Out into the World

June 24, 2019

I haven’t written for over a month. Yes, we still do our desk, table really, work. Each day Robert

solves Sudoku,

completes a page of picture analogies,

reads a chapter or two from one of the Useborne Young Readers series,

listens to a text read by me from Functional Routines and answers related questions

solves a few math problems currently from Spectrum Algebra 6-8 (they are easier for him than remaining problems from Singapore Math 5A

completes a sheet from Say and Glue – easy but great for an independent work

practices pronunciation with the help of different materials

There is nothing new here. And precisely because there is nothing radically new but just a variation on the old routines it is much easier for me to write about that mundane daily tasks  than about Robert’s other activities. Although each  of them presented me with an opportunity to see Robert in a new light, strangely, I am reluctant to write about them.

Running

On May 19, his current program HMEA organized a great fundraising event with an opportunity to either walk 1km or run 5km.  I signed Robert and Jan (his father) for a walk, knowing that although Robert is a strong walker, he has never run.  Well, sometimes, when he saw runners on his hiking path he suddenly began running after them… for a few yards.  However, Jan decided that he and Robert would rather run.  And so they did.  Well, they run then they walk then they run.  Robert was extremely excited when he started following other runners.  Yes, his steps although quick were very short, yes he flapped his arms and hands.  But he had the biggest smile on his face I have ever seen.

He and Jan finished the race which happened to be more like 7 kilometers long, because of the error in setting the distance.  Well, they were second to last, but still happy and still proud.

The reward for being almost last was that Jan and Robert didn’t have to wait in line for hamburgers and chips. They got them in the tent and then they sat on the grass to eat.

Seating on the grass just like everybody else as negligent as it might look was another life enriching experience for Robert.

 

Horse Show

On June 1, Robert participated in another fundraising event at Pappas Rehabilitation Hospital.   The hospital is also a home to many horses who patiently help children and adult with disabilities enjoy riding.  Robert was anxious the morning before the show.  I was afraid that he wouldn’t be able to participate. But he calmed down and finished his routine that included weaving between cones, carrying rubber duck on a plastic shovel and leading the horse with one hand, taking a ring from one cone and placing it on another, turning the horse 360degrees in a small space, riding in half seats over logs, leading the horse between logs, trotting, riding with hands up and moving the horse backwards white staying between parallel logs.

With this last task Robert had problems.  He moved the horse only two feet and then the horse crossed over the logs.  Robert needed some reminders of how to move from one task to another, and a couple times he got confused.  That is true, but it was much more than he expected of himself and what we, the parents believed he could do.

What surprised me most, however, was that as Robert remained on the horse waiting for other riders to complete the trail, he tried to convince the person who stayed next to him to go back to the center logs. He wanted to correct himself and repeat the task of moving horse backwards while staying between the logs. He must have realized that  he didn’t perform correctly that maneuver and he wanted a chance to do better.

 

Kayaking

From the day Robert sent a letter with a check for NEHSA he wrote himself , he kept repeating “lake” or “kayaks” many times a day. So, on Friday, June 21, we left early to get to Sunapee Lake by 10 AM.  Little did we know that because of rain, the kayaking lessons were canceled.  When we finally got the message we had already made three quarters of hour trip. So I called NEHSA to ask if we still could participate in the afternoon session (the weather was going to improve).  But NEHSA volunteering angels decided that since we were so closed and didn’t mind drizzle, Robert might as well have his lesson. And he did. A few times he got himself into tight corners and needed help and a few times he managed to get out of them on his own. To manage that he had to practice turning the kayak in one direction or going backwards. As usually, after moving toward one end of the lake, Robert wanted to return to the dock.  He had to learn that the lesson was not over yet and that there were other places on the lake to visit  It was hard for him to add new dimension to his kayak excursion and it was a difficult task for Carly to convince Robert to keep exploring.  But she did.  Of course for Robert the wide lake is doesn’t give him any clue as to what direction to take, and thus the only direction he always has in mind is the place from which his kayaking started.  From any other place on the lake Robert rowed most skillfully toward the place where e began and where there was a car that would eventually take him home.

