In this heartfelt episode, I’m joined by Kylainah Zacharcuk, author of You Can Find Me in Her Shadow: My Sister Has Special Needs and This is My Story. Kylainah opens up about the unique and often complex experience of growing up as the sibling of someone with special needs. We talk about her book, which gives voice to the often-overlooked sibling perspective, and explore the emotional layers that come with love, responsibility, and identity. Kylainah also shares candidly about her own mental health journey. We hear how treatment modalities like Anat Baniel Method NeuroMovement® helped both Kylainah and her sister. Passionate, authentic, and deeply thoughtful, Kylainah brings honesty and heart to this powerful conversation.
Kylainah Zacharcuk currently lives in Southwestern Ontario with her Golden Doodle, Lenny. You Can Find Me in Her Shadow: My Sister Has Special Needs and This is My Story is Kylainah's first novel. In the first week of the book's release, it was on the number-one bestseller list in multiple categories on Amazon Canada. It currently holds five stars and is a recommended must-read. My book has also been picked up by Barnes & Noble, BAM! Books-A-Million, and Bookshop.org.
[00:00:00] Carole: Welcome to Wisdom Shared, where parents, children, and in this case siblings are the experts, and where connection inspires change. I am your host, Carole Blueweiss, and today I have as my special guest, Kylainah, who wrote a book recently called You Can Find Me in Her Shadow about her experience with having a sister with special needs.
Welcome to Wisdom Shared.
[00:00:28] Kylainah: Thank you so much for having me on today.
[00:00:30] Carole: You were telling me earlier this is your first podcast.
[00:00:33] Kylainah: Yes, and I'm super nervous.
[00:00:35] Carole: Okay. Well, just pretend you're talking to all the healthcare workers in the world, all the teachers, all the parents, all other siblings. No, people wanna hear what you have to say. Let's talk about yourself, your parents, your family unit, and then I wanna know why you wrote your book.
[00:00:54] Kylainah: So I'm 22, my sister is 17. So there's a five and a half year age gap between us. We are a super tight knit family. Like, family is everything to us. I'm always on the phone with my mom. It wasn't always like that.
My dad traveled a lot for work. My mom had to take care of my sister and I a lot of times by herself. So it was really challenging to have family time with just the four of us. And a lot of times I didn't have a typical upbringing where the parents came home after work from a nine to five job. So yeah, it's quite sometimes lonely. And then we started traveling and my family got close again and it's the best thing ever.
[00:01:41] Carole: Why did you decide to write a book?
[00:01:44] Kylainah: Honestly, I've been seeking for this book my entire life. There's nothing out there like this, and it's been super hard growing up because there was not too many people in my community that had a sibling with special needs.
I didn't know anyone and no one was there to really help me, but my parents tried their hardest. But at the same time, they were also living this life the same, like the first time, the same with me. Like, how would they know more than I do? There's really nothing out there like this, and I really wanted to have a book that siblings can relate to.
[00:02:24] Carole: You're saying that there was not a lot out there. I have the impression that it's not forgotten, but it's one of those relationships where you pay so much attention to one child that the phenomenon of what goes on with the siblings is sort of lost because you're spending so much time with the sibling and that doesn't get a lot of attention.
[00:02:44] Kylainah: Exactly. And we feel, we feel alone a lot of times in our life, but we know we had to step back because our siblings need our parents' attention 24/7, and we're okay with that. But we're also, I think deep down, for me anyways, I felt super alone and not knowing how to navigate my life in the world of special needs.
And I know as a sibling, our siblings need to have our parents' attention. It's 24/7 in order to survive. And as a sibling too, we want that for our sibling.
[00:03:23] Carole: What is that, that deep desire for you that you wish for your sibling?
[00:03:30] Kylainah: I wish people would see her the way I see her. I want her to have protection and love and, and I want to make sure she's safe. 'Cause I've always wanted my sister to be safe in every situation. That has been my family's number one priority is making sure my sister's safe.
[00:03:54] Carole: And when you say safe, what exactly do you mean?
[00:03:58] Kylainah: So me being a sibling, I have lived in two different worlds. It has always felt like I've had one foot in the world of special needs and one foot in the worlds of where the rest of my peers were, and I have seen everything. I have seen all the comments that my peers have said that are not in our world of special needs. I've heard all the judgment. I've heard rude comments saying, oh, let's park in the handicap parking spot and let's pretend we're disabled and so we can park closer to the door.
