Journal, Page 12

Monday, May 5, 2014
This Monday we worked in the morning.
1.I returned to the first level of Reasoning and Writing, the one that is much more difficult for Robert than two next levels because it requires Robert not to read, but to listen. As I read the story about the squid who taught a shark a lesson, I wondered what Robert understood. Luckily there was an IPAD and a rather vague short video of an octopus squirting ink at a bird. It looked like a good lesson for the bird not to fish into that part of the ocean. I don’t know. I found it encouraging that as I read, Robert attempted to answer at least some of the comprehension questions from the book and seemed in a very good mood.
2. We continued with emphasizing pronunciation of “ail” words with the help of IPAD (Speak) It. I had to wonder, if my efforts to improve Robert’s clarity of speech don’t backfire. Well, I think that in a way they do. The more I insisted on clear ending sound (L) the more strange the sound became. Finally , I just used Speak It, for each word I typed: ” nail. . nail.” Robert heard the first word, had time to say it again, and then heard the same word the second time. I refrained myself from any additional help. I think that from that point on, I will mainly give Robert tools to organize syllables. I will remind him that this is the segment, triangular, or square word meaning two, three, or four syllables word. When Robert knows that he separates the syllables and matches them with hand movements which results in much MUCH cleared pronunciation. I will also continue (the tool shown to me by a consultant from May Center) with drawing longer and shorter lines for syllables with long and short vowels. No more giving confusing examples on MINE pronunciation.
3. Robert built three-dimensional structures from cubes based on the drawing from the third grade level Singapore Math. Most of them came easily to him, but he had difficulties transforming them into different shapes by removing some of the blocks.
4. We read the next story from Spectrum Reading. Robert seemed to like the story and with just a three prompts answered the 5 WH and 1 How questions.

Morning at Big Apple Circus.

Friday, May 2, 2014
On Friday morning, Robert and I drove to Boston to see the Big Apple Circus. Unfortunately, the seats we got were not good. We mostly saw the backs of clowns and jugglers. We moved a few times to find better ones and, I think, we did. When I told Robert to change seats, he said, “No.” But when I changed my seat, he followed me without a protest. It was during the intermission when there was a problem. It took me off guard, as it never happened before in almost 8 years of yearly trips to Big Apple circus and Cirque Du Soleil. During intermission, Robert wanted to leave and go home. He expressed that clearly and rather loudly. So we left but not without getting stamps which would allow us to return. As soon as we left the tent, Robert hesitated and then decided to return. He also wanted coke. But when I got a full paper cup for him, he was even more agitated. It all seemed so irrational.
Then I realized:
1. As we were leaving our seats for intermission, I asked Robert to take his jacket and thus he deduced that we were leaving for good. Had his jacket was left on the seat, he would got much clearer idea than my words, “This is only a break, an intermission. We will return after intermission. In-ter-mis-sion Intermission.” I kept repeating. I was fixated on teaching Robert the new word, “intermission” and didn’t realize that Robert didn’t grasp the concept yet. Robert understands the word “return”, but that still doesn’t explain anything. After all, the word “Return” doesn’t specifies WHEN we would return. “Return” might mean tomorrow, next week, or, as it has been the case with The Big Apple Circus, next year. Robert was confused and he hates being confused.
2. When I picked the cup full of coke from the window, Robert assumed that it was an empty cup, as one of those that he usually gets in fast food restaurants. He has to fill such cup himself. When he looked around and didn’t see soda machines he experienced another confusion. Then he noticed that one cup in the window had a few drops of brown liquid on the outside. Those drops looked promising. He grabbed that cup while I returned the other one.

Everything, became clearer only after we returned to the arena and I saw Robert’s blissful expression when the second half had begun.
The tension was gone. The suspicious resistance was gone. The irritating confusions disappeared. The muscles on his face soften and his eyes brighten up as Robert embraced the show.