 

 

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For the Record 13

May 17, 2019

One easy Sudoku from http://www.websudoku.com. Still prompting by suggesting Robert to consider some numbers first.

One page (two scenes with six questions each) from Comprehending “Conditional Directions” that Begins with “IF”. We did that before, years ago. At that time I cut each sentence into two parts, placing conditional  fragment on top of the page with two lines going respectively toward “yes” and “no” and followed by either “do this” or “do nothing.  The second part of the sentence was turned up-side -down and Robert was ask to either place it turn it over and follow the direction or throw it into a waste box.  Currently, I read the conditional “IF” part very slowly, wait for Robert to say either “yes” or “no” and then I finish the sentence.  Robert still makes errors from time to time, but much less than he used to.

Two pages from Maps, Charts, Graphs, and Diagrams (Teacher Created Resources) I use these material mostly to review things Robert learned previously.  The only new thing is a need to use IPAD to look for additional information, for instance to find a drawing of a microscope with names of its parts, and then use that information to complete a diagram.

One page from Cut and Paste Logic from Remedia Publication.  We are doing it for the last time, as Robert proficiently uses the clues to put four objects in four spaces. no more copies of the same pages.  I am not sure if that is satisfying to him, but it is certainly rewarding for me.

One page or part of the page from Singapore Math 5A.  By trail and error we began dividing by two digits divisor.  A few division at a time. Mostly guessing work and checking.

Words from old Weber book -repeating all words twice  on each side of the page.

One page of cutting and gluing in appropriate places from Say and Glue for Language and Listening Fun Sheets. This is mostly to practice independent work without me present.

One page with reading on intermediate level from From Functional Routines for Adolescents and Adults Community. We completed reading and answering question for the same workbook a couple month ago. Before there was one sentence related to one picture.  Now there are short paragraphs that describe each of the four pictures.

8-10 cards from What They Are Asking from Fun Decks.  Robert can come up with some ideas on his own but often he grasps for words. I am not checking what he knows already, I am increasing (hopefully) his ability to retrieve words related to each picture.

8-10 cards from Yes and No Fun Deck.  I noticed the same problems I encountered six years ago.  Somehow Robert reads my face and says what I have been thinking, which often is the purposefully wrong answer.  However, yesterday, I noticed strange development.  Robert stopped looking at my face, as if he realized that it might mislead him. he looks down and then gives me correct answer.  I wonder, what would happen tomorrow.

1-3 chapters depending on difficulties and lengths form a book from Usborne Young Reading currently The Midnight Ghosts. Those are simple but very well illustrated books.  We read them to both familiarize Robert with children’s and adults classics but also to improve understanding of the concepts included in the texts

Cursive writing to address Robert tendency to constantly decrease size of the letters to almost looking like a straight line. Usually he copies sentences about his days. I use paper with three lines to help Robert regain his ability to write cursive clearly.  I write sentences related to his days or to overall general but applicable knowledge.  Sometimes he uses the same sentences in writing in his Journal.

 

Mother Versus Wet Towel

May 15, 2019

It was supposed to be a happy event.  Going to the airport to meet mother who was coming home after 9 days in France.  In the past, Robert made many trips to the airport and he was always calm and relatively happy. Jan didn’t predict any problems.

So, after Robert finished his swimming lesson, he and his father drove to the airport. But as soon as Jan turned north instead of south on 95 interstate highway, Robert began protesting, “Home, home, home.” No, he didn’t want to go to the airport, he wanted to go home.  He needed to go home. He couldn’t go to the airport.  Not with wet towel, soaking swimming pants, and damp swimming cap. Those things should not travel to the airport.  They should be brought home.  “Home, home, home”, Robert tried to persuade his father.  Since, he didn’t have proper words, he replaced them with dramatic screams of protest. The most efficient way tfor Robert o express his uttermost anxiety was to keep slapping quickly his cheeks and scratching his nose with fast movements of his fingers. Yes, of course! Robert loves his mother and he missed her too, but the personal feeling are nothing when compared with the broken order of things. If the simple rules governing Robert’s world are broken then the universe might collapse.  Robert didn’t want that to happen so he kept screaming and pulling Jan toward the car. “Home, home.”  To avoid continuing display of robert’s determination, Jan  decided to wait in the car as I was snailing through the airport security.  And thus they waited.  Jan patiently repeating that they wait, that she would arrive soon, that they will all go home and bring home the towel as well.

