Before the Trip

October 23, 2014
It was a difficult evening. I started packing for our trip to France and Poland. Robert was taking off some of the clothes from two suitcases. Maybe he doesn’t like them. Maybe he believes they should remain at home. Because I was already stressed with all other arrangements, I had very hard time trying to deal also with Robert’s ideas. There is still so much to do. Moreover, Robert got very bad eczema on his arms and face. I suspect that it was caused by diet ice tea. I bought it a few days ago believing that it would help Robert lose some weight, but I became paranoid and poured half of the bottle out. I feel tired. This blog shouldn’t be about me, but about Robert. Still, I feel exhausted and a little scared. Last three days, Robert was very anxious. I don’t remember when was the last time he was so anxious. He knew about the trip and was pretty excited about it but last few days were different. Maybe because his skin is very itchy. I don’t know. I give him the same medicines.
Oh well, I am scared to travel. I have been scared before. I was scared when we drove to California and back to Massachusetts. I was scared when we flew to California and back. At least now, Jan, Robert’s dad, is coming with us. But, we are going to different countries. I am to some degree afraid of how will Robert react and act, but even more so, how people in those countries will treat Robert. I know, more or less, what to expect in US. I know the range of attitudes that might surround Robert in America. I don’t know those attitudes in European Countries.
Still, not taking Robert was not an option. If he doesn’t travel with us, he won’t travel at all. Nobody else would take him. We are getting older, it would get harder for us to travel.
It is a family thing. I couldn’t keep Robert from visiting his sister in France and the grandparent’s home in Poland. But, I am afraid that this trip might uncover the disconnect between Robert and the world at large. The alienation that here, in the environment carefully constructed around Robert by caring people, has been reduced if not eliminated.
But…

Price for Being Nasty

October 17, 2014
Yesterday afternoon, Robert and I went to a supermarket. Robert used self check out. He ran the bar codes through the machine while I was packing the groceries.
Because the package of ground meat which was placed in a plastic bag didn’t scan, I took the plastic bag off the package and scanned it. There was also a problem with an eggplant. We took a plastic bag to look for a code, but we didn’t find it. Luckily, we found a picture on the screen, so we were able to weigh the eggplant and got the price. After we paid for everything, Robert wanted to take the plastic bag off the package of the ground meat. I protested. Robert was upset, but stopped removing the bag from the package but instead tried to remove the plastic bag from the eggplant. I stopped him again. I was very upset and scolded him, sort off. Robert was upset too. He made grunting noises all the way through the store. I scolded him again, but that made him even more upset and the noises increased.
The ride home was, however uneventful and very quiet.
But when we brought the shopping home, Robert took off both bags – from the meat and from the eggplant and switched them. Only then I realized that the bags were different. The one from the meat section had red letters printed on it. The bag from the produce section was plain. Robert noticed the error I made at the cash register and tried to fix it. I didn’t let him! He was unable to explain to me what was the problem, and I didn’t give him any chance.
Even worse, I scolded him as if he were doing something completely irrational.
I wonder how did he feel? Unable to communicate, being scolded for trying to do the right thing. He certainly felt angry. But what was worse, he must also felt helpless, alienated, and lonely. Maybe even betrayed by me. That realization is the price I pay for being nasty.

Take It to Your Brain Part 2

In my previous post, https://krymarh.wordpress.com/2012/03/31/looking-for-variables/, I described how I helped Robert to learn adding numbers up to 20 despite his issues with short memory,.
In a different post https://krymarh.wordpress.com/2012/12/11/take-it-to-your-brain/, I wrote about teaching Robert to use algorithm for rounding numbers. In both instances, solving problems on paper was only an introduction that was supposed to help Robert to solve problems mentally.
I have just realized, that too often, I didn’t practice switching from finding results on paper, to finding it mentally. Consequently, Robert has not learned those methods, I though he had mastered.

