Ep. 73 - Avery's Journey: You Have to Ask for Help

October 24, 2019

Ep. 73 - Avery's Journey: You Have to Ask for Help



Welcome to episode #73 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 first part, Katie focuses on how asking for help and not just waiting for it has made the difference in her son Avery's diagnosis and obtaining the therapies and support he currently has. This has also been the driving force that led her to advocate for individual families and the community for more and quality supports for the children of the province on the Autism Spectrum. Katie has been featured and interviewed on multiple outlets, speaking out and shining a light on the current state of what is available to her underserved community.

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.

Be sure to subscribe and leave a review on Apple Podcasts or Spotify

You can find a full transcript BELOW

Mam'a Tip:

"I really, really believe that help is not just given to you. And I find that to be something that a lot of people that I've, you know, connected with or talked with or met, just with this whole Autism roller coaster, is that everybody is waiting for some shape or form of help. They don't really know what they're looking for or what even really they want. They just want someone, you know, to be in their corner and someone to help them. And I just, I believe that help isn't given that you have to ask for help and you have to push for help and you have to want help and you have to want help for your entire journey."

TRANSCRIPT

Guest - Katie [00:00] For sure. So my name is Katie Emde. I am a mother to three children. My oldest son, Avery, our middle daughter, Natalie, and then our youngest Jackson.

Host - Samantha [00:15] Perfect. Okay. And then, um, can we backtrack a little bit and um, today we will mainly be talking about your son Avery. Um, can we, can you kind of walk us through the day you found out about his diagnosis?

Guest - Katie [00:29] For sure. So Avery got diagnosed with severe nonverbal autism when he was about five years old. And at the time I actually was just, uh, pregnant with my daughter and I would have been probably about two weeks before I was going to go into labor. So I was already really anxious and, um, you know, worried about going from one kid to two and things like that. And I remember going, uh, to see the child psychologist and bringing my son Avery to that appointment just for an initial assessment to see where he's at and then really what is going on with him and what is happening. And if, uh, autism is something that is going to be a part of our story or journey, things like that. And that very first appointment really just rocked our family and was really, really hard for us.

Guest - Katie [01:35] Uh, the child psychologist had at our very first appointment had said, well, Katie, you know, I don't think there's anything to worry about with your son. And I remember looking at her thinking, do you know what you're talking about? Are you sure? And she said, I want to just tell you. She said, I really think it's just your parenting. And that was so hard for me because, you know, not only do you not want to hear that, but then also I was bringing another child into the world and I was thinking after I left that appointment with Avery, like, this is my parenting. Like I'm a terrible parents, like what is going on? And I just, I really took what she said to heart and I had such a hard time for a good stretch. Um, even after I had my daughter really wrapping my head around that. Now, of course she was wrong and, and we kind of continued on with our journey, but some, you know, we ended up having to see a different psychologist and kind of do everything that way. But, um, you know, Avery being diagnosed, um, on the spectrum was something I definitely was ready for.

Guest - Katie [02:56] Um, I knew it was coming since he did get diagnosed when, you know, he was five. Leading up to it, you know, I had two golds. I had, you know, knew other people in our community that had a child on the spectrum and I just knew, I just knew that that was what was going to happen and that was some thing that was going to be a part of our life.

Host - Samantha [03:25] Yeah, definitely. I mean, and you know, going through that stage where you were pregnant, you were told, you know, this is your parenting that's causing, you know, what you think is might be going on and bringing another child into the world. How did your husband, um, kind of support you through that and kind of get you to kind of keep investigating and to keep looking for a second opinion.

Guest - Katie [03:48] Oh my, you know, my husband, I'm am a pretty lucky, pretty lucky wife. Um, he has been so supportive and so just honestly the rock in our family when Avery's having a hard day and, you know, I have, you know, taken Avery to therapy or you know, just something as simple as we went to the grocery store and it maybe wasn't the greatest experience. It really doesn't matter really what happens in our life. Um, my husband is so so supportive and you know, kind of talks me down when I'm having just kind of a really rough day and I'm not sure which way. Um, I don't really know, I guess up from down and he is definitely a lot more centered than I am and very much tries to see, um, you know, the best in everything and really wants to make sure that not only all of our children, but you know, that I have the support that I need from him.

