Welcome to Holland!
When you expect a child, it is as if you were planning a holiday in Italy. You buy tourist guidebooks and start making plans. The Colosseum…The gondolas of Venice…You learn a few useful sentences in Italian. After months of expectation, you set out on your journey. When the plane is landing, the stewardess tells you: ” Welcome to Holland!” Holland? You say… Why Holland? I boarded the plane for Italy! But you’ve landed in Holland. You’ve got to get some new guidebooks. You need to learn a completely new language. You meet people whom otherwise you would never have met.. You catch your breath and cast a glance around, start noticing that Holland boasts wind mills, tulips and… Rembrandt. If you spend your life complaining about the fact that you didn’t get to Italy, you might not learn to enjoy the unique and pleasant things that you can find in Holland… (mother of a DS child)
”Though doctors in Romania consider autism to be incurable, that is only partially true. Autistic children can recover if they are diagnosed when they are between 2 and 7 years-old and if they are not physically disabled. The degree of recovery depends on the child. There are also cases of total recovery. I’m the parent of a five year-old autistic boy whose name is Radu. Over the last few years, I’ve experienced the greatest despair and I’ve understood how bad lack of information can be. I for one have found the resources and the way to help my child.”
That was Damian, the father of Radu, who today is a child like any other, maybe with some minor problems in terms of concentration, but with an IQ much above the average level for his age. The person who has been not only Radu’s father but also his tutor, physician and companion, told me how he managed to turn his son from a child registered as disabled, into a normal, healthy child: “Radu was four years-old and he didn’t speak… he was practically a kind of vegetable that would walk and smile now and then. We started collecting information about what was going on overseas, about the therapies that were being used and about the stage reached in the treatment of autism. That’s how we found out about ABA (applied behavioural analysis), a behavioural therapy, the only one which, from a scientific point of view, gives an autistic child the chance to recover.”
Damian and his wife Cristina bought books and started learning. When Radu was nearly 5 years-old, they brought over a consultant from London, who ran an ABA workshop for the two parents and for the 10 tutors, graduates or students of psychology, hired by Damian: “That is how the saga started. They worked with my son for 12 hours a day, actually while he was awake. I don’t know if he saw these as lessons, or rather as fun. 12 adults would look after him every day, working with him for each thing that he could do and little by little, from a child who could only do purely mechanical things, after two years, Radu ended up being a perfectly normal child, who goes to an ordinary kindergarten. From a child who wouldn’t speak and who wore nappies at the age of five, who wouldn’t reply to any questions - we had long thought that he was deaf - Radu is now a child who can speak English, ski, swim and draw; he recites poems during the winter celebrations, he enjoys life... he is a normal child.”
When Radu finished the stage during which he underwent behavioural therapy, Damian decided it was time for the little boy to be reassessed. Two teams of psychologists who did not have any information about the child’s medical record, put him through a series of 8 tests. Their verdict was the same: quote “Radu is a perfectly normal child, with above average intelligence, with minor problems in terms of concentration, but with no clinical problems.” Unquote. Damian and Cristina could have been relieved as their child was OK. But they didn’t stop, they didn’t turn their back on a community which they themselves had put together on the Internet. Here is Damian again. “At that time we said, OK, we can do it, we can afford it, we have certain abilities, experience, the necessary money and the determination to do it. But what’s going on with the hundreds of parents we had got in touch with over the two years, while we were facing the Golgotha of the Romanian system? What are they doing? Let’s do something, we owe it to ourselves and we owe it to Radu. That’s how the site autism.ro and the Horia Motoi Centre came into being, that’s how it all appeared, out of the wish to help others too.”
The Horia Motoi Centre is actually a house where children can spend 9 hours a day. Every child works with a tutor in two sessions, four hours in the morning and four hours in the afternoon. They learn everything from tiny gestures to complex actions, and they continue to do so until they are able to go to a normal kindergarten, without a companion. At the moment, there are 3 children in the centre. Two others have completed the therapy and are considered graduates. But the Horia Motoi Centre is just at the beginning. The most efficient way to start the process of recovery is to resort to a foreign consultant. Working with such a consultant costs between 12,000-15,000 euros a year. In addition, ABA is also expensive because of the people involved in the therapy. You need at least 3-4 tutors for every child and you have to pay each of them 800 euros a month. Bringing over a consultant alone costs 2000-2500 euros. What can you do if you are not from Bucharest, when you can’t afford to hire a councillor and 4 tutors, but you want to break the glass wall separating you from your child?