Almost two years ago, Robert was learning to write large numbers switching from words to digits and vice versa. But as we were, recently, practicing changing kilometers into meters, kilograms into grams, and liters into millilitres, Robert kept making errors alerting me to the fact, that his grasp on decimal system was not as solid as I believed it to be. He could write 2387, 2031, or 2008 using words, but he had problems switching from words to digits such numbers as two thousand thirty-one or three thousand nine. When either tens or hundreds were missing, Robert forgot to put zero in the right place. We had to return to Robert placing digits in each of the four columns. While he was placing digits in appropriate columns for ones, tens, hundreds, and thousands, he appropriately put zeros when hundreds or tens were missing. Now, before he has to switch from words to digits, I tell Robert, “Help Yourself”, and he draws those four column by himself and completes the tasks without error.
Now, is just one more step in learning. Step, which I used before. Once successfully while teaching basic addition up to 20 and once not so, while introducing an algorithm for rounding numbers. This step calls for using the same support mentally, without writing. To write the number three thousand seventy-four in digits, we would start with drawing and naming the columns, BUT, in that phase, I would not let Robert write down the digit. I would ask him to imagine, that he does so, and then write the 3074 on the side. Next, I would cover those four columns with my hand and ask Robert to imagine in what space under my hand he would write the digits.

The similar trick we used just this week, to help Robert count minutes until full hour, that is to subtract mentally two digit numbers from 60.
At the beginning, Robert practiced by subtracting first tens then ones. 60- 24= 60-20-4=40-4= 36. except he wrote the first difference above the first subtraction. After practicing that for a few days (It was easy for Robert, because that part we did before.), I wrote only, “60-24” and Robert did both operations in his head. He first said, “forty” and follow quickly with “thirty-six.” However, he was still looking at the numbers in front of him. So, in the next step, I wrote “60-35”, let Robert take a quick look, then I covered the subtraction with my hand and waited for Robert to answer. Finally, I just asked, “How much is 60-18?”. We practiced during car rides, not just with subtracting from 60 but all other full tens: 20,30, 40…and so on. Robert kept doing the same thing. For 60-15 he first said “50” to quickly follow with “45”. But, I didn’t mind.
After all, he took the method to his brain.

Fizz, Liz, and Theory of Mind

October 12, 2014

I failed to read any books on autism and Theory of Mind. Thus I am not sure if lack of ability to understand other people’s perspective is a characteristic of autism or a byproduct of mental retardation. I am not familiar with specific research on the subject – either methods or conclusions.
I don’t know if the research led to recommendation about possible treatment.
For the last few days, however, Robert tried to understand the other people perspectives with the help of Fizz, Liz, and Owen.
Although Owen is a giant while Liz and Fizz are hardly one inch tall, they, nonetheless, live on two identical islands with the same landforms, plants, and animals. But of course for Liz and Fizz, their island presents itself very differently than Owen’s island appears to him. Both islands were created by authors of Reasoning and Writing Part B and became tolls in understanding other people’s perspectives. As Owen exchanges letters with Liz and Fizz describing his environment, Robert is supposed to help Liz and Fizz describe exactly the same objects as seen from their, rather short, point of view. A series of lessons should lead to understanding of how the things that seem little for some people can appear to be huge for others. Robert reads, measures, compares, and writes the response from Fizz and Liz by replacing adjective “small” from Owen’s letter by “big” or “huge”. Yes, Robert writes almost automatically, but I am not sure he understands the concept.
We still have a few more units till the end of the story, and a few more chances for Robert to understand different perspectives, and a few more chances for me to understand Robert’s understanding.

October 13, 20014
Yesterday evening and this morning, Robert and I read and analyzed two stories from The Reading Comprehension Kit for Hyperlexia and Autism by Phyllis Kupperman. In a way, the two stories Sounds in the Big Woods and Wondering About the Big Woods supplemented Fizz, Liz, and Owen’s tales with an opposite idea. The idea that different characters, Cassie Coyote and Grace Givens (a girl), can perceive the world and act in it in a similar or “symmetrical” manner.

