Toronto Mike'd: The Official Toronto Mike Podcast - Toronto Mike'd #41

Episode Date: June 5, 2013

A touching chat with the mother of a special needs child. There are challenges, frustrations and no limits as a couple quit their jobs, sell their house and move away from Ontario for the love of their daughter.

Welcome to the 41st episode of Toronto Mic'd, a weekly podcast about anything and everything, often with a distinctly Toronto flavor. I'm Mike from torontomic.com. Joining me is Juliana from dreamabiglife.wordpress.com. And hosting this audio file are the good people at Core Fusion. Welcome to the Toronto Mic Studios, Juliana. Hello. It's good to be here, Mike. So you made it all the way to the heart of Etobicoke.

First time, that's for sure. No way, is it? Seriously, except for going to the airport. Is that true? That is true. I've never had a guest who was making their first trip to Etobicoke. That's for sure. No way, is it? Seriously, except for going to the airport. Is that true? That is true. I've never had a guest who was making their first trip to Etobicoke. That's amazing.

So, you know, just behind you are the crack houses that our mayor would frequent. And then just down the street, the mayor actually lives. This is the heart of Fordville. Perfect. So let's tell the people how we know each other because it's it goes way back. But we worked together many moons ago in Thornhill. Correct. Did I get that right? Yes. At a software company. Right. And yeah, you used to be like the yoga person. Like so you would do, you would be like software lady by day and then you'd be like yoga instructor by night, if I remember. That is correct, yes. And I even did a little bit of lunchtime yoga for the folks at work.

And I remember trying it once and I wasn't flexible. Like I couldn't bend. I have no like uh flexibility like I can't touch my toes and things like that I know but but as yoga has evolved um it's not just for those that can touch their toes it's it's even more for those people who are not as flexible and rigid to explore those edges of so I gave up too early. I know you did. Because I switched to walking. I used to walk at lunch.

Like, I used to do 6K at lunch with Buddy. Because Buddy had, like, cholesterol issues, and then I'm like... And then Scott. Remember Scott? Yeah. So, and then we had a... You didn't play Frisbee, too, didn't you? Yeah, that's true.

So you came and went, I think, and then you came back. I can't remember anymore. But there was a Frisbee period, and then it changed to a walking period. So there you go. That's the history. So, I don't know, I left there in 07, so this is what, 2013. So in the last six years, we've probably only seen each other like once or twice maybe. Yeah, that's about right.

For like five minutes. So do I look the same? I look much right no you look younger time that's amazing i look younger but my hair is whiter yes that is true yeah you look younger as well oh you're too kind i have to say that if you said it i have to say it. No, you look younger. So I wanted to have you on the show and record this open conversation with you because quite literally, I am blown. Well, I'm not literally blown. I am figuratively blown away by your recent decision to essentially quit your job, sell your house, start anew in a new place. So I want to sort of walk through some of your story, start anew in a new place. So I want to sort of walk through some of your story, if I may. Absolutely.

So let me know when I go out of bounds, because I might go out of bounds. No, I'm looking forward to the open discussion, because there's some interesting components of it. I want to get your story down before you flee the province, and then I could never get you back to Etobicoke. So it's now or never. So this is the time for the Juliana chat. So tell me, please, if you would start with the birth of your first daughter, Riley. All right. So back in April of 2005, we were expecting a little baby and we wanted to be a surprise whether it be a little girl or a

little boy and she was born literally on her due date naturally no complications and right from birth Raleigh was a a challenging little baby and But that was, I thought that was part of parenthood or motherhood. Right. Like, I've been there. There's times where, yeah, it's very challenging. I remember Michelle wouldn't stop crying for the first few months, like colicky and all these kind of things you hear about. Absolutely.

So, yeah, she pretty much was good birth control in preventing another child, but we subsequently did have another one, a weak moment, I guess you can say. Whoa, we want details. I'm just kidding. So yeah, so Riley came into our lives and like any child that does, you have grand plans in terms of what you're going to maintain in your life. But she definitely, uh, proved that we couldn't lead a normal life, um,

in, in many ways. And in, in the beginning we didn't realize how much of a, uh, uh, how much that really meant or how, how that would really impact us.

