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Life with Asperger syndrome, conversation with Mirek Jaworska, author of "Red Scooter Syndrome"

Life with Asperger syndrome, conversation with Mirek Jaworska, author of "Red Scooter Syndrome"


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Mirka Jaworska, with whom we decided to talk, is the author of the book "Red Scooter Syndrome" published on our website published in 2013 by Prószyński i S-ka, a very personal story about Michał, a boy diagnosed with Asperger's Syndrome, autism spectrum disorder .

Sosrodzice.pl: Today, more and more is being said about autism. The number of diagnosed cases is increasing. When you were facing the problem, there was little awareness on this topic. As you describe in the book, sometimes you even "made doctors" aware.

Mirka Jaworska: As I wrote in the book, knowledge about autism in Poland was in its infancy. I heard something about him: that they are such introverted children, generally handicapped, but often showing above-average abilities in narrow areas - savants. And that was all my knowledge on this subject. It never occurred to me that I would come across this problem so closely! Older generations, and I came across such ones, often had no idea what it was - their knowledge was comparable to mine (smile - editor's note)

Where did you get information on autism spectrum disorders?

Mirka Jaworska with Michał

M.J: I knew that with Michał "something is wrong, but what?". I had a confusion in my head, because he was developing physically and "task-wise" super: he spoke early, walked early. He did everything earlier than his peers. But ... That's right - but. I had no idea what was going on with him. What worries me? What makes me look at him like a cat on a mouse hole?

Because he was clearly hyperactive, I focused on my own diagnosis that it was ADHD and I started looking for publications about this disorder. The Medical Library and the University of Warsaw Library have become a mine of knowledge. I was a regular guest there (smile - editor's note). I had a problem because the publications that interested me were mainly in English. But I did it too. This is where I came across articles about autism, there I found information about "strange children" "and that it is not known why mainly boys". Then I read everything about it. Unfortunately, there was no Internet and no one knew the wonderful Google Doctor.

According to data from the Educational Information System in 2012, 7815 children and young people with autism attended Polish kindergartens and schools. How do you remember the first days in Michał's kindergarten?

M.J: Michał's kindergarten years were 1996 - 2000. The first days in kindergarten - failure. His tutor was a type of "Socialist Labor Leader". The children were to sit evenly, eat equally, play with one toy, and only take the other when they put the first one in its place. We knew from the first initial meeting that this would be a misunderstanding, but we decided to give it a try. At this first meeting, the lady informed us what the requirements are for three-year-olds: they are to be able to eat themselves, dress and undress themselves, and necessarily and absolutely have mastered "purity training", that is, take care of the toilet. I was so happy that they don't have to tie ties! I think she hated Michał - she often said that he wasn't listening to her, that he was ignoring her, that he didn't want to play the game she initiated, but was playing whatever he wanted. I think that she treated all his disorders not as a disorder, but as a personally cheeked on her daily cheek! Such a game - who pushes whom. We know - he had no chance.

Children with autism spectrum disorders find their best place in integration and therapeutic kindergartens?

MJ: It's not so obvious to me. If the idea of ​​integration - after all great - was really implemented in kindergartens as it should be - then yes. If in every kindergarten there were professional staff - professional - not a person after some course crowned with a proud certificate, then yes!
Otherwise, it is better that the child goes to a special institution, where there will be only the same children as him and where he will be given help and support, which will allow progress and development. Otherwise, no!

When Michał was young, I thought differently and did not know what I know now. At the time I thought that I couldn't condemn him to isolation from ordinary children, because I would be deprived of the opportunity to acquire the ability to move among them, I also wanted him to pull up, I was afraid that a special institution would pull him down - towards the disease, not towards recovery. But if I made a different decision, I would not put such emphasis on integration, he would be less exposed to stress, sneering, he would be less rejected.

However, I know integration centers that are great and really implement all the rulings recommendations, and above all the idea of ​​integration and children from the A spectrum feel there and develop great. It is in these kindergartens that all therapies are taking place and the child is "looked after" as needed. Unfortunately, there are still few really great ones. Still in big cities - just like that. What about smaller, quite small or villages? There still such a child is a punishment of God and it is better to keep them at home and not show them in public, because it is a shame.

At one of the forums about autism, a kindergarten teacher once said and wrote something very sad: that she knows everything, understands everything, but they (children from the A spectrum), scream for no reason, throw toys, require constant concentration on themselves and that she is very tired and comes back home. Every morning when he goes to work - he hopes that he will open the door to the hall - and they will simply not be there anymore. And this is not a statement from the past fifteen years, but a year ago!

Kindergarten is one thing. A lot depends on education and exercises at home. Can you say something more about it?

M.J: There are times now that a parent, if he has money - may not be the therapist of his child, and if he is - it's to the same extent that every parent is the therapist of every child. You can set up a child's weekly therapy with specialists, and only have the money and time to bring it - it's here and there.