March 12, 2014
We went to the museum to see Human Body
We study together for two one hour-long periods.
Robert reluctantly exercised with me for less than 5 minutes. Still, this is his record. I emphasized repetitions of the same arm movements in preparation for today’s swimming.
Jan took Robert to the pool.

On a way from the Museum we stopped at McDonald to get Mighty Kids Meal. I wanted Robert to order it, and he tried. Tried very hard. He was unsuccessful. It didn’t help him, that the young McDonald employee was not even looking at him, when Robert talked. He dismissed Robert as soon as it was become clear to him that Robert had developmental problems. The young employee kept turning toward me. He didn’t try to understand Robert but expected me to be the translator. No effort to understand Robert, no effort to even acknowledge Robert’s humanity.

We finished reading My First Book of Nature and looked back at all the previous pages. It was an easy book to read. It had very high ratio of pictures to words. Robert was practicing writing capital letters in cursive using models from Handwriting Without Tears Writing exercises allow him to relax and feel independent, as I usually leave him alone. For the last few days Robert was using Kumon My book of Amazing Crafts. Usually, he cuts everything independently but when he has to assemble the pieces together, he calls for my help. He did the same today, but I told him (answering from another room) to finish on his own. And he did. He built a model of the rocket.

In the last few days, I kept noticing the same unsettling development. When Robert is alone working on multiplication of large numbers, he rarely makes a mistake. When, however, I am sitting next to him, he makes more errors. I believe it is because when I am next to him, he expects me to validate every step of multiplication by appreciative words, gestures, or facial expressions. Since, I don’t want to do that, Robert interprets it as a sign that he have made a mistake. Thus he hesitates and replaces correct answers with the wrong ones.
This is one of the effects of having always an aide next to him prompting him and/or rewarding him with signs of appreciation.Once again too much of support undermines independence.

Depending on tomorrow’s weather we might go to the library, veterinarian with our cat Amber, and to the store.
For now, I only plan to study together, exercise a little longer, and cook together.
I will think about details tomorrow morning.

Journal. March 12, 2014
We went to the Science Museum to see Human Body at the Omnimax Theatre. A few groups of students arrived with their teachers. Still, we were able to secure the best seats. Robert liked that so many other young viewers, almost his age, were there too. I won’t even mention Robert’s behavior as it was just perfect. Even more… typical. He watched the movie intensely. I believe, that as different stages of the woman’s pregnancy were presented on the screen, some of the mystery of a baby growing inside mother’s body might have been shed light on. It was specially important because of Erin. Erin, Robert’s skill instructor for the last few years, has been working with him until two weeks prior to her due date.
The movie could explain to Robert not only the changes to Erin’s body, but also why she couldn’t come last week.
However, before she took her “maternity leave”, Erin proved to be, yet again, an amazing teacher.
Over the years, she has been taking Robert to many stores, to try on and buy some clothes. She helped him, with decreasing support, to look for and to pay for groceries. She was the one who initiated taking Robert to self -check counters to pay for his items. Before he left with Erin on their errands (store, library, bank, and restaurant), I usually gave Robert a short shopping list and he got the goods paying with his ATM card.
A few weeks ago, I didn’t have such a list. Erin asked if it would be OK to take Robert to the supermarket to help her with her shopping.
It is hard to describe how proud that question made me feel. What a delight it was to realize that Robert could really help his teacher by passing items through self check register, bagging them, and placing them in the trunk of her car.
I realized then that this was the best measure of the educational success. A young person showing enough maturity to care for others in a way that matters.