Guest - Katie [04:58] And it is a really, it's a really great thing. And, and me and all of our kids are so lucky to have him, to just really make sure that our story and our journey stay on track. And, you know, when I was pregnant with my daughter and all of that was going on, he kept reassuring me that everything was going to be okay. And at the time I honestly thought he was lying. Like I was like, okay, like, sure, why not? And he just, he knew it was gonna be okay. He knew we would get through it and that, you know, there would always be a hurdle in our life. There would always be something next, that might be tricky, but that our family is quite strong and that we were going to, we were going to overcome anything that was to happen.

Host - Samantha [05:51] Definitely everyone, you know, every family has a rock and everybody has that, needs that, you know, that point of center or just bring you back from the chaos and kind of be able to look at things in that and a new perspective. Um, so I guess talking about new perspectives, you know, you were told from the psychologist, this is what's going on, this is why this is happening. Obviously you knew in your gut as much as you were fighting through that, you know, that mentality of, Oh man, this is my fault. You still knew in the deep down like, okay, it can't be all my fault. It's like, I know I feel something else. Like what did you, what motivated you? Like how did you find that second opinion? How did you sift through obviously providers or just like resources to kind of like get down to it?

Guest - Katie [06:37] Well, you know, we had a really hard time finding someone that would help us, you know, someone that would help our family and help our son. And um, just, you know, really get down to the bottom of everything that honestly, I'm really, really stubborn. That is, that is a quality I have. I'm really stubborn and I don't take no very well. I, when someone says, no, your son can't do something, or, you know, no, we're not gonna do that for you. I'm the person that's like, no, he is going to do this or we are going to get to where we need to be. And it took a really long time. Um, it was a lot of phone calls, a lot of meetings, um, a lot of traveling, everything to you know, not only kind of get through the system with Avery but also make sure that we were doing the very best for him and getting him the very best help and the very best support and that it was something that, you know, just our family needed. And it took a lot.

Guest - Katie [07:49] It really, and it was draining. There was points that I was, you know, through from then to now thinking, wow, like what is there, what are we doing? And, and you know, it can be really overwhelming. But from all of that, like from the day, you know, we kind of started our autism journey to now I look back at everything that's happened, um, from getting Avery into the system for him getting diagnosed, um, from his very first day of attending public school, everything. And I think, wow, how far have we came? Like, you know, and sometimes I forget like I forget about, you know, the hard days. Um, that it happened years ago and kind of all the struggles that we had. I think almost in a sense I tend to bury them a little bit. It's like I don't want to think about that really bad year or I don't really, I know it happened and I know it's there.

Guest - Katie [08:53] I'm just a person that looks forward to the future. Um, because we really have been lucky now to have such a really, we have a really, really great life. We have a wonderful family and, and a great support system. And every day we never know like what the next day's going to bring. Um, we still have our, our tough days, um, as a family and Avery very much has his tough days, but we've came so far. I feel like the older Avery gets, um, some of the things that were really tough when he was younger are getting a lot easier now. But then we're also finding there's a lot of new challenges that we're having to, um, figure out to navigate. So that can always be interesting.

Host - Samantha [09:49] Okay. Yeah. Def, I mean, just really quickly on, just so our listeners can kind of get a perspective as to where you're located. Where is your home base?

Guest - Katie [09:56] Our home base...So we live in Saskatchewan and we live in a very small town called Midale and we're in Canada. So for anybody who lives in Canada or even lives in Saskatchewan, in our province, knows that when you have a child on the spectrum, it's really, really tricky. Um, when you live in a rural area to find resources and support and help and everything that comes along with that. So you end up doing a lot of traveling and a lot of driving and it, it can be tricky at times, but we've also lived in this rural area for so long now that it comes naturally to us that we're going to be driving, um, for an appointment, we're going to be drive for therapy. Um, anything we need, it's, it's now got a lot easier, I should say.