When he finally saw me, Robert calmed down instantly. Maybe because he was happy to see me at last.  Or maybe because now, nothing would prevent the towel from reaching home.

In the past, many times we experienced similar issues.  When directly after horseback lesson, Robert and his father drove to the beach, Robert protested vehemently. “Home, home, home”  he kept demanding all the way to the beach.  “Home, home, home”  he insisted while walking along the beach. “Home, home, home” he kept perseverating in his favorite restaurant. Similar thing happened when after kayaking lesson, he, his sister, and his dad went camping instead of returning home first. To address those issues we kept giving Robert prior notices of expected changes in familiar routines. And when I say “notice” I mean repeating the same thing many times, writing a schedule and reading it.  As a result, Robert is now content when we go to the beach immediately after riding lesson.

I don’t doubt that Robert loves me and wanted me to be home.  Just like I know that Robert loves Horseneck Beach and Bay Restaurant. But when order of things that Robert  rigidly established for himself is being undermined, he protests in  despair.

For the Record 12

April 19, 2019

I am almost afraid to admit that, but during the last few months, Robert became much calmer and happier.  I am afraid, because I still remember recurring periods of time of Robert being in distress. His screaming, his hitting his own face. I am afraid because  I still don’t know why that was happening and I don’t know why now, he seems so different with screaming and hitting his face gone.  Gone are red spots on his face where series after series of quick seemingly light patting broke the skin.  But my memory of those moments remains and I am still concerned.

With the arrival of spring, our trips to Sunapee Mountain were replaced by equally long excursions to Wellfleet Wildlife Sanctuary on Cape Cod. The mysterious recurrence of high and low tides was not lost on Robert.  Walking silently with his father, he contemplated the vast area of either water covering wavy grasses of the marshes or equally wide extent of the suddenly bare bottom of the bay.

Besides that change his weekly activities remain the same swimming, horse back riding, trips with Tim to Five Guys for hamburger dinner, and everyday study with me.

Each day this week our work included:

1. Unit from No-Glamour Sentence Structure. It is the fourth or fifth time we used this book as we return to it every year or two.

2.A page from Comprehending”Conditional Directions” that Begin with “IF”. In the past I used a simplified drawing of two columns with “yes” and “no” as their headings.  I cut each sentence in two parts and ask Robert to place the part starting with “IF” in one of the columns.  Placing in “YES” required Robert to put in the same column the second part.  Placing in “NO’ demanded that Robert throws the second part to the waste basket and do nothing. This time around I stopped after reading the first part of the sentence and wait for Robert to say, “yes” or “no” and either follow the direction expressed in the second part or do not.  We still have a lot of problems with this approach so I need to evaluate it and possibly change it.

3. Two pages from Maps, Charts, Graphs & Diagrams. This gives Robert an opportunity to review topics he has learned before either through five levels of Daily Geography Practice,  or by making or reading bar, line, and circle graphs as they were introduced in many math curricula.  As for diagrams, Robert became familiar with them by learning science topics such as body systems, layers of rain forest or solar system.

4. A page from Say and Glue for Language and Listening. However, we are using it for independent work.  Robert did something similar years ago, but I had to assist him if not by giving clues, then by just sitting next to him. Now, I leave him alone with the task.

5. A page from Work booklet of Functional Routines. But this time we go through intermediate level as we went through basic one a few month ago.

