My Not Everyday Joys

February 22, 2019


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.





For the record 10

That’s not writing. That’s just typing” Said Capote about Kerouac. I could paraphrase his words, “That’s not writing.  That’s recording.”  Writing  expects that the author would search for the meaning, or at least the structure,  while recording leaves the searches and discoveries to the hypothetical reader.  Person doing the recording might hope that the reader would find some form or sense in the pile of words and details.

In this context, recording is a sign of being overwhelmed and/or lost.

Writing to recording is like creating a structure to gathering building materials with hope that someone else would do the work.

Recording seems easier than writing but it also more treacherous as it might lead to nowhere.

Week without studying

I had an unpleasant cold.  I didn’t want to breathe my germs on Robert so for 5 days we didn’t study together.  Each day, however, I dropped pieces of a puzzle on the table and each day Robert engaged himself in assembling them.  He wasn’t applying any special method and yet each day, he managed to put together at least half of a puzzle.  Three quarters of the frame and a couple of central parts of the picture.  Then he had enough and for a few minutes he  watched a movie on Netflix. However, before the evening bath, he managed to complete the puzzle.

I also left on the table simple tasks, he could complete on his own such as, counting perimeters of different polygons and  area of different rectangles. To my surprise, he did better than I expected remembering how hooked he was on my presence.  Most importantly he did it without waiting for my support.

Robert;s dad built with Robert a corner shelf.  Over all, to my relief, Robert didn’t fall apart without our evening study sessions.

At Sunapee

Robert continued skiing with NEHSA at Sunapee.  I was told that he did better with the narrowing a gap between his skis. That was a big thing , as Robert is used to skiing with legs either  far apart or father apart.     More important, however, was the fact that he didn’t protest, as he had done years ago, when his instructor wanted him to wear goggles to protect his eyes.  It was also important that he  flexibly  switched from skiing on South Peak to North Peak and vice versa.

Watching the Road

We were driving from Doctor’s appointment to Robert’s program.  Instead of taking exit 12, I took the exit 13. As soon as I directed our car toward that exit, Robert softly but clearly reminded me, “HMEA, HMEA” . It was too late and I had to leave the highway and reenter it after few minutes.  Robert learned his lesson.  Just as I was slightly slowing before the exit 14 A, Robert reminded me. “HMEA, HMEA” so I proceeded to exit 14B.  When a few months ago, I slowed down before the turn we usually take while going to Stop and  Shop,  Robert managed to corrected \ me, “Dentist, dentist.” and I kept straight toward the dentist office.   He doesn’t panic, he doesn’t scream. He just calmly and warmly reminds me where we are going.