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.”

May 26, 2015

Every week during the last few years either my husband or I drove Robert to the pool for his swimming lesson. When Robert came with me, he usually went to the family locker to shower and change clothes.  When Jan brought Robert to the pool, they used men’s locker room.  Over the time, I tried to stay outside while Robert was changing clothes and only peaked if it took him too long to get ready for swimming or for a trip back home.

When Jan was taking Robert to the men’s changing room, he worked on similar skills and more. He wanted Robert to do everything independently beginning from entering the room to entering the pool’s deck and waiting for his lesson.  Under Jan’s directions Robert could not only to do that but also upon finishing lesson he was able to go back to the locker, take a shower, get dresses, and go upstairs to the parents’ waiting area to meet Jan.

Just last Thursday, instead of using the family changing room, I directed Robert toward men’s locker.  I told him to meet me on the other side in the swimming pool.  Robert hesitated but went inside.  I rushed to the pool and waited there. But after a few minutes I decided to wait by the door I left Robert.  I went there and minute later, Robert already in his swimming pants came out.

I think he tried to reconcile two different experiences – going to the pool with me and using different entrance and going to the pool with dad and using men’s locker.  He was not really sure what that change of rules meant for him.  I asked him to go back to the pool by passing again through the men’s changing area. He hesitated, but went there.  I rushed through other door to the pool.  Soon Robert appeared.

It was less confusing for Robert to change after the lesson.  His teacher, Lucinda, pointed to the glass above the pool to show Robert that I was waiting in the same place where dad waited for him last time. Robert accepted that change without any hesitation. He entered the men’s locker and 10 minutes later he met me waiting by the other door. No, I didn’t wait upstairs.  I was too anxious. I went down and waited by the door.  I am not sure how uneasy is separation for Robert.  I know it is still hard for me.

May 12, 2015

Robert had a busy Saturday.  He studied in the morning: fractions, identifying problems, natural resources (What the earth give us?) Later, we all went for a walk to Castle Island in Boston.  We all walked around Pleasure Bay.  As the path led between the bay and the ocean, we all could feel strong,  freezing wind overmatching our spring jackets. There was no time to stop, look, and talk.  We just hurried to escape the cold we subjected ourselves to as we were  fooled by bright sun and a very few clouds we saw at the parking lot.   So there was no explicit teaching there.

In the evening dad took Robert to see the movie Avengers. That was another attempt to have Robert watch more age appropriate features.  Well, Robert was a little scared and in the most scary moment requested to go to the bathroom more for a short break from the tension than for any other reason.  Nonetheless, he overcame his fears, and seemed interested in the action.  At least as interested as his dad was.

On the way home, they stopped at the grocery store to buy a few items.

The most important development of the day (a week, a month, a year) happened between the trip to the Castle Island and the drive to the movie and it had everything to do with an eggplant.

No, on Saturday, Robert didn’t participate with preparing his meal.  He was too tired for that. I made breaded slices of eggplant with mozzarella cheese, tomato sauce and many herbs.  Robert began to eat.  I rushed with a napkin, not really believing that it would prevent Robert’s shirt and jeans from being covered with tomato sauce.  Based on past experiences, I knew that it was a lost battle.  Yes, Robert would use the napkin.  But he would use his pants and shirts also.

And that was a problem because Robert hated to change his clothes in the middle of the day.  He had done it in the past when being told, “If you don’t put clean shirt and pants on, you cannot go with us.” That meant no walk in the park, no bike, no restaurant, and no movie.  So Robert would change,but he didn’t like it and demonstrated his displeasure with loud vocalizations, dramatic gestures, and moving back and forth between the drawer with clean clothes and me hoping that I would give up. I never did, but I didn’t like that either.

So this time, as I was handing Robert a napkin I wanted to prepare him for the need to change his clothes after eating.

Giving Robert  ahead warning could later lessen his resistance to change.

“Remember that you need to change your clothes if they get dirty”, I said this as a reminder and left Robert with his eggplant.  Well, 20 minutes later, the eggplant and the sauce were gone, all the dishes were already rinsed in the sink, and Robert’s shirt and pants didn’t have one tomato stain.  Nothing.