Uh, so how much do you want me to go? Well, tell me, I want to hear like, okay, so you, you, I guess you start realizing there's, meant or how that would really impact us. So how much do you want me to go into? Well, tell me. I want to hear, like, okay, so you, I guess you start realizing there's challenges with Riley? Right. Right from birth, she wouldn't be placed down. You can tell that she had sensory issues, but the whole word of sensory issues was foreign to me at the time. She could not stand being in her car seat, being in

the car without constant crying. And of course, going to the doctor, they thought, oh, you're a first-time mom. This is somewhat normal. She's gaining weight. She looks fine otherwise. You're just being a little sensitive or overreactive. So that continued for most of her first year, but there was a gut sense emerging to say no, that there was something more to it. And it didn't become evident until you started to engage in more playdates at around the 10 month phase. And then there was a clear distinction, at least in my mind, that there was something wasn't right, but I never expected what ended up being the diagnosis to be at play at that time. Okay. So at this point, your doctor's telling you you're just overly sensitive to these things

because you're a new mom and your new moms are like that, of course. I remember like you have a newborn, you're worried about them sleeping alone in the crib because they're gonna have sids or something like there's all this parent you know paranoia etc so at some point i guess you watch riley with other kids and you realize something's different about riley like right um and even just to to give some perspective as a career-oriented woman i actually went back to work at six months in this contract position before I was due back at my original, the job that I left, because of how colicky and temperamental she was, she drove me to go back to work, which is somewhat embarrassing to say that you wanted to be away from your child. But I think it's relevant in the sense that it was such a crazy environment

that if I was the one that was the problem, then let me remove myself from the situation and see. So how did you get this diagnosis that you'll tell us about? Well, she wasn't diagnosed with Rett syndrome until she was three years of age. And prior to that, I'm the one that constantly went to the doctor with different possibilities. And they were very reluctant to diagnose her at an early age with anything. So initially, it was a general development delay, which they pretty much put that label on anyone

who's not meeting the milestones of walking, talking, etc. So it ended up being, we finally got referred to a geneticist. And I said, I only want her tested for one thing. And that was based on my research. They thought I was out to lunch. And they ended up only testing her for that. And I'm sure enough, that's what she had. Okay, so Rhett is spelled R-E-T-T.

Correct. Because I struggled with that. I had to Google that. Even doctors. and if sure enough that's what she had okay so ret is spelled r-e-t-t correct because i struggled with that i had to google that even doctors because i thought there should be an h in there maybe some doctors do put the h but it's named after a doctor with the last name ret so so tell us what is ret syndrome ah uh the best way to describe it, it's a severe neurological and developmental disorder that pretty much exclusively happens to girls because it's a genetic defect on the X chromosome. So for boys to have this defect, because boys only have one X chromosome, they'll often die in utero or just after birth. Now, there are some rare cases where boys have Rett syndrome,

but I think, don't hold me to this, but they have an XXY presentation. So I'm not a biologist, but that's my understanding. Well, I am a biologist and you are absolutely correct. All right. So it's predominantly in females because it's on the X chromosome. Right now there's over 150 mutations and 99% of the girls who, who have Rett syndrome, it's just a random mutation. So it could happen to anyone. It's, it's not genetic. It hasn't been passed down. So it's, it's equivalent almost to winning the lottery, but in a reverse way.

So do you ever like, uh, you know, you didn't look back and wonder if you did something wrong like some mothers do? Absolutely. So prior to the diagnosis, because she wasn't officially diagnosed until she was three. And meanwhile, I was just had my second child. They're two years apart. And I was a vegetarian during the first pregnancy. That's it. I was going to say clearly the lack of beef in your diet has caused Rett syndrome.

Yes, yes. Did you hear that from anyone, like family or friends or anybody who suggested that might be the reason? Not directly. You don't have to name names. Not directly. All right. But definitely, you start to think back and wonder. They passed you a hot dog and begged you to take a bite when you were pregnant with London?

No, but I actually changed my diet to include meat with London, my second child. But then we'll never know that that wasn't the reason. You blew it. Yeah, no, I blew it. So I did everything different. So this is just a random mutation. Random mutation. Okay.

different because... So this is just a random mutation? Random mutation. Okay. So just, so tell us like about the challenges with Riley who has been diagnosed with Rett syndrome and like the basically challenges in raising a daughter afflicted with Rett syndrome. Sure. And I'll just, I didn't fully explain. Oh no, finish with Rett syndrome. No, it's okay. So what typically happens is most girls actually aren't colicky when they're born, who end up having Rett syndrome. So usually they're perfectly fine, normal. If anything, they're very pleasant babies and infants. And from probably 10 to 16 months, they continue to develop normally, but then all of a sudden they go through this regression phase.

