October 7, 2015

The last ten days were quite eventful. It is hard to write on such days.  Sometimes such days leave me in a state of exhaustion without energy to write. Sometimes such days leave me confused and not able to make sense of the events that took place. At the same time, they fill my mind with doubts, questions, half-baked analysis, and contradictory hypothesis as to whys and ifs.  why something happened and if it could be prevented or handle differently.

I suspect that writing about the different situations we were placed in or events we had to participate would be more interesting and in a way more informative than writing about our every day studying  together.

However, the hours during which Robert and I are teaching each other and learning from each other are priceless specially during the days with unexpected problems.  Those hours offer stability, bring calm and very needed feeling of accomplishment and moving forward.

So we have been studying together:

1. Practicing all four operations on fractions. (6 th grade)
2. Interpreting and making different graphs to display data.(6th grade)
3. Using parallels and meridians (lines of latitude and longitude) to find different places on maps.(not sure 5-6 grade?
4. Completing analogies. (4-5 grade)
5. Reading Comprehension (3rd grade)
6. Singing (Preschool)

The singing is the most important because it is something relatively new. I sang to Robert when he was one year old and three years old and maybe when he was even four years old. And then I stopped. I stopped because he never joined me in singing. I suspected that he lacked ability to change the pitch of his voice. I knew that all his utterances were extremely short as he clamped the sounds together, shorten or completely skipped some of them. I also noticed that he lacked the ability to space syllables. I tried to prevent that by teaching Robert to draw imaginary shapes in the air with each corner representing one syllable for three or more syllables words.  Segment or swing for two-syllable words  and all sort of movements to help Robert pronounce long sounds in one syllable words or two consonants in CVC words.

Sadly, those methods didn’t improve quality of Robert’s speech. Only when I prompted him, he would use one of the methods to say the words or phrase more clearly. Thus, I came back to singing as the tool to practice rhythm and lengthening of sounds.

For last 5 days, Robert and I, with the help of the piano, have been singing.  The same few songs every day. Hot Cross Ban;  Shoo, Fly, Don’t Bother Me; Hickory Dickory Duck; Are You Sleeping; Bingo; Mary Had a Little Lamb; Hey Diddle Diddle. 

Yes, we are definitely in preschool and it hasn’t been easy. Robert certainly can change the pitch of his voice and that is the great achievement and surprise. But he  does that only a few times per song, the rest he recites with many  omissions. 

Yes, preschool is very hard, that is why Robert would rather draw double bar graphs, or list all the US cities   between 40N and 43N parallel.

September 23, 2015

During our weekend trip to City and State of New York we ate at two Diners. In both of them, Robert ordered the same dish: cheeseburger and fries. However, he hardly touched his meal  in the first diner while he clearly enjoyed every bite of the food served in the second diner.

Two weeks ago, Robert refused two small band-aids offered by phlebotomist to cover puncture wound caused by blood test in case the one Robert already had on will fell off.  Robert protested with very loud, “No, no, no”, and was very agitated.  When he is in such a state, there is not much for me to do. I manage to persuade him, to at least replace the band-aid that was already slipping of his arm with a new one (which didn’t hold either as his arm was covered with lotion earlier on) and exit leaving another band-aid in the lab.

A week ago, as a conclusion of a visit to his allergy and asthma doctor, Robert was given a spacer with a mask, a medicated shampoo, and pockets of special face cream. For a few second he hesitated if he should accept any of those items. His hesitation, however expressed itself mildly as slight movements of his hands toward himself and toward the nurse.  There was, no loud protests, no effort to leave everything on the physician desk.  After a few second of silent deliberation, Robert handed me each item expecting me to place them in my purse.  Which I did.

Robert’s opposite reactions to two hamburger plates and to getting things from two medical establishments forced me to realize obvious fact.  Robert doesn’t take anything at face value. He differentiates between things and event based on their qualities.

