ATHENS – Ada Stamatatou is writing a book titled My Life with Yanni. That is the child she raised who is now 22. In the bookstore shoppers might think “I know what that is all about” and walk away – but they would be wrong. They have no idea. Yannis has autism.
The book is a labor of love expressing Stamatatou’s feelings for her child, and sympathy with all parents of autistic children. It is also a public service.
She decided go public with her story after seeing a video on Facebook, that shook her up.
“A lady was videotaping a young man around 20 years old, like Yannis was at the time, in a playground. He was behaving awkwardly – like all autistic people whose public behavior is a bit awkward.” The woman misunderstood the man’s behavior and thought he was a threat because he was hanging around at a playground, staring at the kids. She started screaming; taped him; threatened to call the police.
Stamatatou became very upset when she saw that the video had many shares. “I was very angry in the beginning, but then I realized it was not the lady’s fault. It’s society’s fault. People don’t know how autistic people behave on the street, because they don’t see many – so I decided to expose my son’s life with little clips from his daily routines and things we do together so people will understand how he does things, how he feels, and how I feel about the reactions of the public.”
She had been thinking about doing something to raise awareness about autism. A year earlier she ran in the Berlin marathon – her first – to raise awareness and help schools for autistic children that had financial problems in Greece due to the Greek economic crisis.
Yannis attends a school of the organization Kentro Aftismou – SOS and she is a member of the parents association.
Before her son was born – Stamatatou also has a 20-year-old daughter – she only had experience with an autistic person during her family’s summer vacations on the island of Aigina. There was the movie Rain Man – which for its time was helpful to the cause, but she says now it feeds misunderstanding. “Immediately when I tell people Yannis is autistic they say ‘oh he must be very clever’ and I say ‘no, he is not Rain Man. Even some parents, when they learn their child is autistic, think ‘Ok, he’s going to be a genius’” – they are thinking about Asperger’s Syndrome.
At the New York Marathon “I saw that many people run for a cause” and she was further inspired. “It’s unbelievable!”
There are several messages she wants to get out to the public and parents of autistic children.
“It helps the cause if people who have an autistic child are encouraged to go out and not be ashamed of the problems. The more that families show the problem to society, the more social awareness there will be and people will want to help. It doesn’t to help hide the children with disabilities – as we did in Greece until recently.”
There has been progress. “Today people with disabilities are active all over the world. They win Olympic medals and we are proud of them.” But that can be problematic too, because “we see them as heroes. No, they are not heroes, just people trying to go on with life. It doesn’t help that they are given standing ovations at the stadium, and five minutes later they forget about them.”
In other aspects of life, their struggle is to just be an average person. “And they want equal opportunities –and level playing fields in the rest of their lives, which means being able to go to a stadium with disabilities access so they can watch others perform, and to restaurants and public beaches with disabled entrances.”
Ada Stamatatou at the NY Marathon in 2017 for OAR Run for Autism. She decided to become a runner at 42. Her son Yannis’ father Andreas Goros is a triathlete.
CORONAVIRUS DARKENED THE NIGHTMARE
Stamatatos wants people to know the coronavirus restrictions are especially hard on autistic people.
It’s important to know that one of the elements of the disease is that autistic people are especially dependent having set routines in their lives.
“When you disrupt the routine, they get very upset. Before coronavirus Yannis would wake up in the morning, go to school, return from school, go to other activities – and the day after the restrictions he was ready to go back to school the next day.”
Life is very complicated for autistic people even without a lockdown. “He doesn’t understand that the weather changes every season and requires different clothes – he just understands the routine. He knows that when we live in Athens, he goes to school, and when we go to the summer home – even though we went March 10 – he thought it was summer. I had to adopt his summer routine and swim in the freezing sea. I bought a special suit so he could swim.”
DON’T IGNORE THE PARENTS OR THE CHILDREN
It would be very helpful, she says, if people publicly show support to parents – to say hello to parents and children. “When you smile and say ‘hi Yanni’ he might not respond, but he likes it, and I would like to see my friends do that. And I have friends who don’t talk to me about Yanni because they think it would make me uncomfortable – but that is wrong. I want to talk about Yanni sometimes, for people to ask how I feel and if our life is hard.”
Working – in her case, running – for a cause helps people feel better. “Because you have a chance to talk about what you are going though, and you feel you have a chance to give back to society.”
And at marathons “the people in the street see you are running for a cause and they cheer for you. You feel the happiness.”
PARENTS CAN’T DO IT ALONE
“What I want for Greece is for the government to build houses for people with disabilities to live in after 18, like other countries do. They can live as normal a life as they can there, and return to you on weekends and holidays.” The people are not thus institutionalized – she gets upset when people are accused of not being good parents who want their children ‘locked up’.
“That is not the case. Just as other children go away to universities to mature when they are 18, it’s the same with children with disabilities. The children don’t feel like they are imprisoned. For them, its freedom from the parents’” who have been hovering over them all their lives, she said. “I still can’t help treating him like a child, like helping him dress – I love him – but he has to become independent, and society needs to help me because although I gave birth to him and raised him, I cannot live all my life with a disabled child.”
She ended on a poignant note to make her point. “The last thought I have before I go to bed is ‘what will happen to him if I die,’ so it’s important for society to help him adjust to adulthood and to live a good life.”