Transcribed by Kanako Suwa

[ Introduction music plays ]

Welcome to the SENIA Happy Hour with your host, Lori Boll. We know you’re busy so we bring you 1 hour of content in under thirty minutes, leaving you with time for a true happy hour. 

Lori: Hello everyone. At SENIA, we are all about amplifying voices of inclusion. And one of those voices are the voices of our parents. Today, I get to speak to a parent, her name is Kathi Silva, and Kathi and her husband joined the Foreign Service when their autistic twins, who are now 22, were two years old. They’ve lived in coordinated education and support services for their twins in the U .S., France, South Africa, Venezuela, Serbia, Uruguay, Uganda, and Switzerland, with each country providing a different perspective of how neurodiversity is perceived and handled. 

In 2019, Kathi produced and edited Extraordinary Experiences: Tales of Special Needs Abroad. It’s a book about living with special needs as expats as a way to share stories and help others prepare for adventures overseas. She has also written for the Foreign Service magazine to advocate for more support for families with special needs children. 

Now, Kathi and I today, we have a great conversation about her twins, how she found out they were autistic and just her different experiences in countries all over the world. My own son is 23 and it was really interesting hearing Kathi’s experiences as so many of them mirrored our own journey. So I’ll stop talking now and let’s just get right to it soon now on to the show Well, hello Kathi and welcome to the podcast. 

Kathi: Thanks for having me.

Lori: You bet. So you and your husband joined the Foreign Service when your autistic twins who are now 22 were just two years old. You’ve lived and coordinated education and support services for your twins in the US, France, South Africa, Venezuela, Serbia, Uruguay, Uganda and Switzerland. Wow so as a fellow mom of a son with autism, I know just how hard this must have been for you… But to start can you just tell us a little bit about your twins? 

Kathi: Sure. So my twins, they’re David and Carlo, and they are identical twins, and they have identical profiles, identical special interests, identical medical interests, because they do have some medical needs as well. They were preemies, so we’ve got some medical issues along with autism. They are, they’re wonderful souls, I have to say. They’re very curious. They love the outdoors and nature. There’s, you know, there’s, there’s this idea that autistic kids are really good on computers or on math, that is not my sons at all. They have no interest in computers and they actually have a math disability. So they find joy in being outdoors and I think one of the ways that they calm themselves is by movement. So they have learned to take up sports like skiing and skateboarding and jumping off high because they love roller coasters, anything that involves movement. So they’re very adventurous in that way. Yeah, what else? They both love music too. So they both have found hobbies. One plays guitar and the other plays piano and both of them are pretty much self -taught. 

Lori: Wow. 

Kathi: And yeah. 

Lori: Well, they do sound really cool and I hope to get to meet them someday. Yeah. That’s awesome. So how did you discover they were autistic? 

Kathi: Well, we, so they were born, like I said, very premature. And from the very beginning, they had to have OT and PT to learn how to swallow and to learn how to sit by themselves. And so somebody had always been keeping an eye on them. And when they were very young, one of our physical therapists noticed that they would like turn the toy cars upside down and spin the wheels. And they would say, um. don’t get nervous yet, but this might be a sign or something. So we had our eyes open to it. But then we had to go through a whole medical clearance process with the State Department before we could go overseas. And then we were clear to go overseas. They just said they had some delays, but they thought it was due to the prematurity. So when they were two, they just turned two, we were clear to go to Paris, which they thought had top notch medical facilities in Western Europe. It’s… certainly they could handle anything. And while we were in Paris, the twins actually started to regress quite a bit. Their behavior got more and more uncontrollable. Everyone says, oh, the terrible twos. So we kind of expected some bad behavior. But it wasn’t actually until my parents came to visit us and said, yeah, raising two -year -olds and raising twins is supposed to be hard, but not this hard, that we see something not right. You know, for us, we were first -time parents and we were kind of isolated, right? We’d just gone overseas to our first posting, so nobody, we didn’t know it, we didn’t have a community yet. 