Host - Samantha [10:59] How do you schedule that? Especially with your kids being in school already and it just like everyone's schedules, everyone's activities. Um, do you have any tools that you feel have like really helped you keep everything you know, on schedule?

Guest - Katie [11:23] Honestly, we...you know, uh, I have a planner, uh, that comes in my purse with me. Everywhere I go, I have it, you know, anything that's happening in our family or you know, something we need to remember an appointments or anything that's booked. I write it in my planner. Um, I am very not dependent on technology. There's been a few times where my email has crashed or my phone died or something like that, that I do have all of our staff, um, information, everything in my phone. But I'm a pen and paper girl through and through and it's never let me down yet. And you know, we're a pretty organized family. Um, my husband works full time and I have a pretty much always been a stay at home mom with my children. And my youngest son is the only one that's home. Um, my other two are in school, so Avery is in a grade three this year and my daughter just started kindergarten.


Guest - Katie [12:28] So it's very, very busy. Um, you know, just school, the school routines in the morning. Uh, just getting up can be, our house is a little bit like a zoo. If we're being honest, in the morning. It's pretty crazy and you know, Avery doesn't always want to go to school, so it makes it tough. You know, there's, there's a lot of days where we're late, uh, late for school to get out the front door. Um, but you know, with my husband's schedule and our schedule in school, um, and even mine alone this year has been, you know, we're just into the school year, but it's really been a little chaotic. Um, from everything we've learned, um, with our own journey with autism and navigating the system in our province and everything. Um, I had started sharing our story publicly and using social media, things like that, and, uh, kind of shining a light on autism.

Guest - Katie [13:29] And from that I started helping families across the province, uh, with their own journey and navigating and helping them, uh, financially and all of those wonderful things. So it's kind of interesting. It's a weird kind of job that I fell into is from our own story and our own life. I turned it into my now full time job, so I advocate for families. Um, all over Saskatchewan, um, hundreds and hundreds of families I advocate for. I help them in the school system. I advocate for them on a provincial level through our government. Um, so our schedule is very, very busy. Uh, the school year, um, is by far the, our, my busy time. And in the summer I really focus on my family and, uh, me and my husband and we always spend our summer prepping now for the next year. Uh, if that be, you know, a fundraiser we put on, if that is any partnerships we do with companies.

Guest - Katie [14:41] And yeah, it's, you know, people say that having a child on the spectrum has been hard on their family. I hear that from a lot of families and I don't find that to be fully true with our family. Um, because we've had some really hard days and some really hard times. But from all of those hard days and hard kind of hurdles that we've went over, I'm now able to help other people and help them find their strengths and find their voice and learn how to advocate in a productive way and how to help their kids and really overall just make the world a better place.

Host - Samantha [15:26] Absolutely. And these families, you know, how, what's the best way for them to be able to find you? Um, you know, especially if they've just learned this of the diagnosis or if there, like you said, navigating, you know, getting into the school system. Like what is the number one way that they can reach out to you?

Guest - Katie [15:41] You know, it's amazing what social media has been, um, we, uh, once again, like I told you that I am very much a pen and paper girl and I didn't believe really in social media anything like that. They never really used it before I had kids, um, not a whole lot anyways. And really we use so, um, or we do so much on, uh, Facebook. Uh, we have a wonderful community, so supportive, um, great set of moms and dads and um, you know, uh, co-parenting, everything that is on Facebook on a page that we run called A Journey for Avery and everybody comes together, we share articles on there. Uh, we ask questions and we share information. It's really, really wonderful. And then the next kind of, I guess social media, um, outlet we use is Instagram and we're fairly new, uh, with sharing through Instagram.

