We met Kamila as the creator of the fan page called My Child Has Asperger syndrome and author of short stories from the life of her son Mirek, such as:
When the mother is on sick leave, she’s in no hurry in the morning, so she can send her son to school with calm and care. When he put on his shoes, I noticed that he left the watch, so I asked him if he was going to take it. He eagerly put the watch on his wrist and was about to put on his jacket, when he shouted, ‘Stupid watch!’, and started angrily waving his arm around. The psychological light in my head suddenly flashed, so I said, ‘It’s not that the watch is stupid, it’s just too tight’, but he just repeated his words. So I told him once again, ‘It’s not that the watch is stupid, it’s just too tight’. Mirek took the problematic object off from his wrist and gave it to me. At this point, I said, ‘Good riddance. If it’s too tight, just leave it’. Then we exchange our affections by the door. ‘Good luck at school!’ ‘And you get better!’ (…)
Kamila writes about everyday interactions with her child, important conversations and the ups and downs. Most importantly, she also helps other parents (including the parents of children who develop normally) to understand the issue and explains how she and Mirek are able to live through the bad moments. She is an art therapist, and… probably has Asperger syndrome herself.
Marysia Dubis: When did realise that your son behaves differently? When did you begin to think that something may be off?
Kamila Ilska: When he was 4. It was nothing new in our family. I had suspected that I had Asperger’s myself before.
When I was 18 or 19 I learned about the disorder. At that point, I realised why I was strange, and why I had trouble getting along with my peers. Back then, this was a new concept, and my parents thought I had made it up.
What about Mirek?
My son was sent for a check-up late, in primary school, by his teacher, who noticed that he was different. The teacher said that everything was fine in terms of his learning ability, but he could use some psychological check-up. Before then, we used to manage on our own, by trial and error. At preschool, Mirek had therapy to aid his fine motor skills. When it turned out that Mirek had Asperger’s, I remembered the problems I had myself, and the problems Mirek had.
What was your first reaction after the diagnosis?
I began to let him do whatever he wanted. Of course, it wasn’t the best solution.
How did you feel?
The diagnosis made a lot of things easier. Before it, I felt that even though my son looked just like any other child, he still stood out in some ways. I thought that children who had a disability that you could see at first glance had it easier. A child that looks healthy but has functional problems is often simply regarded as rude.
Did people sympathise when they learned that Mirek should be treated a bit differently?
They did. Among other things, it was thanks to Mirek’s excellent form teacher in the first three years of primary schools, who convinced me to check what was up with Mirek. A meeting was held at school. The teachers shared their remarks, and I shared my observations and methods with them. We were also lucky that he attended an inclusive school, where the teachers knew how to approach a ‘difficult’ child.
What are the untypical behaviours that Mirek shows?
You definitely won’t see him among a group of peers. He’s only got one friend in class. He often turns his head left or right. He’s been doing that from the very beginning. Apparently that’s his way to calm down.
You said that Mirek has a single friend. And how does he function among the children in class?
Mirek doesn’t enter any deeper relationships. If someone is interested in the same thing as he is, he can talk to them. He takes everything very personally. He also used to have great difficulty remembering the other children’s names.
Was an inclusive class an obvious choice?
Of course not. I thought about all the cons and pros and decided that moving Mirek to an inclusive class would be a good step to take. I worried about stigmatisation, though. I thought that if he went to an inclusive class, he’d be treated as a disabled child. But the teachers notice his high level of intelligence. I can see that this was a good choice. Mirek’s doing very well at school, and the teachers motivate him for independence, instead of doing everything for him.
You often hear that children with Asperger syndrome have a remarkable talent for something. What about Mirek?
He’s especially interested in nature. He also loves video games and goes to science workshops.
When parents learn about their child’s disorder, they’re often shocked…
I was shocked, too. You can’t prepare for it, after all. In spite of any suspicions, you always assume the best-case scenario. The moment after the psychological check-up when the doctor called me in to talk and said that she suspected the Asperger syndrome… It was as if someone poured a bucked of ice-cold water on me. I had to cope with the entire situation, and I learned everything. Of course, this took some time. I just had to come to terms with that thought. I was shocked at first. I thought that I expected too much from my child.
When I learned about the diagnosis, my entire world went upside down. I thought that because my son has a disorder, I shouldn’t expect anything from him. It wasn’t his fault, so why should he suffer?
I was like that for a week. During this time, things that Mirek used to be able to do well became very difficult for him. He suddenly regressed in development, even though he was emotionally stable before.
Did you change your strategy?
I did, and quickly, because I got over it after a week. I decided that Mirek was still the same child that I had had so far. If we managed somehow for these 8 years, then we’re going to manage now, too. We went back to how things were before the diagnosis, except that now our methods were gentle and informed. I realised that there was a reason to Mirek’s behaviour. That it wasn’t because of his mischievousness or my incompetence. Such thoughts appear if the parent is incompetent and can’t handle their own child. But it’s not the child’s fault. You can try your hardest, but if the child’s having a bad day, you won’t achieve anything. Emotions are the most important thing. The child is unable to name, so they get frustrated, and this frustration then comes out in the form of hysteric reactions. A child with Asperger’s has a delicate nervous system that’s easy to overload.
