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


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.






For the Record 9

January 17, 2019

Robert and I did a lot of easy studying, repeating, and reviewing during the last couple weeks.

Every day, we read two pages from Autism and PDD Expanding Social Options and practiced sentences related to each topic.

We advanced to the Intermediate level of presentation while working with lessons from Functional Routines for Adolescent & Adults Home. I expand the lessons to relate them to our previous experiences while performing many daily chores.

Robert is still solving one 9×9 Sudoku a day with my help. However, there are more moments when he independently enters a few numbers in the grid. Moreover, he grasped the idea that although sometimes we cannot point to the cell were given number belongs, we still can deduce that it belongs to a given column or row.  Using that information helped Robert to enter other numbers on the chart.  I consider this to be very important development.

I brought back Take Me to Your Seat folders. During the last two weeks, we used them to

1. Add positive and negative numbers to find the temperature  outside.                                                                                                                                                                                         2. Count the percent to find the sale price of clothes.                                                                                                                                                                                                                  3. 3 .Count vertices, edges, and faces of different 3D shapes.                                                                                                                                                                                                            4. Retrieve data from  bar, line, and circle graphs.

We practiced cursive writing to increase the length of some of the letters which Robert changes into microscopic, undecipherable waves.  There is not much improvement on this front.

We used Fun Deck cards to address among others the fluency of Robert’s speech. Lately, we went through set of Do and Does, Let’s Predict and a few others.

And of course we are still practicing pronunciation with old, huge Weber book, repeating each word or phrase twice.

we continue reading one chapter (around 10 pages each) a day from abridged children’s classics.

I realized, however, that Robert would benefit much more from original versions.

The time we study together is the most peaceful time in our home as everything hangs in balance.

However. it worries me that there is no increase in the length or number  of Robert’s independent activities. It worries me, that he relies too heavily on my support, suggestions, or even my physical presence to continue learning.

He demonstrates more drive with some of the chores – mainly laundry from loading the washing machine to folding and hanging and emptying dishwasher.

Unfortunately, as he is getting older, it is easier for me to see how many things I neglected to teach him or practice with him. Making list of such items would be much more useful than the list I have just written above.  Such list would allow me to set new goals instead of pretending to be satisfied with what I almost automatically do every day.

It is not what Robert needs most.  I know it, and he probably knows that too.

Connecting Parts of Robert’s Universe Part 1

I wrote this text two years ago as an introduction to my report about our trip to Philadelphia. However, the problems related to Robert’s ontology present themselves frequently enough to warrant a second look and more detailed description. 

When, during our trip to Philadelphia, Robert was exposed to new arrangements of familiar elements, he exhibited  the behaviors I knew from the past.  I dealt with them years ago and believed they were extinct.  They weren’t.

In the past, I discovered that Robert’s universe was made of separate bubbles. Each bubble consisted of specific places, concrete people, and a particular set of rules characteristic to that sub-world.

1.  Each person has assigned her own place  in the world and shouldn’t encroach  on another person’s space. Robert tried to push me out when I visited HIS classroom.  He attempted to block his teachers from entering OUR home.  While we, the parents, could take him to almost any restaurant, only his respite providers (any of them) could take Robert to McDonald’s.

2. Each person also had  special role in Robert’s life.  When outside, Robert followed Amanda example to the T’s.  She climbed on a rock, he did too.  She walked on a fallen tree, he walked on it too. She jumped in a funny way from the curb, he returned to the sidewalk to emulate her movement.  But when Amanda reached for the bottle of juice which was placed too high for Robert (he was shorter than she at that time), he got mad. It was not her job to do so.  Only parents could give him his juice.  It was their prerogative and their responsibility.

3. Robert could go to any place provided that after each visit we returned home.  Then he could go again. The home was the center connected to other bubbles, but the remaining bubbles were not supposed to be connected to each other.

4. The things should remain in the same places.  All things, including cars and people.

Over the years, we managed to help Robert expand his worlds and connect many of those separate sub-worlds into more complex but hopefully more uniform universe replacing narrow rules with more general ones that allowed for flexible adjustments. However, during our trip to Philadelphia Robert seemed to recreate his old model of the universe.  When we didn’t act in accordance with this model, Robert tried to remedy  that by constantly remaining us about the problem and, when we didn’t react properly, he protested.


