Balkan Adventures

Balkan Adventures
Дана Маденич
"Believe me. I read, I don’t remember where, either in the Old Testament, or in Carlos Castaneda, about a shaman. There was a drought - livestock was dying, people were dying. And the shaman said: “Make ditches. Dig ditches for rain.” “But there is no rain.” “Dig ditches and the rain will come”

Dig ditches! Whatever you decide to do, believe in it, believe in it, believe in it. If you don't believe, play faith. Act as if you believe. This is strength. This is absolute power. And then it will happen. Trust me, old fool. What worked in my life will work in yours. Never give up! Believe, believe, believe! Whether you are an agnostic, an atheist, whatever, it doesn't matter. Believe, believe, believe! How I believe."
Anthony Hopkins

HUMANITY or BUSINESS

Journalist from Ohrid, after talking to me one time, published very strange article.  Probably he just needed to write something for the Event-Autism Day. Everybody everywhere is concern a lot with that special day more than with other things. I hoped to make a point by that article, but I was not given a chance. 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, carrier or personal benefits. On Balkan I met no one who would be interested in discussing ideas for kids benefits. No one. Usually discussion quickly goes to money-power subject. 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 once 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. No matter how flexible I become, how much I'm willing to give up in order to have an opportunity to save the basics-it does not work. Instead of being in world of autism, where I am able to make a lot of good and productive things I continue learning the actual details of the the world which autistic kids prefer to ignore as a place to be
 
NEW YORK CITY

After a lot of disappointments in different programs, because of business approach to the issue of autism, finally I got what I tried to get for a long time. 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. With one I was working already many years. He was considered a difficult kid, insisting always on his own way. Slowly we build a system of compromises. The second one was a unique by starting talking almost on his own in the age of 13, although the officially developing speech stops at the age of 8 years old.

It was interesting to bring them together and see what would happen. The result was drastic changes in both kids’ behavior and forming the great attitude to each other. Common activity was book reading, something we did with the first one for many years.
The second one, 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 us and 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 growing between them. They enjoyed each other company. I got inspired. The second one, who spend years sitting motionlessly on the staff lap, completely in his own world, 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. Staff made complain.

So, the boy was” treated” with heavy medications 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 with another medication and 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 problem between the staff.

So I retired and moved to Macedonia in hope to work there the way I’d like. To work my way. It was other reasons for moving, but that was the main one. I wanted to work, not to serve System. Everybody saw that boy behaved very good with me, listened what I asked, happy when I come. I wanted the staff also do things my way, but they were against it and did only what System ordered them to do, obedient to System rules, no initiative and watching each other. I cooperated and did my things in the room behind closed doors as Manager arranged it. Staff knocked before entering. And even that did not work. System always wins. Business got its victory

MACEDONIA

In Macedonia, a poor country, I was told how bad the situation was for families with special kids  and how they would be glad to have an experienced person to do the volunteer work. Of course, I hoped to work with kids my way, which I honestly and openly presented. In reality, my volunteer job intended to be for business improvement, for owners' pockets and not for kids. Everything was again around money, business and the real Truth was hidden as usually. I wanted to be out and be on my own

 I went to a local school with special education classes. They said 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 by their parents, without any development. Those were exactly "my kids" and I wanted to take care of them, gave my articles to school director for helping to create a program for my volunteer work with those kids.

Well in result they accepted kids to school, but behind my back. Most things happen behind my back, when I need help of others Something went wrong with the boy I knew and they asked for my help, promising independency. Of course, they did not tell me the real truth, why they invited me to work . I felt that, but decided to go anyway. They accepted me without any bureaucracy  right away and gave me a class room. I chose 3 most difficult kids to work with

I worked independently in a class with three kids and their parents, having complete freedom. It was exited. 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 (my compatriot)could not find peace with that, although almost no students left-she could relaxed and do her things. Besides I told her and somebody from local TV that result we would present together. But human nature is human nature

She 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. She even could not wait for one day for me to get my staff. She moved it herself. Reason for that emergency they invented ridiculous-some of their teacher recently lost her husband, wanted out class and they cannot refuse her as it'd be not nice towards suffering person
The class stayed empty for a long time

"Money and power are main motivators for people's behavior"- used to say one American psychologist withy Russian upbringing
In first place it was Money, in second Power. I think in the third one it was both

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. Seemed it was a great idea
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 people's 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 in order to develop my system further. I hoped 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 huge help from the government ,so they did not have any interest as amount of help depend on the level of development; 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 here I made a deadly mistake again getting people involved in my ideas
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 a quiet 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 from the very beginning. Instead of having salad in the mouse, when somebody put it with the spoon, 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 Vitaly said there is no one like that in Vlora and  Alvaro convinced and relaxed 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. By 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 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 went 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 to it, 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 there 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  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 years in USA I published 4 articles and wrote 2 books. One was stolen by Moscow 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 Projects 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.
People are strange-everyone can have autistic child in the family. Why they attitude is so bad?

INTEREST as MOVING FORCE

Still I decided for dry time to move in defected house and do my Project without kids there. Not on writing, but with real stuff However that Awful Government Project killed mine. A year later workers came back and restarted work. They destroyed more things and left me without gate and with inaccessible entrance.
Huge construction tracks moved around with noise and dust. Then I was left without water

It seems as Life makes some experiment on me-will I give up or not
Is that stubbornness or something else? I'm curious myself

 I left job for good money for the System, hoping to do what I wanted without money, but in my own way for own enjoyment. Do the work which is needed. In result I lost everything and did not find any support

Why? Just because I got in bigger System, where a human being is egoistic and aggressive...and try to survive it not being egoistic and aggressive. I try different approaches. I'm curious which one would eventually work. I lost faith and seems lost hope.
But the interest still left