Recounting Elapsed Time and Other Things

October 11, 2014
Almost a year ago, Robert and I spent a lot of time on finding elapsed time. The easiest way for Robert was to subtract the start time from the end time. He was able, if needed, to change an hour into minutes. He was not able, however, to proceed in similar matter, when the time that passed included 12:00. (And I didn’t know how to teach that.) More general strategy was needed. The strategy that would allow Robert to count elapsed time without pencil and paper.
The first thing to learn was to subtract quickly numbers from 60. 60-27, 60-18, 60-9 and so on.
That would allow Robert to count minutes up to the next hour. For instance, from 10:45 to 11:00
The next step would be to add the remaining minutes. For instance from 11:00 to 11:17.
Thus the elapsed time should be counted as 15 + 17.
That is of course only in a span of one hour. Including longer times would be the next step.
I wrote about our efforts to teach and learn time almost a year ago. Unfortunately, I stopped practicing these skills at home, as learning to count elapsed time was one of the goal on the IEP and it seemed that the teacher used different approach. I found that approach difficult to follow, but didn’t want to confuse Robert with our ways of counting passed time, so I switch to teaching other things.
Yesterday, I noticed that Robert still was not able to count elapsed time even when it was only from 10:55 to 11:05.
So back we went to subtracting numbers from 60 in his head. Although it went smoothly, I didn’t dare to make the next step. YET
In the past, Robert was able to rely on ability to find the difference between 60 and other number to tell the time in the form of expressions” 12 minutes to 7 or 25 minutes to seven. Now, he has difficulties with such statements. It is not surprising. Nobody, and that includes me, asks him to tell time so he has never had an opportunity to use the skill.

October 12, 2014
I made a serious error in teaching Robert subtracting from 60. Yes, Robert performed the operations in his head, but WHILE looking at the written problem. He had, for instance 60-27 in front of him. With the help of that visible expression Robert counted in his head by first subtracting 20 then 7. Only today, I realized that I should help Robert to do similar operations without written representation, just by giving him verbal direction. It is important that he learns to visualize the problem and solve it in two planned steps. And that is what we began doing today.

Who’s to Blame?

October 6, 2014

In October of the last year, I came to observe Robert in his “transition” classroom. The observation was scheduled a couple weeks in advance. I didn’t ask to observe any specific activities. The teacher chose the place, time, and the activity. He chose cooking – frying tortillas with slices of apples and cheese. By the time, the lesson was over, I was depressed.
It was clear, that the teacher didn’t think about the lesson plan, he didn’t specified goals, he didn’t think about clarity of instruction, he didn’t make general introduction. There were so many things that could be taught: safety rules, hygiene, names of utensils. I was bitter. I knew how much more the students would learn if I WERE their teacher. I would introduce a new vocabulary, I would not just write the steps on a white board, but repeat them with the students in a funny way using some mnemonic technique. I would have arranged the tables in a horseshoe shape around the one and only flat, electric burner. I would have students work at the same time on cutting apples and cheese, as there were enough of aides to assure safety. I would put cooked tortilla in the pile and pass them to the students at the end, so they could eat together while having sort of light conversation prompted by the teacher. That would be a great opportunity to increase social interactions among students.
Student after student approached the burner, put on gloves, too big and too slippery for this job, and using tiny knife sliced the apples and cheese. The gloves were making it hard. The small knife made it even harder. The student poured some oil on the burner (some too much, some too little), placed tortilla with apples and cheese on it, folded it, and later with the spatula tried to flip it over. It was not easy, the tortilla kept sliding off the spatula and off the burner. While one student was doing this, all the others watched and waited for their turn.
Of course, I could blame the teacher for not thinking about the goals or for using wrong utensils. But then, he wasn’t a cooking instructor. Moreover, he didn’t have any utensils to choose from. The classroom didn’t have a bigger knife or tongues to flip over hot tortillas. The classroom didn’t even have sink. The electric flat burner was there because the students didn’t have access to a real kitchen. Although new high school had a splendid kitchen, those students in transition program didn’t have an access to it. That was the wish of my town’s school committee and the high school principal. While the students in high school had an access to the kitchen, students in the Transition Program, those who needed that access more than anybody else, didn’t. They didn’t because they were clearly treated like second class students. They needed more. But for my town’s school administrators those students who need more, are less deserving. So could I really blame the teacher who had neither training in teaching cooking nor an access to necessary equipment?
Maybe a should blame sped director? No, I couldn’t because she was new in the district, just five weeks on a job. Should I blame the old sped director? No, I couldn’t because I know that she tried to bring the transition program back to the spacious rooms in a new high school building where fully equipped kitchen could offer more opportunity to learn. She couldn’t do it, because of the opposition from the high school principal supported by superintendent. Could I blame the director of the program? No, because I was told that he was the director only on paper and was not really involved. Could I blame members of the school committee for opening a classroom without providing any money for a proper equipment, not to mention curricula materials? No, I couldn’t because the high school principal assured them that the students in the transition program won’t need anything and no dollar would be spent on that classroom. Could I blame the principal for lack of concern for the transition students if two mothers of children with disabilities wanted just a place where their TWO children could get custodial sort of care. They didn’t need more academics, they wanted a place to hang out between outings to job sites. Job sites which were mainly found for those two students using mothers connections. Because those mothers were well connected. Could I blame mothers that they wanted to make their TWO children happy and didn’t want to force them into any more learning of academics or life skills as that could backfire? Could I blame the school administrators for avoiding spending money on a transition classroom when the money could be spent on after school sport and art program. Could I blame the whole school district for neglecting children in the transition program ? No I couldn’t because they stated that they didn’t get money from the town to provide necessary equipment. I couldn’t blame the town leaders because it was the Department of Education in Commonwealth of Massachusetts that year after year kept sending a message that the neglect of special education children can go without any negative consequences while the effects of teaching typical children as measured by standardized tests are important and could have unwanted consequences to the district (even parents scorn). Could I then blame Department of Education? No, because they insist that all of the districts have under Commonwealth Law some autonomy and do not take lightly any interference from the State…
Thus I am the only person to blame. I knew that the civil rights of the transition students with disabilities had been violated for years, and yet I have never filled a complain with the Office of Civil Rights.