The Battles for the Teachers’ Souls

December 19, 2018

This is a difficult subject to write about. It opens never entirely healed wounds. It is also  complicated.  At the same time, it is both painfully sharp and confusingly foggy. There are hundreds e-mails, which I still keep, demonstrating how desperately I tried to deal with those never-ending problems  but kept failing. Finally I gave up.  Many parents burn all the documents related to the struggles for education of their children with special needs.  They want to move forward. This doesn’t help the children who come after. New parents have to go through the same battles and the same pains. That is why, almost 5 years after Robert “graduated” from Mytown Public Schools, I do feel obligated to write about some of the past experiences.  But because it is a difficult subject, I will write in short paragraphs which might seem loosely connected to each other.

1. Teacher and Teacher Aid

One of the reasons I took my son from a good private school for children with autism was the fact that he was  only taught in one to one arrangement. I wanted Robert to be a part of the group and listen to group instructions. So, what was my surprise when during observation of Robert in his new public school setting I noticed that he was separated from other children in the classroom and taught by the teacher aide in one to one model.  It was worse than what he had experienced in private school as he could see first hand that he was the only one not included. I voiced my concerns with the classroom main teacher and soon enough everything changed.  From that point on, all throughout the day, Robert was learning in one of the  few groups of children formed depending on the subject, the theme of the lesson, and  student’s skills and needs. I believe that this teacher was also using elements of Universal Design. The teacher’s aid became more important and his job more diverse but also more gratifying. That was the best year in Robert’s education.

2. How to Destroy a New Teacher

The wonderful teacher, I wrote about above, was  fired by the end of her first year in the school.  I don’t know what was the rationale of the school principal but I do believe that he didn’t know much about special needs and complexities of running as diverse classroom as was this one.  Instead, the principal hired a young teacher.  He based his choice on what he believed were her “qualifications” of which the most important one was that she had a brother with autism.  Moreover, she worked as a teacher’s aide in another district and before that she worked in a private school. Still, that was her first year of leading a classroom. It would help her if she were required to write lessons plans for, at least, a few hours a week.  It would help if she were supervised and instructed properly. It would help if she had a mentor who would be familiar with the range of needs the students had. It would help if  she were open to listening to their experiences of the teacher’s aides who worked in the classroom before.  Unfortunately, the principal never entertained any notion that this teacher might need intensive support.                                                                                                                                                                                                                                                                           Each month,  Robert became more anxious and agitated  – the consequences of his increased confusion.  Robert lost the classroom in which he new the rules. There is nothing Robert hates more than  contradictory directions. So, almost every week I was summoned to school, to pick up my bewildered son at the front door to which he was escorted by two people. One day he was brought home on a school van an hour before scheduled time without any prior notification. It was lucky that I was home. The day, I picked him up while he was hitting his own face with the full force of his two arms  I decided never to bring Robert to that program again. I believed that this  teacher’s abilities were destroyed beyond repair and thus my son who had been already seriously damaged would continue the spiral to abyss.

3. Hindering the Teacher’s Growth

It was his first year of leading a classroom.

He had the best possible personality to work with young people with special needs. He was warm, patient and calm. There is no doubt on my mind, that it was he, who let my son recover from distrust, confusion, and anger.  The consultant who had seen my son in his previous program and this one, attested to that. It was just a second week but Robert, according to the consultant, was much calmer than he was in the previous classroom.  “He was relaxed,” she said.

Unfortunately there were also problems. The classroom, although at first considered part of the high school, was situated  in the administrative building. Consequently, the TEACHER didn’t have any support from other teachers. And thus he relied heavily on a job coach/teacher’s aide working in this classroom. His reliance on her was amplified  by the fact  that this person was also a Gray Eminence as she was a secretary for the School Committee.