Milena and Dorin have managed to draw their daughter Mara out of the world of silence she was living in, by giving her a lot of love and attention and adjusting to her needs and abilities. The only way they could communicate with Mara was through music. Music drew her attention, calmed her, soothed her. “She showed great interest in songs and rhythm; and the only way to catch her attention was by singing to her: (singing) “Mara look at mamma, here’s the toy, look at us”. Once contact had been established she started to get to know us and love us and we could then communicate normally. It was very difficult, she had trouble sleeping, she woke up about 20 times a night or slept for 20 minutes, only to lie awake for another hour, and so on... for an entire day.”
Dorin taught himself to play the piano so that he could teach Mara. Milena has allowed Mara to draw on the walls and always keeps a paint brush at hand to offer Mara new canvases. And there was an explanation behind everything she drew: "Straight lines were called domestic lines... referring to the direction that she knew. Zigzagging lines were wild lines. You can tell that wasps grow old when the black line on their back turns grey... Frogs grow old when they get wrinkles. There’s an explanation for everything and she thinks about everything that goes on around her.”
For two years, 3 of the neighbours’ children played every day in the next room. Milena would take Mara there for a minute and a half for her to get used to it; she would quickly have to get her out of the room to calm her down. Now Mara and the three little girls are best friends. She goes to kindergarten, she takes riding lessons, piano lessons, she loves to draw and play, she is finally playing with dolls... What can Milena dare to hope for Mara, now that she is well on her way to normality? “She often says that at 16 she will throw a concert in England... she loves English and that’s what she wants to do... I recently received the most wonderful compliment: I was walking with her in the park, when a lady said she wished she had a little girl just like mine.”
Damian, Cristina, Milena and Dorin are just some of the parents in Romania who have managed to save their children from the fate doctors had predicted. They simply said "go home, buy the medicine and get used to the idea that one day your child may have to be hospitalised." According to the metaphor suggested at the beginning of the programme, although they were heading for Italy, they ended up in the Netherlands, and after a while started working as guides. Mariana, the mother of Vladut, one of the Horia Motoi centre graduates, says that without them and without the autism.ro forum, she would have been lost. “I was very lucky. When I arrived in the Netherlands, a Dutch man greeted me, took me to a hotel, helped me learn the language...I dread to think about those who arrived on a dark night and had nobody to wait for them. I can’t imagine why I was so lucky. It was maybe because I was so weak that I wouldn’t have made it without the help of those people on the forum. I have only one thing to say to those in such a dire situation: there will always be a friendly Dutch person to help guide you, at least on the forum.”
”Though doctors in Romania consider autism to be incurable, that is only partially true. Autistic children can recover if they are diagnosed when they are between 2 and 7 years-old and if they are not physically disabled. The degree of recovery depends on the child. There are also cases of total recovery. I’m the parent of a five year-old autistic boy whose name is Radu. Over the last few years, I’ve experienced the greatest despair and I’ve understood how bad lack of information can be. I for one have found the resources and the way to help my child.”
That was Damian, the father of Radu, who today is a child like any other, maybe with some minor problems in terms of concentration, but with an IQ much above the average level for his age. The person who has been not only Radu’s father but also his tutor, physician and companion, told me how he managed to turn his son from a child registered as disabled, into a normal, healthy child: “Radu was four years-old and he didn’t speak… he was practically a kind of vegetable that would walk and smile now and then. We started collecting information about what was going on overseas, about the therapies that were being used and about the stage reached in the treatment of autism. That’s how we found out about ABA (applied behavioural analysis), a behavioural therapy, the only one which, from a scientific point of view, gives an autistic child the chance to recover.”
Damian and his wife Cristina bought books and started learning. When Radu was nearly 5 years-old, they brought over a consultant from London, who ran an ABA workshop for the two parents and for the 10 tutors, graduates or students of psychology, hired by Damian: “That is how the saga started. They worked with my son for 12 hours a day, actually while he was awake. I don’t know if he saw these as lessons, or rather as fun. 12 adults would look after him every day, working with him for each thing that he could do and little by little, from a child who could only do purely mechanical things, after two years, Radu ended up being a perfectly normal child, who goes to an ordinary kindergarten. From a child who wouldn’t speak and who wore nappies at the age of five, who wouldn’t reply to any questions - we had long thought that he was deaf - Radu is now a child who can speak English, ski, swim and draw; he recites poems during the winter celebrations, he enjoys life... he is a normal child.”