There was nothing wrong with the fries and hamburger in the diner in New York City.  They were not poisonous or undercooked.  Still, they were thick, yellow, and bland. I tried one fry. It was not appalling, but it was not tasty either. Even dipping it in ketchup or Robert’s favorite honey mustard sauce wouldn’t enhance the taste. I am not sure how the hamburger tasted, but even the cheese on top of it didn’t convince Robert to try it. Maybe that was something about the smell of the oil they were cooked in, maybe there was something added to the meet.  I don’t have any idea.

But, the fries in Hudson’s diner were thin and orange.  They were made from unpeeled potatoes.  They smell as they should.  At least as they should smell for Robert. It might be that diner’s insistence on using only organic products resulted in better outcome.  Maybe the chef who only used organic product treated the food with higher regard and thus put more thoughts and efforts into preparing his dishes even the simple ones.

There was nothing wrong with the way phlebotomist treated Robert.  She really tried to accommodate him. She took his blood in a professional way.  Robert remained calm throughout the procedure although he was slightly tense.

I do have difficulties trying to understand Robert’s varied reactions to getting extra items from both places. The only difference I could notice was the ease Robert was treated by his allergy doctor, her nurse, and her assistant.  He met each of them separately, but all of them were relaxed while working with him, be it weighing him, listening to his lungs, checking his throat, or practicing with him breathing through the spacer with a mask. They not only knew Robert from previous visits, but they probably already met many children and adolescents with special needs. They were at ease, so Robert was at ease too.  When Robert is relaxed he is more open to new things and to  persuasions.  It is a two-way process.

As wonderful as the phlebotomist was, it was clear that she was tense.  She became concerned as soon as I told her that Robert had special needs. She immediately warned me that she might not be able to take Robert’s blood if he would act up. I told her that in the previous year he had his blood drawn twice without any problems and I hoped that she would relax. She probably did… to some degree.

She was calm on the outside but she felt uneasy.  I sensed her anxiety, so Robert had to feel it too. When he senses another person’s anxiety he responds with his own. As a result he stops listening to the person and is directed by the environment of things and his own rigid rules.

September 11, 2015

This morning Robert had a blood test at Quest Diagnostic.  Nobody was in the waiting room when we arrived.  Robert waited patiently until I registered him.  He bravely stretched his arm and watched attentively as the phlebotomist prepared the syringe and two vials.  The muscles on Robert’s face were tense, and they bulged slightly when the needle pierced his skin. Nothing else. Robert  waited calmly until two vials filled with the  dark red substance. Everything went so well.

I was so proud! It is true that the last two blood drawing went equally smoothly. I remember, however, the times when three people had to keep Robert to prevent  his limbs from kicking, twisting, hitting, and moving in all possible directions so the blood could be drawn or allergy shots could be given.  I knew how scared he was then, years ago.  So I also knew how brave he tried to be this morning. It was an achievement. No doubt about that.

So I was proud.

Until I heard  Robert’s loud protests, “NO, NO! NO!! NO!!!! The event that induced such strong objections was simple. The phlebotomist tried to give Robert two extra Band-Aids, because the one he had already became loose. It was my fault as in the morning I put lotion on Robert’s arm making his  skin was too slippery for the glue to stick to it.  That was a reason the thoughtful phlebotomist offered two extra for later.   Unfortunately,  Robert has very strict rules about NOT taking anything from one place to another. Taking two extra band aids was out of the question.  They were, after all,  the property of the lab and they could leave the lab only as a part of the complete procedure – attached to the pierced vain.

The “No, no, no” was loud, sudden, and thus very scary.  I apologized and explained, but it was clear that Robert’s protests left some aftertaste on everybody in the lab.

It was not the first time that Robert was able to handle the  painful situation with  great maturity and understanding, but fell apart when small things were out-of-place.

A few years ago, while the dentist was fixing his teeth, Robert used the first moment when the drill was out of his mouth to jump out of the dentist chair. We all – dentist, dental assistant, and I -were in shock convinced that Robert would run out of the building in state of great animation.  He, however,  in a fraction of the second,  reached the drawer next to the sink. It was slightly open.  Maybe quarter of inch. Robert closed it and then calmly returned to the dentist chair ready for the next phase of drilling.