I've heard multiple things like that where like, that's not okay. So I feel like my whole life I've been wanting to protect my sister from that judgment and kind of shield her. But that's also being a big sister too, right? So, just like anyone would be with their siblings, right?
[00:04:52] Carole: Right. Like there's no difference in your emotions if someone's making fun of your sister, whether she's exactly neurotypical or not.
[00:04:58] Kylainah: Exactly. Mm-hmm. Yeah.
[00:05:00] Carole: So what, what are some of the things that you've heard, some of the ugly things.
[00:05:05] Kylainah: The R word. Definitely that, but that's also not, that was not based around my sister, obviously. That was where like, let's say an example of people would say, oh, that person's...using the R word. And and then they say, then they look at me and then they go, guys, we shouldn't say that. That's actually really rude.
And then, but look at me and say that they shouldn't use that word. I'm thinking, are you saying, are you giving me a signal that you're thinking of my sister that way? There's a whole chapter on staring in my book and how that really affects my sister and also our family and how there's a difference between are you staring out of judgment or curiosity, or are you staring and then walking away?
Or instead of, are you staring and then smiling and saying hello and making my sister feel like she belongs here. Are you acknowledging her and being kind because that makes her feel good that she's acknowledged and that she's a human just like everyone else is. And that, yeah, that's how I really feel about it.
[00:06:25] Carole: I know that I know what the R word is, and I find myself sometimes saying it derogatorily for reasons that have nothing to do with real people. But I know it's not, it's not good and I slap myself, but for the audience, I don't wanna say that word because I really try not to say it. And clearly you don't like to say that word.
[00:06:43] Kylainah: Yeah.
[00:06:43] Carole: But just for the sake of education right now, can you say what is that R word and what implications does that have for you?
[00:06:51] Kylainah: Yes. The R word means retarded and my whole family has decided to completely cut out that word in our dictionary. Like we do not say that anymore, but like, I mean, I'm saying that society today, yes, sometimes that word slips out, that is normal.
We're guilty of that too. But there's a difference between using that word also in like directly to the special needs person or, or say, like making a joke about them, or there's a joke about just something stupid. But in saying that they still should not, this word should still not be used because back in the day that word was really normal.
That word was a huge word to describe someone who is disabled or someone who has special needs because they are unable. So that is a really big thing of why this word society today really should delete that word. Like, and it's still in the dictionary today describing that.
[00:08:11] Carole: How would you describe your sister to me? Like and our audience? Just paint a picture for us.
[00:08:16] Kylainah: Every time I talk about my sister, I actually start crying, so I really hope I don't. My sister is small, but she has a huge personality for sure. She's the class clown. She can walk into a room and light up the entire room, like light up everyone. The space is brighter when she's in it.
She's just such a happy human being. She's just, she's accepting of everyone and everything, and she loves to make sure that everyone is heard and that she sees them. Her main focus is that she tells 'em that she loves them, but I mean, at the same time, if she can feel, if someone is kind of, doesn't know how to navigate her, or know how to talk to her, she will ignore you, just like you are ignoring her. She will do it back to you.
She understands, she gets you. She understands mean words. If you tell her to not do something, she'll scream at you and tell you that she's mad at you and she has so much emotions and she's, yeah, she's just a really happy human being and I love her so much.
[00:09:36] Carole: That's beautiful. Tell me, what words have you seen and which words still make you uncomfortable and which words make you okay?
[00:09:44] Kylainah: Well, there's not really words in particular. It's just really the word retarded is a big one, but also, I mean, this isn't really a word, but when people ask about, let's say my sister's diagnosis or something, or ask what's wrong with her, and they say, oh, I'm so sorry.
Like, that just needs to never come out of someone's mouth when you say that because this is our life and we're not sorry about it. It's not something to be sorry about. It's just what the universe or God has given us. Because they knew, they knew my family was gonna give my sister the best life that that we could.
So let's see if I could think about any other words. Maybe like stupid or slow. Slow is a big one.
[00:10:36] Carole: Tell me about that.
[00:10:37] Kylainah: Slow, to me, just feels like unable and just not fast reaction. Like, I don't know. It's really complicated how to describe words when it comes to how people wanna use them. I don't know in what example would be how they use slow and is it towards my sister? I really feel like it's unable to do something and she's slow or slow minded, or like physically slow. Any of those things, I feel like it basically feels like the word retarded. It just means stupid.
