Assessing Importance of Things and Events

We were not even 3 miles from the Roots Restaurant when Robert became agitated. He checked my backpack, he checked the large bag with scarfs and gloves. From the back seat, he tried to reach to packets in his dad’s jacket. “Hat, hat, hat, hat”, he kept saying.
Then a phone rang. The waiter called to let us know that we left the hat in the restaurant.
We could turn back and pick up the hat. But we did not. Without a discussion, we came to the conclusion that turning from our long trip home to retrieve the hat, was not an option.
For once, we planned to come to Ruthland again in two weeks. More importantly, we knew that we can survive without Robert’s hat. We also knew that Robert can survive as well.

Just a few years before, that wouldn’t be possible.
It was this kind of late summer day, during which all of the continental America was basking in the hot sun, except, that is, San Francisco. San Francisco was windy, cold, and humid. Still, we promised Robert a duck tour which he missed that year in Boston. So we bought tickets and climbed the amphibian vehicle. Out seats were at the end of the vehicle. It was too long a trip for such a cold and windy day, and I was not the only person to be relieved when we finally climbed out of the water and were returning, via Embarcadero, to the original stop. It was somewhere between Pier 29 and 25 when sudden gust of wind grabbed Robert hat and carried it away. Robert sprung up as if ready to jump over the locked gate at the back of the vehicle. We held him back. “Hat, hat, hat!”, he screamed in his most dramatic high pitch. He calmed down slightly when we promised him, insincerely obviously, that we would get his hat back. Nonetheless, he kept calling for his hat almost constantly while we descended the amphibian DUKW, walked to our car, and drove.
Again, without discussing it, we knew, that without finding a hat, Robert’s and mine last three days in California would turn into torture. So, we drove toward Embarcadero. It was a traffic hour, and the car moved slowly. The chances to find an old, ugly, worn, dirty hat, were rather null, still, we didn’t’ have any other option but to try. After almost an hour in a traffic, Jan noticed on the other side of the street, a little dark spot. He made a U-turn, stopped the car, and ran to the median to get this object. It was Robert’s hat. Amid honking, beeping, and tires screeching, Jan ran across the street waving triumphantly the ugly, dirty, worn out baseball cap with its Red socks logo, long gone. It was crazy, it was dangerous, And yet it was the only thing to do. It was then.

Now, we drove on while Robert kept asking, “Hat back.” His voice, however, was not dramatic. In a matter of fact manner, Robert let us know that his hat was not in the car. Not convinced that we understood, Robert repeated himself every minute, then every few minutes, then every quarter. Every time, Jan or I replied, “You forgot the hat in the restaurant. We are not going back.” When Robert heard the word “back”, he immediately understood that going back might be a solution to his problem, so he intensified his request, “Back, back, back, hat back.”
“No, we are not going back. We are going home. Home is important. Safe driving is important. Hat is LESS important.”
And from that moment until the end of the trip, the same dialogue repeated itself quite a few times as I considered the forgotten hat to offer Robert a great chance to learn to differentiate between what is more and what is less important.

I could not overestimate the value of such skill. In the past, small things caused a lot of hard to contain drama related to disappearing things.
In 2006, an eraser fell off from the tip of Robert’s pencil and disappeared. To placate distraught Robert, the whole school seemed to look for it without a result. In 2010, a tiny screw from Robert’s glasses fell into the mud by the lake. Tragedy! Just last year, Robert’s wallet was stolen from his locker. Two full days of dealing with the loss I describe in the post https://krymarh.wordpress.com/2013/01/31/surviving-the-doomsday-sort-of/

There was no way to explain to Robert that all those things didn’t require such strong emotional reactions when he was in the mist of despair.
When San Francisco wind stole Robert’s hat, Robert was not ready to accept that loss calmly and correctly assess magnitude of the event.
This March, however, he was prepared for the first lesson on importance of things and events and that is why I kept repeating, “Home is very important. Our safe trip is important. The hat is less important”
But then, was that a lesson on importance of things, or on accepting the loss? Maybe both?