6. Practice of  pronunciation  with a page from Weber Giant Book and (this is new)  with  cards from Syllable Drilling. I read a few cards an ask Robert to repeat and then Robert reads a few cards by dividing into syllables and I repeat after him.

7. A chapter from one of the books from Usborne Young Reading. Currently we are on chapter 4th of The Story of Flying.

We continue to shop with Robert doing all cashier work at self-serve cash register. Robert continues to do laundry independently, although sometimes, when one sock is left out of the pile, he turns the washing machine again, just for this one sock.  He does vacuum rug in the living room, bt is not very eager to do so.

Oh well,.

 

Bittersweet Skiing

March 26 – April 9, 2019

I remember Robert, not even three years old at that time, wearing a new, still shining winter suit, standing on the brand new skis, and holding to the tree a few feet from the parking lot and a couple of feet above it.   Jan placed him there and hoped that Robert wouldn’t dare to move  during those few minutes Jan needed to attach skis to Amanda’s boots.  Robert shouldn’t dare to move, as it was the first time he was going skiing. The very first time he was standing in skis on the snow. He shouldn’t.  But he did dare. He went down to another tree and then to another.

I remember Robert wiggling under Jan’s arm as they waited for the ski lift up the Blue Hill Mountain.  I could still hear his loud protests from the distance of 50 or 100 feet.  But as I trudged through the snow to persuade Jan to give up on teaching Robert skiing, they  were already moving up with Robert still expressing his displeasure.

But then, he was hooked. The very next time, he waited silently in line to the lift and moved his little legs eagerly following the skier in front of him.

I remember how easy it was to recognize Jan and Robert going down the Nashoba mountain.  They looked like upside down letter Y with Robert’s head glued to Jan’s leg while Robert’s skis were a feet away from Jan’s.

I remember Robert’s waist  tied to a red leash held  by his father as he moved down the Wachusetts Mountain.   Robert liked being first and going straight down. Faster and faster.

It has to be said that Jan had never given Robert any instruction, They just skied together. It also need to be said, that I don’t remember Robert ever falling, although I was told that it did happen once.

During those early years, Robert was not afraid to go fast with his skies parallel to each other. The slopes were not too steep and the distances were shorter. Robert didn’t feel any need to listen to anybody. Yet somehow he mustered instinctively, I believe, the skill of stopping abruptly.  I remember him going down toward me and the wooden fence behind me.  I was terrified that he would hit himself.  I spread my arms wide attempting to catch him, but a few steps from me, Robert made 180 degree turn and stopped.

The first time Robert was ready to accept skiing instruction was when Jan, Amanda, and Robert ventured by mistake on the steep slope on Cannon Mountain. Robert spread his skis widely and waited to be rescued or given a manageable  advice. Then slowly in wide wedge position he moved down to where his father and sister were waiting.  In this position he skied all the way to the bottom.

Sadly, from that point on, he decided that this is the only way to go.

Robert, Jan and Amanda skied on Snow  and Killington Mountain in Vermont, on Cannon Mountain, Loon Mountain and in Water Valley in New Hampshire.  But most often Robert skied on Sunapee Mountain with NESHA instructors.

This year he skied with them 13 full days.  He followed them turning left and right, bouncing up and down on all ski terrain.  He smiled and smiled and smiled and smiled….

He followed Eric, Deirdre, Kathy and Kate.  He listened to Barbara and Bill.  He was turning from one NEHSA volunteer to another as they attempted to work on reducing the wedge and become more attentive and flexible.  During this 13 times he skied with more than 20 volunteer instructors. And Jan followed them.  Often,  he couldn’t keep up, he was more and more behind.

Sometimes the instructors specially made Robert turn from one instructor to another on the opposite side of the trail to give Jan time to catch up.

Once, Jan was so far behind that, after waiting for a while, Robert and his instructors went on the lift without him.  Jan was a little sad but also extremely proud of Robert and …himself.

