Ever pondered how complex the journey of raising an autistic child can be? It's an untrodden path filled with unique challenges, unexpected joys, and profound learnings. In our latest episode, we invite you to step into the shoes of Ionit Sabatello, a courageous mother, as she shares her personal voyage of navigating her son's autism diagnosis since the tender age of seven.
Ionit's tale takes us from her homeland of Israel to her current residence in London, painting a vivid picture of the obstacles faced during her son's diagnosis process, exacerbated by the language barrier and a change of environment. She provides a heartfelt insight into the early struggles her son underwent in school, the eventual relief a diagnosis brought, and the incredible progress he's made since. We delve into the unique family dynamics, highlighting the importance of understanding and addressing each child's individual needs, and the struggles and triumphs of Ionit's son's interactions with the world around him.
As we round up our discussion, Ionit takes us through her journey of acceptance, shedding the self-blame and guilt, and learning to embrace her son for who he is. We also discuss the indispensable role of seeking support and resources, and the power of communication in building a robust relationship with her child. Tune in to this episode that promises not only to touch your hearts, but also to provide invaluable insights and advice to those embarking on their own autism parenting journey.
https://tonymantor.com https://Facebook.com/tonymantor https://instagram.com/tonymantor https://twitter.com/tonymantor https://youtube.com/tonymantormusic intro/outro music bed written by T. Wild Why Not Me the World music published by Mantor Music (BMI)
Ever pondered how complex the journey of raising an autistic child can be? It's an untrodden path filled with unique challenges, unexpected joys, and profound learnings. In our latest episode, we invite you to step into the shoes of Ionit Sabatello, a courageous mother, as she shares her personal voyage of navigating her son's autism diagnosis since the tender age of seven.
Ionit's tale takes us from her homeland of Israel to her current residence in London, painting a vivid picture of the obstacles faced during her son's diagnosis process, exacerbated by the language barrier and a change of environment. She provides a heartfelt insight into the early struggles her son underwent in school, the eventual relief a diagnosis brought, and the incredible progress he's made since. We delve into the unique family dynamics, highlighting the importance of understanding and addressing each child's individual needs, and the struggles and triumphs of Ionit's son's interactions with the world around him.
As we round up our discussion, Ionit takes us through her journey of acceptance, shedding the self-blame and guilt, and learning to embrace her son for who he is. We also discuss the indispensable role of seeking support and resources, and the power of communication in building a robust relationship with her child. Tune in to this episode that promises not only to touch your hearts, but also to provide invaluable insights and advice to those embarking on their own autism parenting journey.
https://tonymantor.com https://Facebook.com/tonymantor https://instagram.com/tonymantor https://twitter.com/tonymantor https://youtube.com/tonymantormusic intro/outro music bed written by T. Wild Why Not Me the World music published by Mantor Music (BMI)
Speaker 1:
Welcome to why Not Me the World podcast, hosted by Tony Mantor, broadcasting from Music City, usa, nashville, tennessee. Join us as our guests tell us their stories. Some will make you laugh, some will make you cry. Show life people who will inspire, and show that you are not alone in this world. Hopefully, you gain more awareness, acceptance and a better understanding for autism around the world. Hi, I'm Tony Mantor. Welcome to why Not Me the World. Today's guest is Ionit Sabatello. She's originally from Israel, living in London now. She has two children, one which is autistic. Welcome to the show.
Speaker 2:
I appreciate you. Thank you really. Thank you so much for having me here.
Speaker 1:
Oh, it's my pleasure. So you have two children, one girl that's neurotypical and one son that's autistic. Can you tell us a little bit about him and then tell us how you came to find that he's autistic?
Speaker 2:
So Daniel at that time was 15 months, he was very young. So, yeah, so, but that actually, to be honest, when we arrived here and he hardly talked, yeah, and it took us a lot of time. It took him a lot of time until we understood him. So the fact that we came from Israel was an element of delay there, because they thought they kept on telling us oh, he's bilingual, so that's probably the reason. But, yeah, I felt that there is something else and, to be honest, his dad and I are not together now because that caused a lot of issues as well, when I knew that there's something there that is not quite right and I thought to get some assessment in place and I fought for to have someone to see him and support him, Because the first few years he was, he was diagnosed only in 2020. So he was seven years old. I can understand that completely.
Speaker 1:
Speech is difficult when you move from one area to another area in the same country, but when you move from one country to another country, that does make it a little more difficult and a little bit harder to diagnose, probably.