Journal Page 7

March 27, 2014
Today we both picked ourselves from yesterday’s gloominess. The matter of fact, Robert was in a better mood even yesterday after he returned from swimming pool. This morning he was rather happy to study with me. We continued with areas and perimeters as directed by Singapore Math curriculum. We named categories for sets of objects drawn on cards, we continued with Saxon Math lesson 130. Robert colored the picture of horseback riders. For the last three days, he copied one horse and one rider a day. Today, he finished and stuck it to the refrigerator. We studied for almost three hours and then we went to the Showcase Cinema to see Non-stop. This time Robert didn’t buy candies, but ate two clementines which I illegally brought to the theatre. We arrived after the movie already started and there was no time to go to the restroom before it began. So is understandable, that Robert went once to the restroom during presentation. In the evening we continued reading about landforms from SRA old Real Science grade 3 curriculum. Robert learned (more or less) what is elevation and how it is presented on topographical maps. It was his first encounter with this concept. I am not envisioning any other lessons on that topic any time soon.

Journal Page 6

March 26, 2014
Very difficult day. Maybe Robert gets cabin fever after 26 days at home. For the last three days, we didn’t make any major trips. Just store, cooking class, and swimming. Not enough for that guy, forgotten by Department of Developmental Services in Massachusetts. He is getting restless and anxious. I feel exhausted. Very exhausted. I do live his life 24/7.
Yesterday, was not so bad. I used Singapore Math grade 3 to review area and perimeter of polygons. We had studied that a couple of years ago, but I felt, Robert didn’t get the idea behind those concepts. He knew, that perimeter meant he had to walk around, and area required counting squares, but despite that, he was prone to making errors, because he relied on wrong cues.
If around the rectangle, there were only two number written (for length and width) he was immediately multiplying them to get area, even if the problem asked for perimeter. When along the sides of rectangle, he saw four numbers (two for length and two for width) he added them to find perimeter, even when the question asked for area.
In Singapore textbook and workbook both topics were presented very clearly. And there was a lot of opportunity to practice. I had a feeling that Robert was pretty happy that he was able to grasp both concepts.
We also read a story, about a girl who used seven jars filled to different levels with juices, to make music. I had only 6 flutes. I used five dyes to color water in five of them. Sixth glass had just plain water. I poured the water to different levels so Robert and I could play “music”. Robert loved it!
Yesterday, was a good day.
Today, was harder. Robert was anxious, very anxious. Ha called for his dad, every 10 seconds. I studied with him in a few short intervals. That was the only way to limit that constant and very dramatic calling for dad.
Robert cannot say or read anything loudly, but his calling for dad was very loud and very high-pitched. How is that possible?
Anyway, I had to force myself to study with Robert and we did quite a lot. Today, Robert was building different structures from 1 inch cubes and kept counting volumes. He had difficulties with two or three levels structures. We did a lot speech tasks. Again, he read the word on a card, and I had to understand it. Still a challenge for him and me. We continued with WH questions in Community, We also read a story about two children selling lemonade. Together we made a story map, but I did not ask Robert to retell what he read, based on the story map. That should be the goal of that exercise, but somehow it felt too much for Robert, and much too much for me.

On Gloves and Mittens

Obsessive compulsive disorder affects Robert’s behavior if not as fquently as Robert’s speech impairment then much more severely. Over the years, we have dealt with it without the help of proscription drugs, but with eclectic approach aiming at widening Robert’s world, exposing him to new things, places, activities, and people. A great part of this approach was aiming also at building more unified vision of universe to replace Robert’s idea that world is constructed from separate spheres that do not intersect. For instance, there was a time, when only respite providers could take Robert to McDonalds, but not we, his parents. We could take him to Applebee’s or Outback. There were shoes Roberet could wear to school and another pair he would wear to parks. At some point, Robert learned that some interchanges make sense and make a life easier. Convincing Robert of that required constant efforts, as Robert’s need to compartmentalize his world has been lurking under his acceptance of the uniform universe.

