July 29, 2015

Robert doesn’t explain himself. He doesn’t tell what hurts.  Only once he asked for a doctor and pointed to his tongue stating that it hurt.  Rarely, he has high fever that would alert me to his altered state of well-being. But there are other signs.

1. The first sign telling me that Robert is not feeling well is the fact that he relinguishes his role of the guardian of his environment.  He is not walking all over the house checking what I have left in wrong places while I was cleaning. He ignores toothpaste  on the right side of the sink instead of the left side, or shaving cream on the wrong shelf of the cabinet. He doesn’t make sure that my phone and my car keys are in my purse. He leaves paper shopping bags in the middle of the kitchen instead of folding them and putting away. One might say that Robert’s obsessive compulsive behaviors is greatly reduced.  I say that he just cares less about the world around.

2. The second sign is the fact that he prefers to stay in bed instead of going for a walk or even to the movies. He always  likes to take naps, but when he has an opportunity to leave the house for a walk in the park, go to the restaurant or movies, he is up in a minute. When he is sick this is not the case.

“Robert, do you want to go to the movies or sleep a little longer?” I ask. Half sleeping he answers, “Sleep little longer. ” One hour later his response is the same, “Sleep little longer” . He doesn’t changes his mind two or three hours later.

3. Sometimes, he seems to have high fever.  But since he tends to sleep deep under his comforter and get very warm, that is not the best indicator of his condition.

4. Sometimes, he says that something hurts. Very often, he cannot name the part of his body his pain comes from. Unless it is easier. If it comes from his mouth, he would say, “Tongue hurts.” In the past, he sometimes screamed from the pain. I only suspected his stomach or his intestines. However, I  didn’t exclud headaches or asthma tightness.  I used to give him something for each at the same time. Ibuprofen for headache, Flovent and Albuterol for lungs, and Metamucil crackers with water for gases.

Robert hasn’t felt well since Sunday. I don’t know why.  Did the fresh paint in our stairwell increased his allergy symptoms resulting in constantly running nose and cough?  Was he attacked by viruses or bacteria?

He slept most of the Sunday.  On Monday, he woke up early ready to go to his Program.  He did.  But when he came back he was coughing more, he had difficulties swallowing.  On Tuesday, we went to the doctor.  The doctor stated that it was not strep and didn’t give him antibiotic.  I almost wish she did, as I would rather know what was happening and have a concrete response in place than deal with the vagueness of his symptoms.  I am still not sure if his symptoms are allergy related or caused by virus. I kept Robert home today, as he coughed a lot at night.  He seemed better during the day.  I hoped he would go to his Program tomorrow, but since he resumed coughing when he went to bed I am not sure he should go.

Meantime my throat begun to act out.  It is possible that this is stress.  But maybe not.

July 25, 2015

Two weeks have passed since we painted ceilings in the stairwell and the living room.  Two weeks ago we also painted walls in the living room, but left the stairwell’s walls untouched. As I wrote in the post Painting with Robert that was a difficult day for all of us. We needed time to recover before the next painting session.

I believed that today we had recuperated enough to continue the painting. So we did. Robert brought the plastic sheets to cover stairs.  Jan brought the ladder.  I gathered brushes, edgers, rollers, and paint.  Robert didn’t protest. Not once.  He wasn’t taking anything to the garage without asking first.

Of course, he has his own way of asking.  He would show us an object and say, “Here, here, here?” We have learned to understand those words as, “Can I put this thing (which I have in my hand) away?” Sometimes, we said, “Yes, you can.” Robert took whatever object he had to the garage or furnace room.  Sometimes, we said, “No, we still need it.” and Robert left the thing in the place he took it from.  As Jan was painting the top part of the walls, we kept asking Robert to do many little things – bring this or that, put something away, or find something one of us misplaced. He always did. When Jan removed the ladder, it was Robert’s and mine turn to paint lower parts of the walls. At first, Robert had to be told to work.  He didn’t protest but after covering half of the wall with the paint he said, “Mama, mama” and returned the roller to me. I finished the wall, moved to the next one and called Robert to help again. He came again, painted part of the wall and again called, “Mama, mama.” I decided that Robert helped enough and decided to finish the job myself.  When, however, I was covering the last wall with the paint, Robert came and asked, “Robert, Robert.” He wanted to paint and I let him.