Speaker 2:
I think, especially with the first born, because as a new mom, you don't know what you don't know, simple as that. Like you don't know when is the right time for things to happen and even though doctors can say one thing, you say, okay, but maybe my child has his own time. We're all different, even as adults. We do things in different times, and the move as well perhaps affected the assessment. And yeah, it's interesting. Can I ask you a question as well, tony, if that's okay? Sure, from your experience, from your experience with my situation, with our situation here, the dad refused to acknowledge the fact that there is something wrong with the son. Like even even after being diagnosed, he thought, like it's not real, probably there is a mistake or whatever. Is it something that you see often with your, with the people that come to your show?
Speaker 1:
Actually, most of the men that I've spoken with have dealt with it and figured it out and moved forward. I've talked with one that it took him a long time. He pointed fingers, said it wasn't his fault, but then he ultimately realized that he was the problem because he wasn't accepting it. Most parents, unfortunately, are put in a situation that they've never been put in before and, because there's no guidebook to go with, they question each other, they argue, they fight over what's happened and then ultimately it can cause a huge problem with their marriage and mostly divorce. I think the divorce rate is about 80% in the autistic community.
Speaker 2:
Wow, interesting. Yeah, I think also I heard somewhere that autism actually in some cases is inherited through the dad or the masculine lineage there, and I think for a lot of parents, dads especially it's hard for them to think perhaps something within them has similar traits and they're. Yeah, anyway, it's interesting, interesting.
Speaker 1:
It is interesting. There's a lot of things out there. Some are true, some are just well not so true, I guess. So how was your son in school? Did he have any issues that he had to deal with? How did that go for him?
Speaker 2:
The first few years in school, and I don't know if it's the same in the States. Here they start extremely early. When they turn four, that's the year that they will start reception year, and then year one, year two and so on. When he started it felt for me that he's too young in his like, he's too immature to start it. It was, of course, here they have the school uniform. It's very rigid, even though it seems like very friendly and still nursery sort of environment, but it's still. You have rules already very early. So first year was fine, it was adjusting, as everyone else. But then when they started year one with more curriculum, it was fine. Okay, it didn't seem like he's into it. He was trying his best, but it didn't seem like he was into it. But what was upsetting there was the social element.
Speaker 1:
Okay, so how did that affect him?
Speaker 2:
So the first ever conversation that I had with a specialist told me that he has a social communication disorder. So until we actually realized that it was very hard for him to interact with other kids, he couldn't understand their facial expressions first of all. He couldn't understand their intentions, and he has a strong sense of justice. So if someone does something that in his opinion, in his perspective perception, it's not okay, it would be horrendous, it will be a war. It's like declaration on war.
Speaker 1:
Yeah, I've heard of situations like that before.
Speaker 2:
So, unfortunately, socially he had a lot of issues to begin with and it escalated until, I think, year two.
Speaker 1:
So did school get any better form over a period of time?
Speaker 2:
So he was three years in school and it was extremely stressful for him A lot of anxiety, a lot of problems, and only in year three that's when we had the diagnosis for autism then he started to receive some support and one-to-one. And bear in mind, it was COVID time, so when he went back to school, but when he wasn't at school at all, he was flourishing, but I didn't do any homework with him at home. Then when he came back to school at the beginning of returning from COVID, it was small schools, so only kids with special needs would return to school and that's when it went well for him. He received support and it was smaller class and now he's receiving just like more assistance.
Speaker 1:
But so did that help him.
Speaker 2:
He became better socially, so he's more interacting with others and he has dyslexia as well, so it's like a mess there with writing and reading, but at least he's progressing and at least he feels that he's progressing and that's the best thing there.
Speaker 1:
Yeah, yes, that's for sure. That is the best thing. So how is his interaction skills now? Have they gotten better?
Speaker 2:
He will interact with adults. He will be very happy to tell you science facts and dinosaurs facts, and it's like a radio station it starts and never ends. But with kids he wouldn't happily go and interact with other kids, so he will prefer the home environment rather than to go, let's say, camps or, you know, like when they have school camps or summer camps. There's not a chance for him to go there.
Speaker 1:
Okay, so you mentioned he likes it at home. What is his dynamic now with his sister? How does that all fall together?