So, for example, Riley could turn books. She could never speak. It took her until she was two years old to walk with assistance initially. So she started to do normal things, be able to pick up a ball, everything you would kind of see other typical children doing. ball, everything you would kind of see other typical children doing. But then for Riley, pretty much after the 14, 15 month mark, you started to see this huge regression in fine motor skills. And there was still her gross motor skills were very impaired. So Rett syndrome is the best way to describe it. It's like having cerebral palsy, MS, epilepsy, and autism all wrapped up into one condition. So that kind of is a summary of Rett syndrome. But then to answer your most recent question of how that affects us or how Riley affects us on a day-to-day basis,

or whether this Rett syndrome affects Riley on a daily basis and thus us as a family. So Riley is eight years old right now, and she attends a regular public school, but she's in a special classroom. She's nonverbal, so she cannot speak. She has no fine motor skills, so she cannot point to indicate any communication so we we communicate with her by following her eyes reading her smiles her

laughter her screams her cries so just like there's 101 maybe different ways to describe snow. Well, with Riley, there's different cries to indicate what she may want. She no longer can walk independently. There's something unusual happening there. She does experience seizures. She needs to be fed, bathed, toileted, everything you would do for a six-month-old. So this must have been tough for mom and dad to... Yes, it's an ongoing journey with ups and downs. But we, for my husband and myself,

we're viewing this as, of course, when you're given a bad set of cards, so to speak, you make the best of it. Yeah, you play the cards you're dealt. Absolutely. It's a choice. So what is it like having, because London does not have Rett syndrome, so she's like a typical, I guess, a typical eight-year-old.

Six-year-old. Six-year-old. Six. Yes. Riley is eight. I should know that. That's all right. Okay.

So I guess it's when you're with your typical six-yearold, and then you're caring for your eight-year-old, Riley. Is there any anger? You're angry at the world or the universe. You must feel very helpless when Riley cannot verbalize what's bothering her or what she wants, and you're trying to decipher these sounds. I just can't imagine. I have a typical eight-year-old, and you're trying to decipher these sounds. I just can't imagine. I have a typical eight-year-old, and I cannot imagine what it's been like for you,

and I'm fascinated with how you've handled it because I follow your story on, I want to get the URL right for people listening, dreamabiglife.wordpress.com, and I'm like, I have to get Juliana on recorded and talk to her about this. To me, I think your story could help other parents raising children with unique challenges. I appreciate that. Uh, there's no question that there's challenges on a daily basis. You're constantly challenged to stay positive, to try to turn a bad situation into a positive and learn from it.

So there are times when Riley won't eat or she'll be irritable and you get frustrated because that's impacting what you're trying to accomplish in the day, whether it's with her or as a family or for yourself. And you've got to catch yourself because if London was expressing similar feelings but being able to articulate them we could probe further and ask and we'd be able to handle it a lot differently so we we try to cut Riley some slack but it is it is frustrating and and there's no question sometimes we get angry at um at the lack of social progress within our community, within the extended community, within the government. So that's where our biggest anger resides is the lack of social inclusion within the extended community as opposed to on a daily basis. So we're about halfway done here.

Do you think it's a good time to dive into this, I would call it this humongous life change that you're diving into right now? This is why the impetus for you coming in now is I know where you worked. I'm very good friends with the owner of this software company. And I worked there for, I think, I want to say like seven years in total or something, a great number like that for a young man like me. And I can say on this podcast that you resigned from your upper management position. Correct. Two months ago. Yes. Yeah. I've always, prior to having children, I made it clear to my husband that I wanted to be a working woman.

I wanted to do both, raise a family, although as challenging as that is with typical children. Then, of course, when Riley was diagnosed, that threw a curveball, but we were determined to be as normal as possible. Unfortunately, living in Ontario, it's very challenging to assume that goal. Most families that I know, the mom stays at home for a few different reasons. One, because of the lack of after-school programs or caregiving programs out there for children with complex disabilities. So, for example, with our situation, we tried the nanny route and it just didn't work for a few different reasons. It wasn't a great fit for our family, but also there were some other complications due to, even though Riley has all these complex needs, she's a very social,

happy girl for the most part. That's good. So looking into daycare programs, here's an example. We looked into local daycare programs, and because of Riley's complex needs, she needs one-on-one care. So there is special funding for that, but in York Region, there's a year waiting list based on the demand. But in order to apply for this funding, you need to be registered in a daycare and paying. But I can't work unless they accept her and have that one-on-one funding. So it's a chicken and the egg thing.