 

Tangible Argument

March 22, 2019

The last few weeks were pretty calm. Robert has NOT been hitting his face and ha has been NOT screaming. I don’t know why he stopped but I didn’t know why he was doing that in the first place. I am still not sure if there was an underlying medical condition which resulted in severe pain  or if he was “just” angry about something. It is possible that an underlying medical condition , like itching from his eczema made him more irritable and impatient. The fact that he couldn’t reveal the reason for his distress made his anguish even more severe.

Because I don’t know the reasons, I am still afraid that the nightmare (because that was a nightmare) of his anguish might return unexpectedly.

Still, we all enjoyed those few peaceful weeks.

The drawer

A few days ago, as Robert was putting away laundry, I heard a sad cooing coming from his room. I peaked in and saw Robert sitting on the floor and trying to do two things: place all of his shirts in a drawer and simultaneously reattach its falling bottom. It was a daunting task. There were too many shirts and the drawer was too old to withstand their pressure.  Confronted with the impossibility of solving this conundrum, Robert responded with gentle, nonetheless, heartrending cooing.

So I said, what I had been saying before many times.  “Robert, there are too many shirts.  We have to put summer shirts with short sleeves in the box in the closet. ” I took one such shirt and placed it in the box.  I prepared myself for a strong resistance expecting Robert to take the shirt back.  After all that was what he did many times in the past. He wanted to keep all his shirts together no matter what was the season of the year and no matter how how full the drawer was .He managed to always put this shirts back even when I hid them from him.  But not this time.  He didn’t remove the shirt from the box but to the contrary he kept taking out one shirt after another and kept passing to me all short sleeved ones.  He returned the long-sleeved shirts back to the drawer.  Then he put the bottom of the drawer back in its grooves. Finally, he closed the drawer .

It was a small thing but  it left me speechless. So many times I tried to achieve the same results and failed every time.  But then I used only words to convince Robert.  This time the drawer presented Robert with a strong, tangible argument and he got it.

The Mystery of the Disappearing T-shirt

March 17, 2019

I don’t know how many  white, short-sleeved T-shirt Robert has and how many his father does. I know that Robert has plenty, When all of them are clean, it is very hard to close the drawer were they are kept. I know also that Robert’s dad wears crew neck style T-shirts while Robert prefers v-neck ones. Robert knows that too and properly places one kind in the chest in his bedroom and the other kind in his dad’s dresser.

Last Friday, however, the peaceful activity of folding laundry was interrupted by Robert’s sudden agitation. “White shirt, white shirt”, he kept repeating as he was checking drawers in both bedrooms. “White shirt, white shirt”  He repeated louder as he went to the hamper with dirty clothes and examined them too.  He didn’t find what he was looking for. He rechecked the dryer from which he had took laundry just few minutes before.  Nothing. There was one more place when the shirt or what might be left of the shirt could be.  In the bathroom under the sink where we keep torn articles of garment to use them later for cleaning. Robert doesn’t mind that old clothes can be recycled in this way.  He also accepts the fact that clothes he overgrew can be donated, as long as he donates them himself.  What he doesn’t accept is that clothes disappear. He became more and more anxious and loud.  Hoping to distract him, Jan decided to take Robert to the store.  Well, that didn’t work as Robert couldn’t forget about the white T-shirt that wasn’t  anymore. So in a store and in a car, Robert’s despair only grew. “white shirt, white shirt, white shirt, white shirt…..”

Upon returning home, he resumed his search.  He looked under the bed covers in both bedrooms and under the pillow,  He rechecked the old places. Only then, I suggested that the shirt might be hidden in the back of a new laundry machine. Robert ran to check that possibility.  Since he also stopped repeating “White shirt, white shirt” , I concluded that he found what he looked for. I don’t know if that was crew neck T-Shirt of V-Shaped T-shirt. I was glad that Robert solved the m ystery of the disappearing shirt and relaxed. However, another mystery keeps bothering me.  How did he know that one of those identical (at least identical for me)  shirts was missing.  No, he didn’t count them.  He was checking each shirt separately, unfolding it, spreading in front of his eyes and examining carefully.  He not only knew that one shirt was missing, he knew exactly WHICH shirt that was.

