The Life That’s Chosen Me - From Russia With Love

Making personal sacrifices for your partner's career is one thing, creating a home in several countries while at the same time caring for a severely disabled child is another. We caught up with Rachelle Rosolofo-Czerwinski to talk about her new memoir, The Life That's Chosen Me - From Russia With Love.

 

TRANSCRIPT

 

The Life That’s Chosen Me – From Russia With Love

 

00:07

It's time again for DDA's Encouraging Abilities podcast. I am your host, DDA Communications Manager, Evan Kelly. Joining me today is Rochelle Rosa I'm hoping I'm saying that correctly. You do. That's a difficult one. Now Rochelle has an amazing story to tell, which she has brought to life in a new memoir called The Life That's Chosen Me From Russia With Love. It is available on Amazon and it's a very well written and fairly quick read if you're interested in picking it up.

 

00:37

travel writing, part diving into the culture and language of other countries, part learning to do that with a family of four where one child has a severe developmental disabilities. Rochelle was born in Madagascar, raised in France, and then married a German Canadian who worked high up with the United Nations, and it's a job that took her husband, Chris, to East and West Africa, Italy, China, Egypt, and then over to Russia.

 

01:02

To me it sounds like an amazing life, but of course there are hardships and difficulties along the way because it's not just about traveling freely, it's uprooting, it's making big changes, it's moving for a partner's profession, it's creating homes, even learning new languages, all with a child who needs extra care. Rochelle and her family, which includes her two sons Mike and Nicholas, now reside in Vancouver and we're of course happy to have them back here. So thank you for joining me today, Rochelle. Thank you, Ivan, for having me.

 

01:31

Now, it's clear you've led a very interesting life. Before we talk about disabilities, not everyone can do what you did. That's getting up and moving for a spouse whose job has changed, especially with an entire family. How difficult was that for you? To tell the truth, at the beginning, it was not. I just took it in stride, you know, and here I am, a new bride, and my job was to follow my husband.

 

01:58

I just thought when I came from Madagascar that we would settle in Canada. So little did I know that six months after settling down in Vancouver, my husband announced that we go into Africa. And from there, you know, after Africa it was Italy, and as you mentioned, then after Italy it was China, and then Egypt, and finally Russia. And I think in Russia I started feeling a little tired.

 

02:26

Globetrotting, I guess, as it were. Yeah. That must have been, like I said, it's not just traveling freely without kids when you're young or something like that. It's literally recreating home wherever you are. I mean, is that a difficult thing for you to do, or do you just take that on as a challenge?

 

02:47

I took that on as a challenge, but as time went by, it became more and more difficult. Like you're losing your friends and you have to look for new schools and create new homes. And of course, you know, with a child with special needs, and our son Nicholas had severe, significant special needs, it became harder to find therapies for him.

 

03:11

physiotherapies and speech therapies and this and that. So it's difficult enough if you stay in the same city like Vancouver, but imagine if you have to move country and not just country, but continent because actually change continent each time. Yeah. Well, exactly. And obviously there's some cultural things we can dive into as well, but you also mentioned that you've learned multiple languages. How many languages can you speak now? More or less fluently, five I think. French is really my first language.

 

03:40

I came to Vancouver, but because we did everything in English, I kind of picked English. I did learn English in school. And you may still hear a little French accent here and there. Oh, of course. No, more than a little. More than a little? Okay. And that's been like 20 years in Vancouver now. But you also, can you speak Chinese?

 

04:09

I did study Chinese for a semester in post-secondary and that was one of the most impossible things I've ever taken on. So I doff my hat to you to be able to do that. And did you learn a bunch of Russian then as well? I learned Russian during our two years in Russia. Russia was not as easy for me. I think if you read the book, I mentioned that.

 

04:37

I have more difficulty when it is a different alphabet as well. When it is a Roman alphabet, French and English share the same alphabet. Most European languages like German, like Italian, which I speak too. French. We share the same ABC. Yes, the romantic languages, right? Right. But when it came to Russian, they used the Cyrillic alphabet.

