Off the Beaten Track

April 26, 2018

We learn and relearn the same topics.  We follow the ideas as they slowly branch into more complicated concepts. From adding natural numbers to operations on fractions.  From naming visible body parts to labeling internal organs and grasping their relations to each other. We solve similar problems requiring similar techniques.  We return to simpler explanations if the  more intricate ones make our understanding too murky. We move accordingly to the given curriculum and in step with Robert’s and my ability to learn.

To make learning more complete, more rounded I utilize different curricula,  They approach the same concepts from a slightly different angles. But even that leaves a lot of uncharted terrain and the feeling of inadequacy of our learning.  I sense a void in Robert’s perception of the world.

No teacher can teach his students everything they need to know to be prepared for all life circumstances.  The best the teacher can do is to equip students with tools that would allow them to continue to learn on their own.  That is what my teaching lacks. Robert still doesn’t have tools to learn skills on his own.

I have to correct that.  Robert does learn on his own.  But his learning is a part of his vision of the world which only rarely intersects with the way we, relatively typical persons, understand its working. This dissonance makes learning and teaching harder.  I suspect that Robert independently, through observations, comes to many conclusions and utilizes them.  He, however, treats everything he learns from me as a sort of unusable ballast.  The knowledge he gains doesn’t seem applicable to anything in his day-to-day functioning.

It surprised me that although Robert can do many math operations, he was unable to pay $3.50 for his favorite watermelon slash. I believe that dealing with another person might be a factor causing his confusion, but still, what is the purpose of learning if it cannot be applied in such simple situations.

I  wonder if what Robert learns with me is reduced to algorithms, routine steps that have to be followed in a proper order.  I wonder if by studying with him everyday,  I didn’t increase his dependency attaching him even more strongly to the same path leading him nowhere.

It is, however, more uncomfortable for me than it is for Robert to get off the beaten track.

I noticed how uneasy I felt when I introduced to Robert Skill Sharpeners Critical Thinking on the grade 2 level. The workbook presented relatively simple problems.  Many of them Robert could do independently. But there were others that required switching from one mode of thinking to another approach.  The approach, I have to add,  that Robert had never tried before. I didn’t exposed him to them because somehow they fell outside the perimeters of  the curricula we used.  Moreover, from page to page the activities kept changing demanding flexible adjusting to the terms and concepts.

I had difficulties figuring out how to assist Robert.  At moments like that I realize how little insight I have into what Robert knows and HOW he knows it.  I don’t know to which facts I could relate the new information.  I don’t know which skills I should evoke to help Robert discover similarity with the new tasks.

It was precisely because of the difficulties I had that I decide to continue with the next level of Critical Thinking knowing that the hardest to teach concepts are the ones Robert needs most to learn.

Finding a Cause while Walking on a Shaky Ground

April 24, 2018

More than a year ago, Pam who was Robert’s skill instructor at that time, noticed a behavior which struck her as very unusual.  It certainly didn’t belong to the already wide range of Robert’s behaviors.  Pam and Robert were in the Applebee’s Restaurant.  Robert was walking from the restroom toward their table when suddenly he froze as if something internal restrained him. He put one leg forward and immediately pulled it back. He started patting (slapping very quickly in short movements) his cheeks and/or ears.  He didn’t react to Pam encouraging him to come to the table.

It probably didn’t last long, but it lasted long enough for Pam to worry.

Since that time, I have noticed the same pattern of behaviors many times  during our outings.  It happened once as we  wait in line for Robert crispy chicken sandwich at McDonald. It happened  after Robert finished his sandwich and disposed of the paper box and cup.  He froze next to the trashcan and then at the door as he was leaving.  Over all in the last month he froze three times after eating his sandwich in McDonald.  Twice with me and once with Tim. He froze one Friday at the Science Museum, but not the other Friday while he visited the same place.

So what could be a factor if not the cause.