Moreover, she was very invested in this particular program because her daughter was attending it. As every mother, she wanted to make the program fit her daughter’ needs perfectly.  She had every right to do it, but somehow, her concept of that classroom didn’t involve group teaching. As she told me much later, in a heated phone conversation, “This program was for the students over 18 years old as a sort of waiting room from which students were bused to different places”.  Those different places might be a course in college, (provided that other institution and NOT Mytown Public Schools paid for it)  be it a place the students volunteered. As the woman stated, this program  could offer some job training, but no academics. Students were not to be told what to do and they could freely accept or reject what the teacher suggested.

As it happens, all of them rejected the idea of having gym with Robert. So it was Robert’s teacher’s aide and the gym teacher who exercised or played ball with him. Nobody else. This broke my heart and I blamed the teacher for it. He was in charge.  In my opinion he was there to install in the students that they do have some obligations toward others. That there are rules of the classroom.  He had a power to persuade them or convince them to play a ball for 30 minutes a week .  But he didn’t.  He didn’t because he had the gray eminence of Mytown Public Schools who told him that this is not, “HOW THIS PROGRAM WAS DESIGNED”  And thus Robert was  again lonely if not shunned by other students with special needs.

IN a letter to the School Board I stated that The School committee has a right to design program as it wishes, but the Mytown Public Schools cannot place my son in a program that is so horribly incompatible with his IEP.  Of course, it had to be said, that the most members of the School Committee had a very limited idea about IDEA or the state laws governing special education.  It is possible that they look at special education through the eyes of the former principle of High School or the secretary of the School Committee.

As I am writing this, I am still angry, as I see how much money was wasted on a program that didn’t accept my son and how many chances for learning social skills were lost. I am angry about the time and energy I spent trying to persuade the TEACHER, the special education director, the superintendent, and the members of the School committee to TEACH MY SON.  I wrote hundreds of e-mails persuading, begging, filling for mediation, and then for hearing,.  At some point I knew I just had to preserve my sanity and give up.

Even now, when I remember some of the things that happened,my blood boils and I have to take a break.

I don’t know how, but this TEACHER by the end of the January of the following school year, changed dramatically.   He began planning his lessons and he connected them with the real life experiences from community trips. He organized more opportunities for job trainings for the students. And he did so much more about having Robert accepted. He always had a very good, calm personality to work with special needs population but now he became a great teacher. He became the TEACHER,   I always wanted my son to have.

And then he quit.

Possibly, he couldn’t take the pressures coming from Gray Eminence and me.  He quit.

It is possible that I am the person who was blamed for his decision. I wanted the classroom to teach my son despite the fact that it was considered a waiting room for adulthood.  I wanted to make the way my son was taught to be also beneficial to other students.  I was the one voicing concerns, by bringing educational consultants to the classroom and offering new educational materials.

The Grey Eminence, was soft-spoken and only once she lost her cool when I asked her “Why she doesn’t want this classroom to teach its students”  It was clear that the anger about my effort to change the program was boiling and she exploded. That was when she told me that the program was a place where the teacher’s activities were, more or less,  reduced to janitorial supervision of students.  It was also implied that it was not the program, that was designed to answer my son’s need. No, she didn’t say, my son should go somewhere else. But she implied that.

Yes, I regret terribly that this TEACHER left, but I do not feel guilty.  I do think that it was The Grey Eminence who was impeding his teaching. Yes, I was loud, she was soft-spoken.  I was trying with the help of consultants bring changes to the classroom while she peacefully and pleasantly tried to keep the status quo. Yes, it was I who introduced criticism hardly hiding my disappointment which might come out as anger while she was spraying the balsam of contentment over  the classroom. .

At some point, the special ed director accused me of “hating the TEACHER”.  I told her, that nothing was farther from truth. He did save my son after hiatus of the previous 6 months in an old classroom. He did save him. I have never stopped being grateful for that. I liked his calming personality, but I did believe that given his appeal to the students, he could do so much more and I was bewildered why he was not trying.   Then I learned about the politics of the classroom.  The politics of opening a program by Mytown Public School and not giving almost any money for teaching materials.  It was the politics of the School Committee which had to separate students whose differences in ages were over 4 years as the law demanded after the expiration of the grace period given a few years before by the state.  The classroom had to be created and so The Mytown Public schools built it in such a way as to limit any expense  and by doing so it hindered education of almost all students placed there  including the Grey Eminence daughter.