Guest - Katie [16:47] But we have found such wonderful just families. You know, when we had started just our own personal journey move with Avery, I very much felt alone. I was thinking where the only people that could possibly be going through this, um, you know, we didn't really know anything about Autism and it was really overwhelming and it was so nice. When we had met all of these families through social media and it's like they understand what you're going through and they can, they can help you, they can be supportive, they can give you tips on, you know, anything that you're going through. And with Avery, when we first started, we had so much trouble with him getting him to eat. It was really, really tricky. Um, he has a very selective, uh, pallet and um, sensory when it comes to textures that we had a really hard time getting food into him. And also, you know, just from social media, we had such great feedback and support and help with our own journey on what to do to help Avery with his speech. Um, you know, when we started our autism journey, he only probably had about 13 words and now he's in grade three and he's eight. And I would say he has closer to about 45. Oh, we're slowly getting there. And it's great. It's wonderful.

Host - Samantha [18:55] Seeing that you pulled together all of these resources, you're leading the charge on connecting families and really kind of showing families that they're not alone, which is that emotion that you went through yourself and really just kind of going through that roller coaster. What were some of the resources that you feel really did, um, help Avery be able to show this progression and also that he just enjoyed, that you felt, you know, even though he was nonverbal to an extent, you know, he was still able, you still saw the joy in him when he was participating.

Guest - Katie [19:47] Oh, for sure. He, you know, the thing is, is that something that I really, really believe in is that help is not just given to you. And I find that to be something that a lot of people that I've, you know, connected with or talked with or met just with this whole Autism to them roller coaster is that everybody is waiting for some shape or form of help. They don't really know what they're looking for or what even really they want. They just want someone, you know, to be in their corner and someone to help them. And I just, I believe that help isn't given that you have to ask for help and you have to push for help and you have to want help and you have to want help for your entire journey.

Guest - Katie [20:42] So with our family, I had at the very start have a re a little bit of a hard time, um, you know, asking for help, you know, cause at the beginning I already got my parenting critiqued and I was kind of down in the slums and I didn't really know what was going on and I wanted to be that person to be like, I can do it all. I don't need anybody. I got this. And then you know, it came back and it was like, no, I don't have this. Like I very much need help. And that is kind of something that I teach families and, and explain to them that everyone needs help. You can have a child that um, you know, you can have a child that's a-typical and you still need help. Everybody needs help. Parenting is tough. It is tough on the best of days. And for our family, you know, I had to open, open myself up to that, that we needed help, we needed support and that, you know, I've always kind of, uh, talk about this with families at different functions I've spoken at saying that, you know, you have to be okay with knowing that you are doing your best. I know that I'm doing my best, uh, raising my son Avery and raising, you know, raising all my children and my family and everything else, but it's okay to ask for help, you know, it's okay to want help and accept help and things like that. And I know really for our family, the help that's came to our family, I had to fight for and I had to ask for and beg for and everything. But once it started happening, so once we started receiving a speech therapy and once we started, um, you know, uh, having Avery in the school and, uh, getting occupational therapy involved and all of those things started, you know, being a part of our story, it really did help him. Um, it took him a little while to get used to someone telling him what to do.

Guest - Katie [23:03] And he, he doesn't really, he's not big on new people. He, it takes some a little while to warm up to somebody for sure. But it really has benefited him and our entire family. And now he's made such amazing bonds with, all of his workers, everybody that's on our school team. And he has this amazing relationship with them that even when he's having a bad day, he knows that he can go back the next day and they still are there for him. They, they still want to work with him. They still wanna support him. They still want to see him grow and develop and be his best person, which is really nice. And it's so good when you have a great team. And I only hope that everybody has this amazing support team if it'd be in their, in their home or at school or even if you homeschool your children and whatever it may be that you have that team that can help you support your child if it be with, um, food therapy, behavioral, occupational, whatever it may be. I really hope that for everybody, because we have that and we've fought really, really hard for it. It wasn't just handed to us, it wasn't just gave to us. Um, I think sometimes I wish it would have been to a point, but the, you know, it's good how everything's did end up working out.