September 9, 2015

A few months ago, I purchased a workbook 100%Curriculum Vocabulary for grades 6-12. Robert knows more or less 10% of those words but he is not using independently any of them. So why then I decided to introduce to Robert  words related to community, government, health, and keyboard?

Well,  Robert lives in the community.  He has checking account, he is involved in taking care of his own health, he uses his  computer skills, and he has to understand, at least to some degree, the role the government plays in his life and the lives of others. Those are very hard lessons for me to plan.  I did not know where to begin.  So although starting with vocabulary might not be the best way for Robert to learn, but it is  the easiest way for me to teach.  The words offer the starting point. They are like primary colors from which all other colors and all other pictures can be created.

Of course there are limits to what I can create, what I can teach.

For the whole week, we practiced words related to money – gross pay, net pay, withholding, interest, balance.  First almost mechanically using word search puzzle and a crossword, then practically with the help of Robert’s paycheck, and his bank account.  Robert found out that he was paid biweekly, that one of his gross pay was $8, his withholding was $0.69 which left him with net pay of $7.31. He also found the balance of his checking account but couldn’t find the interest.

For next few months, every two weeks,  with each new pay check, we will practice these words again and again. That is not as terrible as it sounds. It won’t take more than a few minutes each time.

September 8, 2015

One of Robert’s achievements I heralded on those pages was his ability to use men’s locker room while going to the swimming pool.  For many years we used family locker room so I could assist Robert when needed.  Later, he was using it alone, while I waited outside by the door. Still, I could enter any minute.  That was not the case with the men’s locker room.  It was Robert’s dad who assisted him there preparing him for doing everything independently. At some point, he kept leaving Robert by the door and waiting for him in the pool.  After the lesson, Robert met his dad in the waiting room upstairs.

So I dared to do the same. I left Robert at the door to the changing room and waited for him upstairs.  Well, not exactly.  The first time, I decided to wait outside the door afraid that Robert might look for me where he left me.  I was right.  Soon enough, Robert in his swimming pants opened the door on the side of the hall not the pool.  I directed him back, telling him to go to the pool. He went.

One time (as I wrote in another post) I made a mistake of telling him that he put his white T-shirt backwards and Robert attempted to change it in the middle of the waiting room. Luckily, he allowed me to convince him to do the same in the restroom.

One time, when he was not leaving the changing room for extended period of time, I asked Robert’s cousin who visited us during vacation to check on Robert. He told me that he found Robert half-naked, contemplating his clothes. A few words from the cousin sufficed to make Robert dress quickly.

And then there was that:

I waited for Robert upstairs in the waiting room. Somehow, I felt anxious.  I wasn’t sure what could happen, after all Robert never bothers other people.  He can take shower, he can dress, he can dry his hair.  Still, the anxiety forced me to go downstairs and wait by the doors to men’s locker room.  I felt pretty silly staying there, so I kept reading over and over the same ads on the bulletin board.  suddenly, I heard a very loud “No, no, no!!!!” Very loud.  Robert was protesting something.  Very loud! Such protests have the power of intimidating almost anybody.

Well, I opened the door to the small hallway (not to the locker room, which was behind the side wall) and called on Robert to come to me immediately. Robert didn’t come.  Instead a man with a little boy hurried to the door.  He seemed very confused.  He held glasses in his hand. He told me that the glasses were laying on the bench.  Robert picked the glasses and when he saw the man moving to the exit, he followed him to give him the glasses.  When the man tried to put the glasses back, Robert protested strongly, “No, no, no!!!”  At first I didn’t know what to do.  The man gave me the glasses and told me that nobody but Robert was in the locker room.  Still, I didn’t want to go in.  After the man left, I opened the door again and called on Robert.  This time, Robert came.  I told him to put glasses back on the bench.  Since Robert didn’t see anybody else to whom he could give the glasses, he complied with my request.

I know, I know.  Robert meant well. Since nobody was in the locker room, he assumed that the glasses belonged to the man and thus tried to force him to take them.  He didn’t understand that someone else who was not there could leave the glasses.  maybe that is one of the example of “Theory of mind.” Unfortunately, Robert puts so much energy in his vocal protests that one might be scared of him.  That is not something I take lightly.

