropriate to build a wooden postcard holder. He built it with very little help from dad, just in time for the last three cards. Still, from time to time he takes the cards away, spreads them on his bed and then he tries to organize them, never sure how to do it right.

I have never seen Jesse.  I heard about her — not from Robert who cannot tell me much about her, but from Pam.  On Monday nights,  Pam used to accompany Robert to Applebee’s restaurant.  There they met Jesse, the waitress and the artist with green hair.  If the restaurant was not too busy, they chatted.  Jesse and her friend Cara Leigh were planning a flight to Alaska and trip back to Boston in a rented car.  She asked Pam if it would be fine with Robert’s parents to send him cards from different parks they were planning to visit.  Of course, the parents agreed, doubtful if any card will ever arrive.  After all, beautiful, young women would be preoccupied with thousands of things on their long trip.

But the cards kept coming. They were coming, as I said, despite the wrong house number and the wrong zip code.  At first, Robert didn’t know what to do with them. he was turning them back and forth.  He had to be encouraged to read them.  But with every new postcard, he became more and more interested in both the writing and the pictures. He even began to check regular mail for his name.

It really helped that he constructed the card holder, since it gave him a chance to take cards out and then put them back.

Whenever he does that. I do think of Jesse, a young artist with abundant heart and green hair.

Preparing for the Imperfect World

July 18, 2018

I don’t know any well established method to teach Robert that the world is not the perfect place and thus we have to deal with its imperfections one way or another. It would be cruel and illogical to set up the environment in a way that would demonstrate to Robert that things break, events don’t follow the anticipated order, and the people don’t always keep their word.

Still, these things happen and when they do, the opportunity arises to learn from those incidents. We might call it accidental teaching  to differentiate it from the approach called ‘incidental teaching”

The term “Incidental teaching” has already established meaning as it applies to a child directed learning.  The teacher/ therapist sets the student’s surroundings in such a way as to increase his/her ability to initiate contacts with other people and/or objects.

Accidental teaching is never prearranged and thus takes both, the student and the teacher, by surprise. Dealing with imperfect world is not easy for any individual, but it is specially difficult for people with  developmental or psychological impairments and for their teachers. On the other hand,the most basic way to learn about universe imperfection is to… survive it.

Then you can fix it or ignore it and go on. Lesson learned.

For better or worse, the world provides ample opportunities to experience and learn from surrounding us imperfections.

1. Accept the change. Robert expected cheeseburger and fries for dinner, but the restaurant didn’t serve burgers. They offered chicken fingers and fries. Robert still protested angrily.  (Luckily his loud protest were muffled by very noisy other diners) “Robert, if you don’t want chicken fingers we can cook hamburgers home.” I said knowing that leaving a restaurant would not be a preferred option for Robert. So he relented. His fries and chicken fingers, by the way were very good.

2. Ask guilty party to fix it for you. Robert ordered number 4 in McDonald’s buttermilk crispy chicken sandwich with fries and sweet and sour sauce. He sat down ready to eat,  unwrapped the sandwich, and screamed in consternation.  There was no chicken in the bun.  Robert kept making noises of uttermost displeasure by such a betrayal as he followed  his respite provider to the counter. He got another sandwich, which he refused.  He didn’t want the bun, he only wanted chicken. And he got it.

3. Look somewhere else for solutions. Not even week later, another problem in a different McDonald’s The soda machine didn’t work. That meant no coke with the sandwich.  Again, Robert expressed his dismay by noises and patting his cheeks in quick, light motions. His respite provider proposed buying bottled coke in a store next to McDonald’s. Reluctantly, Robert entered another store, bought coke, brought it to McDonald’s, poured it to McDonald’s paper cup and proceeded to eat.

4. Ignore it. The key to the car couldn’t be fixed. The new one was too expensive and we, the parents decided to use the spare key instead. Robert was not happy.  He tried to fix the key with the screw connecting metal part with plastic one.  It didn’t work. He insisted on his dad to repair it. Dad couldn’t. Robert kept insisting, but the solution didn’t provide itself. As time passed, he insisted less and less, once a week, once a day, then he stopped.

5.Wait for solution.  The car didn’t want to start. The battery was down.  Robert wanted to get home, but the car would not take him there. So he waited and waited.  Finally AAA arrived , jumped start the car and we drove home.  This time, Robert didn’t scream.  He knew already what to expect. He has waited for AAA a couple of times before that.

He knew that world is not perfect but sometimes it is manageable.







