Tune into the very first episode of the Metautism podcast 🙌, as our guest, Iva Klarić, wholeheartedly shares her story as the mother of Šimun, a 9-year-old child on the autism spectrum.
Whether it’s the daily challenges, wonderful improvements that school brings, or the social inclusion issues, Iva openly portrays the ups and downs that we can all learn and grow from.
https://www.youtube.com/watch?v=YAxVXDGzwaY
Episode Transcript
Klara: Welcome to the very first episode of Metautism Podcast. I’m your host, Klara, and I’m super excited to be speaking with Iva Klaric from Croatia. Iva is the mother of Šimun, a nine-year-old child on the autism spectrum. In the last couple of years, she has really stood out in her local community of Slavonski Brod as coordinator of Plavi cvijet Association. Plavi cvijet in English means blue flower, and they aim to improve the quality of life for people on the autism spectrum, as well as their families, teachers, caretakers, and others. They did massive leaps of improvement with their programmes, initiatives, and activities.
This episode will be divided into two parts, so please subscribe or follow wherever you’re listening to your favourite podcasts, and come back in a couple of days for part two. Today, however, we will learn more about inclusion, education, inclusion in education, as well as how we can be more supportive and understanding as a society. Iva, welcome to the show.
Iva: Well, thank you very much for having me. We are, and when I say we, I say everybody in the association are very glad that this project is kind of coming along, and it’s really, really, something important for our children.
Klara: Yes, that’s amazing. I’m super excited that this podcast, as part of the Metautism Project, will improve the quality of life, not only for your children, but all, many children across Europe. But now let’s rewind a little bit, okay? And tell me the story of when Šimun was diagnosed, and how did that impact your family’s life?
Iva: There’s a saying that says, if you met one child with autism, you have met only one child with autism. What I want to say by this is that my experience of autism, and Šimun’s, and our family’s experience of autism, doesn’t have to be the same as the experience of other families and people.
Children that have autism are, as they say, on spectrum, which means that they really differ. And sometimes they differ so much that what I might feel that autism feels like, other people don’t. My son, Šimun, is nine years old, and we started having suspicions about autism, or some kind of a delay when he was a year and a half.
And that’s when we started going to doctors, different types of specialists. The truth is, at the beginning, they didn’t think that he had autism. My son, at the beginning, was specific. He did, he had great eye contact. He had this, he was kind of, you know, warm and everything. But he didn’t speak, and he had different sensory issues.
And over time, it became evident to all of us that it was autism. Now, Šimun is nine years old, and despite trying almost anything I could think of to help him, different types of therapies, we also travelled the world. We’ve been to America, to different parts of Europe, and my son still has big delays.
And he’s still non-verbal, and he doesn’t understand all of the language. He understands some basic language. He has difficult sensory issues. He has OCD, and we struggle with sleep, with eating disorder, with a lot of different things.
When I speak about autism, I like to say one thing, that when you kind of become a parent or a caregiver of an autistic person, boundaries of what is normal get, you know, far, far away. We kind of deal with things that are going at the moment, and I think of normal, whatever it is, acceptable for him at this moment.
Of course, there are things that are not acceptable in society, but there are things that he needs to, you know, express. And maybe in our typical world, it’s not acceptable to do things like that, but kind of when you live with autism, after a certain time, you accept it as kind of normal boundaries that are pushed back. This is why people that we, like local communities, kind of sometimes have trouble accepting our children, at the beginning at least, because they differ in these normal day activities tremendously.
Klara: Could you maybe give us an example of how, for example, your son may act, that a neurotypical person may see as something different or not usual?
Iva: Yes, of course. My experience of autism is like a roller coaster. Like one week we would be calm, and, you know, even seem neurotypical at one point when we walk around town and everything, and then he gets into his overstimulating period, let’s say it like that, and I have to consider that how he feels, and then I just kind of let him do things, something that might not be acceptable in other moments.
Last week, we were going through kind of a rough patch, and we were in a local store, and since my son was really not feeling himself, I kind of let him do things that he wants, as long as he’s not disturbing someone else. So at one point, because of his sensory issues, my son likes to kind of sit on a chair where he kind of likes to feel the pressure, so kind of lying on a chair where his head is dropping. So at one point, we were going around the store, and he sees it’s kind of like a small chair that people in the local store use to kind of grab something that is higher, and he sat on that, and kind of even lied on it, he was in a corner, not disturbing anyone, no one was there, and I kind of let him do that.
He was silent, he didn’t disturb anyone, and I was shopping like a metre from him for something, and at one point comes a woman with a husband or a boyfriend, and I see that she’s looking at him, kind of wanting to say something to her husband, and I just asked him if he was disturbing them, and she said no, but kind of, she was saying like but and show, and kind of pointing to him, and I just said like, this is something that I decided today is okay for us, because the alternative is so much worse at that point.
