January 1, 2015

In the last couple months, I have not been writing much.  The truth is, I have to force myself to write. It has been much more difficult for me to untangle the knot of everyday small events to make a chain of clear, singular topics.  I feel unable to choose what to write about and what lesson  I, or anyone else, can deduce from singular episodes. The events that describe my, our, struggles and failures mix with episodes  that show  progress. But the progress is evasive and struggles are as easily forgotten as bad dreams in a daylight.   I don’t even know from which angle I should present our ups and downs. Moreover, I am not sure if ups are ups or downs are downs.  It all depends  on causes and effects.  Those, however, still remain murky as Robert never explains himself.

1. I made an apple pie and baked one sheet of  cookies.  I was afraid that if I baked too many cookies, Robert would eat them all. So I left a pound of dough for the next day. The dough disappeared.  Completely! Between 4PM and 11AM of the next day, it evaporated. Robert ate it.  I don’t know when. I don’t know how he managed to take a ball of dough and consume it. Nobody noticed anything. I was in the kitchen most of the day.  I didn’t see Robert around the refrigerator even once. It is not funny.  Next day, he was extremely cranky and angry.  I knew his stomach hurt.  But then, he said nothing.  So maybe there was another reason.

2. I wasn’t sure if I made a right decision in November when despite Robert protests, I refused to replace the bed sheet I gave to our guests with another one. Yes, it would be the easiest way to calm Robert who kept  insisting (INSISTING!) every 10 or 15 minutes that I take back the blue sheet and give the guests a white one.  In his mind, the blue sheet was supposed to be only for my bed while the white one was for anybody.  There is not hiding the fact that Robert’s  obsessive protests tainted the visit.  I explained to our guests the problem and the reason I felt I shouldn’t give up.  They understood and were supportive.  But I wasn’t really sure if I made a correct decision.  Two weeks later,  the sheet was torn apart in the laundry.  I had to throw it away together with another one.  I cut both of them  into smaller rags. Robert didn’t mind.  He put them in a plastic container with other rags to be used for cleaning. Another week later, Robert didn’t mind that we replaced old mattress with a new one. HUGE!  I am sure, that had I not withheld Robert’s protests in regards to the blue sheet, the both events would cause much more dramatic reactions.

3. With Robert’s sister and grandmother visiting, I had much less time to spend with Robert. The good thing was that Amanda, Jan, and Grandma kept him at least partially occupied. He went skiing to Vermont.  He went for walks.  He went to movies.  Still, I felt Robert was neglected. Maybe that is why during one boring afternoon, he ate the dough.  Not good.  Maybe that is why he found his  IPAD to be appealing again and watched Scrooge in three different adaptations of Christmas Carol. Not bad.

4. Today, I presented Robert with two workbooks bought by his sister. One about counting money, one about telling time.  The first ten or more pages were very easy.  Almost mechanical, but not exactly.  The workbook on time progressed in almost miniscule steps. Robert could work by himself for almost an hour. Huge.

5.  We all had champagne in our glasses.  Robert had too.  With a strike of midnight, each of us took a sip.  Robert too.  Then, he ran to the sink and  spit it out. Oh well.

December 24, 2014

Almost every year, a few days before Christmas, Amanda helped Robert to build a gingerbread house. She didn’t bake gingerbread but used kits purchased in stores. I am not sure if she really cherished that experience. I am not entirely convinced that Robert liked that activity.  For them, because of my insistence, it was the thing you had to do before Christmas. And it was not always easy. Making frosting by mixing powder with water could result in a watery disaster and a big mess. Often, Robert didn’t follow directions correctly. He pushed too hard, too little, or in the wrong direction and the structure collapsed. They had to start again. How frustrating!. But year after year they did it.

This year, I bought the Gingerbread Village Kit.  Robert opened it a day after Amanda came home. But he didn’t bother Amanda by insisting they do it that day.   He just waited patiently.  And waited.  Finely, this morning, they sat together at the dinner table.  We, the parents, joined them too.   Amanda, the experienced builder, was in charge. Robert attentively followed all the suggestions.  Over the years he learned by experience how much frosting he should apply and how much pressure he should use to make sure that the walls stick together. Jan and I felt slightly overwhelmed. We did not always know what to do.  We were  not much more than spectators. Still, our performing  children appreciated our admiration. That is right.  We couldn’t help but admire Amanda’s ability to show the way and Robert’s focus and efforts.  Mostly, however, we were touched by Amanda’s and Robert’s ability to smoothly and efficiently work in tandem.