March 22,2014
With the help from his father, Robert put on his ski boots, then he looked in the bag for his dark blue gloves. There were not there. He checked the other bag. No sign of his gloves either. Without a word, although rather slowly, Robert reached for his mittens, and squeezed his hands and hand warmers in.
If he felt a little uneasy about his gloves, it was my fault. Before we left home yesterday, he placed them in a bag. I took them out and replaced them with much warmer mittens. I should have told him, but I did not. Just a few minutes before that, I suggested to him to take mittens instead of gloves, but Robert protested. Of course, I could have stood my ground and say, ” This or else”‘ but I was not in a mood for a discussion. So I waited until he left and switched.
When I did that however, I knew it would not be a big problem when Robert would discover my treachery later.
Four weeks earlier, I hid his gloves before the trip to Sunapee. He looked for them, but ultimately decided to take his mittens instead. For the two concurrent trips to Sunapee, he didn’t have any issues with following my advice that mittens are warmer and thus better.
But trip to Killington, was something completely different so different rules applied. In the past, even on the coldest ski days, he always wore his gloves there. He wore them, because, we, as the saying goes, chose our battles. For Robert first encounter with Killington, we chose another obstacle to conquer: wearing hands’ warmers.
For, as long as I remember, he kept refusing placing hand warmers in whatever he wore on his hands. Or in his boots, for that matter. It was during his first trip to Killington when Robert, watching his ultimate role model, Amanda, placing hands’ warmers in her gloves, decided to follow his sister lead and put hands’ warmers in his gloves too.
Of course, I ask myself a question, “Should we insist on hand warmers and gloves sooner?”
I don’t know the answer. I am happy that Robert wears both today. It feels like an accomplishment. His an ours.

I

Journal, Page 5

Thursday, March 20, 2014
Yesterday, I went to my town’s SEPAC meeting. Today, I drove to OCR (Office of Civil Rights) presentation, organized by Northborough and Hudson SEPACs. Both meetings left me exhausted and bitter, as I realized that nothing really improved in special education in those 19 years, Robert was in it. Maybe it was because I did not file any formal complains. When I look back, I could see 10+ reasons, every year, for serious complains. Including this year. I let most of the issues go. I concentrated on teaching my son, trying to make up for the school’s neglect.
I should have complain. Well, I would if there was only one reason a year to complain. But those other 9 reasons confused me, drained me and kept me overwhelmed most of the time.
I should have complain. It was not just my right, it was my civil obligation to my son and other children with disabilities. I was not afraid of retaliation. I was afraid of being alone and of being wrong. Not so much of loosing, but of winning something nobody else considers important for the children.
Not once, I realized that my ideas about special education are not shared by other parents. That gave me a pause.
I came home tired with a headache, but Robert was in a great mood. He went with Pam for a walk and then to Burger King. He put away dishes, just like I asked him before leaving.
After I unwound, we did 10-20 cards from each of three sets, Do and Does, “ Wh Questions in the Community , and Auditory Memory for Inferences. The cards from the last set presented most challenge because I asked Robert to read the cues, and I had to respond. Except, most of the time I did not understand Robert’s pronunciation. He had to read louder and slower. When I understood the cue and answered, it was my turn to read. When Robert replied correctly, he got a turn. Of course, the questions were very easy and he answered all of them correctly. That meant that he never lost a turn and had to read the cues again. Despite the difficulties he had, he seemed to enjoy that activity.
We did another lesson from saxon Math. There was a lot of adding and subtracting of decimal numbers. I kept leaving Robert alone to perform those operations, but he kept stopping counting as soon as I left. I had to come for almost every problem, just to nod my head when Robert began calculation. Then I left and Robert finished the problem alone, but as he moved to next one he stopped again…
This insecurity, really affects his learning, it shows over-dependency on other people reactions and stops him from trusting himself.
Robert made chicken fingers for the family. For of them, he left for me and his dad, and four of them he ate rather quickly. The fact that he placed the other four in a plastic container and put in the fridge, should be considered today’s achievement. I know, he wanted to eat them too. He didn’t.