 

05:01

When it comes to Chinese, they use those hieroglyphs, those pictograms, and so then it becomes more difficult. So in those countries, I learned more to talk and to understand. I didn't put too much energy in learning to read and write because I knew it would take me years, and yeah, so yeah. So was it a bit of a relief to get back to Canada? Absolutely. And when did you come back to Canada? What year was that?

 

05:29

So I arrived in Canada from Madagascar in 1984 to get married and we started our Nomadic life soon after that and we came then back for good to Canada in 2005 now is your husband still working in Russia or is he for here for good now to be in Canada He's back in Canada for good. Yeah. Oh, that's good. And is he still working with the United Nations here? Or is it something different he's doing? Well, he does some consultation work. So

 

05:58

at least we'll be based in Canada, which is providing more stability for the family. But then he did some consultation work in Africa, in Asia, and yeah. Now, tell me about your sons. Michael, he's your typically developed son. He must be, I'm guessing, pushing 30 now? You're guessing right, he's 36. And Nicolas.

 

06:23

our young adult, but still a big baby in many ways. And Nicolas is now 35. Oh, so they're, yeah. So what is, you talk about in your book about Mike, trying to adapt in a variety of different schools in different countries, which must have been a challenge for him at the same time. I was thinking, when I was reading this book, how he probably looks back on that with a certain fondness and he's got this incredible life story behind him now. So what is he doing with himself now?

 

06:50

So now he works in, he used to run his own company. And then when COVID hit, you know, that kind of took a dive like many small companies. And now he's working with a concrete making company in Coquitlam. Nice. Yeah. Nice. And so how's Nicolas doing? And Nicolas is well settled in his own life. He doesn't live with us anymore. It does, it cannot live alone.

 

07:18

because of his special needs, but he shares a house with another person with disabilities and with a team of support workers. So very, very much like what DDA does for our clients, but like you mentioned, you're working with Spectrum organization. And how is, does he like living on, I guess I should say, how long has he been living on his own? And so I think he started living on his own in 2009.

 

07:46

That was a big transition for me because as I said he's still like a big baby and of course for a mother to let go of a baby no matter his size or his weight or whatever, he's still a baby. And so that was that big transition for me to let him go, yeah. And does he enjoy being apart from you? Is he enjoying his independence? Yeah, he has a fairly structured life. He goes swimming on Wednesday, Science World on Thursday, music on Tuesday.

 

08:16

a library on other days. I think he's going to outlive all of us. Well, that's good. I mean, it sounds like he's really enjoying his life. Let's go way back though. Like when you first knew that Nicholas was gonna have problems, how did you feel about that? And how did you deal with that? So I remember that clearly, that was in Africa. We were in this small African country that's called Djibouti. And...

 

08:44

And Djibouti is one of the hottest countries in the world. It's like 45 degrees Celsius at night. So during the day it's even more. And so the habit of people there is to have a nap. Otherwise you cannot survive. Nobody works between 12. It's the siesta, I guess. La siesta, exactly. Everybody's away and have a nap.

 

09:09

between 12 and three, and most organizations would only open until one, and then everybody's off until the evening. And I remember clearly one time we were having a nap, and my husband got up and he told me Nicolas is doing some funny things. And, you know, I was a new mom, Nicolas was two months old, maybe three, I said, oh, you know, he's just a baby. And my husband said, I think he's doing really some strange things. And so finally I got up.

 

09:38

And yeah, and they had no experience at all about seizures, but he was having seizures, yeah. So that was quite a shock, yeah. And that sort of, and then at that point you knew like, okay, there's some developmental things going on here. Exactly, so luckily, my husband had more experience in seizures than me because he had volunteered with L'Arche, which is a big organization, and they are everywhere in the world.