For the Record 11

March 3, 2019

Another week on an emotional roller coaster.

Robert was in such a distress  previous Saturday and Sunday that I took him to see his doctor on Monday. He was hitting his face with the ends of his fingers to the point he cut through the skin, even though we cut his nails. Surprisingly, Robert waited very patiently in the waiting room for almost 30 minutes.  But a few times when doctor was talking to me, or him , he started again hitting his face.  He had a very bad day in his program on Tuesday, as he didn’t want to eat his lunch asking instead for McDonald’s.  At home he was fine, studied with me then he watched Netflix on his IPAD. Suddenly he got up and started screaming and hitting his face again. The lesions on his face got covered with blood.  I didn’t know what to do.  Should I call 911, because something was terribly wrong.  I knew, he wouldn’t go to urgent care with me. Should I call an ambulance?   But if he would act like that in the hospital, he would be restrained and the effects of restraining could be horrid. I didn’t even try to hold his face in my hands to prevent him from striking himself, because as he did in the past he would walk backwards to free himself from my hug and hit himself even more. So, I did the only thing I could do.  I turned away, pretended not to see it, and did nothing.

Few seconds later,  he calmed down. As if something inside him was turned off. He became calm and happy.  In his program and at home.  The only incident happened today, when he was told to ride a larger horse than he usually does.  He did some screaming before getting on the horse, but he was fine as soon as he started riding.

I don’t know why he was calm and relatively happy the last five days, just like I don’t know why he was in such discomfort – either physical or emotional – before.

I just don’t know.

On Friday, we went to the bank to deposit his check.  Later we baked cookies together. On Saturday, he went to the swimming pool with his dad.  Later they ate lunch in Applebee’s. It was his 27th birthday after all.

Yesterday, we finished reading rather  It Does Matter from Carter High Chronicle series.  Today, after we studied for an hour,  but before riding in his notebook, Robert said, “Read, read” , went to shelf and pulled out another book. This time it was from Usborne Reading Programme  Twelfth Night.  

March 8, 2019

We had a very pleasant Friday.  Yesterday, we wrote the schedule for today.  Studying, cleaning bathrooms, shopping, baking cookies and a trip to Science Museum. Well, we didn’t clean bathrooms, as I needed to make time-consuming calls to insurance company.

As for study:  pronunciation – today words beginning with “Z” sound;  finding the value of a simple  algebraic expression for a given number; reading about trip to movie theater from  Functional Routines and about acne from Autism and PDD Adolescent Social Skills Lessons. Robert completed first part of the Moving West History Packets. He read, answered questions and  pictures.  We talked about time line that he had completed last week. He solved Sudoku with little help from me. He is able to enter a few numbers at a time without my help and he seems to enjoy it.

Store: we went mainly to buy chocolate chips for the cookies we planned to bake.  However, we bought many other things including parsley, scallion and dill.  At the self register, Robert first scanned all the items that had a bar code while I was packing them. When he picked parsley, he hesitated.  I showed him the number and he entered it. He found by himself numbers on scallion and on dill.  It was much harder for him to look for cabbage on the screen not because of his difficulties with alphabet, but because of lack of familiarity with this vegetable.

He paid using his ATM card.

Baking.  He assemble all the items.  He needed prompt to turn on the oven and do all the necessary steps.  But he did them with the exception of placing the dough on the  baking pan. well, the dough was very sticky and didn’t want to drop from the spoon.

Museum. We arrived later than I anticipated because of traffic hour.  However, there was enough time to buy fries and two pieces of chicken fingers and eat them.  I was s lightly tense afraid that Robert would start telling me what he wants during the movie, but he was very quiet.  It helped that the movie Cuba was entertaining – with ballet, beautiful building, music and coral reefs.

