June 28, 2015

I should write this blog every day, recording small events – those that demonstrate progress and those that illustrate Robert’s difficulties in adjusting to changing environments or even everyday fluctuations. When I don’t write for a few days in a row, too many topics compete for the right to be written about.  Unable to choose, I don’t write at all.

Last week, Robert got a reward at his program.  Sarah, who was presenting the reward praised Robert, among other things, for being able to leave   his comfort zone and try new things. This simple observation struck me as surprisingly accurate.

Just a couple of hours before Robert got a reward, he had  hard time getting ready for a banquet. The need to change his clothes during the day, went against one of Robert’s rule – changing clothes was allowed  only in the morning and in the evening.  As my husband and I dressed up, Robert remained doubtful. He kept taking dress shirt and slacks from the closet and placing them back on hangers. He was anxious, he was hesitant, he was not sure. The rules were obviously broken, but then banquets do not happen every day. It is possible that they come with a different sets of laws. Any way, seeing his parents dressed up and ready to leave, Robert quickly replaced his jeans and T-shirt with more elegant attire.

After the dinner, but before the reward ceremony, Robert’s dad went to the restroom. Robert didn’t mind at first.  But as the time passed and dad didn’t come back, Robert became more and more anxious.  “Dad, dad, dad” he kept calling more and more often and louder and louder.  I decided to take Robert to search for dad.  dad was not in the men’s restroom.  Robert was desperate. As he left men’s restroom, he stopped in front of women’s facility.  it was clear that he considered unthinkable – venturing into that room to retrieve his father. Desperate situations call for desperate measure.

I stopped him just in time.

When Robert’s name was called, he got up from his chair hesitantly with a very serious expression on his face. It seemed as if he expected being called but not exactly. He slowly went toward the center front of the room.  There was a lot of cheering.  He received a commemorative plaque. Well, he took it and ….handed it back. Robert doesn’t take other people stuff even when they offer it to him.   It took a while to convince Robert that the plaque was his.  After all his full name was on it.

Robert’s world is governed by multiple, and rather rigid rules. They provide structure in which Robert operates, but they also narrow Robert’s universe. To expand it, Robert has to leave his safety zone and venture outside. That is not easy, but it is a necessary aspect of full human experience.

It is important to add, that very often Robert understands that the broken rule was replaced by a new one. As anxious as Robert might be doing things in a new way, the positive consequence is that he is learning and enlarging his universe. Just a week after the banquet, Robert got a banner during a social outing.  He didn’t mind taking it home.  Didn’t mind at all.

June 25, 2015

Last Friday, June 19, Robert got a reward from his Day program. Sarah, his case manager/friend presented the reward. She read a beautiful text about Robert accentuating his efforts  and his accomplishments.

“The following individual has done an outstanding job within the Life Enhancement Program this past year. This individual has become an asset to his community; volunteering at both the Dedham Food Pantry and various Meals on Wheels routes. Over the past year this individual has pushed himself to achieve more, often trying every piece of cardio and weight lifting equipment offered at both the Vanderbilt and YMCA gyms. He has broadened his education and social horizons by engaging in a wide variety of community trips he wouldn’t have otherwise done even just a year ago. This individual has achieved everything Life Enhancement encourages its individuals to strive for; going outside of your comfort zone and being open-minded to trying new things. I couldn’t be happier to be acknowledging this individual here tonight. For the 2015 Life Enhancement Achievement Award, Robert Hrabowski.

I know that Robert’s success could have been achieved only because the instructors and job coaches surrounded Robert with not just good programing but full emotional support. They LIKE HIM and He KNOWS THAT.

Such a difference. Almost three years ago, a teacher who just started working in Robert’s classroom told me two things:

1.  That he had never worked with a student as difficult as Robert.

2. That it is better for him (the teacher) to look at the wall when he talks to Robert because then he doesn’t get angry when Robert doesn’t reciprocate his gaze.

There are many things wrong with those statements.

1. The teacher should vent his frustration with his colleagues or supervisors, but not the parent.

2. He demonstrated that he had neither knowledge nor experience of working with students with  profiles similar to those of my son and left me wondering what and how he would be able to teach my son or even tolerate him in his classroom.

3.He made it all about himself, not about Robert.  There was no effort to understand my son’s perspective.  He concentrated on his own issues.