Weekend in Botanical Gardens in New York City

April 27, 2014
April 19, 2014, was the first sunny Saturday in New York City. That fact was not lost on New Yorkers and the tourists. In throngs they arrived at Brooklyn Botanical Garden hungry for all kinds of green and a few splashes of other spring colors. Four of us: Robert, his grandmother, and we, his parents, tried to do our best to get to this green and leafy place too. And we did.
I thought it would be a good idea to separate. Jan and his mother like to stop, admire, and take pictures. Robert likes to walk around in clearly visible trails. So, he and I wandered into Japanese section and walked around a pond. The path was narrow often forcing us to stop and let groups of people pass by. At one point Robert didn’t want to follow me but stopped and by stretching his arm and repeating, “Here, here, here”, expressed his wish to use another path. I asked him to follow me so we could find his dad and grandma. He did. Hundred or more feet later I realized that we were on the same circular trail again. Robert figured it out before and attempted to alert me to that fact but I dismissed his efforts without giving them any thought. He didn’t want to argue with me. Soon, we found each other, not without the help of cell phones, and decided to walk together. It was a good exercise for Robert’s shared (joint) attention. As his grandmother kept stopping to admire all sorts of tulips and tree blossoms, he kept stopping too and, well, looking at the plants. I didn’t look at plants. I watched Robert to make sure he doesn’t disappear. I noticed that he was adjusting his steps to remain close to our group. He waited patiently for his dad to take pictures. He didn’t bump into anybody but often made a way for others. Moreover, despite huge crowd of people, Robert seemed to enjoy that excursion a lot.
On Sunday morning, we dared to visit the New York Botanical Garden in Bronx. There were no many species of trees blooming there. Even some magnolia held off on releasing their blossoms. But orchids were in a full bloom in the special exhibition. So we went to see them.
It was yet another exercise for Robert to adjust to the pace of other visitors. It was an exercise in waiting for other members of our group before deciding if he should turn right or left. It was an exercise in waiting until other people took the pictures so not to get into their frames. It was an exercise in waiting for his father to take picture amid many passers-by in front of his camera. It was an exercise in joint attention, by looking at everything grandma was looking at. It was a great exercise not only in staying together by in BEING A PART OF A GROUP.
I cherished the fact, that a part of the show led us up the stairs to presentation, with drawings and real plants, of different layers of the rain forest. Although we previously visited “rain forest” in Cleveland, OH, and we read about it, this was the simplest, thus easiest to digest, presentation he had encountered so far.

I cannot tell to what degree Robert enjoyed these two trips. He is more mature now, and doesn’t express his happiness by bouncing excitedly, as he used to when he was three or five years old. He still bounces, but he has already learned to limit this way of expressing himself.
Is that a good development? I am not sure.

Private, Collaborative, Home, and Public

On Parenting Blog in New York Times, I found an article: http://parenting.blogs.nytimes.com/2014/04/17/my-daughter-profoundly-disabled-needs-a-school-for-children-like-her/ to which I could relate. New York Times published lately a few articles, in one way or another, related to autism. Those pieces, although republished all over the internet and in many newspapers, left me only alienated. Nothing related to Robert’s and my experiences. However, My Daughter Profoundly Disabled Needs a School for Children Like Her, brought to the paper (or its internet site) the reality of my son’s and my life. No amazing solutions, no miraculous recovery, and no maintaining the economically tainted mantra about full inclusion. Reality of looking for a program/classroom/school that would help teach children who need specific curriculum and specialized methods of teaching.
Although my experiences are different from those of the author as my son was in four different placements: special school for autism, collaborative program, home, and self-contained classroom in public school, my motivation was the same – to find a program that teaches.
None of the program was sufficiently addressing Robert’s needs.
1. Special school for Autism was very well prepared to work on the specific deficits and excesses related to autism. They also offered most consistency from one year to another and very well prepared and supported teachers. I removed Robert from this school when I was asked to consent to another method of restraining. The private school assisted Robert and me in a smooth transition to another program
2. Collaborative program offered very well designed academic curricula and a great approach to communication. It provided weekly community trips. It was also a program with most financial support. But it wasn’t stable. From one year to another, it changed dramatically in almost all aspects – different classroom in a different town, different students, different settings for delivery of instruction, and all different teacher’s aides. That caused problems for Robert resulting in him being forced to leave this placement. I have to add that the Collaborative program not only didn’t offer any help with transition to a new place, but its staff seemed to do everything to derail Robert’s chances for finding suitable alternative.
3. The program in a public school changed almost constantly. Over the years, Robert had 5 teachers. That however was not a problem for four of those years, as it was only one of those five who participated in preparing materials for Robert. Other teachers seemed to believe that it was responsibility of Robert’s aide. The school administration had very little understanding of the complex issues related to special education. They tended to marginalize it. I believe that some of the teacher’s aides were hired based on their connections and not on their skills as many administrators didn’t believe that people with either education or proper experience would make any difference. The classes lacked basic tools for modern teaching. One classroom was opened without any new materials purchased but with a lot of donated junk. All of that screamed to me to complain to the Office of Civil Rights as it showed not just neglect but violating the children access to Free and Appropriate Education. But I did not complain, I just grew bitter from one year to the next. Some of the teachers were not prepared or even willing to do the teaching.
4. I kept teaching Robert at home when he was stopped being driven to private school as he required a special harness, which school didn’t order for many weeks. At that time I didn’t have an access to the car. I kept teaching Robert at home for over 4 months when the collaborative abruptly closed its door on him and Robert was left without an alternative. I kept teaching Robert at home when in a school year 2009/2010 with a new teacher, new sped director and a new superintendent, Robert’s behavior at school deteriorated and nobody was willing to find the causes a t that time. Robert did learn a lot at home, but he was most lonely and lost human being not really understanding what was going on. He is lonely and lost now, at 22. He doesn’t have a day program to go to and his anxiety is slowly growing up.

The hardest part of managing Robert’s education was to find information about different programs. even went to hearing for that only. I wanted to see what was there for Robert. Unfortunately, that was not something the hearing Officer was inclined to rule on.
Then I gave up.
Moreover, the most important factors in teaching children with special needs are not the specific arrangements of classrooms but individual teachers, teacher’s aides and the quality of administrative support those classrooms receive. Unfortunately, you can learn about those factors only too late…