The first Friday we arrived before noon.  The Museum was packed with middle and high school students on field trips.  There were many, MANY parents with little children.  Some babies in strollers and many more toddlers on the loose.  The parents were moving in relatively straight lines, but the children oscillated in their proximity with wide range of amplitudes and frequencies. It was not easy to move safely, but we managed to order food and find a table without bumping into anybody.  We ordered food because I thought that chicken fingers and fries would let Robert  settle and adjust to the surrounding chaos. I am not sure if that was the case.  After lunch we went to see temporary exhibition Mirror Maze. I manged to get lost twice in short time and return to the entrance but the third time Robert took over and somehow led us to the exit.  Then, as we got into blue wing, Robert froze again.  He made some upsetting noises expressing his discomfort.  Ha patted his cheeks/ears.  With lots of nagging he moved a few steps and then he stopped.  By the time we reached the car, the same behavior happened three or four times.  Yes, the little children crossed his path many times while continuing weaving around their parents and siblings. yes, there were times, when we had to stop suddenly not to bump into innocent morsels of energy.  Yes, it was overwhelming.  So maybe Robert’s freezing had anything to do with over stimulation?  But then many times, Robert was in places equally chaotic including the same Museum.  Moreover, on the way home, I heard Robert held his breath in a way I associated with some sort of physical discomfort, some sort of pain.  I saw in the car mirror that he had some symptoms of acid reflux. I don’t know if the stomach discomfort was first and made him more susceptible to over-stimulation  or if over stimulation somehow expressed itself as acid reflux.

The following week, we went to the Science Museum again. But this time we arrived by 7PM knowing that on Fridays, Museum is open until 9PM.  At 7 PM museum was a peaceful place.  No field trips.  Babies and toddlers probably already sleeping. Teenagers on dates happening somewhere else.  The cafeteria already closed.  Calm walk to the Mirror Maze.  Robert wanted to show that exhibition to his dad.  He made sure that dad didn’t get lost.  Then we went to see 4D movie about sharks.  We were the only viewers in the room.  We stopped at one more place so jan could demonstrate to Robert something about simple machines and then we came home.

This Sunday, Robert and I went to Roger Williams Park and Zoo.  It was a beautiful day. One of the very few gorgeous days in this very rainy and snowy April.  So the Zoo was packed.  It took a few trips around all four parking lot before we found a place. And the Zoo was as crowded as the parking lots suggested it would be.  Parents with children outing with other parents with children. We glanced at zebras, wildebeests, and watusi.  We stopped a little longer to admire cheetahs climbing a boulder.  Then we entered a temporary South American Pavilion.  Quick glance at sleeping sloth a few monkeys and flamingos.  As we were leaving Robert froze again.  Yes, there was a commotion.  At least two families were leaving at the same time and they seem to wait for each other.  But there was also a slightly different smell which could affect Robert’s breathing.  whatever the reason, Robert made noises alerting everybody to his discomfort.  He moved a few steps and then froze again patting his ears/cheeks.   I told him that if he continues screaming e have to go home.  I asked him if he wants to stay or go home.  “Stay, stay” he responded and relatively calmly followed me on a path around wetlands.  From that time on, we had a very pleasant time with little confusion around elephant pavilion.  We were able to see well two moon bears and two snow leopards resting on cliff.  Robert asked for fries but didn’t insisted when I told him that we would eat at home.  He found a stand with watermelon slash and pretzels. To my surprise he asked for both.  It was the first time he wanted to eat pretzel.  The zoo was still crowded, the children were still running in hard to follow curves, but Robert walk calmly glancing at other animals and eating his pretzel.

I don’t know what conclusion I could make from this hardly functional analysis of behavior. What factors play the role? Food?  which food?  Over stimulation?  But on which circumstances? Quality of air but while in South American pavilion and not in the Australian one?   Something else…


Learning from Experience

April 20, 2018

Jean called and I panicked. The simple nuisance, the car that won’t start, became a huge issue. Jean was with Robert. They were supposed to drive to the subway station and take the Red Line to Park Street in Boston. That was what Robert expected. When Robert expects something, he doesn’t accept changes easily. He will  insist on following the plan despite the fact that it might be impossible to do so. Nonetheless, there was nothing else to do but to take jumper cables and drive to meet them.

Jean and I persuaded Robert to wait in the car for Jean to load the battery in his car.  Yes, Robert was curious and would rather watch closely what was happening, but our argument that it would be safer for him to be inside convinced him. As Jean removed jumper cables from both cars, Robert, who was watching intently the whole process through the window, left the car, took cables from Jean and put them in the trunk of our car. Now, he was ready to go with Jean. As he aimed for Jean’s car, I told Robert that the plans changed and he had to come home with me, because Jean’s car  was unreliable and had to be checked by mechanic.  Robert responded with a very loud, “No, no, no!”

My heart sunk. I considered his protests to be the presage of a long battle of wills that would include persuasions, bribery, flattery, promises, and threats of unspecified consequences.

