Balkan adventures Part1

Journalist from Ohrid, after talking to me, published very strange article.  Probably he just needed to write something for the Event. Everybody everywhere is concern a lot with that special day But the title nicely reflected five unsuccessful years of my Balkan life and problem with humanity
                “International Day of Persons with Disabilities:
               Humanity and Volunteering or Business and Career!?

Well, for more than 20 years in USA in 3 different states I found only 3 people, who put kids progress before business and carrier. On Balkan I met no one who would be interested in discussing ideas for kids and not money issues. The intention of finding a way to separate Humanity from Business totally failed
Mother of autistic child in one of the school for special children in NYC said “It’s good to have a special child in the family-you’ll have a free babysitter for all the kids, free toys and much more..” She was right. It could be profitable to have an autistic child

Worldwide popular ABA System is a businesslike System without much of Humanity in it. I created my system based on human principles and looked for different ways to develop it further. So far, I deadly failed. In spite of many different hypothesis of autism phenomena’s cause, the real one is still unknown. I join those, who consider autism as a child’s choice not participates in people’s life with the preference of remaining in his own world. From my practical work with kids, they are OK there. Problem starts when 2 worlds collide, that is why my system makes the intervention not painful and not harmful for kids
Unfortunately, instead of continue to develop my system further, so it could benefit kids it seems I am busy with the proving hypothesis of staying away from the world of normal people.
 
NEW YORK CITY

After a lot of disappointments in different programs, because of business approach to the issue of autism, finally I had a great setting. Manager, with whom we had been working for 17 years, created for me a situation I looked for, working with two low-functioning non-verbal kids with a purpose of creating relationship between them. The result was drastic changes in both kids’ behavior and forming the great attitude to each other.
The boy, who couldn’t tolerate any activity more, than two minutes, started to ask for book reading and could listen to them for a long time cooperating with another one, being actively involved in the process. The stubborn side of another one became more flexible, consider the specifics of his new friend. It was interesting to watch the relationship grow between them. They enjoyed each other company. I got inspired. The one, who spend years sitting motionlessly started to be active, exploring the world around him.
               
However, the regular staff didn’t like that change. Overall environment in residence was not adjusted for kid’s independency moving freely and such active behavior of the child put more responsibility on the staff.
So, the boy was” treated” with heavy medication for “improving behavior” and ended up in a hospital. I tried to convince authority to make some difference in environment, which would change the boy’s behavior, but to no avail. The boy was “treated” the second time, almost died. I realized that I could not continue doing my work as it will hurt the child. Manager could do nothing as it was out of his power. On my other job also the clients were treated with medication, because of some reaction to problem between the staff.
So I retired and moved to Macedonia in hope to work there the way I’d like.
Business got its victory

MACEDONIA

In Macedonia, a poor country, I was told how bad for special kids the situation was in the country and how they would be glad to have an experienced person to do the volunteer work. Of course, I hoped to work with kids by my way. In reality, my volunteer job intended to be for owner’s pockets and not for kids. Everything was again around money
As I wanted to be on my own I went to a local school with special education classes. Low-functioning kids stayed at home as System considered them unteachable. Also based on local religion, parents believed that kids were given them as a punishment for their own sins, so they were ashamed and kept kids in villages without any development. I wanted to take care of them, gave my articles to school director to create a program for my volunteer work. In result they accepted kids to school, but behind my back. Something went wrong and they asked for my help, promising independency.
I worked independently in a class with three kids and their parents, having complete freedom. I discovered many problems with parents, which should and could be easily solved. I was happy, parents and kids were happy with my approach. However the main teacher decided to deprive me independency, moving us from the spacious classroom, where kids could move freely to a small room next to her, so she could manage and control things. I left the school.
During that time I started to develop a project “Road to Self-sufficiency and Independence”, a place, where kids would be living for a few months, but as the owners of the place. Parents and specialists will help kids to learn and grow, while learning to keep “Controlling Hands” out of kids. I created NGO and invited parents to join, so together we would organize that Project to give their kids development, while parents would be paid. Parents organized my work in Red Cross. I told the Red Cross Director about my Project. People usually do not want to get understanding of the Project, but they accepted it, because they saw money opportunity. Red Cross made me to write application for government grant and said to wait ...
Behind my back, using my ideas, parents and Red Cross created their own NGO for having fun and presents for kids, focusing on business approach. They even refused to make me part of their NGO.  Because of that story, I lost my residence in Macedonia and had to move to Albania. Later they invited me to work for them.
         