He finished the job by doing his favorite thing – putting everything away. He took all the plastic from the stairs.  He carried the paint to the garage.  He waited until I finish washing each tool and carry every item separately to the proper shelf in the garage. With each object out of sight, he became more and more happy and more and more proud of himself. As he should be.

July 24, 2015

Last Sunday, my husband and I decided to paint the ceilings in the living room and in the staircase. The ceiling in the staircase was high enough to require extended ladder.  Maneuvering the long ladder in a narrow space around the stairs was difficult.  It was even more difficult because Robert was not happy about the whole thing and he made sure we knew how unhappy was he. Very.

His anxiety demonstrated itself by repeated requests that we stop the painting immediately and that we put the ladder back in the garage. We didn’t.  We finished painting the ceiling in the staircase before Robert with his dad folded the ladder and carried it to the garage.  Smaller, a two steps ladder was sufficient  for the living room ceiling. “It should be easier from that time on,” I thought. But it wasn’t. Robert kept bringing living room furniture from the dining room where we temporarily stored most of the items.  It was very, very hard to paint. At some point, I went to the bathroom and cried. I have to admit.  I felt sorry for myself.  I am not ashamed.

Before we decided to paint with Robert, we tried to sign Robert for overnight respite.  But he was not accepted. We considered hiring painters, but discarded that idea as we knew that it would not make it easier.  Robert would be all over the contractors and we would have more, not less, problems trying to keep him away from them.  We had to paint with Robert.

Of course, I could plan it better.  I could do small painting projects with Robert.  Just one wall in his room. Maybe even half of the wall.  We could dress for painting just for 10 minutes. We could move one  dresser to another wall. We could practice using edger or roller or brush. We could.  But we didn’t.

That is why that Sunday afternoon, I cried knowing that Robert was not prepared for many situations that might happen in the future.  He should, at least,  learn to accept them. I cried as I realized I couldn’t prepare Robert for all possible events that could shake Robert’s worlds even more drastically than temporarily  placing a living room chair in the dining room. I was overwhelmed by all possibilities of Robert’s environment being suddenly transformed and nobody helping him to adjust. I was overwhelmed by Robert’s  persistent efforts, lasting two hours or more, to bring things back to the living room which was still being painted.

Surprisingly, Robert agreed to go to Mac Donald with his dad. Surprisingly, because in the past, Robert wouldn’t leave the house in such terrible condition.

I was almost done with the ceiling when Robert and his dad came back.

Robert was calmer, as he noticed signs of wrapping up the painting.  Jan and I kept asking Robert to do small things like taking just one tool to the garage. As he predicted end of this mess in near future, he complied happily.

Soon, however, he felt sort of betrayed when we still didn’t let him bring the furniture back after the painting of the ceiling was done.  I kept telling Robert that on Monday, I would still paint the walls, so all the objects had to remain in  the dining room.  Robert seemed to listen, but when I turned my eyes somewhere else, all the pictures were back on the walls.

“Robert, I said, I am very tired.  Tomorrow, I will have to paint more.   I would have to take all those pictures down and carry them to another room.  That is a lot of work.  Maybe you could help me and do that today.”  As soon as I finished, Robert took all the pictures off the walls and placed them under the dining room table.

Today, as I was describing what happened on Sunday, I was almost surprised by my own despair.  Not because, I didn’t feel very sad that day.  I felt even worse, than my words described. I was surprised, because today, I didn’t feel the same anguish. Its reasons seemed insignificant.   I was left with what was important. And that was the fact that Robert listened to me and  understood the reasons why the picture had to be taken down. he had to imagine the next day.  He had to imagine me taking the pictures. He had to empathize with me.

That was why he allowed the pictures to linger in the living room.

Temporarily.

July 9, 2015

Yesterday, Robert and I were studying together: reading maps, counting perimeters of regular polygons, talking about problem presented in the picture and its possible antecedents, simple analogies, reading a tall tale Pecos Bill and answering questions, and reading a short paragraph supported by four pictures about working as a dining room assistance. Everything was rather uneventful and sort of boring.  It was boring because I (I!) was tired and had difficulties concentrating. We were almost finished when the door bell rang and family’s friends came in.