 

10:06

and he had done a gap year after UBC in France. And so he had been exposed to people with disabilities and he told me we need to take him right away to the doctor and I'm like, oh my God, are you sure? And so yeah, wait. And then after that, it went really fast. Three days later, we were on the plane to Paris to a pediatric hospital.

 

10:33

stayed there for three weeks and for me it was the worst time of my life having to come to terms with the diagnostic that you will be very impacted and the doctors in France said you know we don't know how it will develop but we just know it's going to be.

 

10:51

long, you know, life lasting and stuff. So the big question that I think is interesting about, you know, your book is what is it like moving from country to country that is a child that has more needs than a typically developed child? It's very challenging. As I said, we need to find therapies and that was my job. My husband's job was, you know, he was moving into a new office, getting to know his new team and

 

11:20

And for me, my job was to find a home and hire people and find help and find schools. And at the beginning, as I said, I kind of just, okay, that's my job. But as you get older and you move from country to country and this is your fifth country, and Nicolas was getting older, and I really kind of missed some stability in his care, in his life, instead of uprooting.

 

11:50

everybody every three to four years, yeah. Now, like what I kind of want to touch on is because my executive director Alana Hendren has actually written a book about her experiences traveling the world and seeing how people and how organizations come together to help people with developmental disabilities. It's not published yet but she's working on it. So like when you go to someplace like Djibouti and you have a child that has developmental disabilities, how do you feel like you're treated?

 

12:19

What's inclusion like in Djibouti? Yeah, so that's a very good question because every country was different. I wrote a book about Russia because Russia was kind of the worst country and it was good that in a way it was the last country after Russia I was done, like I wanted to go back to Canada. Djibouti was our first country with Nicholas and Nicholas was a baby. And so, you know, as baby.

 

12:47

you don't really see much difference. He was very cute. He was healthy, apart from his disabilities. And so we were not treated any different. There was one time where I had to take him to a hospital in Paris. And the local daycare was very nice and decided to take Michael early. He was younger than what they would have taken.

 

13:15

But because of the situation, I was away with Nicolas for three weeks and my husband had to go to work. And so yeah, so people were nice and trying to help. And our neighbor was a physician. And so she said, don't worry, I'll keep an eye. You know, I'll bring soup to you, too crazy if you need. Or, you know, so the community kind of rallies around you, which was nice, yeah. So what was, and what about China? Like how old were you, was Nicolas, when you were living in China?

 

13:45

So China was 94 to 98, and Nicholas would have been 10. It would be six to 10. And in China, we had a wonderful household helper. Her name was Mrs. Goh, and I really saw her as Nicholas' second mother, because she was so nurturing towards him, and that was one of our best countries. So China was not.

 

14:14

very good for people with disabilities, people who look different. There were a lot of orphanages in China that had children that families could not keep. And many of those kids were kids with disabilities. And some were girls because in that time, there was a one child policy in China, so people could just have one child, and because of their culture, they'd rather have a son. Yeah.

 

14:43

Right, so it's kind of sad. Exactly. And so when they have daughters, then they knew they were not allowed a second child. So they would give the baby girl to orphanages in order to have a son or have a chance to have a son. So China was not the best country officially with our government policy. But you find everywhere good people. And Mrs. Guo, our nanny, was one of those people.

 

15:12

And do places like Djibouti and China, it's one thing to be able to hire support, which not everybody's going to have, of course. Yeah. But are there programs that you can enroll kids with disabilities into? Are those readily available or is that difficult to find or is it just not supported? They were very difficult to find. They were practically non-existent.

 

15:40

So when we were in Egypt, when Nicolas was young, he could still manage to go to regular schools with a helper, like an SEA, Special Education Assistant. So that's what we did for a while. But then as he grew taller and older, it was really hard to leave him in the preschool when everybody was two years old and he was six. And so that was kind of challenging. Yeah, I guess so.