December 31, 2014

This afternoon, Robert with Jan’s and my help (Amanda is back in France.) built four gingerbread sleighs.  Jan helped with structures and I helped with decorations. But our inputs were almost negligent as Robert was almost independent. If he was not completely independent, it was because we, his parents, wanted to be in involved too and thus we interfered with Robert’s creations. Luckily, he didn’t mind.

January 3, 2015.

As of this morning all four sleighs lost their gummy Santas to Robert’s stomach. The candies decorating gingerbread cottages and sleighs are gone too. Oh well, till the next year.

.

December 2, 2014

A few days ago, Robert again “read my mind”.  At this point, I will write without quotation marks and state plainly, “Robert read my mind.” He was supposed to answer a simple”yes and no” question.  Very simple.  I am sure he was capable of providing correct “yes” response.  I was so sure, that I dared to THINK  “NO”, believing that THIS TIME my thinking would not affect Robert’s reasoning.

But Robert answered “NO” .

We read one or two sentences prior to the question.  They were SOOOO simple. The question was simple and the answer was obvious.

Still, I KEPT THINKING, “NO” and Robert followed with “NO”.

I asked again, covering my mouth.  I knew that all too often Robert gets clue from watching my face.  I kept thinking “No” and Robert followed with “NO”.

I let some time pass before returning to the same question again.  Meantime I asked similar question while Robert and I were busy folding laundry.  Robert answered correctly.

We returned to the worksheet.  I asked again.  I covered my face again, leaving only eyes uncovered.  I kept thinking, “NO”.  I felt the confusion growing on Robert’s face.  Still, he felt compelled to follow my thinking.  He said. “NO”.

I am not gloating about Robert’s ability to read my mind.  I am deeply disturbed by that skill.  I have been trying for almost 20 years now, to extinguish that “talent”.  Almost 20 years ago, I discovered that Robert was answering correctly the questions he didn’t know answer to. He knew, however, what I knew.  I wrote about this phenomenon in two previous posts:  Teaching as Dismantling and ” Unclear on Yes and No, Following Body Language. When he was three, he deduced from unnoticeable to me movements of my arms what was the correct response.  My mind was talking to Robert through my arms.  I noticed that and redesigned the format of asking any questions from that point on.  Then I noticed, that my mind speaks to Robert through the way my mouth is silently shaping itself to produce the sound of the first letter. I kept covering my mouth when asking questions.  But Robert keeps reading my mind in ways, I am not able to even name.

And that is why he is not learning.  The more skillful he becomes in reading my mind, the less motivation he has to rely on his own brain.

He doesn’t use it, he doesn’t trust it at least in the context of our one on one teaching/learning.

“Reading my mind” is not a good skill, it is a barrier to learning and to some degree functioning efficiently in the world.

It is a problem.

December 2, 2014

I still cannot figure out the reasons why Robert and I spent Friday and Saturday home.  Jan had to go to work on Friday, but on Saturday, he didn’t have any appetite for going out either.

It might be that we just ate too much and the food made us lazy.  It might be that Robert’s gorging on black and white cake resulted in a stomach pain of some sort.  Any way, he woke up late on Friday. He moved from bed to bed as if he were looking for a place that would soothe his discomfort. He returned to his bed  and fell asleep again.  An hour later, I convinced him to get up by reminding him of the plans we had made the previous evening: deposit all cans and bottles and go to McDonald for lunch.  He got up, ate breakfast, but he was clearly not in a mood for going out. He was not in a mood for joining his friend who came for a morning visit. The friend understood, and left.  I mentioned a plan visit to McDonald, but that didn’t calm Robert either. He was not in a mood for any fast food place. He was not in a mood for anything really.

I didn’t know why he was making noises that didn’t say anything more than, “I am miserable. ” I didn’t know why he was miserable. As I always do when I don’t know what bothers Robert I followed with  attending to possible causes of physical discomfort.  Inhalator for possible tightness of lungs due to asthma.  Metamucil crackers for probable problem with lingering gases. Omeprezole for acid reflux.  Soothing words.