Mixtures and Solutions on a Rainy Saturday

October 4, 2014

We haven’t gotten a message so we brought Robert to the Ridge Hill Reservation for a walk with members of his Walking Club. Nobody was there, because the meeting was canceled due to the expected rain. The precipitation had already started with a shy drizzle, but soon it changed into regular rain. Nonetheless, there was this wonderful autumn scent in the air so we decided to take a short walk along the loop just to breathe. And we did.
After returning home, Robert read the last of the six easy books about Superman (from Costco). They are so easy, that reading seems rewarding to Robert. Later, Robert and I studied together, mostly following the same curricula:
Changing metric units (Singapore Math).
Elements of basic deductions (Reasoning and Writing)
Vocabulary words.
Pronunciation exercises based on Becoming Verbal and Intelligible (That brought again a bout of bitterness, as yet again I realized that this was what his schools’ speech therapists should had done years ago, but....)
Scholastic Comprehension Skills (comparing and contrasting Mars and Venus, based on a very short paragraph.)
Naming 3 things wrong with each of two pictures (to practice speaking without verbal prompting.)
After a short break we did SCIENCE.
We mixed oil and water, flour and iron shavings, flour and black beans, water and lentils, tea and sugar, water and salt. We watched as sugar and salt dissolved themselves in their respective liquids. We observed oil always push to the top of the water. We used magnet to remove iron from the flour, we boiled a small amount of salty water in microwave and tasted the powder on the side of the glass. We used strainer to retrieve beans and lentils from their mixtures. After all of that we read texts from Real Science (grade 3) and Core Skills Science (grade 3) about …mixtures and solutions.
Both texts contained some of the words which Robert probably didn’t understand, but they also described almost all of the experiments Robert had just performed with me.
Robert was thrilled! Maybe that was the way, he was able to return everything to previous (well, almost the same) state – by recovering beans, lentils, and salt. Maybe it was the funny way, the oil kept returning to the top. Maybe the easiness with which he could remove almost completely iron shavings from the flour making it perfectly white.
But maybe, just maybe, Robert was happy because he experienced yet another connection between written world and world of things and deeds.
Later, Robert, his dad and I played Trouble together. Robert was relaxed. He clearly enjoyed the game, even though I won.

