Welcome to episode #74 of the Mount Motherhood Podcast.
In today’s episode, we chat with Katie. Mother to three, Katie has led the charge in her province of Saskatchewan, Canada to connect families with children on the Autism Spectrum with resources and support. In this two-part series, Katie dives deep into her family's journey reflecting on the time her son Avery was diagnosed with "bad parenting" to today where her family navigates a new season of change for Avery and his severe non-verbal Autism diagnosis.
In this second part, Katie focuses on how Avery's younger siblings advocate and care for Avery and how going up in an inclusive household has naturally taught them to be kind and genuinely friendly to other children of all abilities. Katie also shares how taking care of yourself is important and the impact it has made on her life and marriage. Katie also opens up about the challenges that have come from opening their life up to others on social media and how she deals with negative opinions.
You can connect with Katie on Facebook where she shares Avery's journey, Autism specific news, research, and provincial support and events.
You can also follow Avery's journey on Instagram.
You can find a full transcript BELOW.
Host - Samantha [00:00] Welcome to the map motherhood podcast. We are on a mission to connect to support and empower mothers raising children with a medical diagnosis under host Samantha Alber. And I'll be bringing you inspiring stories and insights from industry professionals. I invite you to join our community on Instagram and Facebook to learn more about our movement. Be sure to leave us a review and share your new favorite podcast with your friends and family. Let's get to it.
Host - Samantha [00:38] Thanks so much for joining us again today, Katie, to dive right back into it, can you share how you navigated just kind of explaining Avery's diagnosis with his two younger siblings and kind of what that manifested into with their behavior and their, um, their bond with their older brother.
Guest - Katie [00:58] Ooo it's a tricky one. Um, you know, my daughter, she is very much a mother hen she loves both her brothers, but Avery, you know, she thinks that she's older. It's, it's a very confusing thing for her. Uh, she's younger than Avery, but you know, she can ride a bike. She can talk more than Avery. Like there was a point. Now we kind of have it figured out with her. But there definitely was a point with our daughter where she didn't understand. She was like, mum, why does Avery still wear Polex? Like mum, why can't Avery, you know, why can Avery eat, you know, whatever it was that we were having for supper and why does Avery, uh, have to take so many vitamins? Like she just, she didn't get it. She didn't understand. And, and that's something really hard to explain. Um, and then also like going from there and not even explaining it, just doing our day to day life and over time things have definitely got a lot easier.
Guest - Katie [02:06] And you know, she specifically, our daughter is such a helper. She just wants to help me. Avery doesn't really like it that much, but she really, she really is on him quite a bit. Like, you know, in the morning we may have to get ready for school now and they have to take their vitamins. Avery takes quite a bit more vitamins than she does. She'll count and I always have to remind her like she's not the parent. And she'll, of course, stand at the kitchen table, Avery one, Avery to two, Natalie you're not the parent. And you know, and he kind of gets mad at her. He doesn't like that. And, and, but, you know, she has grown up being, um, the only girl, a middle child and then being able to do everything, um, sooner. You know, that's how she sees it, that she can do all of these things and she can, you know, go outside in our backyard by herself and Avery can't, and she just doesn't really fully understand why.
Guest - Katie [03:14] And, you know, so when we go out in public, uh, that is to the fair, or we go for family walks or go to the mall or anything like that, you know, she, it's like her mother hadn't kicks in and she's like, Oh, Avery, wait from him, Nope, Nope. Put your shoes on. Like, she's right in there. And I always have to remind her she's not the parents, but she forgot this place quite often that she's not. And we just have this weird blend. Our family, like we just, we just work really well. You know, there's, there's days that we have drove to the city and we've had a whole bunch of stuff to do and Avery's having a really hard day. Our youngest, you know, is sick, um, has, you know, a cold, whatever it may be. And we've turned around, we've, we've went from our rural location and drove all the way to this city and it's been like an hour and a half drive to turn around and come home because no one's going to make it through.
Guest - Katie [04:19] Um stopping at the stores we need to, going to an appointment, like we've had to cancel before. Um, and that's a very big reality of, of our life. Um, pretty much the stars have to align to, like, we wait for the stars to align and then everything works out. But we're just kind of like any other family, you know, all of our kids have bad days, they all have good days. Um, you know, me and my husband, same way and he just, we kind of roll with the punches and you know, there's, there are some times that we have to do things separate. My husband has to take my daughter to something and I have to take the boys and go somewhere else. That happens been quite a bit. And I don't think people, you know, that don't have children, you know, with special needs or anything like that or a child on the spectrum.