There are times when I am not able to write this blog. I am in an emotional cage. I feel anger and sadness caused not by Robert, but by the people who are by definition, by their job description obligated to, one way or another, care for him. I keep mostly silent on those issues, which unfortunately are almost constant occurrences. Only rarely, I write a post that addresses the painful experiences. Those are very hard posts to write. I don’t want to admit even to myself that so many people treat Robert much worse than they would treat a “typical” person.
The fact that Robert is home, without a program that would accept him is exactly the result of those people cutting corners, ignoring, not knowing and not learning, disliking him, not believing in education, not wanting to provide what was necessary.
Robert is at home, second week now.
I had a scheduled visit into a new program tomorrow, but this morning it was postponed indefinitely. I emotionally collapsed after I received a phone about it. I finished working with Robert and for a few hours couldn’t pull myself together.
To prevent another collapse, I will record everything as it happens. I won’t keep silent when Robert is neglected, gossiped about, treated unfairly.
I will write everyday about our search for place for Robert. I will also go back to the past, to bring those events that still play negative or positive role in Robert’s life.
I will plan every day trying to brace myself for another meltdown.
Today, I didn’t plan the day, as I wanted to take it easy in preparation for tomorrow’s visit. So when the phone came canceling it, I felt I was loosing ground under my feet. Had I planned that day before, i would pull myself together.
So here is my plan for tomorrow:
1. Science Museum with Omni movie about human body.
2. Continue study with Robert.
3. Introducing exercising as a part of every day routine to Robert. He gained 20 pounds since the beginning of the school year (many,many snacks offered by the school, chips, chips and more chips)
4. Swimming Pool and yes take out from Outback for dinner for Robert. Even children menu offers too many calories, but I don’t want to change too many things at once.

March 6, 2014
Robert had his 22nd birthday this Sunday. Now he is home. He still doesn’t have a program. How did this happen? It is a very long story, I am not ready to analyze yet. I know that he needs to be with other people. This week he is with me.
On Monday, he had a ski lesson at NEHSA. Angela, knowing his predicament arranged for this lesson almost in the last minute. When we arrived, three volunteers waited for him. To teach him slowing down and taking turns they played tag on the slopes, so Robert had to go from one person to another. On the way home, we stopped at Merrimack to pick up his father and eat dinner at the Food Court.
On Tuesday, we had a visit from an agency and Robert was showing off. He vacuumed a rug in the living room, cooked chicken tenders, put away one basket of laundry, demonstrated how to fold shirts using folding board, and did some shopping at Stop And Shop Supermarket paying at self register. He needed help only with finding eggplant on the screen. That required alphabet skills, we have been practicing lately. After we got home, he took care of putting all the food away. He took a short nap and soon was ready for a cooking class. As always he was active in doing things but not in eating. The most importantly he seemed to be very happy to be with the same group of his peers.
On Wednesday, I planned to go with him to the State House. A few years ago, Robert typed a letter to the Governor Patrick listing all the things he could already do. I wanted to follow with my letters expressing, well, bitterness that although Robert grew, the world didn’t grow with him… Since, however, Maria Ellena was coming to discuss Robert’s needs, I postponed writing a letter and delivering it to the Governor’s Office. Instead I talked about Robert for a couple of hours. Robert was mostly on Netflix during that time. Then we went to JCC for a swimming lesson. Robert was a little out of focus, but he listened to all the directions, followed them for a few seconds and then swam in his own mixture of styles. Still, he did at least 12 round trips in the pool. Then we went to Outback. I ordered take out for Robert’s dad who was working later than usual. Robert didn’t like that. He either eats inside, or gets take out, but not both, so he made me understand that he was upset, by producing his noises. Luckily, in a loud restaurant, they sounded rather muffled.
Today, Robert practiced setting espresso machine for me. He had to put half of of a cup of water, and half amount of coffee. Later, we played Trouble. To my surprise, he really liked to do so. He wasn’t impatient. he didn’t want to quit in the middle. I wonder if he played Trouble at any other place. He completed a few worksheets and we were off to Children’s Hospital to see his wonderful allergy doctor.
He was happy all the time, and even more so when he heard that he didn’t have to have a blood test this time. We went to the Food Court again. On a way home, I asked him if he wanted to go for a walk in Arboretum. He wanted.
Arboretum was almost empty except for a person taking picture of silvery bush of pussy willows and dog owners letting their dogs off their leashes. Robert is petrified of dogs. Petrified. I told him yet again, that he should never run from dogs, but stay still next to me. We passed one family with dog. Robert moved slightly behind. I held his hand. It was very tense. The dog was friendly, but seemed to understand Robert’s discomfort and turned away from us. On the way back, a rather large dog run toward us with unspecified intentions. Robert moved behind me and froze. The dog growled not in a very friendly way. I asked the owner, who was far away to call on the dog. He did. Robert relaxed.
Tomorrow? We will plan the day tomorrow together. We have never done that yet. Time to start.
Tomorrow.