And Paris is not a posting where you make a tight community very quickly. Most of the Western European countries aren’t. So I’m actually really grateful that my parents came out and said, something’s not right. Because I just thought it was, it was just parenting two -year -olds. So we had them tested, evaluated back in Washington, D .C., and that’s when they were diagnosed. 

Lori: Oh, wow. Yeah, and so it’s a very interesting you say that I’ve read several articles about grandparents being one of the first people to recognize that there are some delays or some challenges for Autistic children. 

Kathi: So Yeah, yeah. Well, definitely. Yeah, that was my case. 

Lori: Yeah Wow So you Obviously as we mentioned before I’ve moved to many many many countries and You’ve definitely had different differing experiences in all of them. Can you share how some of your experiences differed from? country to country continent to continent.

Kathi: Sure. Well, I mean, first of all, there’s a huge factor of age that comes into play as well because, you know, where you are at a certain age could be, you could have a very different experience depending on the age of the kids. So when our kids were, when our twins were very young, so Paris actually was, was not a good place to be at all. And I probably it’s not that great of a place to be at any age for kids with neurodiverse issues. But we, we spent like, what was it, first through third grade in South Africa. And that was an amazing experience. In our case, we had exceptional support services and exceptional school. It was English speaking. They were, the medicine was far enough advanced. but yet they were still curious. So they were still open -minded to trying all sorts of things. And I think the access to nature was wonderful for my twins and animals. You know, South Africa had a lot of parks where you could pet a baby lion or, you know, touch an elephant. And these kinds of experiences, I think, were really informative for my son. So that was beautiful. 

So Caracas, for example, was interesting. We got fairly good services. But I would say for Caracas and Uganda, which were our two most difficult postings, I didn’t quite take into account the effects of chaos that would have on the systems of my twins. And that’s, yeah, that was kind of an afterthought and of course, you know, that when you’ve got traffic everywhere and, you know, especially in Uganda, at this point, my twins were 17 and 18, they were in their last years of high school. So there was a lot going on in their heads and their hormones and everything. And that was probably a really bad move to put them in a place where there was just too much traffic and too much noise and too much pollution and smells. And so their sensory system just got overloaded. 

Lori: Yes, sensory overload. I hadn’t really, really taken into account. 

Kathi: Yeah, so I will say we did tons of research before we went anywhere and had to get all of our pre -approvals and made sure we had everything in place. My sons had always had an aid in the classroom, either a one -on -one aid or sometimes they would share one between the two of them. And so that was also different in each international school we were at. Some international schools supplied the aid to us and wanted to train them and have them under their own umbrella of their payment. Others said, we want nothing to do with it. You have to interview your own aid. You have to set up training somewhere in between. So it was every school we went to, we really didn’t know we were going to get. So we have experience drawing up contracts for aids and we have experience training aids. And we also have experience with us not being able to do anything and not being happy with an aid, but not really being able to do a whole lot about it. I will just throw in, our favorite school of all was the school that was least prepared for our twins in the sense that they had never, it was a very small school. They were not used to accepting kids with special needs. They were not used to being asked the question. And they were so, they were open -minded but also very cautious. So they were the school that communicated with me the most about, we really want your help, we really want your information about your kids and your feedback. And I found, and that was the best experience for my, for my sons, you know, we’ve been at some of the other schools where, you know, they said we got this, we got this, don’t worry about it. No way, go away, and yeah, not always, not always great results. So highlighting the importance of that communication between schools and families and recognizing that when you are working with a family of children with special needs, that they truly are the experts on their child. And as professionals, we need to listen. 

Lori: Yes. Absolutely. And learn. 

Kathi: Yep. Yes. Yep. But then again, you know, I do know that there still are parents, unfortunately, I think a lot of parents who don’t want to give information because they don’t want to preempt the school with this is, you know, these are my child’s issues. They want to see if maybe they’ll go away if they’re not, you know, in a new start in a new school. 

