Ada Stamatatou is John's mother. John is autistic.
Ada has decided not to hide, to discuss, to share experiences. For herself, for the good of her own family, and for all the others who are ashamed and act as if she did not exist.
“It's very difficult to take the first step, to go out and talk in person. You go through many stages, starting with the assumption that your child has a problem. You have to do a lot of work with yourself. There is great sadness.
John was diagnosed with autism in his two years. S.at eighteen I decided to change. To deal with all of this grief that I was living with as I tried to do some things for John. For his adulthood, I started posting stories on Facebook with Yannis on Facebook last year. To share it and through me to let people know what autism is. Autism is a brain disorder that does not appear to the child externally. As he grows older, of course you can see it from his reactions.
I was lucky enough to live abroad when John was diagnosed. A woman told me in a clear way. He told me by word: “John is autistic. Go home, and if you believe it, come tomorrow to do some work. ” It was like a knife to the stomach. I didn't understand what he told me. I came home and hated her. With great effort, I managed to believe it and after a few days, not tomorrow of course, I went and found it. Only if you understand and accept it can you achieve some things. The only solution is early intervention, with specific methods to communicate with your child in their own way. Get into his own world and find yourself somewhere in the middle. Too many parents try to make autism normal. It can not be done. It will never happen, never.
When Yannis was diagnosed I was pregnant with my daughter. Fortunately. Why I don't know if I would dare to have another child out of fear.
It goes without saying that my daughter helped me with all of this. It's the other side. From endless sorrow to endless joy. It was and is one that balances incredible depression. It is definitely salvation. I am very lucky that my daughter was not born autistic. Because there are families where both the second and even the third child can be autistic. It is terrible. We do not know if it is hereditary but it is definitely genetic. It has to do with the brain neurons. Science is in the experimental stage. Autism moves through a spectrum. The autistic is not like Dustin Hoffman in “Rain Man,” as people believe. He suffers from Asperger's, has serious social deficiencies but is a mentor. Not all children are intellectuals. They usually lack speech, they have the audacity, that is, they like to keep repeating the same things, they lack social behavior along with repetitive behavior, They keep doing the same thing because it reassures them. And while you may go crazy, you have to understand that this reassures him. So you have to give him his time.
Of course you need psychological support to deal with all this. And I advise all parents to do the same. How to get it out. Only if you discuss it, not that the sadness will pass, but you will feel better, you will not be alone.
Everyday life is very difficult. You get used to it, of course. I'm John's mother of nine years and I live with autism at seven. To cut John's fingernails, let's say, it may take forty-five minutes, because he may not want to leave. And if he agrees, he can then collect them, cut them and want to put them back on his fingers. You have to learn everything from scratch: Dress up, wash his teeth. One of the most difficult is to cut his hair. The autistic has a great sensitivity to the face, to the ears. John has eating habits, not everyone has. He learned to eat meat at the age of ten. It was a great success when he ate skewers.
You never want to believe your child has something. So the days pass. Then you say he's not talking. You hear them say, “He's a boy, he'll be late to talk.” Again the days, months pass, and all of a sudden you start to understand. If you have open eyes. This is the most difficult. A mother who does not want to admit it will not see her child in the playground different. We lived abroad, at first, away from families and relatives. Only John, his father and I. I can say that his father accepted it before me. I went through the process of early intervention and a little bit more.
There are always some who try to exploit their parents children with problems. At first I had given in too. As if I'll try them all, I'll do them all. So I cooked in special pots, we ate gluten-free foods, I challenged vaccines, especially MMR, triple. I was wrong. In addition, the doctor who supported this was convicted and his license revoked. I gave a lot of money to reverse all the vaccines that John had done wrong. I did dolphin therapies, that is, Ioannis was swimming with dolphins, he was riding. They all help but they don't heal. They don't heal.
At some point John's father brought me back to reality. I realized that I was in a craze and I realized that John only with special psychotherapy, speech therapy, occupational therapy will manage to conquer things. And with incredible love, with incredible patience. So John has great success today. He learned to ride a bike, to swim, to put his head in the water. The autistic does what he does when he wants to.
It is very difficult to manage each other's eyes, especially in the beginning. You are ashamed. Not only is the country where you live wrong there are many small things like noise, cornering, music that an autistic person can't stand.