March 4, 2014
The road was closed a few miles from Sunapee Mountain. As we were approaching a blockade with a detour sign, I hesitated. Suspecting that the detour might not be clearly marked, I wanted to stop and ask the men in yellow jackets for directions. Since they were busy talking, I decided against that and turned right. The road was narrow, hilly, and winding. The asphalt, if there was any, was hardly visible under the sand. The road was long. Too long. I felt eerie. I don’t like detours in places I am not familiar with. I don’t like detours far away from home. I don’t like detours. I was afraid I would get lost. I felt very uneasy driving up and down short but steep hills.
Only when I relaxed after returning to Route 103, I realized that Robert didn’t show any discomfort with the detour.
When he was hardly 2 years old, he did mind when I missed the exit from NJ Route 36 into Main Street. He kicked, he moved back and forth in his car seat trying to get out. He screamed. At first I didn’t understand. But the pattern was clearly visible. From our home we could go to any place without Robert being concerned. But he was outraged and petrified when we missed the proper exit from Route 36 to our home. Later, I noticed that he protested every time I turned into different street, or took a shortcut. Robert really knew his streets well and kept warning us about every wrong turn we made.
A few years later, Robert kicked, attempted to climb out of his car seat, and screamed when on a way from Children’s Hospital, we encountered a detour.
This time I kept talking, “This is a detour. Another way to get home. We are getting home. We are going home in a different way. It is a detour. The road was closed. Another road, will bring us home.” I went on and on, repeating the same sentences many times. I knew that even if Robert didn’t understand me this time, he would gain some ideas about detours which will benefit him in the future. So I went on and on, until as we got back on VFW Parkway. Robert immediately recognized the place and calmed down. I did too, although, I felt obligated to repeat two or three more times, “It was a detour. We took another street and we got back on our way home.” Something like that.
Over the years, we hit a few more detours on our trips. Each one seemed better tolerated by Robert. At some point, he even seemed to enjoy unexpected tours and novel scenery as he felt assured that detours still let him (and me) go forward.

Twice during the time Robert was driven to the Private School, he became, according to the driver, very unruly and got out of his seat. Because of that he had to travel in a special vest. I wonder if his getting out of seat was the consequence of the driver changing his/her route and Robert trying to tell him/her, that it was a big mistake.

Friday was Robert’s last day of school. I am not sure, he understands that. There was a cake on Thursday. It was huge and Robert brought more than a half home. He didn’t want to eat it, and on Friday, he took it back to school. I think the cake was a school thing that he should share with his classmates. I don’t know for sure. After all, Robert doesn’t explain himself.
On Friday, Robert went with his teachers and classmates to his new favorite place, Chicago Bar and Grill, Uno.
I had very mixed feeling about that. On one hand, I wanted him to celebrate with his class and create great memory of his time at school. On the other hand, I was afraid that this would make him miss the school terribly after he leaves.
Robert is a creature of habits. He likes people, places, and even his responsibilieties and gets used to them. He leaves but always with the idea that at some point he can turn.
Even now, six months after his summer program ended, he still keeps a folder in his other schoolbag with worksheets from that collaborative. I tried to convinced him in vain to dispose of the papers, but he doesn’t want to. I could do it myself when he is not watching, but that would mean I don’t give him a chance to mature and make hard decision himself.
Nonetheless, I disposed of the green folder he took to school everyday. It was torn apart already. Robert checked the recycling bin,decided that the folder was not usable, and found another green folder. He placed his home worksheets in it, then he carried it to his main schoolbag.
He expects he will go back.
Well, today he didn’t. NEHSA at Sunapee arranged a ski lesson for him. So he is skiing now.
I am not sure what he will do tomorrow.
What will I do?