Speaker 2:
So he's quite so. He's high functioning. He's not. He doesn't have any special behavior towards outside that can identify him as different, unless you're interacting with him, and then you can see a little bit difference there. He's very stubborn and he's in his own world, which is interesting to see because he has for him. Everything is black and white, everything is deterministic, everything is. It's hard for him to be agile to, you know, to accommodate someone else's needs, and she's, on the other hand, very empathetic. So what I help them with is to, first of all, have healthy boundaries and, second of all, to communicate to each other what they need. And even if it's through me, it's okay.
Speaker 2:
When you see them together outside, they will walk hand in hand. They he might put a hand on her, they will look like married couples, they will have conversations, they will talk with each other. It's beautiful. At home they will might have these you know clashes every now and then, but they, they. They grow up with a lot of values in place. And that's the difference, I think, because there's no such thing as discipline in my home. It's not discipline. I'm not disciplining them. I'm showing them by role modeling with myself how to become good people, you know, so that they can contribute to society with their strengths, and obviously we all have our own strengths. So that's what I show them, hopefully, and I can see in their interaction that there is something beautiful there in that connection, in that interaction as well.
Speaker 1:
I think that's just great and it seems to be really working well for you. So how does the mom fit into this? How do you interact with them?
Speaker 2:
When my kids were born. I have some tools that now I'm been using more and more, but I had a way to see what kind of a mom they required for me to be in order for them to feel safe, loved, seen, heard and that they will be able to cooperate with me. And that was before they could even talk. You know, especially my son when he had a delay in his speech. There is something amazing with that connection between us because as an empath, I feel him, but I also have the tools to know what he needs from me, no matter what happens. Yeah, like he goes to his tantrums and obviously there is frustration, like every child will have. But the way I approach each one of them is completely different, because I know that my son will need from me the feeling of home. He will need from me structure. He will need from me step-by-step plan, which is also very masculine so it's you know he's a boy but also very special needs-wise. But also what I saw that that's what he will require from me.
Speaker 1:
Sure, and that sounds like a truly great plan.
Speaker 2:
I'm very free spirit. So for me, he brought me into structure. Okay that I needed to become a person who has structure. And my daughter, on the other hand, she just wants me to be part of her team. She is a team player. She needs me to be a friend of hers and to feel that she's belonged to me in a way that we work together. So while we have the same activity to do for my son, I will just say to him, I will state to him what happens next and what is expected from him, and with my daughter, I will maybe use words like could you help me, please do whatever? Or it will be nice if we can do something together before we go out. So I'm speaking to them almost in different languages, even if it's on the same topic. You see what I mean.
Speaker 1:
Yes, and I really think that's just a great way to handle it. So how old is your son now?
Speaker 2:
My son is 10.
Speaker 1:
And your daughter. I think she's younger. Is that correct?
Speaker 2:
Yes, she's six.
Speaker 1:
Some autistic people are known to be very literal. Does that apply to your son as well?
Speaker 2:
Yes, definitely, but it's funny. I did try to explain to him like if we are next to other people and he has something to say about them, that's absolutely fine, but if he can just use his softer voice because it can be sometimes so embarrassing. But, yes, definitely the lateral aspect there is there.
Speaker 1:
Yeah, it's always good to be out front and honest, but sometimes you just have to learn to be just a little bit diplomatic and that kind of helps things out a little bit.
Speaker 2:
Definitely, and I have to say that I encourage my daughter to say more of her truth as well.
Speaker 2:
So I'm encouraging her to just speak up her mind, not to be scared to say what she thinks in a way that doesn't hurt anyone else, but just to have her own boundaries towards things, which I think is really important when it comes to safety In terms of, literally, body. Everyone in the family we have older people that want to come and hug or want to come and kiss, and my son will say no because you stink or no, because of whatever. My daughter will just say no Now, in the past, in the past she would shut up, she wouldn't say anything. So I taught her that it's okay to say no and I'm there with her when she says no. And then one of the family members asked her why not? And I said and I said because she said no, like you don't need to explain yourself, you don't need to excuse yourself. If you say no, it's no. So it's again, it's a way to say the truth, because her truth is that she doesn't want to receive anything. Thank you very much.
Speaker 1:
So you mentioned family. Do you have family where you're living now?
Speaker 2:
Yeah, so no family in London. I have a cousin that I see every once in a while. Our friends become family and I travel back. Like to visit my family there at least once a year.
Speaker 1:
Yeah, that's great, that's important, but, as you said, friends become family and they're very important too. So, now that you've seen what your son's developing into and how he's acting and reacting to things, what do you see for his future? Where do you think he'll be five years from now? 10 years from now? What do you see or hope to see him doing?