From Barney to Gravity

Robert’s affinity for Barney and Veggie Tales cannot be denied. I am not going to restrict Robert’s access to these and other PG movies. I noticed,however, that we were reducing or eliminating Robert’s exposure to movies aimed at sligtly older viewers. After all, he is 22 years old. He is ready for PG 13 and maybe even for R.

When our children were little, we drove to movies in two cars even though we went to see the same feature. In case Robert became disruptive and impossible to control, one of us, parents left the theatre with Robert, while the other stayed with Amanda. Every time, we bought a lot of candies or cookies to keep Robert eating, as that prevented him from making noises.
The problem was that Omnimax Theater in Science Museum forbids bringing food or drinks to the theater. Well, we still brought a few times a small box of juice. When Robert got bored, he asked to go to the restroom, sometimes two, sometimes three times. In Omnimax however, there is no readmittance upon leaving. After leaving two different movies and not being able to return, Robert never asked to go to the restroom again. In omnimax that is. And in the planetarium. He has also never asked for candies to take to the Omnimax or planetarium.
Before Amanda left for college, Robert went to both PG and PG 13 movies frequently. With chips, candies, and a couple of trips to the restroom, he survived till the end.
After Amanda left for college, we took Robert mainly, if not only, to PG movies, mostly to see animated productions. Somehow, without our older child, we stopped noticing that Robert also kept growing. Since at home he still showed unrelenting affection for Barney, Veggie Tales, and a few Disney movies, it seemed natural that those type of entertainment should be provided to him in cinemas.
Except, it didn’t seem exactly right. A couple of weeks ago, I dared to take Robert to Monument Man, then to Pompeii. On Sunday, we went to see Veronica Mars, and today we drove to Providence to catch Gravity which already disappeared from theaters closer to us. Robert loved the movie. He, of course, didn’t elaborated, as he never explains anything. However, from the way he sat and looked at the screen, from the fact that he didn’t take off his 3D glasses or didn’t even mention restroom, I could deduce that he was at awe.
And so was I.

It has to be added that Jan took Robert to see Lego Movie and that they both enjoyed it.

Journal, Page 4

Saturday/Sunday March 15 and 16, 2014
On Saturday, I drove Robert to and from Bridges to Independence in Bridge Center. My husband and I have been driving him there almost every Saturday for the last 7 years. It is over 30 miles one way, so two round trips take us almost 3 hours. But, we couldn’t find anything of equal value to Robert anywhere closer. It is a small group with one dedicated teacher and one even more dedicated volunteer, who happened to be a speech therapist. Robert cooks, plays with his friends, plants seeds, cleans, organizes, talks a little, but listens a lot. I had a short talk with Claudia, (the volunteer) about Robert’s problem with overeating. She noticed that during the previous session and was concerned. Luckily when I came to pick up Robert, four hours later, Claudia informed me about measurable improvement. Jan took Robert for a walk in Moose Hill and took Robert to Subway.
Robert and I did very little work together on Saturday evening. We stayed with worksheets as those are much easier for both of us than talking.
This morning, however, we did a lot a speech using again cards from super Duper School Company. Ten cards from, “What they are asking?’ Robert first stated in one or two sentences what is happening on the picture and followed with the question posed by one of the character.
We went through the whole set of “Changing sentences to questions”. It was really encouraging to see, how much easier those tasks became as we went on, even though they required using of different rules. Finally, we did 10 cards from “Wh questions in the community.” Those cards presented different level of difficulties for Robert. Some, he was able to answer with one word, some he was not able to answer at all.
We also did half of another unit from Talking in Sentences. practicing expression “KNOWS HOW TO” in sentences.
Robert and I went to the supermarket for milk, bread and a few other items. This time we had problems with self check, as there was no icon on the screen for poblano. Robert waited patiently for help. In the late afternoon we drove to Framingham to see movie about Veronika Mars. I chose the movie because it was supposed to be hour-long. Short. It wa two hors long,but Robert survived without any candies or chips and with only one trip to the toilet. Wa could consider it a success.
Oh well, count your blessing whenever you find them.