Adjusting to the Changing World

October 2, 2014
Many times, I have heard that children with autism do not like changes in their environment or their daily schedules. That might be true for many individuals with autism. It is certainly true with Robert. He scans every new place he enters, and from that time on, he attempts to prevent any changes. If he notices, for instance, that the keys are kept on certain shelf, he will always put keys on that place, no matter where he finds them.
I also many times heard the conclusion that many “specialists” on autism deduced from this observation. “Since the children with autism don’t like changes, their environment should remain as unchangeable as possible.” Thus, the specialists advise that the same activities in the same places should fill the days of children with autism.
Of course, complying with such suggestion would reduce even further ability of children with autism to adjust to changes, and consequently will result in limited opportunities to learn and experience new things.
That is what my son’s teachers in his first (private) school realized many years ago, and that is something that they and I have tried to address by introducing “controlled” changes to Robert’s environment.
The most important tool in moderating the environment is language. The problem is, that Robert’s language was and remains very limited. But it still can be used in very simple forms.
In his private school, Robert wanted always to sit in the same chair at the table. Moreover, he wanted all his classmates to sit exactly at the same places every day. That led to problems, because not everybody in the classroom would comply with Robert need for sameness. One of the ideas to remedy the situation was to introduce place mats with children names written on them, and move them around. Their placement was supposed to control where the children sat. Moving them around would result in children switching their chairs. Thus, not the past, rigid arrangement controlled this aspect of the environment but the words written on movable place mats. This was a huge step toward flexibility.
The words can introduce change, prepare children for it, and give them tools to deal with any alteration of their worlds.
Changes are part of life and thus arming children with autism with means that would allow them to accept and adjust to different arrangements of surrounding them space and time is a necessity.
Unfortunately, the public school, Robert attended for last eight years was not capable of similar programing. The mantra, that the environment should be as stable as possible to prevent discomfort of a child with autism ruled unchallenged. Consequently, only unpredictable alterations of Robert’s environment provided opportunity to practice adjusting to changes. But that not always goes smoothly.
Just today, Robert was riding a horse. It is and activity, he completed almost every week for last few years without any problem. But today, as I observed him, he stopped, pointed toward the entrance to the arena, and kept repeating something quickly and rather loudly. No, he didn’t scream, but he didn’t whisper either. It was clear, that he was agitated. I didn’t understand his speech but I guessed that there was something in the arena, that wasn’t there on any of the previous occasions- a chain in the doorway, separating arena from the rest of the barn. I knew, that Robert wanted it to be removed.
Conundrum.
Removing the chain to satisfy Robert was the last option to consider, because it was important that Robert learn to tolerate the chain on the door during his riding. Asking Robert to get of the horse, was not a good idea either, because it would signal to him that he did something wrong. And Robert hated that feeling. With the instructor’s consent, I promised Robert that the chain would be removed after he completes three more rides around the arena. After he circled the arena three times, the chain was removed. The lesson, by the way, was over too.
I know now what change Robert has to be prepared for before the next lesson. Now it is time to use words as a mitigating tool. I will talk to Robert about the chain in the entrance to the riding arena as something to be expected and tolerated. I hope, my words do the trick.

Post 301

October 1, 2014
I have written 300 posts already. I don’t remember many of them, as I rarely go back to read one or two of the previous posts. But it is harder to write now. Not because I wrote everything I wanted, but because I still have so much to write, that I am overburdened by the number and by the complexity of topics, I should write about. I should write what helped Robert and what was waste of time or even caused regress. I should rethink some of the approaches I had and think about what else can be done and how. I struggle with writing. Sometimes I want those paragraphs to be like light breathing, sometimes they are more labored as I want them to show structure made of discovered connections. Sometimes I tried to change the anger into something constructive. Sometimes I just want to enjoy a moment.
Yes, this writing changes mostly with my emotions, rarely with what I learned or understood.

We still study, most of the days. But not today. Today, Robert came back from his day program, ate something and off we went for his swimming lesson. Today he shared a lane in a pool with two other swimmers, while his teacher, Lucinda, kept giving him instruction from the side of the pool. I considered it a great achievement since Robert never get into collision course with other swimmer. Yes, he was still mixing styles, didn’t coordinate properly arms, legs, and head movements, but he paid attention to other people. That was the first time he was sharing lane with two swimmers, although a few times he shared a lane with another swimmer. On a way home we picked up Robert’s dad from the train station. We ate dinner, and Robert took a bath. He was too tired to study, Or maybe I was too tired to study.
Yesterday, I took Robert to the lab to check his blood for levels of vitamin D, B12, and of iron. We waited 20 minutes. Nothing special, Robert stretched his arm without any problems, observed phlebotomist taking two vials of blood, said, “thank you” (prompted) and left.
So easy.
But just a few years ago, three people had to hold him for short allergy shots or for blood test…
It rained, so we stayed home. Continued with lesson 7 from Reasoning and Writing, a few varied math pages. We read about waves and sound waves. I am not sure if Robert understands what the sound waves are, but he certainly remembers what the ocean waves were like and thus he grasp the meaning of the words: crest, trough, and wavelength. Although I am not sure if he remembers those words today.