When Radu finished the stage during which he underwent behavioural therapy, Damian decided it was time for the little boy to be reassessed. Two teams of psychologists who did not have any information about the child’s medical record, put him through a series of 8 tests. Their verdict was the same: quote “Radu is a perfectly normal child, with above average intelligence, with minor problems in terms of concentration, but with no clinical problems.” Unquote. Damian and Cristina could have been relieved as their child was OK. But they didn’t stop, they didn’t turn their back on a community which they themselves had put together on the Internet. Here is Damian again. “At that time we said, OK, we can do it, we can afford it, we have certain abilities, experience, the necessary money and the determination to do it. But what’s going on with the hundreds of parents we had got in touch with over the two years, while we were facing the Golgotha of the Romanian system? What are they doing? Let’s do something, we owe it to ourselves and we owe it to Radu. That’s how the site autism.ro and the Horia Motoi Centre came into being, that’s how it all appeared, out of the wish to help others too.”
The Horia Motoi Centre is actually a house where children can spend 9 hours a day. Every child works with a tutor in two sessions, four hours in the morning and four hours in the afternoon. They learn everything from tiny gestures to complex actions, and they continue to do so until they are able to go to a normal kindergarten, without a companion. At the moment, there are 3 children in the centre. Two others have completed the therapy and are considered graduates. But the Horia Motoi Centre is just at the beginning. The most efficient way to start the process of recovery is to resort to a foreign consultant. Working with such a consultant costs between 12,000-15,000 euros a year. In addition, ABA is also expensive because of the people involved in the therapy. You need at least 3-4 tutors for every child and you have to pay each of them 800 euros a month. Bringing over a consultant alone costs 2000-2500 euros. What can you do if you are not from Bucharest, when you can’t afford to hire a councillor and 4 tutors, but you want to break the glass wall separating you from your child?
Milena and Dorin have managed to draw their daughter Mara out of the world of silence she was living in, by giving her a lot of love and attention and adjusting to her needs and abilities. The only way they could communicate with Mara was through music. Music drew her attention, calmed her, soothed her. “She showed great interest in songs and rhythm; and the only way to catch her attention was by singing to her: (singing) “Mara look at mamma, here’s the toy, look at us”. Once contact had been established she started to get to know us and love us and we could then communicate normally. It was very difficult, she had trouble sleeping, she woke up about 20 times a night or slept for 20 minutes, only to lie awake for another hour, and so on... for an entire day.”
Dorin taught himself to play the piano so that he could teach Mara. Milena has allowed Mara to draw on the walls and always keeps a paint brush at hand to offer Mara new canvases. And there was an explanation behind everything she drew: "Straight lines were called domestic lines... referring to the direction that she knew. Zigzagging lines were wild lines. You can tell that wasps grow old when the black line on their back turns grey... Frogs grow old when they get wrinkles. There’s an explanation for everything and she thinks about everything that goes on around her.”
For two years, 3 of the neighbours’ children played every day in the next room. Milena would take Mara there for a minute and a half for her to get used to it; she would quickly have to get her out of the room to calm her down. Now Mara and the three little girls are best friends. She goes to kindergarten, she takes riding lessons, piano lessons, she loves to draw and play, she is finally playing with dolls... What can Milena dare to hope for Mara, now that she is well on her way to normality? “She often says that at 16 she will throw a concert in England... she loves English and that’s what she wants to do... I recently received the most wonderful compliment: I was walking with her in the park, when a lady said she wished she had a little girl just like mine.”
Damian, Cristina, Milena and Dorin are just some of the parents in Romania who have managed to save their children from the fate doctors had predicted. They simply said "go home, buy the medicine and get used to the idea that one day your child may have to be hospitalised." According to the metaphor suggested at the beginning of the programme, although they were heading for Italy, they ended up in the Netherlands, and after a while started working as guides. Mariana, the mother of Vladut, one of the Horia Motoi centre graduates, says that without them and without the autism.ro forum, she would have been lost. “I was very lucky. When I arrived in the Netherlands, a Dutch man greeted me, took me to a hotel, helped me learn the language...I dread to think about those who arrived on a dark night and had nobody to wait for them. I can’t imagine why I was so lucky. It was maybe because I was so weak that I wouldn’t have made it without the help of those people on the forum. I have only one thing to say to those in such a dire situation: there will always be a friendly Dutch person to help guide you, at least on the forum.”
posted by Andreea Demirgian at
5:14 AM
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