It got better. By noon, Robert still didn’t want to go out but ate some leftovers and a bowl of arugula. Moreover, he didn’t have anything against studying with me. We completed the whole unit from Reading Comprehension for Hyperlexia and Autism among other things. Robert studied for almost two hours, but he, nonetheless, didn’t want to leave the house.  I don’t know why.  In the evening, he rode on exercise bike for 20 minutes and helped his dad to start the fire in the fireplace.

Saturday, Robert didn’t dress up until  6PM.  But while in his pajama, he studied with me, completing the last unit from Reading Comprehension, washed dirty clothes, played Synonym Board Game with his father and me, watched TV, ate poblano and the remaining chicken cutlet, and enjoyed a very short visit of  another friend.  And no, he didn’t want to go anywhere.

Only when he was back in his pajama, did he state his plans for the following day, ” Ski, ski.”

Feeling guilty of not doing anything for two days, we drove two hours one way to Mount Sunapee, so Jan and Robert could ski for an hour and a half. Except, they didn’t check which trails were open and soon they found themselves with only one option – going down the black diamond trail. Robert stopped and looked at his dad questioning the sanity of the world which didn’t offer any good solution, then carefully and silently followed his father directions.  He listened as attentively as he had never did on easier slopes.  They both learned their lesson and before going up again, they checked what other trails were opened.

On a way back, we stopped at Food Court in Merrimack, NH where double cheeseburger seemed to provide for Robert the perfect ending to the Thanksgiving weekend.

November 29, 2014

Part 1

Every Thanksgiving,  as long as I remember, we spent either having guests or being invited to someone’s else home.  After all, this is the Holiday to celebrate the sharing with others.

But we didn’t do that this year.  This year we had Thanksgiving at home.  Three of us, Robert, Jan, and I.  Amanda is still in France.

Holidays were always difficult.  For different reasons. That was the time when I missed my parents most. That was the time when I felt more than ever how Robert differed from his cousins, as if he were moving on a completely different orbit, belonging to another planet.

As Thanksgiving was approaching, I was rather cheerless. I had an underlying impression of not belonging anywhere because I was not being able to forge connections strong and meaningful enough to provide a pleasant and enriching holiday experience for… Robert. As turkey was being roasted, Jan took Robert for a short walk and to a movie theater.  And then we sat down to eat.  Turkey, beets, Brussels sprout, stuffing, bean salad, and a few other dishes for Jan and myself. Chicken fingers, baked potato with cheese, and arugula for Robert. Three of us together. It was not a sad or lonely experience. To the contrary. It was a warm and fulfilling time.  We were together.  We talked a little, we laughed a little. Jan and I shared my first apple pie in15 years.  Robert ate cookies we baked together. We all drank tea after dinner looking at each other, smiling,  and chatting as much as Robert could muster.

It was surprisingly a wonderful and relaxing Holiday.  And then I realized that the thing that I missed most on those other Holidays was… Robert.

When we had quests, or when we were invited, Robert seemed to be separated from us more than on any other day.  I realized that as much as I like company of others, I do tend neglect Robert when the guests come. He seems lost and moves chaotically not sure where he belongs and what should he do.  I don’t help him. Maybe because I am too busy talking to others, maybe because I don’t know how to help him.

It might be that what bothered me most during those other Holidays was that I lost connection… with Robert.

Of course, that is the Holiday’s conundrum.  You should celebrate the closeness of your family and its openness to others.  You should nurture your  inner relations of your family circle and you should cultivate and enforce the ties that connect your family with friends and distant relatives. During my childhood in Poland, it was easy to manage those contradictory undercurrents of celebrating. We had two days of holidays for Christmas and for Easter. One day we spent in a close family circle, the second day was for going out and/or inviting others.  Here in America, I always spent holidays as f it was that second day and never as it was the first.  It was American Holiday of Thanksgiving that allowed me to understand that.

November 22, 2014

The title is not appropriate. As of now, I didn’t discover any rules that would govern Robert’s overnight stay outside the house. During our last trip, as well as during our previous trips, Robert accepted all kinds of sleeping arrangements. Of course, he preferred hotels with swimming pools, but didn’t complain about hotels without them.  During our trip to France and Poland, we stayed in different hotels, a cottage, a bed and breakfast, and with a family. If Robert found any of them more or less comfortable than the others, he didn’t share that observation with any of us. He was a relatively gracious guest in any place he entered.