Lori: Yeah, yeah, we hear a lot of those stories as well. 

Kathi: And so I’m always straight. I’ve always been straight up front. If I don’t tell you something, ask me because I believe the more information I can give the school, the better they are to to help my sons. Yeah, exactly. I have that same mindset. And when anyone asks me if they think they should give the school the information, I say yes, say it. Because so many are worried that their kids won’t be accepted at the school and they may not be, but if they’re not accepted, there’s a reason they’re not accepted and you probably wouldn’t want your child to go there anyway. Yep, yeah, absolutely. So we can’t force it. 

Lori: Yeah. I’d like to. 

Kathi: Yeah, and you know, now that my sons are 22, a lot has changed since they started going to school. So who knows, maybe the experiences that I had in their elementary schools would be completely different for somebody going there now because I do think a lot has. change for the better, I believe, for the most part. 

Lori: For sure. For sure. And we see that through SENIA. More and more schools are opening up their minds, their hearts, and programs to support more and more students, so we’re getting there. Yeah. Well, in 2019, you produced and edited Extraordinary Experiences, Tales of Special Needs Abroad. It’s a book about living with special needs as expats. So what inspired you to write this book? And what did you learn writing it? 

Kathi: Well, what inspired me was actually this experience we had in the small school and So it was it was in Uruguay, which is a tiny country. It’s you know, three million people and nine million cows. So tiny tiny country they we they were at the it was a small American school and It was actually the The combination of of culture and how it plays into How people with special needs are supported because I realized that in Uruguay. The culture was just so warm and low stress and community oriented and I realized that’s actually the the best way to help my twins is to let them feel part of some, let them feel that they fit in somehow or that there’s a place for them in the community. Because most of the other places they’ve, they’ve, they’ve known they’ve been outsiders. 

But in Uruguay they felt, they didn’t feel like outsiders, nearly as much as anywhere else. And so I got really interested in the idea of, you know, what, who else is having these kind of experiences of, of being in cultures where they have a situation that’s, you know, it’s either a medical special need or psychological special need or, you know, learning disability. I was just curious about other people’s stories and I was looking for happy endings, to be honest, I was looking for, for good news because I was also… I felt that our experience taking our twins around the world was overall a very positive thing to do. I felt that it really helped to develop their adaptability and their ability to pivot and see all types of people in the world and maybe find their place in the world. And I wanted other people to not be afraid to be overseas and have these experiences. So yeah, I was basically looking for feel -good stories. But not all the stories in the book were perfectly happy endings, but they all show that we all grow as people when we’re overseas with special needs in some way. And most people found it to be a positive growth. 

Lori: Well, that’s great. And I have read through the book and it is, it is really good. I highly recommend it for all our educators out there, all the families. 

Kathi: Yeah, thank you. I am I, I loved, I loved compiling the essays but one of the things that I really enjoyed was diving into the cultural studies of how culture affects more than just how our kids are treated treated. It’s how we how we communicate with the doctors or how the doctors communicate with us or, you know, how somebody on the bus sitting sitting next to you is going to, are they going to help you when your child is having you know an allergy attack, or are they going to make things harder for you so I just thought that the cultural aspect was really interesting. Yeah, for sure. It’s something we don’t we don’t always think about when we’re looking at, where do we, you know, where do we go live. 

Lori: Yeah, yeah So true. 

Kathi: Yeah, I Do recommend families do so much research before they had overseas So many are surprised when they get to a country and the school won’t accept their child or they find out there’s no occupational therapists or speech pathologists in the area and so Researching that research in the culture around it all of that is it’s important Yeah, well I I had always done all my research on the therapists in the schools Mm -hmm, but not really so much about the culture per se. You know, we just have this assumption that westernized cultures are going to be more like us. And so the medical systems are going to be like ours or the, you know, the people’s attitudes are going to be more like ours, but it’s not always the case, you know, especially like you look at Paris is a really, a really tough place to be for somebody with special needs, because there’s no place for you if you don’t fit in the box in schools. You know, very much the education is very square. And if you’re if you’re around, there’s a place for you, you know, and that’s just their culture. 