But his, “No, no, no”, although very loud, was the last sign of his opposition. When first Jean, then I, reiterated the same argument about mechanic, Robert opened the door to Jean’s SUV  not to get in, but to retrieve his stuff from the back seat.  Then, with slight hesitation, he got in our car.

To my surprise, I felt happier than I would feel if there were no need for jumper cables and change of plans. I wasn’t only relieved that we avoided the battle. I was thrilled that Robert demonstrated ability to adjust to unexpected situation by accepting less preferred outcome.

He did so, however, after learning from the past experiences what the car trouble can mean.

Two hours long wait for the AAA, the towing, and leaving the car at the mechanic. That happened years ago when I put a wrong key in the ignition and the key got stuck. It was a traumatic experience for Robert. To prevent it from happening again Robert never let me keep both car keys on the same key chain.

One hour  long wait for AAA to pull us from the deep snow on the side of the road and leaving the car at the mechanic for more than a week. And of course, waiting for AAA to jump-start the car, after Jan left the lights on.

Clearly, Robert had plenty of  opportunities to learn what the car trouble might mean for the drivers and passengers. He didn’t like to change his plans, but he deduced that with car trouble it would be best to return home.

By the way, thank you AAA.

The Warmth of a Snowy Day

I don’t remember exactly how much snow was expected for that Tuesday in March. It had to be something between 18 inches and 2 feet.  Enough to have us concerned.  We don’t have a snow blower and we don’t know anybody with a snow plow. Moreover, our town cleans diligently our short street.  Unfortunately, much of the snow taken from the street is pushed into our driveway forming a wall made of either heavy wet snow, or huge chunks of frozen snow. I don’t know where those huge chunks of snow come from, but they end up in our driveway somehow.

We decided to shovel the snow every couple of hours as it was keeping accumulating.  And we, the parents, wanted Robert to participate.  After some convincing,Robert joined us reluctantly.   Since in the past,  I noticed  that he often didn’t know where to start and how to proceed, I shoveled the snow around a perimeter of a small rectangle.  That made it clear to Robert where he should start and where is the end.  However, when he finished removing snow from that part of the driveway, I was ready with another rectangle and then one more.  This way, we were done in 30 minutes. Two hours later we had to shoveled again.  But Robert seemed exhausted and very sleepy, so we let him rest.  However, when we decided, two hours later,  to remove another layer of snow. we encouraged Robert to help us. He joined us and without hesitation removed the snow from an assigned to him rectangle.  It had a larger area than the previous one so when Robert finished, I told him that he could go home and rest. But he didn’t go. He held his shovel and waited. He seemed not sure what to do. So I asked.

-Robert, do you want to help or go home?-

-Help, help.- he answered eagerly.  So I assigned another part of a driveway to clean and then another and another until the snow was gone.

By the evening another 3-4 inches tall layer accumulated.  This time we didn’t want to involve Robert. After all, he worked hard enough before. But as soon as  Jan and I began shoveling, Robert called to us through the closed window of his bedroom, “Help, help”.

He wanted to work with us again.  And so we let him.


That Feeling of Failing

April 17, 2018

It seems that managing Robert’s life became very difficult lately.  As I age and my health seems to slow me down, my goals for Robert seem much harder to reach.  Even worse, too often I feel lost, confused and exhausted.  There are small things to manage like his bank account or SNAP program and there are very important things such as  his behaviors and his medical needs.

  1. I filled incorrectly Robert’s renewal SNAP application and his benefits decreased significantly. Yes, I corrected that issue, but not before a few days of postponing and a couple of hours waiting on the phone for a person to talk to.
  2. The bank where I have a Rep Payee account charged this account $3 a month for paper statements and then it took $10 for not making one operation on this account.  Both things are my fault.  I was sure that when I opened the account that I asked for on-line only statements, but it is possible that I misunderstood something.  I was sure that making two operations a month would be done almost automatically as there is a direct deposit  coming every month. One month, however,  it came on the first of the month and on the 30 of the same month, but not in the following month.  So the account was debited for $10.  I should have a better grip or at least I should noticed that $3 since  I do all the operation on-line any way.  I didn’t notice. I looked only at the top of the page and didn’t screen down. So now, I am transferring to another bank which doesn’t have those fees, so it might be easier to manage.  Still, that process, which didn’t end up yet, took me a few days to complete, with three visits to both banks and to Social security Office.  I still need two more visits and one with Robert.  Small issue but so much energy, so much hesitation and questioning my decisions.