Guest - Katie [05:15] Um, realize that, the bad happens quite a bit. And in our life, even though everybody else, it seems odd and strange and sometimes we can't, you know, go to family functions. Um, Avery's just having a really hard time and my husband has to go and take the other two children, um, or none of us go, you know, it, it happens a lot. And to us it very much has came second nature now, uh, at first when we started, you know, our journey with autism and I just had, um, had our daughter and there was just our family of four, you know, it was kind of new to us and I always remember feeling really upset. Like, we're missing, you know, we're missing this part of Christmas with this part of our family, or we're not going to so and so's birthday. Or, you know, there's been times where like even just me and my husband want to go do things without our children and it's really, really tough. It's, you know, finding, um, you know, a babysitter that is compatible with Avery and then find a babysitter that works with our other two. Um, it's tricky. It is tricky, tricky stuff and it, it, you know, as much as I want to say, it makes your family stronger. All the things that you go through, you definitely have to have tough skin and you have to make sure that you make time for yourself, um, make time for your husband, everything. Um, because it very much is like a balancing act for us anyways.
Host - Samantha [07:00] Absolutely. And I mean, talking about that, what are some ways that you have been able to, you know, make time for yourself to recharge and the same for your husband? Like what are some ways that he recharges and, um, what are some ways that you help the kids recharge and you know, maybe you know, from your daughter, you know, wanting to be mother hen. Sometimes she might need a little alone time too. Okay. What are, what are the ways that you've found,
Guest - Katie [07:23] You know, we, we do a lot of things. We make a point of every so often we'll take my daughter to something if it'd be a mum and me movie date. If we go to the mall and we go girl shopping, whatever it may be. Um, my daughter, I swear, has her black belt in shopping. Um, she looks for all the sale tags and then makes a point of telling everybody like tells me and says, well, mum, it's on sale. Just because it's on sale does not mean we need it. Like it doesn't work that way. Um, but you know, we, we go on lots of walks, things like that. Um, and you know, for my husband and metwo like, we make a point of setting time aside or you know, booking it on the calendar that, you know, we're going to go on a date or you know, he's going to go and see friends or, you know, go, go to whatever, go do something and same with me and make a point of that.
Guest - Katie [08:28] And I know a lot of people, you know, don't understand that. Don't understand like, why, you know, why do you need to do that? Like, why do you need to go on a date night? Or like why? Because our life can be really hard at times. And it sounds silly, but literally last time me and my husband had went on a just a little outing together. No children. We were only gone for two hours. And I swear to God it felt two weeks. It was wonderful. It was wonderful. Oh, it was great. Um, nothing exciting. Just had supper. But you know, it was that having a conversation with an adult and no kids, you know, was saying mom or Avery saying movie, iPad about a hundred times within 10 minutes. Um like, it was great. It was like a two week holiday. So I wouldn't know what we'd actually do if we went on a two week holiday, but two hours did wonders, did wonders for us. So, you know, it's important and, and it's, and it's good for you. And you know, honestly I think I believe that if the more breaks you take and the more you take care of yourself, even if it's, you know, staying in your house and having a hot bath and closing the door and letting no children in, that's, that's just time for you and it's, you feel so much better and you, you absolutely need to, you have to keep your sanity really. You've got to do those things.
Host - Samantha [10:04] Absolutely. It's a, it's a big part I think of parenting in general is just breaking away. Taking that time for yourself, reflecting, you know, you know, we all hear there's our kids are all broken records and there's always that one thing they like they like to repeat over and over again. It kind of throws you off. What have you used? Is it, has it been whether a book or maybe like going online with them or anything, what have you, like how did you, what worked for you to kind of explain to them a little bit of what's going on or like you know Avery's diagnosis or what, you know, how it will have, what have you found to be the best way to kind of break it down for them so they kind of get it?