Speaker 2:
So he wants to have a private island.
Speaker 1:
Okay.
Speaker 2:
He wants to invent that island, that island. He wants to work with scientists to bring back dinosaurs and he thought, if we can extract DNA cells from their bones that we already have, maybe we can produce some kind of tissue and then bring back dinosaurs. So that's kind of things that he's thinking about and he has an amazing brain for planning. So he plans, like the machines, or he plans the layout of the island or whatever. I said to him whatever you do and he wants, like he has a lot of interests in geology and science I said to him whatever you do, you don't have to do everything by yourself. Make sure you have a big business or a big firm that hires the best people to work with you.
Speaker 2:
So I'm trying my best to help him see past his obstacles. He doesn't see them as obstacles yet, but in order to be scientists at this stage of life, we need to go to university, we need to have good records of math and all of these things, and who knows what will be with him? Hopefully, everything will be fine. So I'm encouraging him to be entrepreneur. I'm encouraging him to be with that mindset of growth that you don't need to do everything on your own. You can have the best team to work with you. We'll see. We'll see how it goes.
Speaker 1:
So we know he likes geography dinosaurs. What does downtime look like, when he's not thinking about anything, doing anything in particular, just chilling? What's he doing?
Speaker 2:
His chilling time will be mostly YouTube, learning A lot of learning. He likes learning a lot. He just learned a lot about the world too. I don't know why. I think they talked to them about that in school, so he will do TV time. He would love to build stuff, build from magnets, but things that not require a lot of how do you say it? He doesn't like. He won't draw something, cut it and glue it together. That's too much for his patients level. He doesn't have any patients there. But something with magnets, for instance, or Lego, he will build it. He will go and build it and create something magnificent there.
Speaker 1:
Design or not, the builder that? Yes, exactly Exactly that I get that there's a lot of people out there that are great designers and can put great things on paper, but when it comes to building it, they don't want any part of that.
Speaker 2:
Yeah, well, I can understand him. I come from interior design, so I was like, yeah, I'll do the plan, I'll do the concept and the ideas and then the builder will do the builds. Yeah, that's his downtime. He loves very much to take showers, funny enough Okay. Which I'm happy with that, especially when he will start puberty and teenager year.
Speaker 1:
Yeah.
Speaker 2:
So it just calms him down. He really finds it. He will stay sometimes like maybe 40 minutes and just like enjoy the water and it's quiet time for him to do so.
Speaker 1:
That's great. Now you mentioned anxiety. It calms him down. Does he have meltdowns like others have, or how is his demeanor that way?
Speaker 2:
Yeah, he used to have a lot. He used to have quite severe ones and a lot. Even at the age of six he would say to me I don't want to live.
Speaker 1:
Well, unfortunately that's not uncommon in the autistic community. Three out of four diagnosed are boys, and that one girl usually is the one that has some issues because they're trying to mask it, because they want to fit in, and it can show up in their teenage years, although I have heard some boys and men that have the same issues. So it's something to be very aware of.
Speaker 2:
Women has a better emotional intelligence in terms of just speak about emotions and speak about feelings, so that's on its own. Sometimes the ability of a girl to express herself is bigger, is better, than a boy with autism both of them with autism.
Speaker 1:
Yeah, the reason why females tend to mask it more is socially. They want to fit in, so they mask it, try and blend in, fit in with their friends. The only issue is, if they don't fit in perfectly, they start getting bullied. They're going through their hormonal changes. That's when it can all lead to a greater phase of depression and then we really have to watch it because it can lead to other serious issues.
Speaker 2:
Do you think they know that they have autism to mask, or do you think they just feel that something is wrong or different with them?
Speaker 1:
From the people that I've spoken with. They don't know, they aren't aware of the word autism, so they just know something's not right. They know they don't feel right, they don't fit in properly. They don't exactly know what's causing it. I've spoken with three or four different people, one in particular, that did not find out that she was autistic until she was in her 40s. So basically she said she lost four decades of her life and didn't start actually having a life until she hit 50. She said that 50s were just a whirlwind and she has exploded with life from that. So everyone's different, everyone handles it different, but it's very prevalent now for females to get diagnosed later in life. Well, hopefully, now that he's older, he's grown out of those thoughts and things have smoothed out for you.
Speaker 2:
It was quite scary.