Gaining Weight

Today, I found a link to the article which addresses one of the issue we are currently dealing with. “Prevalence and Impact of Unhealthy Weight in a National Sample of US Adolescents with Autism and Other Learning and Behavioral Disabilities” http://link.springer.com/article/10.1007/s10995-014-1442-y
It concerns me greatly. Since September, Robert gained 20 pounds. In the summer, medium size shirts were too big for him, now large are too small. The pants are too tight, and do not go around his waist, because there is a big belly where the waist should be. So the pants are sliding lower and lower. Huge problem.
Even worse, Robert has a huge appetite and doesn’t seem ever to be full. Although he leads rather active life style, he still gains more calories than sheds.
According to the article, youngsters with disability are heavier than their peers without such diagnosis, but among them still those with autism lead in numbers of pounds in their bodies.
I wonder. I was informed that many children with autism take medications that are connected to the weight increases. Robert, however, never took such drugs.
But he went through years of discrete trails that relied heavily, too heavily on constant food reinforcers. So he almost constantly had something in his mouth. When he was still very young, I was concerned about that mostly because of his teeth. When he went to collaborative program, that constant feeding stopped with no negative consequences to the behavior. Then it returned with a vengeance, when Robert started his transition classroom.
In the first three months there he gained 15 pounds! He gained those pounds despite going with his classmates twice a week to the town’s gym.
How could this happen? I believe that it was because this program started just as a place to wait until the children mature out of school system with disregard for individual needs. The people who created it wanted to pretend to do something but didn’t want to spend one penny on a new program. In the first few months there was more eating than teaching in this classroom. Going to the gym was also cheaper than hiring a physical ed teacher, who would provide correct instruction. Since the classroom was separated from high school those students didn’t benefit from instruction provided by certified health teacher.
Luckily, Robert loose those 15 pounds over the summer in Handi Kids (currently Bridge Center.)
Over the years, I talked to the teachers and administrators about that issue. I didn’t, however, talk about that this school year. I thought I didn’t have to. They should already be alerted!
Only during the last month of Robert’s stay at this transition program, I learned that almost every day, he was given a bag of chips as a reward for a good behavior or as a way to calm him. I really don’t know the rationale behind it. I might suspect that it was the advise from BCBA (as that was the case in one of previous years.) I am not sure. I know that despite swimming, skiing, horse riding, and hiking whenever weather permited, Robert gained 20 pounds and what is worse developed a habit of constant eating.
Of course, I also played a role. When he was a toddler and preschooler, he was diagnosed with so-called “failure to thrive” a result of serious food allergies to almost everything – grains, milk, eggs, nuts, fish. Because of that providing food and more food was never disputed.
I stopped in 2010 when I noticed how much he gained in those three months.
I also wonder if Robert’s attachment to food is not somehow related to the pica he had when he was younger. And if pica was not related to constantly provided food reinforcers. It is possible that he was used to having something in his mouth all the time. Just possible…
I have so many questions. But the most important of them is, “What to do about that NOW?”