Sometimes my son is, when he’s overstimulated, he’s very loud, not loud in terms that he’s screaming, but he has this repetitive sound that he likes to make, and when he is kind of okay, I try to silence him, because I think this, he needs to learn that at certain situations this is not acceptable, but again, when we are in a rough patch, I kind of let him do that, and I know that it’s not typical, and it’s not something maybe even acceptable in some situations, but it’s something that he needs to do at that point, and kind of stopping him at that point might even get him overstimulated, which can lead to aggression, or out aggression.
Klara: Yeah, what I can hear is that you as a parent need to have empathy, but also over the time you recognised the signals from him, and how you can maybe communicate with him, and show him what he can do, or he cannot, because as you said, maybe letting him do something is better for calming him down, and making him feel better than maybe disapproving of something, or so on. Did I get that correct?
Iva: Yeah, yeah, you’re completely correct. I watch him like do things throughout the day, and I always kind of, I’m measuring my own responses to his behaviours.
Klara: And Šimun, he’s going to school, so how are his days at school?
Iva: My son started school this year, so he’s a first grader, let’s say. We had delayed school for two years, because he has also health problems aside autism. He was diagnosed with diabetes a year, less than a year ago. When we were enrolling in school, I didn’t really know how this is going to be, because he tends to have a difficult time accepting new people, and assimilating to new experiences, to new school.
But it was better than expected. I think it was just the right time for him to transfer to school, and he felt like he needed something more challenging than kindergarten surroundings. And what I always say, as a coordinator of our association, I see that the same experience goes with almost all families.
Our children thrive on schedules. So when they go to school, and they have some kind of responsibility to, you know, get up, and they have, they know what they’re going to do in the morning, in the afternoon, they’re usually calmer throughout the day. And when we have periods of not going to school, specifically if they are longer, even for Christmas, which was a few weeks ago, after a while, we all see that kind of these unwanted behaviours come crawling back out of, I guess, out of maybe boredom from when they’re at home with their parents all day.
Although, I have to say that all parents really try to make their children’s day, you know, as active as they can. I know myself, I’m, people always say that they’ll always see me in the car or somewhere, because we’re always somewhere going, just to give him different type of activities, because I know that he is going to be feeling much better when he is, you know, doing different things and not just being at home. For us, school was kind of the best thing that could happen to him.
Klara: Amazing. I’m super happy to hear that. But you also proved that having a purpose in life for Šimun makes big difference as well as for any other neurotypical person, let’s say that way.
Iva: Yeah, that’s definitely true. My son, and as I see many other children with autism, they really thrive on having responsibilities, something new to do, something challenging to do. If it’s school when they’re younger, or if it’s something to do when they’re older, they really need a purpose in life, just like any other, as you said, neurotypical person to feel better and automatically those unwanted behaviours kind of calm down and the life for them becomes easier.
What I didn’t say when we talked about school is that my son goes to school for children with specific educational needs. So all children there are children with different difficulties, and he goes in a really small group, and it’s really kind of assimilated to his needs. My son, as I said, he’s nonverbal. He’s still nine. And when we were enrolling in school, as a teacher, I know that he had no place, at least for now, in our typical schools, because they are still not prepared for children with such specific educational needs as my son.
For the last years, I really tried to talk about inclusion more within our schools, because we are all aware that for the last maybe 10 or more years, there are more and more children with different difficulties enrolling in regular schools, which is great, and inclusion kind of on paper exists in Croatia.
But in real life, like when children are in those classrooms, we see both teachers and children and parents that kind of don’t know what to do, because what the educational system expects from them is not just from children, but from teachers and from learning goals. It’s not really individual as it should be, because children with any kind of educational difficulties are really very, very specific, and when making some kind of educational process made for them, you really need to go and be very much individual about their abilities and disabilities.
Klara: You often emphasise how much in contact and in communication should teachers and parents be, so why is that so?
Iva: Well, I always say that our children are very specific, and it takes time to get to know them, to see what triggers them, what triggers their unwanted behaviours, what calms them, what helps them to calm, and even for us parents, it kind of takes even years to learn, to see the signs, to kind of stop when you see that your son or daughter is going to get overstimulated.
This is why I just can’t find a reason why shouldn’t parents get, let’s say, teach a teacher or educator about their own son or a daughter, just because it will be much easier. I see a lot of schools that kind of don’t allow parents to be a part of this educational process in that way, and I think this is a big mistake, because when children come to school, it takes two or three years for them to learn about that child, which can be avoided if they only kind of get parents much more involved.
Klara: Wow, this was such an amazing and inspiring part one of our first episode. Don’t forget to subscribe and follow wherever you’re listening to your podcast, and come back for part two. Of course, thank you, Iva, for this first part, and thank you to the Erasmus+ programme of European Union for funding this project. All opinions are our own. Until the part two, bye-bye!