I understood later how hard it would be for any teacher to open his/her wings and soar in those circumstances.  But he did.  For 5 months but he did.   I hope he is not discouraged from teaching.  I hope somewhere some other young people benefit from his skills, from his calm and patient attitudes and, most of all, from the strength and determination he showed when he regained the control of his teaching profession.

I have to add.  I don’t blame The Grey Eminence.  She fought for what she considered to be the best solution for her daughter just like I fought for my son. It is not her fault that she was given a power to influence the way, the program was designed. She might not even be aware of her prominent status. But I do blame members of the School Committee and the former superintendent of the Public Schools in Mytown. They allowed for this imbalance to the detriment of my son’s education.









The Confusing Pains of Changing Habits

December 1, 2018

A few times during the last week, I told  Robert that we would move his horseback riding lesson from Sunday to Friday.  He accepted that change in a schedule without protests. However, nobody made Robert aware that during a lesson, he would have to use a blue helmet instead of a purple one. That was the last-minute switch and he was not ready for it.  As soon as the instructor told him to put on a new, blue helmet, he protested.  When, he was told that the purple one is not there anymore, he ran to the riding arena and came back with the  purple helmet already on his head.

This was one of those moments when I don’t know how to react.  Insist?  But insisting might result in failure to accomplish acceptable response.  Of course, when insisting doesn’t work, I can reduce the feeling of complete lack of influence over Robert’s behavior  by asking Robert a question. For instance, “Robert, do you really want to wear the purple helmet? Start with I, and tell me which helmet do you want to wear.” Then I should wait for an answer. Since the most severe of Robert’s problem is his very limited functional language, having Robert to respond in a full sentence could be treated as a valuable consolation prize. It could give Robert one more example of using language instead of non verbal behavior  and reduce his anxiety related to the fact that he did something other people consider wrong.  Because, even when he “wins” the battle” and continues wearing purple helmet, he is not happy, he is anxious and doubtful and he doesn’t know how to solve his dilemma.

This is what I should have done, but didn’t. In a public place, my responses are almost always tainted by the presence of other people.  I understand that each person brings to the conflict Robert has been causing, a different perspective. I feel obligated to take those perspective into account, even though, I don’t exactly understand them. Moreover, Robert usually gives the person who is in control of the physical place and who is his teacher preference over me.  Finally , there is a confusion I feel because on one hand I feel obligated to address Robert’s problem myself, on the other, I  prefer others to address Robert directly.  The effect is more doubts and hesitation on my part and more confusion on Robert;s part.

And confusion he hates.

That Friday, Robert’s instructor agreed that Robert could wear the purple helmet. She just made sure that Robert knew that the next time the blue helmet is obligatory.

Robert was fine with that. Well, for 10 seconds.

As soon as he felt that the pressure to wear blue helmet subsided, Robert discovered the freedom to do what was right.  Such freedom is a very difficult thing to deal with specially if you are used to always do what you are told  or by what you have done many times in the past.  When other people words or the past behaviors shape your reactions, then taking it upon yourself to make decision seems overwhelming.  And Robert was overwhelmed.  He moved closer to the shelf with the blue helmet, then away from it toward the riding arena. He didn’t know yet, what to do.  It took him a few more minutes to decide and many more trips between his horse and the shelf. He suffered, he was anxious.  He was confused. he made noises of frustration and patted his cheeks in short and quick motions.  He didn’t know what to do. He wanted to do what was right, what his instructor Meghan told him before, but that would mean he needed to change his habits.  The habits which suited him well for the last few months. After a few minutes, Rober was almost ready to mount his horse, Calvin, when he turned back and ran to the shelf.  He took off the purple helmet and put on the blue one.

He was still not sure that was the right decision, but as Calvin walked out of the arena to the the woody path by the edge of the lake, Robert’s doubts disappeared. He was fine.