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– If at least one child was on the playground, Krzyś was not able to enter there. He would lie down and scream – says the mother of 8-year-old Krzysia, who suffers from autism. After a few years, she discovered a method that allowed her to have real contact with the baby.
– When a person hears a diagnosis of autism, he begins to nervously search for information. It turns out that the problem is bigger than suspected. Often the child cannot go to kindergarten and one of the parents has to resign from work. I didn’t realize it at the time, but today I know that such a parent also needs mental support. I remember that the only thing I was able to do was lie in bed motionless with my son – recalls Katarzyna Śledziewska, Krzys’ mother.
The first symptoms of autism
– Autism is a big bag, a spectrum of disorders that ranges from lightly symptomatic to the deepest and most severe. The disease is diagnosed in mentally retarded children and in those with very well-developed academic skills, says Maria Dąbrowska-Jędral, a doctor dealing with autism.
The first symptoms of autism appear very early, often in infants over a dozen months, but are most visible before the age of 3. – Until the age of two, I did not see anything suspicious in my child’s development, some skills made me wonder and gave a wrong impression that a small, a bit introverted genius was growing. Then there were disturbing behaviors and no reaction, even to simple commands or to your own name. When Krzyś was three, we went for a picnic to Pola Mokotowskie. Balloons were distributed, which children popped for fun making a terrible noise. Krzyś didn’t hear anything. He didn’t turn his head, which we normally do instinctively. Then it got worse. He began to get hysterical in the presence of other people, even siblings. We redecorated the apartment so that it could have its own room, which did not include siblings – recalls Krzys’ mother.
Autistic behavior
Autism causes disturbances in social relationships. Autistic children quite often do not make, for example, eye contact with other people or it is very short-lived. A sick little one prefers to spend time alone. Sometimes I had the feeling that he couldn’t see and hear me. I smiled at him, said something, and he didn’t react at all – recalls Katarzyna. – I could wash him, dress him, feed him, but I couldn’t play with him. He did not catch or discard the thrown ball – he adds.
Autistic children also have difficulty complying with social rules due to a lack of understanding. Many of them are not following orders. In addition, behavioral disorders often appear – If the child finds himself in a new, uncertain situation, he may react schematically, e.g. he may want to run away, he may get a tantrum, he may repeat certain phrases, e.g. it is stupid, or he may start to repeat repeated movements, purring, talking to each other, etc. Some children refuse to take up the challenge by, for example, lying down or some other form of resistance, including hitting the other person. The variety of behaviors is quite large – says Dr. Jędral. – I remember that if at least one child was on the playground, Krzyś was not able to enter there. He lay down and screamed – remembers Katarzyna. He says that entering a store or other public place caused an attack of hysteria that no one can deal with. In such a situation, the parent feels helpless and incompetent. As a consequence, he stops visiting relatives and friends, and focuses on surviving without a fuss until the end of the day. – In this way, the child deprives himself of certain experiences that determine development. It’s like trying to get to know the city by walking one and the same way every day – explains Dr. Jędral.
Autistic children are often characterized by a lack of spontaneity or creativity in games, they do not propose activities or invent games. – Children with autism often do not play with toys. They spin in circles, swing, toys are lined up, and that is their entertainment. They are also unable to play symbolically, for example to use just any plush bowl to play Winnie the Pooh, explains Katarzyna.
Autism therapy
— There is no “gold standard” in the treatment of autism, just as there is no one ideal method of working, says Maria Jędral. Much depends on the child’s level of functioning, as well as the expectations and possibilities of the parents. The best known and described method is applied behavior analysis, also known as behavioral. – It is a very effective tool for teaching many needed skills. Competences in a child are gained through training with the use of a reward system and sometimes also punishments – explains the doctor. However, the method has some downsides. – After a few years of work, I realized that it does not touch the essence of autism, i.e. the problem with social skills. I had the impression that this therapy made my son a little robot – recalls Katarzyna. Behavioral techniques lead to the learning of habits and, indirectly, appropriate ways of behavior. The child makes progress in education, learns independence, goes through cleanliness training. However, with behavioral procedures it is impossible to teach a child to share what he sees and feels. The very eye contact learned using behavioral procedures is “unnatural”. – So what if Krzyś was learning to recognize animals, plants, etc., when he was still not paying attention when I showed him various animals in the zoo. He was not interested in me or what I was saying – says Krzysia’s mother. – I also could not accept the role of a mother reduced to a therapist, driver, feeder, sleeper. As a parent, I had the feeling that I was not giving him anything of myself. I was there, but not in his life. I did not raise, but I organized therapy. I was nervous when it was Christmas because it meant that there would be no classes for Krzys. Likewise, I didn’t like Sundays. Krzys’ free time was a waste of time for me because he didn’t study. This made me addicted to therapists, consultations, Krzys’ classes, and his programs – he adds.