Sadly, Robert was not a very gracious host, when his aunt and uncle came for a two day long visit.   Don’t get me wrong. He loves his aunt and uncle. When he heard that they were coming, he worked diligently with me on cleaning the house.  The house, after our trip to Europe, was in a rather bad shape. Robert vacuumed, brushed toilets, washed sinks, carried garbage out, and kept doing laundry of all the needed bedding.  He accepted, ahead of time, the fact that he needed to give the guests his spare comforter and that I would do the same.  However, he didn’t assent to giving them a spare queen sheet set as he considered it belonging to my bed.  He offered other sheets: blue, white, and purple  Unfortunately, they were all twin sizes Reluctantly, he acquiesced, but the pain of doing something that went against HIS unspoken rules of the house, bothered him for all two days and thus he bothered us also.

I consider it a great achievement on his part, that he waited until our guests’ day of departure to remove the sheets, wash them, fold the sofa, and enjoy the return of the previous order.

The other issue arose, when Robert wanted to go to bed.  Our rather pleasant  routine came to bite us when the circumstances changed. Every night, when Robert is ready for a bed, he expects us, his parents, to be in our bed too.  His father can keep working on his laptop.  I can watch Netflix on my IPAD. But we have to stay in bed.  The matter of fact, Robert brings me  IPAD and places a glass of water on my nightstand.  Only when everything is ready for his parents to take a rest, Robert goes to his bedroom.

Well, on Thursday evening, Robert wanted to go to bed earlier than usual.  Probably, because he was tired.  That meant that his parents should go to bed too instead of entertaining themselves and their guests. Moreover, my other friends arrived, as they usually do, around 8 PM.  It never was the problem in the past, but this time Robert really wanted to go to bed early.  As we were drinking tea, wine, and eating a pie, Robert kept coming over to remind me, “Mama bathtub, mama bathtub.” Which meant, “Take a shower and go to your bed.” Over and over. He was also looking for any empty cup, goblet, or saucer to pick it up and carry it to the kitchen sink. Robert deduced that if there were no dishes, there would not be any temptation to eat or drink more.  So some guest would leave and some would go to sleep.  We responded to Robert’s removing empty dishes by keeping always something on the plates and something in the cups or goblets.  I also asked Robert to do small jobs around the house – empty a dishwasher, fold the last basket of laundry hoping that this way, I can gain a few minutes without hearing, “Mama bathtub, mama bathtub.”  Robert complied but soon was back with  more, “Mama bathtub, mama bathtub.”  To make his request clearer, he brought my night-gown.  I gave up.  Since I noticed that the guests were having very nice time talking, and knowing that Robert’s aunt could easily replace me in the role of the hostess, I withdrew to my bedroom.  Robert brought me a glass of water and IPAD and went to his bedroom.

Robert’s dad, by the way, was already asleep with his laptop still on.

November 21, 2014

After a break, we returned to studying together. Robert has less time now, as since the beginning of November, he goes to his Program four times a week. If you add swimming, horse riding, and one evening socializing with a friend, that doesn’t leave much time for studying.  Still, if he doesn’t study, he doesn’t do anything at all in his “free” time.  Robert’s fascination with Netflix, somehow evaporated.  Moreover, now, when he goes out a lot with his Program, he notices the importance of learning.  At least  learning some of the things that might be useful.

1. A lot of language exercises. Of course, pronunciation. I used two books to guide me through the process: Becoming Verbal and Intelligible and Functional Language  Walc 6.  I know that exercises in both books should be presented by speech pathologists.  The only thing I can do, is to type the words on Speak It  APPs on IPAD, listen and repeat. And that is what we are doing. I don’t believe I am helping a lot, but this is better than nothing.

2.Walc 6 Functional Language by Leslie Bilik Thompson addresses many other aspects of language development.  Sadly, Robert needs all of them. “Yes and no” answers, guessing what the characters are saying in simple drawings, following directions, concepts related to time and space, and so much more. The thing that bothers me is the fact that this book just like almost all other related to language do not sufficiently address lack of speech initiation. More teaching how to answer questions than how to ask them. And almost no room for spontaneous commenting.