I wonder, how many other unforeseeable problems will trip Robert over in the future.  How many?

September 6, 2015

I, probably, wrote about those “techniques” before in a few of my posts. Helas, I won’t find them now among 300+ other pieces of writing. I realized today, that our family’s life became so much more pleasant because of a few very simple tools that manage Robert’s behavior …and ours.

1. Giving choices.  “Do you want to do A or B?” I ask Robert. He answers.  He might not really voice his preference, but I kept sticking with his answer as a way to install clear understanding of what choice is.  Sometimes the choices are of the same nature or value to Robert. “Do you want poblano or eggplant for dinner?” It is important to provide alternatives specially to someone who has difficulties expressing his or her wishes independently. Robert won’t come and tell us that he wants to go for a walk, or to the movies, or anywhere else.  But he is capable of making a choice when he has the list of options.                                                                                                                                                                                                   Often, I give Robert “unbalanced” choices knowing perfectly well, which one he prefers. “Do you want to study or watch TV?” I ask when I want Robert to, well, leave me alone for a short while.  He chooses watching TV and that allows me to have a calm conversation with a friend who stopped by or talk on Skype with my daughter.
2.  Five more minutes. Interrupting Robert when he is watching Netflix,  folding laundry, or eating  by calling him to do something else is not a good idea.  Robert needs time to prepare himself for the next activity. When I say, “Robert, we will study in five minutes,” Robert  doesn’t have to jump and come over immediately. He has time to prepare myself mentally for the next activity.  Not once, he surprised me by coming to the table and waiting for me patiently as it is I who forgot about asking Robert to learn with me.                                                                                                 Five more minutes   also gives Robert a toll not to refuse my request straight forward but to delay the compliance. Although, there are times when Robert overuses that phrase, it is a nonetheless one of the most important language tools he has.
3. First, then tells Robert the order of activities.  That construction, later augmented by the whole list of activities following each other, has resulted in Robert patiently assisting me in doing chores: bank, post office, stores.  At the beginning,  I included McDonald at the end of the list.    I don’t do that anymore.                                                                                                                                                                                                               First, then also encourages Robert to finish the  less preferable activity before the  one he likes more.  “First we finish folding laundry, then we go for a walk.
4. IF is not exactly the same as, “First, then” although they are closely related and sometimes interchangeable.  When I tell Robert in the morning, “If you want to go to Lifeworks, you have to get up now, ” I both give him a choice and the condition. Of course, when I say that I know that Robert wants to go to Lifeworks.  Although, he wants to sleep longer, he wants much more to go to Lifeworks.  Only when Robert felt very sick, he chose “sleeping longer”.  The IF has been invaluable tool to managing Robert’s behavior specially in those cases when the change in routine was called for or something new was introduced. “If you want to go to Outback restaurant, you have to put on new shoes.”  “Only if we buy you a new shirt, we can go to the Applebee’s restaurant.”

There are other tools which have helped me to deal with some of the excesses of Robert’s behavior. Very rarely now, I have to use, for instance “extinction and redirection” , although that still happens.  (For instance during recent blackout when explanation didn’t help ignoring and redirecting did calm Robert down significantly.) I would still use over-correction, I that were necessary.  It is not, because Robert keep his environment in place without being ask to.

I don’t interrupt when Robert is in the middle of closing the doors that were supposed to remain open.  But as soon as he closes the door, I tell him, ” It is important for me that the door is open.  Please, open the door.” Robert complies 99% of times.  If he doesn’t, I pretend I don’t notice that.  Half an hour later I ask again.  So far, it worked.

https://krymarh.wordpress.com/2013/05/13/discovering-the-path-of-microsteps/

https://krymarh.wordpress.com/2012/07/16/overcorrection/

https://krymarh.wordpress.com/2012/03/24/while-i-was-teaching-him-to-glue-stickers-he-was-learning-whats-important/

August 24, 2015

Robert doesn’t like when the things disappear. The matter of fact neither do I.