Unfortunately, there are more important issues, I am failing also.

3. Yes, I prepared myself for Robert’s last ISP.  I listed his experiences with work in and out of the house.  I made four different rather concise papers to describe his progress and his  regress.          Still, I was not able to even read the ISP which was sent to me 2 weeks ago. I kept forgetting, busy with other things and/or kept  postponing  dealing with it because I am simply afraid      what I can find out about Robert and about how he is perceived by others and how needs are addressed. If I am even afraid of reading then how can I address issues that might be there and which affect Robert.

4. I find myself reluctant to even ask managers of his program basic questions.  So, I know practically nothing about his days there.  His daily notes don’t tell anything at all.  He cannot tell me anything.  Sometimes I deduce something from changes to his program which are usually not encouraging.

5.  I know that Robert needs to better understand his world, the time that passes him by, the way different people relate to him, and he has to have better picture of himself.  I have floating ideas coming and going through my mind, but when it comes to teaching Robert, I always use prepared materials . I never create materials for him even though I have vague ideas about what he needs and feel strong obligation to do so.

6. My son’s former pediatrician wanted to help me to find  the  Primary Care Physician, but I rushed and found one myself.  I just wanted to have Robert to be settled with the set of doctors.  It seemed silly to have him waiting in the room full of babies or toddlers.  Now, I found out that my ability to communicate Robert’s medical needs to the new PCP are almost non-existent. I have so much to share, but the doctor has very little time.  I try to be concise but that is impossible with Robert long history of behavioral and medical issues that intertwine each other. The few visits to the doctors didn’t bring Robert any relief.  I find myself having trouble convincing doctor, that Robert’s behavior points to a pain not to the diagnosis of autism.  The autism is not responsible for the pain only for a lack of ability to communicate his pain appropriately.  As long as I suspect that there is an underlining medical issue to the painful screaming I cannot apply any behavioral management techniques. This last problem is breaking my heart as it becomes clear and present danger to Robert.  I hear so many histories of individuals unable to communicate his pains being dismissed by all kinds of doctors. Not only mothers are not believed, but also direct caretakers in residential homes.  Their observations of sudden change in behaviors are so easy ignored.  Robert still cannot communicate with physicians.  I have to do that for him, and I am failing.

7. In the past I was very capable of addressing Robert’s inappropriate behaviors. Now, I don’t know how to get rid of his screaming and frequent slapping his own face in small, quick movements.  I know that some instances those behaviors are related to the pain he is experiencing.  Although I cannot help him with that, I do give him lots of attention during his time of discomfort.  That allows Robert to make the connection between his screaming and our responses, so he screams, although differently, when he is just upset about something not important.  Yesterday, he made noises while searching for a broken knife I threw in the garbage and carried to the trashcan outside.  He found only handle and brought it home.

Somehow, I convinced him to throw it away.  Hesitantly but without making any inappropriate noises, he put the handle in the garbage.

Felt like a victory.

So maybe I am not a complete failure.


Reasons for not Writing

It has been very hard to write about Robert lately.  I don’t know why.  I might speculate.

Maybe it is  because I don’t know how our hours of learning  translate into more successful life for Robert.  The knowledge and skills that he seems to be gaining are not applicable to his current life .  They don’t change into better communication, or any job skills. They don’t lead to independence in choosing how to occupy himself at home. Still, I believe that one day he suddenly connects our study hours with world around him and will be able to function better.  But then if he is surrounded by people who don’t understand him, his knowledge might backfire as a rage caused by confusion and lack of ability to channel his feelings and his own understanding of facts into coherent messages.

Maybe it is because there are no significant break through to celebrate.  Robert is following rather linear pattern now.  He is practicing the skills he was exposed to before.  Sometimes, he still needs support, sometimes he needs reminder, but the concepts are not new.  The truth is I don’t introduce new ideas to him any more.  Again,  I don’t know why.

Moreover the mixture of the very difficult days, calm days, and wonderful days left me on a rollercoaster unable to adjust to quickly changing circumstances and incapable of writing about them.

It is possible that I feel guilty about not finding or developing more suitable curricula for Robert.  I seem to be stack in one mode of teaching no matter what are the subjects.   It is mostly learning at the desk.  Although I use varied materials, they are all coming from workbooks. I feel guilty because I know I should develop a program that would tell Robert what is his place in space, where he is on the time curve, what are his relations with people, and finally, what he is himself.

I don’t work on such curriculum because I am not sure where, when and what I am myself.