[00:11:26] Carole: I wanted to also talk about words that I have heard and just listen to what you feel about them. Special needs. A child with special needs.
[00:11:36] Kylainah: Yeah.
[00:11:36] Carole: That's okay.
[00:11:38] Kylainah: I talk about this in my book and it's probably the disclaimer and I talk about how there's different words for special needs, and also everyone's different. Everyone has a different way that they want to describe their child or their sibling or whatever. And there's also special needs, disabled, disability, and differently abled. Those are the ones that my family uses. We normally say special needs, but there's also persons with a disability and/or persons with diverse needs, children with diverse abilities, et cetera. So there's so many out there.
[00:12:16] Carole: Thank you. Because that's really helpful to have a vocabulary. To continue to paint a picture of your sister, now we know she has a disability. I guess you could also say she's neurodiverse, is that appropriate?
[00:12:32] Kylainah: Yeah, she has GRIN2B, it's a rare genetic disorder that basically affects her speech and her ability to walk. She does walk on her own, like she doesn't use braces anymore, especially after going to ABM, getting her ABM lessons. And she can walk by herself across the room on her own. But she does get tired physically.
[00:12:56] Carole: You talked about in your book how when she was born, it was a dire diagnosis where you didn't think she would live long, but that that changed. Did the diagnosis stay the same and just the prognosis change, or was it the wrong diagnosis?
[00:13:10] Kylainah: The doctors had no idea what she had. They thought at the beginning they said that she was a lazy baby, which I don't understand that one. And then it started changing and they thought she had muscular dystrophy. She did not have that.
And then she got diagnosed with GRIN2B, and apparently at the beginning she was like maybe seven in the whole world. So something like that. I don't know the backstory exactly, but that's what I heard from my parents. But back then, I didn't know any of that. I just knew that something was wrong with my sister.
[00:13:47] Carole: It sounds like it's a rare genetic disorder and even if it wasn't, everyone's different as I understand it when they have these diagnoses. But is there a group that you're affiliated with, with other families that have children with this diagnosis?
[00:14:01] Kylainah: Actually, I don't know if there's anyone in our hometown that has it. So I know it's starting to get, there's more people out there in the world that has it. But in this area, my sister's involved in a lot of Special Olympics stuff and a lot of school activities in our class, but we're not in any groups actually. We're kind of more on our own.
[00:14:27] Carole: And how does that feel to you guys?
[00:14:29] Kylainah: Sometimes I feel a little alone, but especially for me 'cause I don't really have other siblings to relate to either. But I also felt like I didn't have that my entire life. So I mean, it doesn't feel any different now. But with my parents, my mom is active and does talk with other parents, especially when my sister is out bowling or dance or whatever, all those, all these activities, she talks to the mothers, so it feels kind of like a support group. It's all mothers coming together, talking and suggesting ideas.
So in some aspects it does feel a little lonely, but in other ways, it does feel like the community that we live in today is so, so supportive with special needs. So, it has been a really great thing for our family.
[00:15:18] Carole: That's great to hear. Why don't you tell us, 'cause this came up in the book and I think it's really important that people hear these words considered mental illness or whatever. I mean, now we've talked about words, they have such loaded connotations, but just mental illness is also very taboo.
It's getting less taboo as people talk about it more. I have an episode where I've talked to a parent of a child with OCD and the child herself, who's a teenager, and I learned so much and I think that yeah, it's really valuable for you to talk about your own struggles with your mental health, as much as you feel comfortable.
[00:15:59] Kylainah: Yeah, mental health is a huge topic. It's been in my life since I was in grade seven, so I would've been maybe 13, 14. So yeah, it's super confusing for a child to go through that, and I'm still going through it today, and especially releasing my book has been super stressful. And I, yeah, I suffer from OCD, really bad.
Some points are good. Sometimes, I feel so much relief, I don't need to do it. Like, I'm fine, and then all of a sudden, I get anxious. My heart beats really fast and I feel like I have to excessively touch things or I had to move things around again and there's sometimes I feel so uncomfortable within myself, I had to rip my clothes off and change again.
So it's certain things, depends on where I am. Really, mental health affects your everyday life. If sometimes it feels like I just wasted an entire day feeling so drained from my OCD habits or my anxieties. Sometimes I get depressed from it and I feel like I just wanna lay in my bed all day.