3. 150 What’s Wrong With This Picture? Scenes provides opportunity for unprompted talking.  I simply open the book, and wait for Robert to point and name things that are wrong. After he uses one or two words to say what is wrong, I confirm his response by using a full sentence.

4. We have returned to Talking in Sentences and Teaching Kids of All Ages to Ask Questions.  But at this time I changed approach a little. For instance I ask only one question and wait for the answer, and then ask Robert to tell me about what he sees or deduces from the drawings.  That extends Robert’s speech production and forces him to use his own tools to go on without being “helped” or “interrupted” by my questions.  The second book I also use as a model to help Robert ask questions that relate to his surroundings and his experiences.  Yet, I wouldn’t know what to do, if I didn’t work with those books before.

5. We go on with Reasoning and Writing Part B. Yesterday, we finished lesson 38.  Last few lessons offer the opportunity to work on understanding issues related to pronouns in written texts.  Through the funny story of a writer, Mrs. Hudson, and an illustrator, Zelda,  Robert learned  what problems could arise with understanding of the sentences when pronouns could point in two different directions. For instance we could end up with children playing in the mud while the pigs are watching instead of other way around.  The last few lessons also address geographical directions.  Those Robert knows well, but it is still good to him to practice where one character is in RELATION to another.  Robert does well there. And of course, there is a little more writing.  The program offers a template sentence and then with the help of bank of picture-words Robert can make concrete sentences.

For instance, based on a sentence: “Someone is eating something.” Robert can write many other sentences by substituting words “something” and “someone” with appropriate nouns.

6. We still do math, but mostly we review, reteach,  and relearn old concepts. This time we support ourselves with Standard edition of Fourth Grade Singapore Math.

7. Results for Adults Cognition is a new book I am using to address old problems in a new way. I only use a part of each unit, and not everything even in that part.  Again, I am still figuring out ways to use this book in a way that would be relatively simple for Robert.  There is a lot about short memory exercises. For instance remembering the name of the person in the picture.  I know that if I would say that name only once, Robert would repeat it, but forgot it a few minutes later.  So after I present the name and Robert repeats it, I am asking another question about that person, for instance “Who is standing next to the wall?”.  Then every minute (that seems to be a very long time) I ask similar question about the same person.  As, I said, we just began working with that book, which luckily has many good topics related to a real life and that seems to be what Robert likes.

November 19, 2014

I was afraid of our trip to Poland even more than I dreaded visit to France. Thirteen years have passed since our last family trip to Poland. Thirteen years ago, my mother was alive.  Her husband was alive. We could stay in their house. Robert was 9 years old, and still relatively small. Amanda, 11 years old at that time, was already a great role model for Robert and thus a great help. We, the parents, were not 50 years old yet.  We weren’t rich, but we weren’t as financially stressed, as we are now.

I knew that people usually look differently at 22 years old, big man with autism than they look at 11 years old boy, small for his age.  Yes, I was afraid how Robert would feel and behave in homes of his relatives, and his parents’ friends.  But to some degree, I could predict possible problems a new environment might cause.  What I couldn’t predict was how other people would treat Robert. Moreover,  I couldn’t predict how I would feel and react in response to their attitudes toward Robert.

When Ewa B. welcomed us at the Katowice Airport inviting us for a breakfast, I was both deeply touched and petrified. It was such a great feeling to still have  someone waiting for us, many years after our last trip and yet I was afraid how Robert would behave, and how he will be treated. I tried to decline the invitation, but Ewa’s will was stronger than mine. Four of us, Robert, Amanda, Jan, and I,  came for a wonderful breakfast. The best cheeses, one of a kind hot sausages, fresh bread, and strong coffee.  For Robert there were his favorite crackers, as in new places he usually sticks to his comfort food.  As we ate and talked I felt my reserve melting, my fears evaporating.  Robert was welcomed as much as we all were.  And he knew that. He behaved  appropriately despite not understanding the language we were using. At some point, Robert wanted to leave.  He calmly, in his own wordless way, began to clean up the table of already emptied plates and cups. We didn’t mind that as our stomachs were full and we had a long way ahead of us.

After that first visit came many others.  We met our relatives and friends many times during this trip.  We visited their houses, met with them at hotels and at restaurants.  Many people didn’t know English and yet talked to Robert. Although he didn’t understand the words coming from the foreign language, he felt what they were saying because he responded with smiles.