Guest - Katie [10:49] Well, you know the thing is is that since this year, since our daughter went to school, I think this just last little stretch here, a few weeks here that they've been in school. She might actually fully understand to some extent more than she did before and it was nothing really that I did or my husband did or really anything we explained it's about there was other kids in their school that also are on the spectrum and she had came home the first day and said, mom, there's a boy that is just like Avery, but he doesn't talk like Avery mum, but he jumps like Avery. Oh, okay. All right. I think we need to go off a little more than that, but, okay. And, um, and like he, he needs just, he needs to have a little teacher just like Avery, Oh, okay. And mom this and mum that and explaining that there was another child and, and that's okay because I want to be that boy's friend and you know, it made feel good.
Guest - Katie [11:54] Um, because not, you know, Natalie grew up with Avery and Avery being on the spectrum and, you know, so she's a little more used to it than say another kid. But, you know, it was nice to see that she came up with that on her own and that, you know, she, it didn't matter if there was another child in the school that was on the spectrum or was in a wheelchair or whatever, she wanted to be their friend. She wanted to know about them and what they like and everything. She wanted to be their friend? And you know, I was proud of her. It was so good to see. But you know, we haven't really read Natalie you know, Natalie or our youngest Jackson, we haven't really read them a book or showed them anything on YouTube or anything like that.
Guest - Katie [12:46] Um, you know, they have grown up in a house that is very, um, I guess believes in inclusion and also, you know, really promotes acceptance. And Natalie, um, has been around and been with me when I've went to events for Autism. Uh, she has seen me, uh, speak at different, different events. Um, you know, Oh, she has seen me on TV, things like that. So she has grown up with, you know, me and my husband both speaking so much about Autism and then explaining about Avery to other people where she's been around and she's heard and you know, it, it never changed anything. You know, Avery having autism, you know, never changed really anything for the amount that she cares about him or loves him or anything like that. She wants him, she wants him to succeed. And I don't know really, well I could be wrong, but we've never read her a book or showed or really anything online.
Guest - Katie [13:55] But I don't know what any of those things would have done for us. I feel like our life and you know, the things that we do day to day, uh, the families that we've connected with, the families that she's met through that, you know, she has learned so much more than any book or any, you know, um, a video or anything like that could ever, could ever show or explain. And, you know, just hearing her talk, you know, she's only five and you know, it's a little bit scary at times. She was like five going on 16, but like, there's times when I'm so proud of her because, you know, she says there was a time and she would have been, ohh, she would've been four...I guess almost five. And there was a lady in the grocery store and was just rude, so rude.
Guest - Katie [14:53] And was like getting mad. And she was talking on the phone and she was getting mad because Avery, um, Avery was stimming and, and getting quite excited. And um, anyway, just being apparently too loud for her in the grocery store. And this lady had made this kind of vulgar comment and was like, get a handle on your kid and tta ta ta ta. Ah, and Natalie, she's just like, that's my brother Avery. He has autism. Be kind. The end. I was like what? We went to the checkout and that was the end of that. But like she's very protective and you know, anybody that we see in the park or anything, she makes a point of like going and asking them what their name is and just, yeah, like, and it's good. I want, you know, that's the biggest thing. All my children, Avery included like our whole family. Um, that's kind of my goal this year. Um, going into schools and talking to classrooms and assemblies and things like that is about being kind. And it doesn't matter what somebody looks like, it doesn't matter what you know, their label is, anything like that, no matter what. It is so important to be kind because you don't know what that other person has went through or what their challenges are or anything. And you know, it's, it's important to kill everyone with kindness. Kindness is honestly the thing that well make the world go round and make the world a better place.
Host - Samantha [16:39] Absolutely. That's amazing. She definitely, she definitely knows how to advocate for her brother and you know, she definitely was just like, um, excuse me. Oh my goodness. Um, okay. So, Oh, talking about being kind, obviously when you open up your story and you open up your life online, Instagram, Facebook, the like you open yourself up to obviously people who have different opinions or more likely than not, don't know the whole story. And I know earlier this month you kind of spoke out a little bit, especially with the hashtag just asking movement. One of the downsides of that is that it usually clumps together a group of people specifically it is, you know, it kind of clumps together. Um, the Autism community with the subject of vaccinations. Um, if you're okay with this, I would really like to hear what your opinion is on this and how as not pro or, or, um, pro or cons of vaccinations. That's, that's nobody's business. More of like how you feel you've been able to, you've had to kind of defend yourself against people who think, for example, vaccinations cause autism.