 

16:06

So yeah, we had to be creative and in some countries I had to help create a school So that Nicolas could have a place to go during the day. Can you tell me a bit about that? About creating a school so like in Egypt for example, I was looking for a school. We were living in Cairo

 

16:26

And there was no school in the neighborhood, and so I talked to people, and one lady said, you know, I'm thinking of creating a school. And I said, please, please, would you, you know, I could help you, I could help you financially to get it started, or I could give you books and for Nicholas, or activities and stuff like that. So that woman, she had typical kids.

 

16:55

and then she had Nicolas as only one and only special needs child. So that was in Egypt. That was in Egypt. You must have felt a little bit like DDA back in the 60s when we created the first special needs school. I think so, yeah. You're a ground breaker in your own right. But again, you're right, I forgot to mention Egypt. How was the community rallying around you there? Did you feel supported? What's inclusion like in Egypt?

 

17:25

In Egypt, I was involved in creating the first directory for special needs to help families like mine who had to go from zero to find out where is the special needs school and what services do they deliver. And that's one thing I'm quite proud of.

 

17:53

So my name is on the first page of that book. It's quite a thick book. I did it together with an NGO. And so hopefully it's still around, and I think it is, and they probably keep updating it when new services come up. So it had the list of schools who were inclusive, who accepted people with special needs. And it was also a list of, say,

 

18:20

physiotherapist, speech therapist, and speech therapists who could also do it in French or in English, apart from Arabic. And so it was very good. So this is kind of a support manual that you helped put together? Yeah. And that was in Egypt? Yeah. Oh, fantastic. That sounds really good. By comparison, when you come back to a country like Canada...

 

18:45

How does that feel? What are the differences that you've noticed being back here? I felt so relieved. So for the first time in our life, we had stability in the care. And so for the first time, things were organized. Nicholas was enrolled in Eric Humber, which was near Oak Ridge, where we lived.

 

19:10

So we had the support of a social worker, a case manager, the school pediatric team, so there was physiotherapists, so that felt so different and so much better. What about the overall levels of acceptance in Canada? Like, I mean, having some support and some inclusion, but I sometimes wonder...

 

19:39

walking down the street in other countries, if people, you know, look at you weird or cross the streets or something like that, how does Canada feel against these other countries? Canada is one of the best. I remember in China, Mrs. Guo, my second, you know, the second mother of my kids, I remember one day she was taking Nicholas outside for work and she came back really fast and she was crying.

 

20:07

And so I asked her, what's wrong? What's the matter? And she said someone on the street had told her, why do you take care of someone like him? He's a waste. He's a waste of resources. And she was so shocked. And she came back right away, and she was in tears. And then you've got to know, of course, that China has 1 billion, 300 million people to feed.

 

20:36

And probably some of those people see people with disabilities as a waste of resources. And when the government is not encouraging the support for people with special needs, then of course that's how also the population see it. So it's very sad. Yeah, it's unfortunate. There's going to be those people, you know, that just don't support it and are, you know, it's...

 

21:03

It's weird, but so in spite of feeling really great and at home at ease and accepted here in Canada, what do you see that we can be doing differently or better? So Canada, as much as it's one of the best countries we've lived in and we still live here, and I'm so grateful to be here with the family after I've been lived in five and six different countries. But obviously nothing is perfect.

 

21:32

And I wish families would have more choices about options, just like everybody else, that they would have options where to live. And I'm talking about their children with special needs. Like sometimes due to funding constraints, they tell you, okay, we're going to find a home-share provider for your child, but that's going to be in Burnaby. And so if you live in Surrey or in Richmond,

 

22:01

of course naturally would like to try to be close and it's hard to have those choices. I also heard recently that the government funding to CLBC is going to be more challenging to get as they get more people every year transitioning from high school into young adulthood. And...

 

22:26

That saddens me because it's really hard on families when school is over and they have those six hours of school taken away and it's like, okay, what do we do now? And often it's nothing. The answer is there's nothing until you have funding put in place and you have the support in place and the care workers and it takes a while. When Nicolas graduated from high school, it was in 2008.