Host - Samantha [24:42] Obviously it was a transition for Avery to be able to adjust to other people, especially other people telling them what to do and maybe try to, you know, teach them something new. How did you, what did you feel worked to kind of help him through that, that transition? Um, you know, a lot of parents go through that same thing and they kind of rely on the, on the provider or the therapist or whoever to kind of make that, you know, help the child transition. But in your eyes, what did you feel was something that the parent or you can do to kind of help that transition?

Guest - Katie [25:23] You know, you have to go into it with a positive attitude and you really have to want one, to, I guess, be on your therapist or you know, um, whoever your support person is, you want to be on their team, you know, so whatever they're doing, you want to make sure you're doing the same thing. So you guys aren't sabotaging, I guess sabotaging what the other one is doing. And I went, made sure whatever we were doing, even when Avery was little and just had started school, he was so mad at me in the morning. He didn't want to go to school. He would throw his backpack on her deck. And like, it was a whole production every morning for almost the whole entire year of kindergarten. It was rough. But every morning I would kind of say to him, I'm like, Oh, good morning. I'm like, we're going to school.

Guest - Katie [26:10] I'm like, let's get her backpack. And like I was always really positive about it and really, you know, we're gonna we're going to go outside for recess and I, and just like really explaining to him what his day was going to look like at school. And then, you know, when he'd come home after that day, even if he had a terrible day and I would make a point of saying, okay, three more sleeps and then we're done in school and it's the weekend or something like that. But I would always keep it positive. I would always be like, you know, even if he had a rough morning at school, I would, you know, talk to his teachers, whatever it may be, and then bring it up with him. And sometimes, I'm sure he wasn't listening to me. He tuned me out. Like K, I'm watching my, I'm watching my iPad now, mom.

Guest - Katie [26:57] Like I'm done listening to you. But I would always try to get him engaged in what I was asking him or talking to them about, or I would, you know, just make sure that everything, you know, he knew that all of us were trying our darnedest to make sure he was having good days and, and trying to help him and support him. Um, through all of that, there was a lot of bribing. I'm not, I'm not gonna say there wasn't cause like with, there's so much bribing in kindergarten, um, just to get him in the doors, but you know, now like he's in grade three and it just, it blows my mind because he hardly, we hardly fight now in the morning, you know, he just like gets up and, and, okay. All right, I'll put my, put my shoes on. Okay, we're going to go.

Guest - Katie [27:50] And that's it. Um, but you know, once we get closer to the end of the year, but I usually have the last two months. Stretch is a real struggle still. But now, like it's slowly starting to get better and he's wanting to participate, um, with his occupational therapist and he's wanting to do more things with them and he just made really good bonds with them. So, you know, I always tell them no one can leave. And I think they think I'm joking, but I'm being very serious. Like no one can quit their job no one can leave. Um, no one can have another baby, like everybody has to stay where they are. Um, just because, you know, we've had, um, in the past, um, someone switch out, um, as one of our team members and Avery really didn't do well with it. And I was thinking, Oh my goodness, like how are we gonna make it through this?

Guest - Katie [28:48] And we did, we did make it through, but it just, it, it's really, really tough. You know, they think it's only tough for them when we go and see them. But no, like it's, it's tough right across the board and they, you know, they don't really always see everything that happens. And, and you know, like, it's always funny, but they, lots of, you know, people that are on Avery's team and school team, things like that. Oh, Katie, he had such a wonderful day and I can just see it in his eyes. I'm like, well, we're going home and I can, I can tell that you're pretty wound. So yes, you had an amazing day at school, but what are we going home to? What is going to happen when we get home. So you never know. He, he's like a little, um, a little box of mystery. You never know what you're going to get and you never know what's going to happen and you're, it's like a roll of the dice. It's crazy.