Guest - Katie [17:51] So you know, this, it's such a crazy thing. I didn't even know, you know, when we started our, our journey with autism, I didn't even know the kind of the tie or the, um, the link or what social media had to say about vaccinations and autism. Like I didn't know, I wasn't aware. I didn't know what existed. I didn't know that there was people speaking out against vaccinations. I didn't know like nothing really. And the more that, you know, we started sharing our story on social media, um, speaking out publicly about our life. There was a good chunk of time there where we were attacked like on, on Facebook. We were attacked on Instagram. Um, we were sent, you know, emails, things like that. Um, and you know, if it is very tough to be on social media, um, nowadays and when your life is public, uh, because people can be mean, people can be mean, but you have to have tough skin.
Guest - Katie [18:54] And you know, the thing is, is that I had been really watching the, everything that's going on right now with just asking and that whole campaign and everything and I've watched videos and, and the thing is, is that I think all of those moms are remarkable. Here's the thing, it's not easy to, you know, speak out about something and talk about something and open yourself up to being critiqued and you know, people making remarks about, you know, your family or child, whatever it may be. It's really, really tough. So, you know, I've been watching what people have been saying and what they've been posting and just really what the discussion has been about. And you know, it's a little bit different in the States than it is up here in Canada where we live and the opinions on certain parts of vaccinations are a lot different.
Guest - Katie [19:54] And you know, I have a few friends and some family members that live in the States and I had decided to join in on that just asking campaign. And you know, the thing is for our story and our family, I just believed and I think that, you know, vaccinations weren't part of our story. And you know, everybody wants to know why I think that and why that, you know, why that is part of our story about, you know, vaccinations didn't cause Avery to have Autism. Uh, when I was pregnant with Avery and I had went for an ultrasound, um, my doctor had got some blood work done, things like that and had said to me, I'm going to send you to the specialist and you're going to get a 3D ultrasound. I want, you know, to check out some of his head measurements. And he was really concerned, my doctor and me, I'm just freaking out like what is going on?
Guest - Katie [20:59] And I, you know, it was my first time pregnant. Um, I didn't know what to think. I, and you know, I don't have any siblings. I was an only child so it wasn't like I could just phone my sister or phone my and be like, did this happen to you? Like I was an only child. So, you know, the thing is is that I ended up getting sent up to the specialist and the specialist had said, you know, there's nothing wrong. Like I don't know what your doctor thinks he sees or thinks he doesn't see or what is happening. But your baby is fine. There's nothing going on, there's nothing wrong. Like everything's fine. Okay. So then I go back, go to my doctor, you know, and he's, he's the results and he is like, Nope, I'm sending you back. I ended up going back up to the city three time to see this specialist to get a 3D ultrasound by this time.
Guest - Katie[21:55] After the third time the specialist was so sick of seeing me like so angry with my doctor and my doctor had said autism and at the time I didn't want to believe my doctor cause I was like, how would you know that? Like why would you even bring that up and the specialist, I was thinking you have to be so much smarter. Like you're a specialist, you must know what you're talking about. You're saying there's nothing wrong. My kid is going to be fine. Like, yeah, he's probably gonna have a big head, but it's just cause he has so many brains in there. Like I just like didn't want to hear anything negative and anything bad. And it's funny now to look back and, and like know, like even when Avery first got diagnosed and stuff, thinking like, what did that doctor see, what did he see and why didn't I question him?
Guest - Katie [22:47] And like, why didn't I get mad at the specialist? And like, you can't go back. It is what it is and this is our life now. And, and that is the way it is. Um, but in our, you know, our specific, you know, story, I don't think vaccinations were part of our story. And not to say that I don't believe or I don't think that can be a part or is a part of someone else's story. Um, but then, you know what, at the same time, there's so many families that I've met, um, face to face and met their children and their children, you know, their families of two or families of four and none of their children had vaccinations. They've never received one. And out of that family of four, two of them are on the spectrum. Um, and one is severe and one is one is not and things like that, you know, so I have, I have mixed feelings on it and it's such a, it's such a controversial topic.