 

22:56

And I was one of those families. When high school was about to finish, I asked the principal, by the way, where does he go from here? What does he do from here? The principal said, I honestly have no idea. So that was quite disheartening. I actually was the first coordinator of a transition group.

 

23:24

called Vancouver Parents Transition Group, which is still going on now. And one of DDA staff, Terry Schenkel, was one of the strong, really one of the best advocates for families that he would, he helped me get Nicholas income assistance. He really went all the way, like, okay. So it was great to have.

 

23:52

Yeah, he was very good to be part of the DDA team. He's retired now. But often, I hear for families, that is sort of a difficult time. There is that transition period between high school, where you age out of childhood programs, but you're not ready for adult programs yet. And whereas DDA, we have lots of day programs and things that people take advantage of. And we've got a very robust art program with our instructor, Kim Almond. And they'd

 

24:20

produce some amazing, amazing stuff. So I'm not sure what Spectrum offers. I know he's in a group home with Spectrum, but do they have all the same sort of programs that DDA would offer? Nicolas, because of his disabilities, is kind of challenging for him to fit into a day program. Like he has to have his two hours nap after lunch. And so what he does is more like a home-based program. Like we customize his program for him. So.

 

24:50

As I mentioned earlier, he goes swimming once a week, and he goes to Science World once a week, and he goes to the library, and he has music, and so, and I think he has a good life, yeah. So he really likes a lot of structure? Yeah, I think he likes that. At the same time, as I mentioned in my book, sometimes I really wish he could have more fun. He's 35, and he's a guy, and then...

 

25:17

And sometimes, you know, his brother jokes with me, he said, mom, maybe you should take him to a pub and you guys have a beer or. Yeah, why not? Exactly, why not? So I'm like, okay. I can recommend some good ales, that's no problem there. Now, moving on to some of my other questions here, like I don't have the lived experience you have.

 

25:42

You talked in your book about a time when Nicholas fell in the bathroom and hurt his, hurt one of his teeth. Did he knock, actually knock the tooth out? Yeah, he did. Ouch, ouch. Oh yeah. And that was in Russia, was it? That was in Russia. And in spite of the fact that the caretaker was there and you talk about guilt having not been around yourself. I am a parent. I understand guilt if something happens to a child, not so much now they're, they're older and they can look after themselves. But

 

26:10

But is that guilt harder when your child has developmental disabilities and doesn't grasp certain situations? How do you deal with that feeling? Yeah, it's harder because of course they are more vulnerable. Nicolas doesn't speak, he's non-verbal. Like I said, he's really a two-year-old in many ways. And so obviously he wouldn't know whether a situation is dangerous and he wouldn't know how to call for help. And so in that situation, I believe...

 

26:39

It was with a babysitter who maybe, you know, I could have trained her longer. And so that's where some of my guilt is that I was too much of a hurry to go to a cocktail party or to a dinner party. And so I was, okay, so she had two sessions training, she should be good to go. And obviously that was not enough. So she left Nicolas standing in the bathroom.

 

27:08

Well, she went to get a diaper. And Nicolas doesn't have a good balance, but maybe she was not really aware of that at the time. Maybe I did not stress that. It's hard for me to remember. But what happened is that Nicolas was standing around in the bathroom on his own, and somehow must have lost his balance, fell, and knocked his tooth on the sink of that bathroom and lost one tooth, yeah.

 

27:38

and that must have been painful. Oh yeah, I've been there. It is painful. Now let's go, I wanted to touch base a little bit about Russia because you mentioned that that was sort of the worst country when it comes to inclusion. Even diversity, you talk about living in this area where they had these neo-Nazi rallies and stuff. That sounds scary to me. Like how did you cope in a country like that?

 

28:06

Yeah, it was scary at times. I felt vulnerable, I felt isolated. Because in Russia, when a child is born with visible disabilities, like Down syndrome or like any other encephalopathy, the government tells, encourages the family to give the child away, to give that baby up.