Right. So, and sure, private, we can look into private care, but home daycares wouldn't be able to meet Riley's needs and then care for three or four other kids. It wouldn't be a good business model. And we've tried even private in our house. When you're looking after a special needs child, it's $15 to $20 an hour, and we'd be willing to pay that, but we just can't find someone who's willing to do a short time period.

So there's a lot of challenges just with being able to keep a job. Right. And then you have this whole, in Ontario, there's a lot of funding options if you are below a certain salary. So it's almost like you're penalized to be in the middle class world. And it's almost kind of the working middle class poor syndrome. So if you're able to work under the table, you're able to get all of your equipment,

all of your medication paid for, and some extra services. But if you're above a threshold, which is not much, and you're actually contributing to society, you're penalized, and you don't get the same breaks. Whereas in Alberta, to my best understanding, they don't really divide it by income. If you've got special needs, you've got the same issues regardless of what income the family's bringing in. So you and your husband, I guess, had a big meeting of the brains and discussed this Alberta option. Right.

So you've already touched on one reason. So why, I guess, I'm trying to go in an order here. Okay, so you quit your job. I did. And that's because of the demands of trying to try to give Riley greater communication options, keep her mobility up because she's developing scoliosis. There's a lot of physical issues to try to maintain a schedule for her and the family, it was proving too difficult and too stressful for two career-oriented individuals in the family. Did your husband also quit his job?

In order to move to Calgary, he has given notice. And so we're technically going out to Calgary with no jobs. We're taking a big gamble. It's like rolling the dice. So essentially you both quit your jobs and sell your house. Correct. The house is sold. We have the house three-quarters packed up,

and we're moving out in July. So you took a solo trip to Calgary basically to buy a new home for the family. Correct. I follow this on your blog. See how much I know? Some people think we're crazy for a few different reasons. One, we looked at renting.

And in Calgary, to find a decent home, you're looking at $3,000 a month. And you're not getting a mansion for that. Plus, we will actually need to adapt the home to meet her needs. And you can't do that with a rental property. So we built equity into our home. We were very good fiscally because of the situation. So we felt that we can take this risk and buy a home in advance of having secured any jobs. And other than the fact you found Alberta will be better for you than Ontario, is there any other reason that you've been drawn to Calgary? Yeah.

Well, it's a beautiful place. We, despite the challenges in our family life, it's also created opportunities for us to prove that we can not view this simply as a negative, but also a positive. And we maintain quite an active life, cycling, running, and enjoying life. So Calgary offers great opportunities with the mountains and the active lifestyle the city promotes. But it also affords us an opportunity where both of us could potentially work again because of the less commute. And that's a huge factor in Toronto, having to commute an hour to an hour and a half. And that affects any family with normal children. But there's other reasons,

and there's a better schooling option for Riley. So you were born, were you from Kingston? No, Pembroke. Pembroke, Ontario. So at some point, did you move to Kingston or did I dream up this Kingston? No, my parents were not in the military, but we moved around. We went from Pembroke to Calgary for 10 years to the Kingston area. Oh, you've been in Calgary. When I was young, yes. See, all the pieces are fitting together now. You know, Walter told me that Walter's your uncle.

Second cousin. Second cousin. You know, I should have done Walter's your uncle. Second cousin. Second cousin. You know, I should have done my better research. I'm a terrible host. He told me that Pembroke is hockey town Canada. Is that true? That is true. Okay.

I just want to make sure I got that detail right. So, okay. So you've been lately, you've been for the last several years or longer, you've been in the GTA. Greater Toronto area. Yes. That's what GTA stands for? No, but north of it. I don't think our community... Where do you think GTA ends? I'm just curious. For example, if I...

Highway 7. So you're north of 7? Yes. Holy smokes, there's a north of 7. Have you ever been up there? I was at Canada's Wonderland. Oh, north of there. Wow. Hold on, so that's Maple. I'm going to just because... So there's something north of Maple? There is. Before Bradford? Yeah. So there's something between Brad that's Maple. I'm going to just... So there's something north of Maple? There is. Before Bradford?

Yeah. So there's something between Bradford and Maple. King. King City. Well, there's lots. No. No, no. I'm in Newmarket.

Newmarket. Okay. Yeah. Newmarket. Right. I've been to... Great. My grandmother was in the hospital there and I used to go up to Newmarket.