Guest - Katie [23:52] Vaccinations, autism, what people think about it, you know, what's going on, stuff like that. And you know, I'd really joined in on that just asking campaign and um, you know, was really, I just gave my opinion and kind of my voice that, why can't we just, you know, why can't everybody just share their story and not be judged, not have a herd of people attack them for sharing their story. Everyone's kid is different. And especially when we're talking about the spectrum, everybody's kid is different. Everybody's family is unique. And you know, I believe that, you know, whatever you believe in and whatever you want to advocate for and whatever you feel like is the, in the best interest of your child and your family and your life, that is what you need to do. And you can't worry about what everybody else thinks and what everybody else, you know, um, wants to say, say about vaccinations or anything like that.
Guest - Katie [24:52] Um, all my children are vaccinated. They all are. Um, I know we had shared that on social media and there was a lot of people that attacked us for that. And you know, why would I get my kids vaccinated and I don't know. You know, I did. I got them vaccinated and, and I wanted to keep them safe then. And it was just at the time, when it had happened...That was my parenting. That was the choice that I made. And you know, families that choose not to vaccinate, I believe that's their choice too, um, you know, it's, you, you have such tough choices when you're a parent, you're, you know, you're responsible for yourself and you're responsible for your child. And everybody sees the world in a different way. And you know, as a parent, it's up to you to do your very, very best.
Guest - Katie [25:47] And if you feel like your very best is getting your child vaccinated, then you're doing your very best. And if you feel like, you know, you want to delay one of their vaccinations or whatever it may be, then you can do that. But you know, I've been watching really close in the States and the thing is, is that I'm proud of a lot of those parents, you know, they're asking tough questions and they just want an answer to them. You know, they just, knowledge is power. And I think that is what, you know, a lot of, um, a lot of big companies and things like that don't like to give, they don't like to give answers. They don't, you know, they just don't. So, you know, it's good on them, but they're asking tough questions and they're advocating for their kids and why not? You know, there was, it was not that long ago when in really in the sense that women were never listened to.
Guest - Katie [26:42] And the thing is, is that it's important that not only women, but better men too are, are speaking up and telling their stories. And, you know, I think, you know, in a sense um talking about what, what is going on in the States and that especially California right now and really, really standing with everybody. Because the thing is, is that all of these families just want their kids to be okay. You know, um not lumped together cause I know that's happening a lot now and, and stuff like that, but just everybody wants the very best for their kids. And, and somewhere along the way, I think everybody kind of forgot about that. And, and, and it's kind of scary. It's kind of scary that where you are getting your, um, you're getting your rights taken away or you're getting pressured into doing something that you don't believe is right for your child and, and you're getting forced kind of forced to do something medically that is, you know, not right or not a good fit for your child or anything like that.
Guest - Katie [27:53] I read so many stories about children that were, um, injured by vaccines and one story to the next. It's heartbreaking. And, and you know, you hear about it more and I read about it more in the States than you do in Canada. And I don't really know why that is. I think, you know, in the States, um, obviously bigger population, but then also it's, people are a little bit more willing to talk about it. And in Canada, you know, up here, especially in Saskatchewan, we don't talk about those things. We don't talk about vaccinations. We don't talk about nothing like that. I'd really, anything to do with, um, anything to do with medical. Um, it's really touchy up here.
Host - Samantha [28:41] It's difficult. I mean, like you said, it's, um, at the end of the day, you know, what works for you is what's best. And you know, that's, that's the collective. I think that's the collective movement. And I think that's, you know, everybody, um, like you said, everybody wants the best for their child at the end. Everyone's fighting to have the choice to do what's best for their child and do what's best and what works for them. Um, so it's, it's certainly a movement. It's certainly, you know, like I said, it has amazing intention for that reason, but as you know, it kind of drags a few extra extra things into it that kind of make it a little, you know, muddle the water. Muddles the water a little bit.
Guest - Katie [29:20] It makes it really, really tricky. Like, and I don't think a lot of people really understand until you start reading some of these stories about families and, and you, you have a hard time wrapping your mind around it. A family is that this doesn't effect, you know, and they read about this, they're like, well you, you just bring your kid and you get your kid vaccinated. What's the big deal? Like they don't understand, but then, you know, there's people that this is severely affected and they just want answers. They want there to be education surrounding, you know, vaccinations. They want there to be knowledge. All of these things. And there's so many amazing advocates on social media, on Instagram, on Facebook, you know, sharing videos and having live feeds and doing podcasts and, and everything about this. And, you know, it's really just, you know, one of those things that we need to educate people.