“Robert, we will take a break”, I said.  Robert didn’t mind. “You can watch IPAD”, I continued.  Then I made a mistake.  I excused myself for a minute and went to replace  my overused  robe with more appropriate attire.  My friends and I went outside to look at the flowers in the yard which I tried unsuccessfully so far, change into a meadow.

Robert protested. He stopped at the door calling. “Mom, mom, mom” . It was a desperate call and nothing I could say or do, would stop it.  Maybe there was something which could defuse those loud, never-ending calls, “Mom, mom, mom”, but I didn’t know what it was.

I didn’t know, because that had never happened before.

Sometimes, when I worked in the yard for too long, Robert would call for me, but usually he didn’t insist when I stated that I had to finish my work.

This time, he was more than persistent. He was desperate, as if the world was falling apart because of my walk outside.

I wanted to continue walking, but at some point the energy dissipated from me completely. The friends left and I returned home.

I thought Robert would calm down.  But he didn’t.  He was agitated about something.  Nonetheless, I asked him to finish two remaining worksheets and Robert complied.  But when we were done, Robert ran to my bedroom and brought back the old robe.  He wanted me to put it back on.

Only then I realized that what made Robert furious  was not the arrival of our friends.  It was not the fact that I went  outside.  It was not the fact that we took an unplanned break from our hour of study.  What made Robert frantically anxious was the fact that I changed my clothes in the way that broke all Robert’s rules governing time and clothes.

Robert changes from pajama to his day clothes in the morning and from day clothes to pajama in the evening. That is all the changing allowed. In special circumstances – dirty clothes or inappropriate clothes  precludes him from going out, Robert makes TEMPORARY adjustments for the occasion. Upon returning home however, he quickly switches to his previous attire even if it is time for a bath and a bed.

Although, I was sure that Robert didn’t mind my, rather chaotic, dressing patterns, obviously that was not the case. Since I was already wearing my comfortable, overused robe which meant unwinding and getting ready for lazy evening, Robert considered my change of clothes to be an anathema to the unspoken rules governing (to my surprise) our family life.

Just a couples weeks earlier, Robert had problems with his dad suddenly changing the pattern of clothes he wore after work.

Well, when I realized that Robert kept extending his dressing rules to his father and now me, I gave Robert a lecture on or personal freedoms.  That freedom include wearing whatever, wherever, and whenever we want.   I reminded him, what I had told him a couple of weeks ago, that each of that decides for himself or herself what we want to wear. Well, to the point.

I repeated this and similar statement  a few times, but I am not sure if Robert was convinced.

July 3, 2015

I waited for Robert near the stairs. He had finished his swimming lesson ten- fifteen minutes before.  It was enough time, to take a shower, dry hair, and dress up.  It was the fourth time he went to men’s locker room by himself. I was  anxious.  After all I couldn’t pick in and check if everything was fine. But here he was, coming up the stairs. His hair half dry and rather disheveled. I tried to flatten them, but Robert avoided my touch. He does that from time to time.

As we walked through the hall, I noticed that he put his white T-shirt backwards as it was visible from under his striped shirt he wore over it.

“Robert, you put your white T-shirt backwards”, I said more to express my surprise than to suggest correction.  I was surprised as it was the first time ever that Robert put his shirt backwards.  My words alerted Robert to the fact that the unthinkable happened and he wanted to remedy that travesty then and there. In the middle of the hallway he attempted to take both his shirts off. “No, no, Robert, you cannot do that here.  you have to go to the restroom.” I kept persuading Robert.  Three times, maybe four.  I pulled him by the hand toward the door.  He followed me to the waiting room and again, in the middle of it, he tried to take his shirts again. “No, no Robert.  You need privacy.  You will change your shirts in the restroom”, I repeated the same phrases two or three times.  Robert reluctantly followed me to the restroom’s door.  He went in and two minutes later he came out, his shirts in order.

I am glad that this incident happened. Although it caused a few electrifying moments, it also gave Robert an opportunity to learn more about privacy and socially acceptable or not acceptable behaviors. He experienced a problem and found proper response to it.  Of course, I don’t know what I would do if he didn’t listen to me but instead change his shirts in the middle of the waiting room. Not a big deal, it seems. Moreover, the people in the waiting room were all watching their children in the pool beneath and were turned backwards to us. 