Lori: Yeah, yeah, yeah. Now that your sons are adults and you know what you know about being an expat, what’s one thing you hope all teachers or school administrators could know about working with families of children with special needs? 

Kathi: Oh, that that’s a really tough question if you’re asking me to narrow it down to one thing or two or 10, but Okay, um Okay, I would say That if you want to do it right if you want to have true inclusion and Not just you know Bring bring kids in because it looks good for your school or because you have to because it’s not posed on you If it’s done, right and the the children really feel like they belong there It it has to be it has to be part of the school culture. And it has to be, it cannot be the principal that’s saying, this is what we’re gonna do because it’s good for the school. It cannot be just one or two teachers saying, I love working with special needs kids. Bring them on, bring them all to me. And yeah, and it has to also include the other students because if the teachers and staff are on board, but the students are bullying the kids behind their backs, that doesn’t work either. So it’s got to be a whole culture of the school. That would be my advice, I mean, yeah. 

Lori: I agree with you. I mean, that’s a great, great one. 

Kathi: I don’t think that’s yeah, it’s I haven’t come up with anything brand new that nobody’s ever thought of before, but I just that’s just so important because we’ve, we’ve had all of those experiences we’ve had schools where we had the most amazing learning support person who was our child, our twins But the other teachers weren’t on board and the learning support teacher actually resigned in protest because the school was not doing enough for our twins. And she knew that if they if the school just gave a little bit more than my twins would be would skyrocket. But so yeah, we’ve seen it all. Yeah, we’ve been we’ve been at schools where everyone’s great for the students were not in the students were bullying my sons behind everyone’s back. So 

Lori: Well, your sons are now 22 years old. What what’s what does life look like for them now? 

Kathi: yeah, so so they they just finished their second year of University and we chose, they chose to go to a university not in the United States. So my home country is the US, my husband’s home country is Ecuador. But the twins don’t really feel like either of those countries are home because they haven’t lived in either place for a long time And we don’t really have networks there anymore they chose to go to a university in the Netherlands because they… We did cultural research. We felt that the Dutch were very open -minded, very liberal. The level of English is extremely high, so we didn’t worry about their communication as much. And we found programs in the Netherlands that we hadn’t found anywhere in the States that are a combination of kind of your typical four -year university combined with like a trade school. So they have a lot of real -life work experiences. They don’t have to take tests. My sons did not like school because they didn’t understand why they had to learn something that was not at all useful for them in the real world, you know algebra or… You know biology if you know your your plants sell life. They’re like we don’t we’re never gonna use again and And test taking was is extremely difficult for my twins so we thought let’s put them in a in a in a program where they have to learn how to do projects with other people and Put together proposals and then actually do internships by the third year. They’re doing internships And and few and fewer and fewer courses and more and more work. 

So they’re there It’s been very challenging both for them and for me for them is challenging because… There are some people with, on the spectrum at this university, but not, it’s not a few, you know, it’s just because they have some technology programs and these are kids that are Asperger’s, as they would say with a quirky, you know, computer programming stuff. That being said, the school’s been amazing. They’ve done everything they can to support the twins. What’s been the hardest was the life skills, getting used to living with others in a dorm the first year. They, you know, having to cook their own food, buy their own groceries, do their own laundry, that kind of stuff. Combining that with academics was overwhelming. And I’ll say the one thing actually that was the, that is still the hardest are the social skills. Because I didn’t realize up until then, I was always kind of there to jump in when things started to get shaky. And it’s amazing how quickly things can spiral out of control, going from shaky to total meltdown and one of my sons getting thrown out of a place because he’s screaming and then him having a panic attack. So that’s hard for them. It’s also very hard for me because I’m not that close to them. I’m an hour and a half plane ride away. So I was getting a lot of phone calls, panic attacks and I don’t know what to do. or I’ve locked myself out of the apartment and banging their heads on the door, like really bad situation. That’s really difficult. 