 

28:28

to the government. And then those babies are somewhere in the countryside in Russia. So you don't see many of them in the city. The two years I was there, I've never seen one. And I think that's one of the reasons when people saw me walking the street with Nicolas, they were all staring, really staring.

 

28:49

at you, like with those big eyes, and like, who is she? What is she doing here? And that was what I was telling myself too. What am I doing here? No, everyone is staring at me. So yeah, it was quite difficult. And then we went to this orientation meeting as a newcomer and this really nice Russian man is there and he says, okay, don't do this, don't do that. Don't bring presentiments to as a no-stay gift because that's what we use for funerals. So, you know, kind of the cultural things.

 

29:19

And then at one point he says, oh, and around the 20th of April, don't leave your place if you're a visible minority. And I know, so there were a few of us from Africa, from Asia, and we kind of looked at each other, and finally one brave one raised her hand and say, why is that? And the guy say, oh, it's because the 20th of April is Hitler's birthday. And if you kind of...

 

29:47

dark skinned or they look different, it's better, you stay home. And I'm like, what? I honestly, it was, I really felt like, oh my gosh, this country is not for me. I mean, it sounds completely backward to me. Yeah, absolutely. And so the Russian government really encourages it to give up kids and what? They just take them to these institutions out in the countryside? Yeah, yeah.

 

30:12

Any idea about the conditions of those institutions? I'm scared to even ask that question. Yeah, so when I looked into those institutions and you see babies in their cribs with no human contact at all because there's not enough staff or and so quite a few of them got adopted.

 

30:32

by Canadians or Americans. But I feel for the families who had to give up their babies because they were kind of really put under a lot of pressure. The doctor would come and talk to the mother and say, your baby is better. You forget about your baby.

 

30:52

That sounds, I mean, again, that's why DDA was created. You know, back in the 40s and 50s here, that's what doctors would tell parents, you know?

 

31:02

put them in a institution, forget they even existed. And now, 72 years later, we know that community living and inclusion works so much better. Early intervention works so much better. And we can bring these people into the community and they can have happy and joyful lives. Absolutely, yeah. So everything that you've been through, to me, sounds immensely challenging.

 

31:28

But even in the book you had ideas of adopting a third child. I guess that didn't pan out. But I kind of keep thinking, wow, you want to do even more? So instead you got a dog, a nice big dog named Shona. I guess I'm sure she's no longer with you anymore. But you're that kind of person. You just want to take on challenges, is that it? Well, you know, it's a good question, because when you have a child with special needs,

 

31:57

and you have another child who is typical. And I had always felt that I was raising two only children because they were so different. And so, and I felt sorry for Michael that he didn't really have the sibling he wanted because Nicholas was non-verbal, so they could not communicate. They could not really play much with each other. They did at the beginning when they were both very young, but as they both grew up, Michael.

 

32:26

soon enough realized that his brother was not a typical child. And so I felt the idea of the third child, I think, was more for Michael than for Nicholas. As you mentioned, I had enough to do with Nicholas, but I felt somehow I felt really sorry for Michael that he didn't have a sibling he could have had if I had a typical child. And that sort of leads me to another question. There's lots of studies that show...

 

32:56

siblings of people with developmental disabilities develop more empathy and compassion. Do you see that in Michael? Yes, I do. He has this elderly neighbor next to his flat and he's really helping her out. He asks her, do you need anything? Can I do shopping for you? So I see that in him and yeah, I'm happy to see that. That's good.

 

33:23

So at the end of all this, what made you decide to write a book, a little memoir on this? I felt that not many families decided to have the life we had, like moving from country to country, so let alone with a child with disabilities. And so at the end of our nomadic life in 2005, after I kind of helped to get Nicola's life settled.

 

33:51

I felt I really need to write a book about our life. There is a quote from Maya Angelou where she says, there's no greater agony than carrying a story inside you that is still waiting to be told. And I felt that way, like I need to tell those stories. And so what did you hope to achieve with this? Raising a greater awareness about people with disabilities and their families.