But it is NOT about possible partial nakedness.  It is about aiming at socially appropriate behaviors.  It is about listening to mother’s advice. And mostly, it is about tolerating the discomfort of knowing that he made a slight mistake for one long minute before correcting it.  I wonder how Robert processed all those difficult undercurrents.

I am not sure if I didn’t point to Robert his backward shirt knowing that it would cause exactly the reaction I witnessed. It is possible that I was curious how Robert would respond.  It is possible that I wanted to learn something about Robert and I wanted to teach him something, even if I didn’t know what those things were.

July 2, 2015

I searched this blog looking in vain for an entry related to my decision, made a few years ago, to skip the whole Unit 5 of Momentum Math because its second chapter required the student not only to know Pythagorean Theorem but also to apply it to find the perimeters of irregular polygons. I chose instead to use Elements of Basic Geometry by Nancy Nichols to review facts known to Robert and introduce new concepts with the book’s simple approach. However, the content of Elements of Basic Geometry didn’t include Pythagorean Theorem.  My goal was to follow this curriculum any way and supplement it with lessons that would slowly prepare Robert for Pythagorean Theorem.

1. Practice counting squares of numbers larger than 10

2. Remembering (or finding a place from which to retrieve) square roots of numbers larger than 100.

3. Learning names of right triangles’ sides (legs and hypotenuse)

4. Reviewing family of facts to help transform Pythagorean equation to find not just the length of hypotenuse but also of  legs.

5. If appropriate, learning to estimate the square roots of numbers.

6. Applying the Theorem to complete problems from Chapter 2 of Unit 5 of Momentum Math.

That was the plan I had years ago. I have never followed through.  I was… scared.  I wasn’t sure if I could teach Robert all the steps I listed above. I was afraid that I would fail to teach Robert.  I was afraid that Robert would fail to learn. This is the fear I have felt many times.  Sometimes I overcame it, sometimes not. That time, I didn’t.  Instead I taught what seemed easy to teach and to learn. Moreover, I forgot about it.

This year, as Robert and I kept redoing Momentum Math curriculum, we got stopped by the same problem and yet again, I returned  Momentum Math back to the shelf and  brought back Elements of Basic Geometry to review and relearn. And as before I decided to “slowly prepare Robert for Pythagorean Theorem”. Exactly like I did before.

The strange thing is, that Robert is capable of learning materials from all the chapters in Unit 5 with the exception of the second.  They are much easier as they include topics Robert has been exposed to already or is even very familiar with.  

July 1, 2015

Not once, I wrote in these posts that Robert had difficulties listening to the stories which were read to them. It is possible that he learned to read so early on – as a way to avoid being read to.

https://krymarh.wordpress.com/2015/01/21/learning-to-listen/ 

Since he could read, there was no reason to read to him. Many times when his father or I started to read a book to him, he took the book from our hands and kept reading himself.  What he understood is another story.

A few years ago, we used Horizon Reading to Learn C-D curriculum.  I used Horizon textbooks and workbooks at home, and the school used it too. we only completed first two textbooks.  I am planning to use that program in the near future again.  Meantime, however, I found Literature Anthology,  a part of Horizon we have never used before. During the last two weeks, I have read Robert one story a day as an exercise in listening. I could call it “guided” listening.  Sometimes I stopped and made a comment as if to myself, sometimes I reread the passage wondering aloud how to understand it. Robert wanted to read himself, but I limited his reading to just one sentence on the page which I dutifully reread. I am not sure what I wanted achieved by doing that.  Today, I read Amelia Bedelia classic story.  Luckily, there were very few sentences on each page but many great, concrete illustrations which explained clearly  the meanings of words the way Amelia understood them.

What Robert understood is another story. I didn’t ask questions to check his comprehension. I didn’t ask because the answers had to be complicated and would require long chain of words Robert would not be able to produce. I settled for Robert staying with me all the time.  I also kept looking at his face trying to deduce from his expression if the story confused him or if he grasped  humor related to Amelia’s literal interpretation of phrases.

Only once I spied a sly half-smile.  Robert looked at the picture of light bulbs hanging outside on the clothesline.  They were put there by Amelia dutifully following the request to put the lights out.

At present, I am only reading  heavily illustrated stories.  I am not sure what images would Robert create on his own.  Illustrations give us common space where it is easier to find a common ground and common meanings.

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.