And my sons, they wanted to be a part of everything. So they would do stupid things. Like they would go to bars and they would drink too much and then get everything stolen from them. And so all of these situations where these kinds of kids are super, super vulnerable, that’s what we’re dealing with now. And for me as a parent, it’s really, really hard to know when it’s a learning experience and when it’s… more than that. And that’s, it’s something that’s going to traumatize them forever. Oh, yeah. And we’re still walking that tightrope. So I actually spend half of my time here in Geneva with my husband and my other daughter and half of my time living in the Netherlands with the twins. So that I can make sure that if things get a little bit shaky, then I can fix it before it gets out of control. 

Lori: It’s hard. 

Kathi: It’s really hard, you know, and the whole stuff dealing with dating, dealing with their realization. They realized just in the past couple of years that. They’re very angry that the neuro -typical world does not accept them. They’ve been listening to a lot of autistic adults that are also very angry, and my sons are also feeling this frustration and need to change the world, and it’s not good. It’s not necessarily healthy, because now they’re like, why can’t they adapt to us? Why do we have to adapt to them? And unfortunately, the world is not going to change fast enough to adapt to them the way they want, so they do still need to learn how to adapt in the world. So it’s finding that little kids, little problems, big kids, big problems. 

Lori: Wow. Well, thank you for sharing all of that with… I think it’s so important for everyone to know that our kids they they don’t grow out of.. grow out of it and you know once they hit 18 and you know graduate high school, it’s it’s it’s still a struggle, it’s so many positives so many wonderful things, of course, but there are absolutely Yeah, I didn’t mean to end this on a on a negative note. 

Kathi: No, no, but I do I I do hope that Yeah, that I guess when when you are raising kids with special needs it is really good to think of the long -term picture and I don’t know just be prepared for for whatever, you know, because my sons want to be super independent and that’s really hard for me because that comes with a lot of, a lot more heartbreak on my side. You know, it would be a lot easier if they still wanted to live at home in a lot of ways. And I could be there to help them more and protect them more. But yeah, yeah. Well, you didn’t end it on a sad note. Don’t you worry. I mean, I, you know, I think, I think they will, I, yeah, I think that, that things will work out in the end, but it’s just, these are really hard years. They are really hard years. Well, I mean, even for our neurotypical children, college years, they come with so, that adulting piece, that life skills piece, doing the laundry, things like that, but it’s just amplified so much. for kiddos like your kids and hard. I could go on and on and tell you less. I really think you might wanna interview kids like my son to get their perspective on what schools can do better or what advice they would give to schools. Cause one of the beautiful things about them getting older is that they’re able to articulate a lot of things now that they couldn’t tell me when they were growing up. And so now I’m hearing stories about things that I never knew, the bullying I never knew about or this feeling of utter despair with the IB program and this complete entrapment that they had to get through it that was the only option at the international school. And it was just so wrong for them and they knew it. And there was, So, yeah, for sure. Yeah, it’s important to get all the voices, right? So, and just a plug for our conference coming up in November, we are talking about amplifying voices in special education and amplifying the inclusive voice. So those are voices of parents of individuals with disabilities of teams at schools, working with individuals, administrators. 

So, yeah, we’re really trying to get all voices included. I would encourage more more voices from from the students themselves. Yeah, for sure. If they’re if they’re we do have a we actually have a student student panel. 

Lori: Okay, that’s going to be there. So yeah, we hope many of you can join us there. So at that, I think we are out of time. So Kathi, I want to really thank you for taking the time today for sharing your story and for sharing your, you know, being vulnerable and sharing about your your twins. We really appreciate just your time and… So, thank you. 

Kathi: It’s been a pleasure. If anything I say is going to help someone else and make their path easier, then it’s absolutely worth it. 

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Thank you for joining us for today’s show. For more information, including how to subscribe and show notes, please head to our website. That’s SENIAinternational.org/podcasts. Until next time, cheers.