Guest - Katie [30:25] We need to not one. Um, Oh, you know, what was it? It was some term that was being said about something doesn't fit for all. Um, you know, not, not one thing fits everyone. Probably about a shoe, that not one size fits all.Yes. One size fits all that, you know, same thing and, and it, and it's scary, you know, none of her kids are made the same. All of our gifts are different. You can't of expect that one, you know, one vaccination is going to work for the many. Um, and, and families feel that and they see that and they, you know, they want to know why. And, and if you know what child's has, um, um, preexisting condition, whatever it may be, they honestly are just watching out for their children. And I, and I don't blame them in any shape or form.
Guest - Katie [31:17] There's so many people want to know exactly what our opinion is, but we don't really let me and my husband both, we don't really have an opinion on really vaccinations that if you do or if you don't, I just want everyone to have kids that are healthy and have kids that are happy and have families that are safe and families that are educated and you know, you do what's best for your children. And the thing is parents know best. Anybody who says different, I don't know, but I feel like parents know best, they know their kids and they know what they want and, and really they, they, they should be allowed to ask questions and get answers for them and whatever that question may be, they should get an answer for it. I think if they started getting answers for what is happening or questions they may have or anything, I think things would get a lot better. I really do.
Host - Samantha [32:16] To turn the tables just a little bit, um, just a few final questions. Um, is there any book or anything that you would recommend for any families who want to learn more or that you felt was helpful, um, to guide your research outside of, you know, what the doctor said or outside of what you know, um, a other therapist's said.
Guest - Katie [32:39] You know what, honestly, I don't think there's a book, but if you are already a social media person, if you already have a Facebook account and you are already on Instagram or Twitter, really any, anything like that or Google that I, you know, I always say don't Google, but this would apply. Um, you know, the thing is, is that social media is so big now that anybody really, anybody can find someone else on social media if that be, um, a blogger, um, you know, a family that just shares parts of their life. Um, social media is a wonderful thing where you can ask questions, you can find and source out your own information. And it really is not that tricky. And be able to be in control of your life and get, you know, get information, ask questions, uh, connect with people on different in or on different platforms through social media and find out what you need to know.
Guest - Katie [33:49] That is what the majority of families that I'm connected with now, that is how what they had did, you know, they were at this stand still with, you know, getting a diagnosis or a stand still with, um, you know, getting a support in place in school. And they had reached out to me and you know, and then I'm like, Oh well go here. Oh, go there. Um, you know, from Avery being into kindergarten to now grade three, I have a wonderful directory of places all in our province where families can go and I just give them somebody's name or somebody's contact information. It's wonderful. And it's all through social media. That's what's so wonderful about it. And so there isn't really a book, or anything that I, you know, with things that families really, really should read or anything like that. Just in a general sense, a book that I like highly enjoyed and I read it like now four times.
Guest - Katie [34:51] I think I have a problem actually and it's purely just based on mothering. It's just such a good book is um, the book that Kat and Nat came out with and they came up with this crazy book about their motherhood and, and um, mothering their kids and anyways, and everything in there. Like we're special needs family. I'm a mom to three kids and my oldest is on the spectrum and there were so many things in that book that it was just like, do you have like a, a camera in my house? Like, do you, are you looking into my house right now? It was crazy. So that's just a really good book to read. But like besides that, no, no. I just, I think so nowadays nobody's really, there's people still read books like I read books, but social media now has overtaken everything. People, people are watching for ideas on social media. People are watching when new products come out and what their bloggers are saying and everything like that. That that's how you, that's how you know, that's how you find out information. And, and especially if you're, you know, connected with people that are in your area and people that say live in the same state as you are, same province as us, you're able to find information you need or ask questions and, and people can help you and, and answer back and get you to where you need to be.
Host - Samantha [36:22] Absolutely. Katie, it's definitely a strong tool for many families and definitely a vehicle for other families to connect with each other. For anybody who would like to follow Katie and Avery's journey, you can do so on Instagram, @katiemde and also on Facebook "A Journey for Avery" Thank you so much again Katie for joining us, and we'll be back later this week with another inspiring story.