So it's really hard to navigate OCD, especially though because it feels like you feel crazy. You're scared that people don't get it, and that they think you are crazy. So then you think you're crazy and then you feel overwhelmed from that emotion on top of it. So when you're trying to ask for help, for me, I didn't know how to ask for help.
And my mom actually said, you know what, let's go to neurofeedback sessions. And they started to help me a lot. And I also, when I went to ABM to get lessons, that also helped me relieve my nervous system. And I still have OCD tendencies and my anxieties, but they have started to be less chaotic, if that makes sense.
[00:18:08] Carole: One thing I learned, you know, and it goes for everything, you know, that everybody's diagnosis has different manifestations, right? So can you tell us for you, because for the kids out there that are hearing it and then they can feel less alone, can you share with us before you were feeling better now, you know, I understand it doesn't happen all the time, but when you, when you're at your worst, what is OCD for you?
[00:18:31] Kylainah: OCD feels like if I don't do something, something bad is gonna happen to my family or some, or a situation is gonna happen when I don't want it to happen, and it feels like I'm stuck in a loop and I continuously feel like that that feeling is real and I have to do something until I'm satisfied. And if I'm not satisfied, I will literally keep doing it over and over and over again, and I can't get out of it until someone literally comes over to me and gives me a hug and says, I'm okay.
Like one time it was so bad that I was ripping my pants off, I think 10 times, and I was so anxious, I was actually contemplating to just leave my pants off and then I had to sit there and I had to start breathing and remind myself like, no, you're okay. Like you, it's you, I understand you, I hear you.
But nothing, nothing is gonna change if you just keep, like, keep your pants on. Like it's fine. Like it's just pants. And I feel like sometimes that does work, but then there's some times it's so bad that you still, you still don't believe yourself.
And you're still thinking, oh my gosh, something bad's gonna happen. Oh my gosh. But then I also noticed for me, once I was truly happy in where I was in my life, that anxieties didn't come up and I was completely fine. Like I had no OCD, I had no depression, I had absolutely no anxieties, and I was just living my life day by day.
So it maybe also depends on the season. I don't know, but it's just, yeah, mental health is hard and it's different for everyone. It's not the same.
[00:20:33] Carole: When you said that you'll do something over and over again because you're afraid of what might happen, I think you gave the example something might happen to your parents. How does that relate? Or maybe doesn't, maybe that's a different example, to wanting to take your pants off?
[00:20:47] Kylainah: So, I really look at it this way where something bad's gonna happen to my parents that I would be alone. It's, it always goes back to you're gonna be alone, you're gonna be alone, you're gonna be alone.
And I don't know if that's something to do with being a sibling or something or if it's just something in my past made me feel like if I don't have people, then I'm gonna be alone. And that feeling triggers my OCD to start happening. I don't even really know how to describe it. It's so personal, yet I really, not everyone talks about that in particular, and I feel like I know people do today struggle with that.
That's a normal thing for some people. I've actually had conversations with people that have said the exact same thing I have said, and that their anxiety stems from I'm gonna be alone and something bad's gonna happen. And so I know for a fact that I'm not the only one that thinks that way. And realizing that and hearing that made me feel a little like I'm, I'm okay. Like I'm not alone.
[00:22:00] Carole: That's good to hear because that's why I, you know, I'm prodding into your private life here. 'Cause I think you're gonna help other people by sharing. So are you saying, I just wanna see if I understand, so that the taking off the pants, let's say, like that impulsive need that to the outside world makes no sense, or, and even to you, like, you know, you're, you know, it's not the most prudent thing to do, but you're doing it because you have voices telling you or whatever, feelings that you need to do it. Is that stemming from deep down, that fear of being alone like that, that that triggers you to do that action?
[00:22:35] Kylainah: Yeah, I, that's the part where it's, I don't know how to explain that. I just take something and I just, that's I take my fear and I put it into just a physical thing. So it even be like I'm reading a book and I'm reading the same page over and over again until I'm satisfied to turn over the next page.
Sometimes, I would tap my feet before I'd go into bed. Little things like that. And it doesn't mean it's a, like it doesn't mean I had to do it 10 times. Sometimes it could be four, sometimes it could be six. I found myself counting really helps me. And also I also noticed that breathing, there's a triangle breath breathing technique you do where you breathe in for five, you hold it for five, and then you breathe out for five and then you hold it for five. Certain stuff like that. I also found that yoga really helps me and being in that, that zen state, it just calms me down.