My daughter always lives with John. He doesn't know otherwise. Once, after a kids party, I remember, it would be around seven, she asked me if autism sticks, because her classmates asked her. Then she asked me if she would have a child with autism. I replied to her that I did not know and told her that I hoped that until science had progressed. My success as a mother, because my daughter loves her brother, is that I never obliged her, I didn't force her to do things with him. Now she does not like publishing the subject, but she understands that I do it for the better. At John's 18 last year, I decided to run a marathon, the Berlin Marathon, with Charity for you, an initiative of Holmes Institution Support gyms. I took over the Theotokos Foundation, though my son never went there. But I wanted to support what she does. He teaches adults a job: a confectioner, a gardener, a cook, and he tries to find a job for them. Next November I will be running the New York Marathon to support the World Autism Organization which is raising money for research. I'm going to wear the Run for Autism blouse.
I have had a cynicism over the years and a black humor around it, a funny side to face. Because, bad lies, the whole family is affected by autism. There comes a time in your life that you have accepted that this is the way things are. But you don't want to think about it all the time. Go along. You cannot think of the future, because you will end up with the question, what if I die. And because this question is not answered, you better not think it. Go day by day, month by month. Look at the small advances, the small pleasures. John is laughing at some things and laughing when he has done a cunning thing – so I laugh with him too. And he understands it. It's bad when she's crying. Why don't you know why she's crying. Nor can you ask him and answer you.
At first it was very heartbreaking. Then you get used to it too.
John's father lives abroad and sees him three times a year. He is looking for him, missing his father figure. I have a normal relationship with John. He knows I'm his mom, we speak in specific words, he asks for what he wants. We're not discussing why it's abstract. The most difficult is the time. He knows tomorrow is soon, but it can be the same afternoon. That's why you make a calendar and erase days. When John wants time to pass, he simply erases the dates all together.
I love my kids exactly. I've thought about it too many times. I tried and try not to judge either of them. Nor to exaggerate against my daughter in order to balance the drama we go through in our home.
Adolescence, late adolescence is something you cannot explain to John. He has to find out for himself. Now it has a lot of nerves. It's been three years since he hit his head against the wall – it's common for autistic children to want to do harm to themselves because through pain they feel better. A high-minded autistic person had said that “I feel like in my mind a wasp eating my brain”. I was thinking of this wasp when I watched him for hours doing this, and I tried to put my fingers between his head and the wall, and I went down. The violence against himself passed on to me. As a teenager he turns his aggression on me, being his parent and pushing him to do the things he needs to. At this stage he did not want to hang out and hit me. I then asked for the help of psychiatrists who explained to me that John is growing up and wants to wean. He wants to do it all by himself. And that takes a long time.
You have to adjust to his current situation every time. Autism is a chart with a zigzag line. If you manage the situation properly, the line will eventually go up, but with many up and down. There are parents who live in ignorance, who go to church and light a candle and believe it will pass. No, I'm not like that. I was lucky enough to have a scientist brother who informed me that he hadI searched, I read, I had the mind and the will.
The current government is trying to deconstruct children's treatments with problems, not just autistic. It is trying to lower 45% of the commission that EOPPY gives, making the treatments almost impossible. We went down the streets with the experts. We have been promised that this will not go ahead and that voting will be delayed. Do not believe. I believe it will be voted on. Initially, the welfare benefit was received by IKA, after being diagnosed by a public hospital, and lasted three years. But autism is something that doesn't go away. So the tails were a nightmare.
The three-year term was later abolished for illnesses such as autism and down syndrome, and life-long benefits. Throughout this renewal of benefits, John grew into an autistic person with a severe mental retardation, a “promotion”, that is, an increase in the benefit. But this process is also extremely painful. You must first give up the previous allowance and then follow the procedure for the next one. And of course collecting all these papers takes months. I've been waiting for the last year, so I'm not getting any allowances. Logically it should be filed back. But you never know …
There are no special public schools for our children, they are few. There are private ones. Typically, with free education, all children can go public, even if they have a problem, but not a serious one. Theoretically, on paper, there is always the possibility of a shadow teacher, shadow teacher, or a parallel classroom. My son used to go to special school in the past and I have met great teachers. The state should move at an easier and faster pace for diagnosis, early intervention, to set up schools. Unfortunately the state has not taken care of the children with problems: They can go out so that society can get used to them and not turn a blind eye. “
The article was first published
27 | 04 | 2017 by MIRTO LOVERDOU