Sarah’s speech, on the other hand, was centered on Robert.  In the most poignant part of the speech she acknowledged Robert’s efforts to venture outside his comfort zone. In a short sentence she was able to present  things from Robert’s perspective.

I am sure that Robert’s instructors and job coaches had to put a lot of efforts in leading Robert through all the new activities and jobs.  They had to work as hard or harder than his last teacher. The difference between  their approach to Robert and that of the last teacher was caused by attitudes and the perspectives from which they look at and communicated with  Robert.

This text needs more work.

June 15, 2015

Our trip to the grocery store wasn’t long. Maybe 20 minutes.

Buying Bread

Wheat Ciabata bread, I reached for in the bakery, had green mold on it.  Since there was nobody  in the bakery  I carried the bread to the Customer Service. Robert didn’t mind. He followed me waiting patiently as I was showing the clerk what was wrong. This experience sufficed to make me change decision and buy bread in the “industrial” bread section.  Robert didn’t like those breads and as I took a loaf of oatmeal bread from the shelf, he loudly protested, “No, no,no!” He was afraid I would demand that he eats that bread. I tried to calm him down by explaining that this is bread for me, not for him. He wasn’t convinced, and discharged another series of, “no, no,no.” I repeated my assurances and he calmed down letting me put this version of American Cotton Bread in the shopping card.

No Potatoes but Cheese.

Robert eats only Idaho or Russet potatoes. Because he eats skin too, I tend to buy organic Idaho, believing they are healthier.   Except the store didn’t have them. The store had  Organic Golden and Organic Red, but no Organic Russet.  Robert hesitated and then picked up a bag of non-organic Russet. I wasn’t sure if we should buy them or not.  I had only $35 cash, and wanted Robert to pay with cash and not with his debit card. So I told Robert, “We still have potatoes at home. Please, put them back.”  Robert took a bag.  I watched him from a short distance.  He went to the middle of the shelf, bent down, and put the bag in the same place he took it from just two minutes before.

As we were passing by dairy section, I reminded Robert that we needed mozzarella cheese for his poblano. He took one package, placed it in the cart. Then he picked it up again as if wanting to put it back.  He looked at me expectantly. “We need cheese for poblano”. I said. Robert mozzarella to the cart only to pick it up again and look hesitantly at me.  I repeated my previous words two more time, as I walked farther away from the dairy section. Robert followed me and returned the cheese to the cart.

Green Tea Expedition

“What else do you need?”

“Green Tea”, said Robert.

“Green Tea is where the water is kept”, I said as we reached water and juice aisle.

“You have to go by yourself.  I will wait here.”

Robert went to the end of the aisle and grab a plastic bottle of Arizona Green Tea. He was walking back toward me with a proud smile on his face, as if he were bringing golden fleece from successful expedition to Colchis. And it was then when I realized how suffocating my close presence has to be for Robert.  how much he needs and wants a little more room for growth and independence.

Money, Money, Money

Robert passed all of the groceries through the scanning machine.  Only once he hesitated what to do when he couldn’t find a bar-code on a bag of grapes. he kept turning and looking. I stopped bagging and came to point to the number code on the bag.  Robert entered it and tried to reach for his debit card.

“We are paying today with cash”, I said as I handed Robert paper bills. Robert fed the dollars to the machine which swallowed them all returning only 10c back. We finished shopping.  At least I thought so.  But not Robert.  He was used to paying with his debit card, and leaving the store without paying with a debit card seemed wrong to Robert.  He didn’t want to leave. He was standing by the scanner, and when I told him we had to go, he became upset.  He “ran” his fingers through his ears and made a few disgruntled noises. “We used cash today,  You paid with dollar bills.  You didn’t need your card” I believed that those words would calm him down.  They didn’t.  they only reminded Robert that the rules of paying had been broken, So he ran his fingers again and again through his ears – sure sign of frustration.  But I kept repeating and walking from the register.  Robert followed and calmed down.

June 12, 2015

As long as the bed sheets were all white, Robert didn’t mind replacing dirty ones with  clean ones. However, when I made a mistake and bought him a blue striped set, Robert established new rules for his bedding. The striped sheets could be taken off.  That wasn’t a problem.  Another set could be placed on Robert’s bed. That wasn’t a problem either. When, however, the blue striped sheets were washed and dried, which usually happened the same day, the other set had to return to the linen closet. Robert made sure of that.  He did laundry himself to make sure that he would sleep between blue, striped sheets.