Robert’s dad, Jan, met us after the movie and we drove home together.  Except, Robert kept saying, “Car, car, car”.  Only then we realized that Jan left the car at the train station on his way to work.  We explained to Robert what had happened and  drove to the station to retrieve Jan’s car.

 

 

My Not Everyday Joys

February 22, 2019

Goggles

The weather was cold and windy. The ski instructor gave Robert goggles to protect his eyes. Robert hesitated but then he put them on.  He has never done that before.  His instructors and we, his parents, tried to persuade him many times to wear goggles, but Robert presented strong resistance. Now, he put them on after a few seconds of hesitation.  It was surprisingly easy to convince him to wear the goggles. He probably deduced that since he forgot his regular glasses, it was only natural that he should wear goggles as a replacement.  The fact, that since that day, he purposefully kept his glasses home while going skiing supports this implication.

Doggie Bag

Robert always protested taking any left over food from the restaurant. When we suggested that he didn’t have to finish his dish since he was obviously full, he responded by eating even faster and placing large pieces of his food in his mouth. Not that he WANTED to eat more, but he COULDN’T leave anything on a plate.  Moreover, he protested whenever either his father or I wanted to take our food home.  We developed a system of avoiding Robert’s loud, vehement protests.  Robert and his father would leave restaurant first while I would stay longer to ask for box or boxes and pack the leftovers.

This winter, however, I finally dealt with the problem. As we were driving to the restaurant I kept telling Robert that he doesn’t have to eat everything. That he will eat only part of the ordered food in the restaurant and the other part we will take home, so he could eat it later when he gets hungry again.  I repeated the same thing when we were waiting for our dishes. Robert not only agreed but before leaving, placed his own leftovers in a box and took it to the car.

Dentist Visit

I picked up Robert from his program and we drove straight to the dentist for cleaning and check up. The dental hygienist came to the waiting room to call on Robert.  Almost automatically, I moved too.  The hygienist asked if I wanted to accompany Robert.  But she asked as if my presence was not obvious. And it hit me.  It shouldn’t be obvious because Robert could manage without me.  My presence only clouded the interaction between the hygienist and Robert.  Robert would expect me to give him directions and the hygienist would also expect my support if Robert didn’t follow immediately her request.  Thus instead of her repeating the words to make her demand clearer, she would turn to me to do the same. That is confusing to everybody. So I chose to remain in the waiting room while Robert had his teeth cleaned. It felt great!

Park in Winter

Robert wanted to go for a walk so we drove to Stony Brook. As soon as we got to the place where the trail begins, I realized that it was indeed winter. The trail was covered with all forms of wintery water.  There was slushy snow, there was snow covered with thin layer of ice, there was fluffy snow, and there was uneven ice that probably melted and froze again a few times.  I wasn’t ready for walk on such surface as I do have a tendency to fall even on flat surfaces. But Robert set his mind on walk and walk he did. I followed him with uneasy steps. A few times I called on Robert to help me conquer a few slippery spots. He always returned and led me for a few steps, then he went ahead again.  I called him again and again and again. Well, I really didn’t need his help, but I wanted him to understand that this walk although easy for him might be challenging to me. That would also make it easier for him to change his walking habits. Nonetheless, I also wanted him to be prepared for a variation to his walking routine.   “Robert, we would walk only to the water and we would come back the same way.  We would not go around.”  I kept repeating afraid that Robert, who always insist on doing things the same way, would have a hard time accepting changes to his walking routine.

Well, he did hesitated and made a few steps farther, but then he turned back and walked with me to the parking lot.

Where Do the Screams Spring From

February 14, 2019

I realized that I could write about Robert’s screams only because during the last few weeks he was much calmer, happy really, than in the previous few months. So, it was easier to hypothesize about the causes of the cluster of behaviors that included loud noises, slapping his own face, and, sometimes, stumping his feet. The starting and the finish points were clear and easy to define. 

Very often, the screams sprout from confusion.