On Sudoku and Screams

July 18, 2018

For more than 2 months I have been silent. There were times I wanted to write about Robert learning to solve Sudoku. I wanted to record his struggles with understanding, in the context of that game, what “vertical” and “horizontal” lines are. I thought about recording the changes in his attitudes toward the puzzle from resistance to sly smiles when after smoothly placing the last few numbers, he completed the task.

I considered writing about how I approached the problem.  I analyzed the puzzle and chose the number that was easiest to place. After feeling a few spaces with that number, we took a break by doing something else.

When I asked Robert to find what number was missing in either horizontal line or a vertical one, I covered the rest of the puzzle with two papers.  This way Robert couldn’t step off the track.”Only up and down”, I kept telling Robert.  “Only left and right ” I kept repeating. “No stepping off the ladder, no stepping off the path.”

I didn’t have to help him finding missing numbers in squares, as that he figured by himself.

Still, he became frustrated easily. So, I printed a few 6 by 6 Sudoku.  He solved them quickly with wither minimal help or without help all together and he seemed ready for the bigger challenge. So we went back to 9 by 9. Every day, we solved one Sudoku.

As of now, I still prompt him by suggesting what number to look for first or turning his attention to the fact that one number is missing in the column, row or a square.  Yes, I didn’t take off the scaffolding yet, but I am happy to notice that he is using less and less of my support and maybe one day he would fight boredom with the new skill.

I wanted to write about this process. However, my wish to record that was blown off by sudden, unpredictable, unexplainable, sharp screams often accompanied by self-injurious behavior – slapping quickly his own cheeks.  Those screams cut through all the sentences, and all the thoughts that were just forming and replaced them with the confusion, powerlessness, dread and the need to find the possibly medical cause. Instead of writing I keep calling physicians to find the culprit. I am still doing that…

Finding Serenity

May 7, 2018

I thought, it didn’t make much sense.  Driving two hours each way for a 45 minute long walk! But then, we haven’t been in Wellfleet’s Bay Wildlife Sanctuary for almost 10 months and we heard its nostalgic calling.  All of us.

“Ocean, Ocean”  Robert kept repeating.

“Ocean is still closed for swimming’, we told him, “but we can walk on Cape cod”

“Cape Cod” said Robert.

We weren’t sure if he understood where we were planning to go, so Jan added, “It is Audubon, like Moose Hill or Stony Brook.”

“Audubon, Audubon”  Robert confirmed his choice in his distorted speech that  squeezed each word into one strange syllable.

So we went.  we stopped on the way in Burger King.  As Robert finished his meal, he started screaming.

I didn’t know why he was screaming, but I regretted our excursion. He patted his cheeks, freezing in place from time to time and he screamed.

That didn’t last long, but Jan and I were momentarily paralyzed.  Robert screams always hurt.  They hurt double because we believe that Robert is also hurting.  with a lot of patience Jan encouraged Robert to get into the car. We thought for a 30 seconds what to do and we decided to continue driving to Wellfleet.  Robert was calm, although I noticed somewhat different breathing pattern.  He was holding air a little longer than usually and then exhaled with some effort. It seemed that acid reflux was at fault. I worried.

But then, there was the Sanctuary. The air got warmer and we could take our jackets off. There was balsamic smell of pines. There was this  silence that became a backdrop to birds songs.  There was the air devoid of any allergens.  We passed only one  group of elderly visitors who stopped to decide which way to go.  There were parts of the forest destroyed by water and wind  from severe storms or hurricanes. There was resigned silence of passing.  There were parts of the forest untouched by strong forces of nature breathing calmly their expectation for a better summer.  There was a view of dunes sticking out of the water. It was a high tide and the boardwalk was submerged.  We took a few minutes to look at the vast, open space of the bay before deciding to turn into Goose Pond Trail.  We walked carrying our jackets through the stillness of the warm afternoon.We didn’t break the tranquility of that walk with any unnecessary sound.

The following week, we asked Robert where he wanted to go for a walk.  We gave him a few options.

“Cape Cod” he said.

So we drove two hours again and again Robert screamed after the meal in Burger King.  And then  there was the Sanctuary.

We chose different trail, and Robert was fine with it. He walked mostly ahead of us, but kept coming back for his dad who stayed behind or waiting for me lagging after both of them.

We stopped many times to look at the Bay and a few times to take pictures. But mostly we  breathed and walked, letting the air infuse our bodies and permeate our souls.

As we found them.