An autistic child, a change for the whole world

Carmen Ghercă. Known today as a volunteering president and vice-president of ANCAAR Iași and FEDRA, two organizations for autistic children and adults. But 21 years ago, Carmen was the mother of a boy who would be diagnosed with autism, in a time when doctors wouldn’t give him any chance of evolution, even more so, advising Carmen of abandoning him. With her husband’s support, Carmen did everything she could to prove them wrong, and furthermore, she started helping other parents  who have children with  special needs. These children need love  more than anything else, not isolation.

Carmen was born 46 years ago and she believes she was gifted with a passion for kids. Her dream was to become a governess, but she ended up having a career in IT. She met her future husband and six months later they got married. The moment she found out she was pregnant, she was over the moon, and for three years, everything seemed to be as it should. Then there were signs that Robert wasn’t behaving normal: he would stay away from the other kids, he wouldn’t turn around when his name was called out, if he was focused on something that he really enjoyed doing, he wouldn’t look into other people’s eyes and, although he was big enough to start talking, he simply wouldn’t. Carmen and her husband decided to take him to a doctor.

They have walked a long and complicated road together, going from the general practitioner to different specialists in ORL, Psychology, both in Iași and Bucharest, but nobody seemed to narrow down the problem. Several months later a neurologist wrote down autism as a diagnostic. “As simple as that, a written diagnostic on a piece of paper. No other information, no explanation about what it means and what can we do. I got home, tried to find some details on the Internet, there were only a few, in English, with specific terms; tried to find some books, but they also had little information. For months, we were like heading towards disaster, a dead end without any chance of getting out”, Carmen says. Facing a severe diagnostic that nobody had any clue about, Carmen and her husband were living a nightmare.

Not only were their questions left unanswered, not knowing if Robert’s autism is a genetic disease, or if it’s their fault as parents or not, but they weren’t even encouraged to find a solution. “One of the physicians we went to told us to our faces that we have no chance with this baby and that it would be best we abandon him and think about having another one. You can imagine that when even a physician you go to for help or advice is telling you something like this, as a parent is something terrible. I was simply exhausted, I was suffering from depression, insomnia, my mind was filled with  these thoughts about my kid’s future, it was awful, we thought our life was over”, Camen says.

They have tried dozens of alternative therapies, quackery, bioresonance, they desperately searched for a kindergarten that will accept Robert along with the regular kids. They used to find him all alone, in a corner of the room, so he wouldn’t bother the rest. This was until they realised and accepted the fact that Robert has a different brain and that he needs to communicate in his own way, a way that can really help him.

13198427_1271381472874179_6057185732998961940_oWith the support of Star of Hope Foundation and Ancora Salvării Foundation, Robert followed a specialized therapy for the last few years and started studying at a school for children with special needs. He is to graduate from sophomore year in 2018. His development was contrary to the initial expectations. “Robert is non-verbal, but we learned to communicate through sign language; he also learned to write and read and he can explain to us what his wishes are, we even have an app on the tablet that helps him put pictographs together, and all this are decreasing his frustrations, because an autistic child gets frustrated when he fails to make himself understood by the others”, Carmen says.

11115606_1007197312625931_3931928181564455202_nHowever, Robert is not the only one making progress. Attending classes for parents held by the Star of Hope Foundation’s specialists, Carmen found out that she is not the only mother of an autistic child in Romania, as she thought she was, so she started connecting with other parents and specialists in and outside the country, following the advice to set up an organisation that can bring them closer. This is how ANCAAR Iași (National Association for Children and Adult with Autism from Romania) was founded in 2003, Carmen being its president since then. ANCCAR is now helping 30 kids and 60 parents, in a special support center, through different projects, some with European finances, some thanks to donations.

11081195_1010688562276806_2765242334713107497_nAlso, in 2010 FEDRA (Federation for Autism Spectrum Disorder People’s Rights and Resources) was founded, Carmen now being vice-president. Not only that she got to visit different organizations around the world to gain more experience, but she also got to militate for the rights of the people with autism at Bruxelles, through a petition. Aware of the fact that her mission, although not an easy one, is still ongoing and it will be until the day she dies, she believes that, going through this experience, she has managed to change herself in a positive way.

Last, but not least, Carmen enjoyed her husband’s support, and despite other families that usually break up, mothers raising kids by themselves, Carmen’s family become stronger than ever. Encouraged by other parents who have decided to have a second child, even though the first one was diagnosed with autism, Carmen and her husband faced their fears and this is how Paul was born, 13 years ago. A healthy child who gave them the chance to experience another kind of parenthood, making their family love turn bigger and having a wonderful relationship with his older brother.

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Since parents’ bigger fear is usually their autistic kids being left helpless, after they grow old, Carmen hopes that a center for people with autism will be founded in Romania to also to have, as she has seen in other countries. A place where adults with autism, without being isolated or discriminated, are encouraged to become independent and their activities are welcome. She believes that there is hope, as she had faith in Robert’s development, in spite all the barriers they had to face. Most of all, she believes that God has a plan for the kids and adults with autism, so their life can be beautiful, even though they are different.

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This coverage is part of the #saniting project – “One step on the edge of life”. Any donation for building an emotional balance support center is welcome.