A couple of years ago, Robert suddenly became agitated as he couldn’t find one of his three favorite dinner plates.  He seemed to check everything: cupboard, dishwasher, refrigerator, and all the rooms. To calm him down, I decided to find the plate myself.  I couldn’t.  I looked in all the typical places, which Robert had checked already and in less typical places such as the garbage containers, under the furniture,  garage, and  the laundry room.

I knew it was irrational to look inside the washing machine or the drier for the dinner plate, but not as irrational as  sudden vanishing of the dish. As my search became more and more futile with every absurdly chosen place, Robert became more  and more and more anxious and fixated on the plate.

But then, so was I.  Yes, I knew that the aliens didn’t kidnap the plate for whatever purpose.  I knew that the robbers didn’t sneak inside the house just to grab one old plate.  I knew it.  But then, what other explanation there could be for the vanishing  of the plate?

Well, there was another explanation.  The plate was waiting in the microwave still holding some forgotten food. (I don’t remember what.)

I don’t know who discover it, but both of us, Robert and I , were greatly relieved. We certainly didn’t want aliens or robbers sneaking behind our backs.

It was then when I  realized what Robert probably  felt when we had disposed of some of the things without his knowledge.

Because Robert always had difficulties parting with things, we erroneously believed that it would be more convenient to get rid of the unwanted things when he was not present.  Big mistake.  Robert wouldn’t cease looking for missing items and that including searching through all garbage cans.

We have learned that if the plate breaks, Robert has to see the broken plate before placing it in the trash.  Robert has to see his worn out clothes torn to a few pieces before letting them go in a rag hamper.  Only that can stop him from hours if not days of searching and asking and demanding an answer.  However, the verbally provided explanation is not as convincing as visual clarification. As they say, “The picture is worth thousand words.”

To explain the disappearance of an everyday article, more than thousand words are needed.

August 23, 2015

After long period of not writing, I lost focus and have to pick up the pieces.  This sentence doesn’t explain my difficulties as they are only partially caused by both the abundance and the vagueness of experiences and observations. My difficulties are caused mainly by my inability to write in an organized matter.  I am not able to state what is the main topic as, so called, ” supporting details” often seem more important than the main idea. Moreover, those details often support completely different conclusions. And the conclusions all too often do not clarify my understanding of Robert, but lead either to see him as a simplified stick figure or force me to suspend the judgement.  There are simple facts that can be easily noticed and described, but it is much harder to understand what is behind them.  What is their purpose or the cause. What model of  the universe causes Robert to do things in a certain way.

SETS OF THREE

Robert chose three different shirts to go with three different pants and three pieces of underwear.  Only Robert knows what goes with what.  Of course, his closet and his dresser hold more than three of each.  But for Robert, those additional articles of clothing do not exist.  He wears only one of the three.  Moreover he makes sure that they are always accessible to him. Thus, Robert’s preoccupation with laundry.  When two sets are already in the laundry hamper, Robert starts laundry.

Of course, the clothes wear off, they get holes, they get too tight, or they even break beyond repair. Robert still wants to keep them in his dresser until it becomes obviously clear to HIM that they cannot be worn any more.  That is my call to action. If there is a hole, too small for Robert to consider parting with his shirt, I made it bigger, when he doesn’t watch.  I might even tore it into two pieces.  Then, Robert puts those two parts in a hamper with other rags and….

And only then he chooses a replacement from remaining items of clothing. It still has to be three of each.

My job is to make sure that there is a fourth piece of each, just in case.

FOUR PLATES FOR FOUR (or more) POBLANOS

After I remove the seeds and ribs from the peppers, broil them in the oven, peel them, stuff with mozzarella cheese, cover with flour, dip in the egg and fry them in the oil, I place them all on a serving plate.  Robert will eat all four. But for each poblano, Robert will take a new plate and a new fork.  By the time he is done eating, four medium size plates and four forks land in the kitchen sink.

Although Robert is perfectly happy with one plate for a few pieces of chicken tenders, one at a time, or for 3, 4, or 5 pieces of eggplant parmesano, for poblano he makes exception.  Moreover, those plates are always the same four. If any of them is dirty, Robert washes it and dries it, to make sure he can put poblano on it. No other plate will do. When, however, I made five poblanos for Robert, he didn’t take another plate but ate it on one of the chosen four. Lately, Robert learned to leave one poblano for his dad. For that special arrangement Robert takes the fifth plate not really caring  which plate to choose.