Well, I didn’t want to argue, as long as the Robert’s bedding was clean and he took upon himself to follow the rules he established.

But, using and overusing the same set soon ended in a wearing out and tearing.  One day, Robert found out a long hole in the fitted sheet. Nonetheless, he put it on his bed trying to keep edges of the hole together.  Next morning the hole was reaching from the headboard to the other end of the bed. When Robert didn’t watch I took the sheet off and, after thinking for a second I cut both ends (through the band inside the fitted sheet.)

I placed two halves in a basket where we keep rags to be used for cleaning later. When Robert came from school, he found them and put them back on his bed and slept there. The following day, I tore the sheet into four pieces and put them back in a basket with rags. Robert came from school.  Immediately ran to his bed to check if I didn’t do anything unacceptable. His worse expectation were confirmed.  There was a white fitted sheet where blue striped one should be. So again, he went to the basket, brought four pieces back and spread them on the bed the way they should be.

Well, the following day, he found the blue, striped fitted sheet torn into 15 or 16 pieces. It took him a while, but he assembled that puzzle as well.  It was not so difficult to match all the pieces as the  stripes  ran in one  direction and they differed with the shades of blue and purple. Robert finished and lied down to check how it was feeling.  He was still in his day clothes.  He tried to lie still, but nonetheless when he got up the pieces were in disarray.  Robert picked them all and placed them in the basket with other rags.

Or Not

For the next few years, Robert used another bed sheet with a pattern.  After a while it also got worn out and began tearing. Yesterday, after it was washed, I tore it into four pieces, but left them in the clean laundry basket. As Robert was putting laundry away (his regular chore at home), he took out the pieces and carried them straight to the….. rag-basket.

June 9, 2015

The workbook, Using Context Clues To Help Kids Tackle Unfamiliar Words had many pages missing. That was a clue reminding me that I started using this workbook years ago, but that for some reason I stopped .  The reason, of course, could be only one – at that time, I didn’t know how to teach Robert to pay attention to those words in a sentence that might have pointed to the meaning of an unfamiliar word. Maybe those supposedly helpful  words were too difficult. Maybe the sentences were too long and the links between words were lost. As the tasks grew more difficult from page to page, I abandoned the idea of using the workbook. But learning how to derive the meaning of a new word from the clues left by other words in the sentence, is important.  Rarely, the stories Robert read offered opportunity to practice that skill when unknown words popped up in the text.  That was not enough for Robert.

Last week, Robert and I returned to the book and day after day Robert was engaged in Reading Detective Practices as the units in this workbook are called. The tasks didn’t seem too difficult although often Robert still needed support.

Today, I was surprised to see how quickly Robert chose the correct word  out of three choices. Famished – Starving; Hazardous – Dangerous;  Flawed – Imperfect;  Abhors-Hates; Bevy – Group; Terminating – Ending. He hesitated with choosing “HOME” to replace “DWELLING” He was lost with “PARCHED”. The sentence talked about quickly drinking a glass of water.  Robert has never connected the  word “DRY”  with the word “THROAT”.  Thus, the word “THROAT ” in the sentence didn’t help Robert to decipher PARCHED as DRY but confused him  instead.

I understand Robert’s difficulties with that word.  What  I don’t understand is what Robert’s ability to point to the meaning of those other words came from.  Is he able to  scan quickly the whole sentence  for clues?  Does he put all other words in the sentence to find out if they make sense?  Or does he still, in the most uncanny way, record and read those movements of my eyes, hands, or mouth that without my knowledge point Robert to the  correct answer?

June 8, 2015

As I kept repeating ad nauseam, Robert and I study almost every day.  Sometimes more, sometimes less.  Robert learns, forgets, relearns, places the new information among well-known facts, gets confused, forgets, and learns again.  The process is not straight forward by any means, but there is a progress.  How useful is that progress  for his day-to-day functioning is another matter, much harder to answer.  I believe that when Robert understands more academics, his understanding of his environment also increases.  But this is only my belief and not empirically confirmed knowledge.

And yet his ability to write down what he attempts to say without being understood, is the great tool which at the same time decreases his frustration and the frustration of those who listen to Robert. Of course, there are things Robert learns outside the table where we study together.  He learns those important little things that are the cells of life.