It was no later than 7 PM. I was not feeling good.  From my bedroom I called to Robert to bring me a bottle of water.  Robert was sitting on the sofa and seemed reluctant to move.  I asked again, and then I dozed off.  A few minutes later I woke up and asked Robert again to bring the bottle of water. Robert didn’t move.  But he produced a few short screams, the sounds of impatient irritation.  Only then, I noticed that the bottle of water was already on the nightstand next to my bed. Robert brought it when I was sleeping. Thus when I asked him for water that he had already fetched, he became confused.  He didn’t have tools to address that confusion. He couldn’t say, “I brought the water already”  or something similar. Even though he knew all the necessary words, he couldn’t recall them and string them together to respond properly. So he replaced words with the sounds of frustration. The screams subsided when  I said , “Robert, you brought the water already.  Thank you, thank you!”

They spring from pain.

He screams, stumps his feet, and hits his cheeks.  His eyes are red from desperation and powerlessness. I don’t know how to help him. He cannot tell what hurts.  I suspect that when he is in pain, he feels that he did something wrong and doesn’t want to admit it. I suspect that for him the pain is something that attacks him from within and thus he feels guilty that he brought it upon himself. I can only  guess that his pain  is related to his digestive system, as his belly  feels hard and bloated.  He tries to calm down, but cannot really.  He holds his breath as if holding air would alleviate his discomfort. Then he exhales in a heavy, artificial way. After a few minutes, the screams return. We are still baffled about origins of pain.  One doctor stated that he had spastic muscles in his face and neck. Sometimes I suspect it is related to asthma. I suspect it is because of gases. I suspect his eczema flare ups drive him mad. I suspect everything cannot confirm anything. So, I try to massage his cheeks, even though Robert moves backwards from me and keeps hitting his them. I give him additional pill of Zyrtek in case it is allergy.  I give him inhaler in case it is asthma related.  I give him Metamucil crackers in case of gases.  And I give him Advil if it is something else.  He looks at me as if he couldn’t understand what is happening to him and why I don’t help him. When he is in pain his eyes scream too.

They erupt from mixture of disappointments.

Last Friday, Robert had pretty good morning.  We went together to his physician to pick up permission slip. On the way home, we stopped in two supermarkets.  We did some learning together. Robert’s horseback riding lesson was uneventful.  However, after we came home, Robert began screaming and hitting his face. Everything was going wrong. He felt cheated and disappointed.  I didn’t buy him buttermilk sandwich as I often do after the riding. (Well, he asked for taco which we did buy.) He learned that Tim, who usually comes on Friday afternoons, won’t come that day.  He also learned that there wouldn’t be any skiing that weekend. “Ski, ski, ski” he kept repeating. “We will go skiing next week”, I told him and pointed to the date on the calendar.  Robert took a pencil and wrote “ski” on the calendar space for the following Saturday. “Tim, Tim”, he kept repeating.  “Tim will come next Friday”  That was not the answer Robert waited for.  He screamed again.  Finally , he asked for coke.  But there was none at home that day. So, Robert screamed louder.

Robert was clearly angry. His emotions formed a volcano from which shouts erupted,  But then,I am not sure, if the pain was not not an additional factor.  It might be that he had allergy to something as the back of his neck got very red. And his breathing seemed different.   It is possible, that the salsa he used with his taco irritated his stomach.

So it could be the unidentified pain attacking him from within. It could be.

But then, when Jan told him, that he that he would go skiing after all, Robert became his happy, charming self again.  So, maybe he didn’t feel any pain after all.

And of course the screams are Robert’s way to tell us something when the words – the tools needed for the construction of tunnels of communication – don’t.

All Robert’s screams are caused by his  lack of ability to communicate verbally reasons for his distress. Precisely because of that lack it is important to find the causes. Different roots call for different approaches. If I could understand the origin of Robert’s anguish I could not only offer a solution – for instance take Robert to a doctor- but also teach him the proper ways of expressing himself.  I could teach him and practice with him the simplest sentences or phrases, “Stomach hurts” ,”I am angry” . “I did it already” which  he could use in lieu of screaming.