Parents were working nicely with kids in class. According to my Project they could easy work on kids learning life skills and development. Especially, when parental Controlling Arms would be removed. Being independent, understanding the responsibility children feel and act differently. I saw it so much and wanted parents to see it as well. But they had different intentions
 Parents chose publicity, fun and business approach instead         
In Macedonia business and fraud got the victory

ALBANIA

Before moving to Albania I got a friend, working as a social worker in a school for special children in one of Albanian cities. I was trying to cooperate with her in order to create something where we could teach kids applying my system. Unfortunately, she was not interested to discuss anything, but money. Only that got her interest, discussing kids’ issues was irritating for her.
Then I moved to Vlora with idea to be completely independent with the idea of inviting English or Russian-speaking tourists with special kids, attracting them by low rent and working voluntarily with their kids. I hope to involve parents in kid’s development. I believe that main people in special kids’ lives should be parents as for every kid. But parents are taught to rely on professionals and often they don’t even try to form any real productive contacts to their own kids. That is what I wanted to help parents with. I failed it in USA, as parents there have big help from the government; I failed it in Macedonia as Parents preferred easy money. I came to Albania with Project in my mind, hoping this time being completely independent from anybody. And made a deadly mistake again getting people involved
In Russian agency I met Alvaro, a young Albanian man, an agent, who also was a lawyer. He suggested me a solution-a spacious house with garage and land situated close to the sea, in an area far from the tourists crowed noise. Kids could be on fresh air, dealing with nature -fruits and vegetables, being actively involved in a real life. So they could completely participate in “vegetable salad” process. Instead of having it when somebody put it with the spoon in the mouth, they could get it from a red tomato and green cucumber right from the bush, wash and cut them and so on and learning many different important things along the way. Seemed that place could take care of many issues simultaneously. House was old and ugly, but Alvaro started to describe how things could be changed, fixed, adjusted for my goal. Possibility of building the second floor and terrace and it’d not be expensive
            
He promised all possible help from local authorities. He showed a lot of empathy and concerns to issues around special kids, as I told him about my sad American and Macedonian experience.  He introduced me to his friend Eugen, a speech therapist, who supported my Project idea and wanted to take part in it. Instead of vague idea about tourists, I seemed had an opportunity to work with Vlora’s kids and even do my Project. I forgot the idea of independence and got inspired by new opportunities
Although my mind went to that direction, I did ask agency for specialist to inspect the house. Manager said there is no one like that in Vlora and  Alvaro convinced me as a lawyer, that everything will be done according to the law- things would be examined and fixed before the payment. I insisted to see the house inside for the second time to examine it carefully myself. Here Alvaro applied great manipulating skills
He started to rush me with payment, distracting my attention from the house issues to future plans; we met other people from the field, visited orphanages house and everywhere people showed support to my Project and gave assurances that it would be possible (in local language mostly!!!) I wonder if all those people lied to help Alvaro in his goal or he paid them for saying those things. We discussed with Alvaro his own involvement as the organizer of everything. But that time I trusted him completely, forgot all the safety and thought only about getting the place, fix it and start working. I was thinking only about opportunity finally fulfill my plans having such a great support
Well, all of that was only great good manipulation, making me blind and trustful in order to sell a damaged house, which should be demolished, the garage not legalized and the land a big part of it goes to government road reconstruction. The sellers, intelligent respectful people, whose children are creative an artist, a musician, paid good money to Alvaro for that dishonest deal. Alvaro opened his own business. Everybody reaction was OK, even the fact that money was intended for sick children and the fact that retired person is basically was left homeless
Government added to the story cutting one side of the territory last year and the other side left for indefinite time, so I even cannot use what is there left from my purchase. Municipality promised refund for the second year. During almost 2 years I hear only empty promises and open lying
I hired a lawyer. It was discovered, that notary made fake documents and used a fake translator, but they were lawyer’s friend. Police and prosecutor seem unable to hear all those things. For two years I applied to all possible sources to get any help, including American Embassy with zero result.
Unfortunately, here as everywhere else attitude to Autism is businesslike. And my Projects are not about making money, so nobody is interested in my approach. I don’t have money to get Justice by legal court process. People attitude is -if Justice System does not work, then cheating and stealing seems as acceptable. There are no issues of shame or consciences exist exists here. And nobody is able to understand my strange attitude and see only my not smart behavior about that buying deal. Everybody talk only about business and money
So, Money and fraud got a victory in Albania as well