Speaker 1:
Yeah.
Speaker 2:
But some of the things that we did. First of all, the assistant in school created a massive improvement because having someone there that helps him to regulate his emotions, at least once in one hour to go and just to jump or to run or to follow like a maze with his finger or something like that, that's already created big improvement for him. I do with him at home tapping so EFT, you know, like when you tap on meridian points and release feelings. So we have a lot of conversations. We call them private times or it will say to me I have a private conversation to have with you, so we will go. We will find a quiet place just me and him, and he will share with me what he feels or his thoughts, and I will usually just validate his feelings. Good, I won't try to solve anything for him. I will just say to him yeah, that sounds very scary, or, yes, it can be very fearful, or it can be very funny, or whatever it is. I'm there just to acknowledge that whatever he feels is fine to feel it.
Speaker 1:
That's right and that's great that you have that kind of communication. A lot of people would love to have that.
Speaker 2:
Definitely. Yes, yes, it's developed. It's developed, but I think it came from when he was very, very young, before he was able to communicate. And, again, I knew what he needs from me as his mom. So I've tried my best to accommodate that and, yeah, I think I'm blessed.
Speaker 1:
I think so too. So how would you like to close this out and give advice to anybody that might be listening, that's starting out and learning about autism for their children?
Speaker 2:
I think I accept things as they are. It's the biggest thing that you can do for yourself, because I think when we try to resist something or when we try to deny something, that's when we encounter pain. At the beginning of discovering this challenge, I felt a lot of guilt. I felt maybe I did something wrong. I thought up until now I think I know where it comes from his autism, but maybe I'm wrong there. But I took it on myself as if I did something wrong or I should have realized that sooner, and so on. And I think it's only when I've accepted OK, this is where we are now.
Speaker 2:
There's no point of looking backwards with regrets. Just focus here and now and see what is the current dynamic and if I want to have a different one, how I can create that one with love and respect and happiness and joy and laughter, then go for that one. I think the biggest achievement was to just accept that this is my son and I don't know anything else other than that and he's the most amazing person that I met. My daughter is the next next to him and I'm raising good, good people. That's it. So for me, it's just accepting them for who they are, accepting the situation for what it is and also reach out for help and support, because we don't need to go through anything on our own. Really, there are so many courses I took, as well courses and parents groups and whatever there is available there out there to, first of all, not feel alone and, second, just to have more tools in your toolkit to deal with everything.
Speaker 1:
Yeah, yeah, that's good. I'm glad you brought that up, because this is one of the few interviews that I haven't brought it up. And you brought it up was the fact that when you started wondering was it your fault, because I've asked several women, did you go through that? Because most of them do they go through this? What did I do? I had one that just was on just this last Wednesday. I asked her that question. She's got two autistic children and she said the first one she went through that for a while, but then she put that aside and started moving forward to making the best life she could for her. And then when she became pregnant with her second one, she did everything by the book. If anything was well, this could lead to this or lead to this, she wouldn't do it and she did everything by the book. And her son that was born within 15 months. She knew the markers and she knew the right way that he was autistic as well. So that was a pretty good statement there.
Speaker 2:
Yes, yes, I think most moms have, like when the kids are born, it's like we're receiving a bag of guilt and we're just carrying it around us constantly, like whether we fed them properly, whether we managed to put them to sleep properly, changed their naffes properly or get them dressed properly, or we shouldn't have said that thing, or maybe we shouldn't have let them do that thing, and it's full of guilt. Full of guilt and when you just allow yourself to be the best parent that you can be and just to have like the best communicator we said that earlier, tony in our conversation it's all about communication, and the communication is not just with other people always.
Speaker 2:
It's sometimes with ourselves and just to say you know what You're doing the best you can and if you need to deal with something, you will find the best solution that you can and just like to have this breath to take for a second and then move on, keep on going.
Speaker 1:
Absolutely Well. I have to say this has been a great conversation and I've enjoyed it tremendously, so I want to thank you again for coming on my show.
Speaker 2:
Yeah, thank you so much, Tony. I really appreciate it. Enjoy your weekend.
Speaker 1:
Thanks, and you too Thanks for taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you. If you know anyone that would like to tell us their story, send them to TonyMantorcom Contact Then they can give us their information so one day they may be a guest on our show. One more thing we ask tell everyone everywhere about why not me, the world, the conversations we're having and the inspiration our guests give to everyone everywhere that you are not alone in this world.