 

34:20

and if possible helping in a way in some way or another to improve the lives of those families and of those people with disabilities. You want to encourage people, families of any shape or size to travel around the world? I mean, COVID and technology means we can all work remotely in many ways. So would you encourage people to do that? No, not really. Just being honest, don't do it. Yeah, don't do it.

 

34:50

So actually, I was telling myself if someone were to tell me now, would you do that life again? I think I would shoot that person. To put it bluntly. To put it bluntly, I would look for a gun somewhere. Now one of my last questions I want to ask you is you said in the book that Nicholas is your biggest teacher. How so? Because in his own way, he taught me so many things. I had to learn on the job.

 

35:19

to be a mother of a special child. And I never had that experience before. I was never exposed to people with disabilities before Nicolas, so that was really for me a big thing. But I think we kind of grew up together. Nicolas needed care, provided care, and he made me understand vulnerability.

 

35:45

He made me understand resilience. So with him, I grew up to become resilient. I became resourceful. He made my life bigger. And for me to get to know other families was one of the best things for me because I didn't feel alone. And through Nicolas, I made some of my best friends for life and so I'm grateful.

 

36:15

That's really good. Anything else to add today? Well, I think I would really like, I still hear so many families living in really dire situations because they don't have enough funding for the kids. And I especially feel for aging parents. I am an aging parent. I turned 65 not long time ago.

 

36:42

And I still have things to do for Nicolas and with Nicolas, on stable housing and a circle of good friends around him that will keep an eye on him. So as you approach the end of your own, as you are facing your own mortality, to leave behind a child with severe disabilities, is weighing on your head, right? On your mind. It would be, absolutely, I think it would be. Yeah, so those are those.

 

37:12

those worries and I hope the government will make special provisions for aging parents like okay now that you've reached 70 you shouldn't worry anymore. We're going to take care of your child. And I know I eventually I need to go and CCLBC the funding agency to increase Nicolas funding because we are still taking care privately for some of his needs and just the idea of going to see them.

 

37:42

honestly makes me stressed, makes me feel stressed a little bit because they're going to say no, and then I'm like, no, I cannot take no for an answer, I need to insist again and because, you know, because I'm getting old and I don't want to worry about him while I get older. I don't want to worry about him when I'm 80. And that's the thing too. Like there are many families with, you know.

 

38:11

family members who have disabilities who are not well off and where do they get the money?

 

38:17

to help their children like Down Syndrome for example. You don't get a lot of funding for Down Syndrome. So, you know, there's people out there creating advocacy groups today that are, you know, screaming for funding whereas other, you know, disabilities do get funding. So, it's, we just got to keep pushing. We just got to keep knocking on those doors and making sure that voices are heard and money is there. So. Yeah, very true. So, as I said, Canada is.

 

38:45

one of the best countries. So we have in Canada, we have our DSP, which is for the long term saving. We have lots of school inclusion, we have inclusive education that is not available in many countries. So there are some good things, but at the same time, there are still some gaps to be filled. And what you said about families, I think here, like everywhere, families would really be the backbone for change.

 

39:14

We need to keep pushing, we need to keep talking to our MLA, to our MPs, to all levels of government that they need to do more and they need to do better. Yeah, absolutely. Well, I think that about covers it. You have been listening to DDA's Encouraging Abilities podcast. We cover many topics that affect the disability community, whether it's about inclusion, accessibility, and now traveling the world. You'll find it here. Our guest today has been Rachelle Roso

 

39:44

Chowinsky, I got it again. Thank you. Author of The Life That's Chosen Me from Russia with Love. It's her memoir about living in several different countries and moving around with her husband, Chris and her two sons, one of whom has severe developmental disabilities. It is available on Amazon if you wanna check it out. Rachelle, thank you for joining me today.

 

40:05

Thanks for listening, see you next time.