1.This month, Robert began to eat raspberries bought in the store.  Before this month he ate raspberry only when picked by him at the raspberry farm. He turned head away any time, I tried to entice him to eat raspberry bought at the store.  even organic ones he ignored. Now, he eats them without even being encouraged to do so.

2. After visit to Horseneck Beach in Westport, Robert asked his dad to go to the Bay Restaurant. Not McDonald, Applebee’s. Outback or any other chain restaurant, but he asked for local Bay Restaurant, not far from the beach.  Maybe he was very hungry and asked for the closest restaurant, the one  he remembered from the previous visits to the beach and the restaurant.

3. Last Thursday, I waited for Robert by the stairs, inside JCC in Newton. It was the third time, he went to men’s locker room to get ready for the pool and to get dressed after his swimming lesson. I got anxious as he was not getting out of the men’s dressing room. I was afraid he could get in trouble for one reason or another.  I decided to ask a man sitting at counter for help.  As I was walking toward the man, I noticed Robert already dressed up in his jacket, turning around the parent’s waiting room and looking for me. He passed by me when I talked to his swimming teacher. He knew where to was supposed to meet me, he looked around, and he waited.

May 31, 2015

Robert still doesn’t have a friend. A person who would come to our house to hang out with him.  Or who would invite Robert to his/her house to do together the nicest thing possible …nothing.

It hurts.

It hurts me to see that and feel powerless.

It hurts him even more, as his loneliness is never named as such but instead it is felt with every cell of his body.

May 26, 2015

I packed all our clothes in one duffel bag while Robert was still sleeping. Since we were going only for a two-day long trip to New York City, one bag for the three of us was sufficient.  I thought that by doing all the preparation for hastily arranged jaunt I would avoid Robert’s interference with packing.

I was wrong. As soon as Robert’s eyes caught a glimpse of a duffel bag, his hands did quick unpacking, removing some items of garment and bringing others not always appropriate for the occasion or for the weather.  He packed everything by making one big ball of all the clothes in the bag. Since I was already tired, I got pretty upset and not in the mood to stand my ground.  Somehow, witnessing Robert’s rearrangements of the bag for the twenty-first time didn’t make me more prepared or tolerant, but to the contrary exhausted and helpless. So I withdrew to my bedroom to unwind and rethink what to do.  I was upset and I considered not going on the trip at all.  After a few minutes, however, the most obvious idea entered my mind, “Robert should pack his own clothes in his own backpack.”

Of course, Robert still protested.  He wanted the things the same way, they had been for the last couple of years. He protested, but I insisted. Knowing that I was teaching Robert another important skill brought back energy, I didn’t have before. Confronted with my regained strength, Robert gave up and  brought his backpack. He carefully separated his clothes from ours and placed them in his backpack. He was in charge of his clothes during the length of the trip, unpacking and repacking the backpack as he pleased. I didn’t mind.  I didn’t mind at all.

1. Why it took me so long to understand that Robert could and should pack his own clothes? Typical children assert their independence early on choosing the clothes they buy, wear, and pack for the all kinds of outings. Robert has been doing that for at least a year, except I didn’t notice. Instead of saying, “I don’t like that.  I liked this”, he was switching the clothes in silence. Yet, if  I didn’t “hear” the message it was not because Robert didn’t use words.  I didn’t hear, because I didn’t “listen”.  I didn’t listen, because, I didn’t expect Robert to be able to make his own choices despite the fact that he kept making them for at least a year.  Sadly, Robert’s diagnosis was a reason for my refusal to see that Robert’s need for some independence. 

2. It is much harder for me to “argue” with Robert now.  It is not because of his size. I am not afraid of him.  He is not aggressive although sometimes he demonstrates his anger by making faces and strange noises. It is harder now, because of the exhaustion I feel when I am confronting the same behaviors/issues over and over again.  It is the repetition that drains me.  Because I feel drained I don’t have the strength to analyze the possible solutions and I repeat the same approach over and over again.  Just like with the duffel bag. I packed it. Robert repacked it.  I packed everything again not without Robert’s protests.  I felt to overwhelmed to think so we continue to pack and unpack.  Last Thursday, I felt so stressed that I had to retreat to my bedroom and calm down.  removing myself from the commotion and a few minutes of peace opened my mind to the obvious solution, “Let Robert pack his own clothes in his own backpack.”