RDI method in autism
– A training video convinced me to use the RDI method. Children crawl on the floor to the edge. Healthy does not know what to do, so he looks on the parent’s face for information on what to do next. An autistic child doesn’t. And this is the essence of the problem, and this method focuses on building relationships – remembers Kasia.
RDI (Relationship Development Intervention), known in Poland as a relationship development program, is a method developed by Dr. Steven Gutstein and Dr. Rachelle Sheely. Based on research in the field of developmental psychology and psychopathology of autism disorders, they developed a way of working with people with autism so that they could think independently in changing conditions, communicate effectively, create mutual relations in the family, make friends, and have a satisfying job. – The first step is to build a relationship based on trust between the child and its guardian – explains Dr. Jędral, the only RDI® consultant in Poland.
The method assumes that at some point there was a break in the relationship between the child and the parent, which prevented the so-called identification. For a healthy child, mum and dad are the point of reference, on their face the little one finds information whether it is safe. An autistic child in uncertain situations does not look for information in the parent, most often tries to avoid it, which prevents it from developing. – While working in RDI, a guide-student relationship is created, in which the guardian creates situations for his child that require him to act deliberately, to cope with dynamic conditions, i.e. in everyday life situations. For example, we can load dirty things into the washing machine together with the child. During the activities, we show the child that he is competent in working with us. We build a memory of successes in him, and thus the conviction that when he is with his mother, he does well. As a result, the child gradually becomes motivated to work alongside the parent, explains Dr. Jędral. By participating in various activities of an ever increasing complexity, the child learns to tolerate changes and unpredictable situations and becomes more and more flexible. – Of course, the memory of success requires constant recording, but with time the child allows us to do more and more – explains the doctor. She adds that this method is a second chance not only for the child, but also for the parents to build a relationship with the child that was deprived of them by the disease, and to experience moments in the child’s development that were missed. It restores parents’ self-confidence and lost competences.
A new method of therapy for autism
When Krzyś was 5 years old, his parents decided to change the method of therapy. – I was very afraid to make radical moves and that is why I decided to go to the source: training in Houston in the USA. The departure itself was a difficult decision for me. First, it was associated with high costs – a flight of 3 thousand. PLN, stay 1,5 thousand. PLN plus four-day training – over 6 zloty. Secondly, I had to leave my family for a week, which I did not allow myself to do earlier. I was also not entirely convinced that within four days I could learn enough about the new method that it would allow me to make a difficult decision to change the therapy. I also did not believe that Krzysiek’s dad and I could accept the challenge of taking care of our own child in an effective way. However, the meeting of Dr. Gutstein became a turning point in my thinking about autism, Krzysio, his therapy and my role as a mother. First of all, I dared myself – thanks to the appropriate training of the RDI consultant – to lead, teach and raise my son. It allowed me to become independent from therapists, classes and high costs of therapy – remembers Kasia.
The RDI program is led by parents at home with their child under the supervision of a qualified consultant. It is divided into 12 steps, which consist of small steps. The consultant, together with the parents, sets the next goal in working with the child and trains them on how to achieve it. The consultant’s cooperation with parents takes place during meetings, through regular analysis of video recordings of the work of parents with the child, intensive education of parents as part of an action plan tailored to the needs of the family.
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Autism Therapy Effects
– A lot has changed. I don’t remember anymore what an attack of aggression is. I have contact with my child. When we enter a new place, he looks at us and looks for information. He wants to help me in the kitchen, he clears the car with us – says Kasia. She adds that Krzyś did not “get into” any games with her before the RDI therapy. – When I was suggesting something, he screamed “I don’t want to”. Now it is ready for almost anything. I can think of what I want and Krzyś is playing with me – he says. – We lead a “normal” life, as long as it is possible with three children. We spend time together on vacation, traveling around Europe, skiing or at the seaside. Visiting a medieval town with a crowd of tourists or having fun in the Aquapark is not a problem for us. We go with the children to the cinema, playgrounds or go on bicycle trips. Krzyś rides a bike, skis and skates. He’s trying to learn to play tennis. He learned to write, read, add and subtract. It is in the first class of SP. I am aware that Krzys’ disorders are serious and that despite our intensive work, we still have a lot to do. The most important thing for me is that I know what to work on, that I have a plan … – says Kasia.
Text: Halina Pilonis