How did you cope with that?
First of all, I began looking for therapy.
Where should parents look for support?
A diagnosis made by a psychiatrist, a specialist in autism spectrum disorders, was enough for me. So there was nothing to question. You should look for a way to live your life. I trusted my intuition, as I still do.
What difficult cases in Mirek’s functioning do you remember?
One time, Mirek had an unpleasant accident in the day care room. It was very loud in the room and there were a lot of children, so he hid in a wardrobe. Older children bullied him, and he didn’t know to react, so he vented his anger by jumping. On top of that, the day care teacher said to him, ‘Well? Are you happy about yourself now?’ She didn’t know that Mirek has Asperger’s. The matter was resolved later.
You suspected Asperger syndrome in yourself. What was it like in your case?
I often wonder why my teachers didn’t send for a check-up when I was a child. The Asperger syndrome was not that well-known back then.
Did you ever have to explain to someone what the Asperger syndrome is?
I did. I explain it to adult people, especially my friends. Not to children, because Mirek handles that himself. We didn’t try to hide anything from him during the diagnosis. He took part in the entire process and knew the reason for the check-ups. It was a very good decision, because we were able to go through it together. He explained to his peers that he had Asperger syndrome himself.
Does Mirek know that you’re running a social media website?
Yes, he knows everything. My goal isn’t to describe his case, but to describe the various situations in life people can identify with. Parents often say: that’s just what it’s like in my case! The fan page is where different parents meet and share their experiences.
Why did you begin to write?
I stumbled upon a dedicated blog and decided that this could help, because writing has a really good effect on me. I thought that I would start by doing this for myself, and perhaps help someone else this way. I got a lot of messages when I shared my post about helplessness. I wrote that there comes a moment when you stop believing in anything, and you reach a standstill. That post got the most replies. People told me that they needed it. I try to write mostly about positive things, because hope allows us to survive. The best way we, as parents, can help our children develop is through hope and perseverance, not necessarily strength.
Do notice any change in the community and society? Do you notice that people now know what the Asperger syndrome is?
People are definitely more aware than they used to be, but you get different attitudes. Some people approach Asperger’s like it’s a new fashion.
They say that everyone used to have ADHD, and now it’s the Asperger’s syndrome. When I told the ophthalmologist that Mirek has Asperger’s, she asked, ‘Don’t you think that’s overblown?’ I answer that it’s not about fashion in our case. I think that the doctor realised that much when she applied some drops to Mirek’s eyes and he started to twist in pain.
Did something worry you in Mirek’s behaviour when he was young?
He swung to the sides when went to sleep. Years later, I also read that if a child doesn’t want to lift their head, it means that they have a neurological issue. I noticed that he didn’t approach children. He just kept observing them from a distance.
What kind of exercises do you do with your son at home?
I buy therapeutic games that exercise emotions and feelings. It’s important to learn through fun. Games are what Mirek likes very, very much, so you can reach him that way.
Does Mirek treat the games as therapy, or does he simply enjoy them?
He treats them as just games, but it’s my method to sneak in some therapy. The most important thing is to sympathise with your child and think about what they need and like. And to note deficient areas. There was a fancy dress party organised at school during his first year. It was a closed event, so I was very anxious. Of course, Mirek cried a lot during the party because it was too loud. I had to think of something, because he wanted to take part in such events very much. So for the next party, we bought a set of noise protection headphones that workers wear, and he went to the party wearing those. He was dressed as a superhero, so I told him, ‘If someone asks why you are wearing headphones, just tell them that you’re a superhero with sensitive hearing’.
Difficult situations can probably be resolved with humour…
I often hear the opinion that children with Asperger syndrome have no sense of humour and can’t notice irony. Mirek always says that his life is full of laughter. He loves watching comedy shows, which is a form of therapy that helps him understand the nuances, humour and irony. I don’t focus all the time on the fact that we have Asperger syndrome. All I can do is observe what actions can have a positive effect. I think that focusing too much on Asperger’s is like not coming to terms with the diagnosis. It’s no good to be thinking about it all the time. The Asperger’s syndrome has always been with us and is going to be with us tomorrow and the day after tomorrow, so all we can do is to make our future better.
Do you have any advice for other parents?
You should explain to people what the Asperger syndrome is, and follow current research. Parents often have misconceptions about the disorders that date back to Asperger’s own research. Never allow the diagnosis to overshadow the child. You should look at your child as a living individual. Contrary to popular belief, children with Asperger syndrome know what empathy is, they just don’t know how to show it.
All photos belong to Kamila Ilska