He tried to use the plate even when it had a visible crack. Again, when Robert didn’t look, I broke the plate in half.  Robert inspected the plate, tried to put the two pieces together.  It didn’t work so he threw them in the garbage. Then he chose a replacement plate to join the other three still intact.

I assume that having three of each items of closing helps Robert simplify and organize his morning dressing routine. I am not sure, but this seems logical from my point of view. I am not sure however, what is the purpose of four plates for four poblanos.  Is that simply the result of obsessive compulsive disorder – the need to do it the same way every time? Well, OCD  could be a good name but not an informative explanation. 

August 7, 2015

I haven’t written for quite a while. Moreover, I haven’t been studying with Robert regularly.  There were, they still remain,  many distractions.  We painted some of the rooms. One room was painted on each of the four weekends. We had four different guests, each  staying at least a week. Robert was sick.  I was sick.  Maybe because of  that and a few additional demands put on our family life I couldn’t refocus on Robert.  I couldn’t find energy for an evening study hour. Besides, it was very hot and a constant noise from the running air conditioner didn’t help either. The two-hour long power outage was another unusual event, not without consequences.

For me, and I believe for Robert, the most important lesson of that time was to  adjust to changes or to  learn how to survive  with the slightest possible alterations to our lives.

Painting

At first, Robert was very much against it. He tried to put the furniture back by the walls.  He kept taking ladder back to the garage. But at some point he resigned himself to the inevitability of painting and started helping. He must have understood that his help would hasten the return to normalcy. He was the happiest and most helpful when he was finally allowed to put all the pieces of the furniture in their “normal” places.

Guests

Although guests usually alter family’s life by changing schedules, routines, r contents of the meals, Robert was rather unmoved by those changes.  There was, however, problem with laundry.  Robert feels responsible for washing everything that needs to be washed in our home. He washed also some garments of one of the guest.  He wanted to wash clothes of another guest, even if they were not in the laundry hamper. so he dared to go to the guest room and examined the clothes.  He wanted to wash them, but the owner protested. So Robert complied and gave them back without washing.

He learned his lesson all too well, and when the next guest put his dirty clothes in the hamper, Robert removed them and carried them back to the guest’s room. However, he complied with the guest’s wish and washed them later. Much later.

The notion that different guests might have different ideas about laundry was a little confusing, but nonetheless, Robert complied.

Power Outage

When the lights went out, Robert immediately assumed that mother could fix electricity easily by going to the fuse box and doing whatever needed to be done. The fact that mother refused to do so, made him really mad. With the light from the candles and flashlight I drew the primitive power plant with wires going in all directions including our neighborhood and our house. I tried to explained that the wires were down somewhere, but Robert didn’t accept my explanation. “Light, light, light” Over and over.  Request for the lights to come back was expressed loudly, dramatically, and frequently over the period of one hour. It got worse when Robert’s dad came home.  The fact that his father couldn’t repair the light was incomprehensible to Robert. He became more angry with our “stubbornness” . “Light, light, light” Hundred times, thousand times. Loudly, dramatically, non stopping.

Robert’s dad wanted to take him to the McDonald.  I was against, as I remember the time when I believed that such distraction would help.  It didn’t.  Although Robert allowed me to buy him fries and a coke, he, nonetheless, didn’t stop calling for light loudly and desperately between sips of his coke and bites of his fries.

The only other ideas was to try to follow with the evening routine any way.  I brought the flashlight to the bathroom and turned the water in the tub. Robert reluctantly took the hint.  He washed and dried himself quickly. We turned on a movie on Ipad, Robert calmed down and joined us to watch the movie.  He calmed down a lot.  Not that he had forgotten about missing lights.  But the frequency, loudness, and drama all went down.  He was almost ready to go to his bed and sleep, when the light came back.  Robert ran through the house turning all the lights out and then went to sleep.