Host - Samantha [29:43] Oh my goodness. And, um, going off of, you know, you have all these therapists, if for any therapist, so any PT, OT, ABA that are listening, what would you say as a parent is one of those like skills or attributes or characteristics that a therapist that attributes to how well a therapist connects with the child and kind of really, you know, pushes them and, and makes it an enjoyable process.

Guest - Katie [30:10] I would say, and this sounds funny and I don't know if it's like, um, statistically proven, but I, I've seen it work like with some families that I have had the pleasure of meeting and being around their children and even Avery, always have a match. So like, um, an OT say with Avery or, um, an ABA therapist say with Avery that has the same equivalent of energy if not more, and you can do wonders. I don't know if it's like a proven statistic, but I swear it works. Um, because everyone who is high energy like Avery and can run just as fast as him and you know, is kind of busy like he is and um, yeah, does really, really well with him. And he's really big on ignoring, like if he knows you're asking him to do something like, okay, put your shoes away or whatever it may be.

Guest - Katie [31:14] Like he goes and kind of looks out of the corner of his eye and just continues on with his day. Like, I heard you, but I'm gonna pretend I didn't. So you know, you have to have the same amount of energy. And you know, it's, it's funny, but I had kind of tested this theory the other week. I was in a school and I had went to a meeting with another family for their child and their child is so cute. Like you just, you have to instantly love their child, like the cutest and way cuter than my kids. And I think my kids are adorable. So like, and we go and, you know, just having a rough day and just didn't want to be with the therapist, didn't want to be in class, didn't want to do anything, and that's fine. Just having an off day. So then everybody's kind of wondering what should happen with this child and this child starts kind of getting a little bit upset.

Guest - Katie [32:17] So me being Avery's mom, I have a lot of energy and I think I have to just because that's the way our life works. So I went in there and I kind of started talking to the child like the same way I talked to a free and I'm just like, why are you mad? What are you doing, let's go over here. Let's take our shoes off. Oh no. And like talking really, really fast and the same energy level as this child. And this child looks at me like you are crazy. Like I could just see it in his eyes and he wasn't mad anymore. He wasn't, nothing. And I was like, do you want to come to the library with me? I'm like, we have to go get 10 books. I'm like, can you count to 10? We're going to go get 10 books right now. Let's run to the library.

Guest - Katie [33:02] Oh man, I need just like, okay. Grabs my hand and we ran to the library and then it was over. And then it was fine and you wanted to go back to his classroom. So I had said to one of the therapists there, I'm like, you should try that. What I just did there, you should and like, cause he like forgot why he was mad. Um, and what was going on and what was happening, why he didn't want to be in class and I don't know. And just you have to have the same...I think that's, I don't know, it's not a proven statistic by any means, but I swear it works. We do it with Avery all the time and you know, when he's upset or having a really hard time, um, I mimic him a lot and he hates when I do that.

Guest - Katie [33:45] Like hates it more than anything. He, he looks at me and he's like, no. And I'm like, Oh. I'm like, do you not like when I do that? No. And then he stops and continues on with his day, but when he is mad, like, Oh no, he's stomping his feet around the house or, you know, and, and dumps all his toys out. Um, he really, really loves to sort, Sort Legos, sort blocks, um, sort crayons. It really doesn't matter what it is. He loves to sort, um, anything really. And he'll dump all this sorting stuff out. So then I'll pick it up and put it in a basket and then I'll dump it out and like kind of copy him and he doesn't like that. So then he just stops and he's like, okay, I'm done being mad now. Like, I'm done. Okay. Mom's just going to keep copying whatever I do. So that there's no fun in that. There's no shame in that. So, yeah,

Host  - Samantha [34:36] Absolutely Katie thank you so much for that advice. I think for any professional hearing this it's important to recognize that meeting them where they're at is an essential tool, not just for professionals but for parents too. just to really help them and guide them to reach milestones and goals that they have set. But Katie, thank you for joining us today, we are very excited to have you back next week where we'll be discussing Avery, Avery's bond with his siblings and your advocacy work and everything you are doing in your province!