Okay. So you're in Newmarket. Yes. And now you're going go up to Newmarket. Okay, so you're in Newmarket. Yes. And now you're going to move to Calgary. Correct. And I understand you ran with the mayor of Calgary. Did I? No, I think you misread that.

No, wait, hold on. You were running in a race in Calgary, and the mayor was running with you. No, okay. He waved to you. Tell me. All right. I'm jealous of the Calgary mayor because our mayor, I used to run with our mayor in the Terry Fox run when our mayor was David Miller. And the current mayor never runs anywhere except away from reporters.

I'll stay away from that. No. So a week and a half ago, I was in Calgary to look for homes and it just happened to be their running race weekend. So as a runner, I said, well, what a perfect way to get acquainted with the city. So I signed up for the 10K race. And as I was in the starting corral, just looked over to my side and there was this well-dressed man. And of course I knew who the Calgary mayor was, but in a race, you're just not thinking about politics or those people of position. And I looked over and this man said hello.

Okay, he wasn't running. No, he wasn't running. He was challenged to run, but I think he's destined to go into Provincial Olympics after his term as Calgary Mayor. Oh, Provincial Politics, yeah. Correct. No, he sounds like a progressive, bright guy. I'm just a bit jealous.

So tell us what's next for your family. What's next for Riley and London and your husband as you move to Calgary? What's the next step? Good question. Lots of opportunities in my mind. For us, what we're going to do is in July, we're going to see Canada. We're going to camp across and not many people do that with a severely disabled child, but again we really don't know our limits. We challenge them and there's risk with challenging, that's for sure, because when they don't work out, you really

fall hard. But we're going to be traveling across Canada seeing all the different provincial parks. That's cool. I want to come. I like camping. Well, I've got a second tent. I've got three tents. If you need some extra stuff, let me know. I've got a bunch of camping stuff. So once we arrive, we'll have a month to get settled. And there's lots of things that I'm

going to have to do. I mean, again, a typical family doesn't have to do this in terms of getting all the paperwork and the typical move stuff from province to province. But there's more so when you're dealing with a special needs child. I've already got Riley's school sorted out. London school will be sorted out. And of course, they'll be going to separate schools. It's never easy. But then my husband will be looking for a job and he might already have like a job lined up before he goes, but that's definitely the biggest pursuit. And for the first year, I'll spend time making sure the girls and the family get settled. And I'll be looking whether it's for part-time work, contract work, something that won't be on the demanding career side.

You have to make choices in life. Again, everyone has different obstacles and challenges, and you can't always have everything at the same time. Unfortunately, I do subscribe to that. So it's baby steps in, in, uh, moving forward. So that, that's an amazing story. I think you have very big balls. I agree. I mean that in a positive way. You know what I agree because I, we often said to ourself, if our youngest daughter, who seems to be quite talented in sports, if someone tapped us on the shoulder and said, you know what, there's a great school out in Calgary for her, what parent wouldn't consider that?

And that's the same thing that's happening for us with Riley. There's an awesome system out there and schooling. So why wouldn't we do that for Riley if we would do that for London? why wouldn't we do that for Riley if we would do that for London? No, Riley's lucky to have such good advocates having her back. That's my two cents there. And you're going to keep updating dreamabiglife.wordpress.com. I am with all of our adventures and our mishaps, our learning lessons. It'll be a way for me to, I don't know, just, just connect with,

well, I dig it. Like I, I just find it, you write about things and it's like, you're very brave and open. And I, I dig that blog.

I, I have a subscribe to the feed and when you update, I get it in real time and I read it and it's always interesting. Thank you very much, Mike. But when you are ready to get like a real blog, like I'm envisioning like Calgaryjuliana.com, let me know.

I'll help you out because this whole word, dreamabiglife.wordpress.com is a mouthful. I would just like to go to calgaryjuliana.com. Fair enough. So let me know when you're ready to do that. All right. And thank you very much for coming in. So remind me, when do you leave for Calgary for good?

Like when's your final? Mid-July, July 14th. That's not very far. That's like a month away. Yes, lots to do, so don't remind me. Holy smokes. And if I could figure out my audio.

There you go, Mike. Good job. That brings us to the end of our show. You can follow me on Twitter at, Mike. Good job. That brings us to the end of our show. You can follow me on Twitter at TorontoMike. See you all next week.チャンネル登録よろしくお願いします