STILL

During those years I published 4 articles and wrote 2 books. One was stolen by publishing company; I got nothing and now a book is available for free. People are reading. Twice in USA people tried to do research of my method, making my approach official, but did it behind my back. It was also about money and fraud.  My work is used by professionals in Russia and was mentioned as phototherapy during Russian conference. But when I wanted cooperation, they refused by business reasons
Compare to popular ABA technique, my Phototherapy is harmless and creative. Kids love to cooperate doing things, not for cookie or candy, but because they love it. Still I cannot continue developing it, but instead have to deal mostly with bad sides of human nature; healthy educated people for whom money is above all and nothing will change them.
It’s pretty upsetting, but maybe now it is even more important to attend that issue and show people why autism is growing so quickly and more kids prefer their own world to the world full of such unpleasant things

PROJECT for K.

I cannot use that house for living and I cannot work with kids there, but I still can keep working on some Project by myself. The idea is to create an environment where parents could learn how to help their autistic kids to master different life skills and how to create trustful, productive relationship with their kids. It would work that way
Similar to Dr. Miller program a child could be tested in a Special safe Environment, organized to attract kids’ attention and make him to do things on his own. For example, getting a cookie a child needs to open the container, to get a toy he likes he has to find a way to reach it. Even with such simple process children would behave differently-a child could do it himself, if not, he could ask an adult, he could start to be irritated and throw the container. So, the environment itself will show what would attract child’s attention and how he could handle different tasks, how a child  behaves, meet difficulties and so on.

Then he would be there together with mom, and relationship between them could be shown. In another environment a specialist would try to teach a child desired skills, giving parents recommendations how to teach a child at home environment. Later parents can get help through communication over the Internet
But I can do without real kids as well as I used to work with many different kids and remember their functioning. Putting on Internet, will look for people ready to help me to help kids with my ideas and not to use them for their pockets.
People are strange-everyone can have autistic child in the family. Why they attitude is so bad?

BUSSINESS and ONLY BUSINESS

It’s interesting that I started my way almost 20 years ago probably in most progressive place on the Earth at that time-the state California and finishing in the most backward place in Albania.
California was known as a place welcoming new ideas. I went from one organization to another and nobody wanted to listen to my ideas. Everybody had their own reasons, which they were explaining to me. They said 'Everyone has ideas. The problem is how to give them life" It was true. I could not. I failed. It was different in Soviet Union. If idea was good it was applied and I even had rewards

Still bewildered, I shared my feelings with a salesman of a book store and he said “Nothing could be done, until you get a business approach”. He was right. In people’s mind ideas are inseparably attached to money. At the same time business approach –instructions, manuals and hierarchy- so important for business, would not work with my idea for autistic kids, killing the idea.
And there is no way I can help those kids another way. So sad