Journal, Page 3

March 14, 2014
This afternoon, Jan took Robert for a horse riding lesson. They are planning to go to movies after riding. I am trying to pull myself together.
The difficulties in signing for health insurance, already more than 20 hours spent on the phones with people who kept saying different things, exhausted me already in February. After Robert left school on March 3, I realized that I was not able to deal with too many issues at the same time, and stopped calling Massachusetts HealthConnector. I needed to regain my sanity and take care of Robert.
I couldn’t do both things at the same time. Specially since they were not the only things I had to deal with.
Today, I thought I was strong enough for another attempt to sign or at least understand my current status.
So I called. I was told again something completely different from before. This is not a place to write about the maddening details of the series of my contacts with HealthConenctor. It suffices to say, that I was kept for hours on the phone, providing millions of details about myself and my family, and then nothing was done. Nothing!!!!! I was supposed to sign for something I didn’t know anything about – not the price, not the services. The fact that my government is fooling with me makes me both depressed and mad. Today, I thought maybe I would find some sense in Healthconnector. Instead, I heard another idiotic request. I cannot understand anything. I wouldn’t be writing about that here, if that didn’t lead to my performance as Robert’s guardian and teacher.
My energy was depleted. The courage to start new things evaporated.
We didn’t go to the Science Museum to see Louis and Clark movie although that was the last day of the presenting this feature. I did not call the library to inquire about possibility of Robert volunteering informally there. I wanted him to place each morning a few returned books on proper shelves. Good application of alphabetical skills and satisfying occupation for him.
I did not call local food bank to ask for volunteering opportunity there. Robert is pretty good at packing, and placing everything in right places so that might be a good thing to do. I didn’t call about Meals on Wheels to check if He and I could deliver meals at least once a week. I was completely drained.
The only thing to do when the energy and courage are lacking is to fall back on a daily routine. Those are the benefits of lots of practice in teaching. Our an hour and a half of learning together was easy. I went on almost mechanically..
a. We continued with cards for apraxia using them in two ways. 1. Robert was repeating after me using the targeted word in different ways: repeating three times, finishing expression, using in a sentence, rhyming it with another word. 2. Robert was reading the word I didn’t see, and I tried to guess what he said. That was much harder, but it allowed me to find some of the issues he had with producing sounds.
b.Saxon Math lesson 122. Part of the lesson Robert didn’t have problems with – adding decimals, drawing angles of given measures. He had difficulties with following question, “How many hours in May?” Before he even read the question, he had to remember that the day has 24 hours and he had to count on his knuckles how many days in May. He knew that. But to go from that to the proper multiplication of 24*31 was a stretch.
I drew the same sort of picture I usually do when the problem calls for multiplication, and Robert wrote a proper math sentence. Later, I realized that I should have used a real calendar instead and have Robert write 24 on each square of page with May. Oh, well
c. Robert practiced some cursive writing, so I could do some kitchen work, and built from a a construction paper an otter with a clam. (Amazing Crafts)
d. Short text about eclipses from Real Science. I don’t think Robert understood it. But that was only an introduction to familiarize him with words lunar, solar, and eclipse. He would understand better if I made a model. But I was not in a mood for doing anything new. Oh well.
Luckily, Robert found himself something to do and hang or put in the in the proper drawers all the remaining laundry from yesterday.
The highlight of the day, was something I did not expect. Robert ate fried eggplant. Without any breadcrumbs, cheese, or tomato sauce. Completely different texture and taste. That he tried something new and widen his food repertoire really made my day.

Journal, Page 2

Rather uneventful day. We studied together: Lesson 120 from Saxon Math, practicing making predictions based on picture cards from Super Duper School Company,Yes and No questions based on cards from the same company, review of map reading skills in context of landforms and waterways, practicing cursive writing and some easy mechanics of grammar.
I noticed , that my presence again affected negatively Robert’s performance. When I left him alone with a task of changing fractions (either to simplify or to expand them), Robert completed quickly and correctly 26 out of 30 problems. When I sat next to him and kept quiet while he worked, Robert had difficulties with this task. It was hard for me not to provide constant encouragement and not to kept confirming the correctness of his solutions. It was even more difficult and confusing for Robert. He understood my silence as a sign that he made an error, so he kept changing, and changing again unable to return to the first, correct answer.
This, unfortunately, is a learned behavior. It was the teachers’ made problem. That means, the problem was also created by me…
That is why, I provide Robert with easier worksheets, he can complete without my support, and I go to the kitchen to cook dinner or wash dishes. At this time, gaining confidence is the most important goal for Robert.

We also took our cat to the vet. Later, we stopped at the library. Robert borrowed two books. We exercised very shortly, again with the emphasis on repetitive movements of arms. I started laundry, Robert followed with two other loads.
That is mostly all. As I said, rather uneventful day. Good.