[00:23:36] Carole: Would you say that these OCD moments, times of depression, anxiety, that that is not necessarily because you have a sister? But that the fact that you have a sister who has special needs, it's a stressor. So it's part of it, but it's not the end all be all. Like, so you could have still been a child that's just very sensitive and, and prone to having.
[00:23:58] Kylainah: Yeah, I'm not really sure. I wonder if I would've still had it if I didn't have my sister. And maybe it's just something my, like I had to go through in this lifetime. Like it's something that it was, I had to go through mental health to figure out how to help others. Ever since I was a kid, I would do presentations about mental health to bring out more awareness of mental health. 'Cause it is such a serious thing and it really does affect how you live. It affects, sometimes it wastes a whole day just by overthinking and that is physically draining and exhausting. And I think for the longest time, I felt super alone in it. And I don't want that for other people.
[00:24:48] Carole: I know you're still young and exploring, I suppose, you know? Do you have a dream profession?
[00:24:55] Kylainah: Not really at the moment. I've been kind of going through a lot of stuff. I went to school to be an ABM practitioner. Funny enough, when I turned 22, I had like a midlife crisis, even though I'm not midway through my life and I ended up buying yoga training program to do 500 hours. And then I started writing my book. So it's kind of like a mixture of stuff.
[00:25:23] Carole: Yeah, yeah.
[00:25:24] Kylainah: Yeah. Still learning. I'm still young.
[00:25:26] Carole: Yeah, you're super young. And yeah. I wanted you to explain to my audience what is ABM? 'Cause I think that's the one thing that, you know, people know yoga, but I know it's not easy to explain, but.
[00:25:38] Kylainah: It is not easy.
[00:25:39] Carole: But just good to try. Let's see what happens.
[00:25:42] Kylainah: I wanna say it's scientifically based. So like for me, it's a way to connect with the brain through movement. Maybe I might leave it at that.
[00:25:52] Carole: You did great. Has your sister also done ABM lessons?
[00:25:56] Kylainah: Yes, she has. And we've seen a lot of improvements. There were many times that she was totally just taking it in. She doesn't wear leg braces anymore. We actually noticed that because she's not wearing leg braces anymore, her feet are actually growing. They stopped growing for the longest time.
And also we are noticing too, because of ABM, her balance on her feet, like she's standing on like the four balls on your feet, like she's completely flat. Before when she was a baby, her feet would like turn inwards. And now she doesn't do that anymore.
So even if it's little mini changes and you're noticing them, it's still, that's really big for our family and for my sister. And they do, they have big improvements on her life. Yeah. She's walking without a walker and a wheelchair. And you can tell she's more balanced. She's more her. Yeah.
[00:26:51] Carole: That's so interesting because I wanted my listeners to hear from different people who've gone through the experiences, what's worked and what hasn't worked. Because oftentimes physicians and therapists, they don't, they don't know all that's out there. But parents and siblings will go the extra mile to find things that work and then they'll stop things that don't work. So.
[00:27:13] Kylainah: Yeah, and I mean, for other families too, it could be different. Like for our family, the typical therapists or like getting a therapy session didn't work for her. And then until she went to get ABM lessons and we were noticing that that was working for her. Like with the normal therapy sessions, she would scream a lot. And then with the ABM sessions, she was in a calm state and you could tell her eyes get really glossy and big, like she's focusing like she could feel what the practitioners were doing on her. And that made her aware of her body.
[00:27:51] Carole: In your book, you spoke a lot about your experience in the classroom and how your teachers did certain things, and you pointed out how, eh, maybe that wasn't the best way to handle you.
[00:28:03] Kylainah: School played a huge part in my life and having my sister there was, I was so excited, like I saw all the, my other friends have their siblings there and I always looked up to them 'cause like, oh my gosh, like, I can go on the same bus with you now and I can walk with you to school, or I can like go to your classroom to say hi to you. And I wanted to be a lunchroom helper and I just wanted to be there with her, even though I was learning my own own schoolwork in my own classroom, but I still wanted to be there to protect my sister, just like any other sibling would do.
And there were some, there were some situations that just maybe weren't handled or looked at, and in my sister's perspective, and it was just directly for me and making sure that I have a separate identity away from my sister. And it wasn't, it didn't necessarily feel like my sister was being thought of.
And with our life, it can't be that way. Like it, especially as a sibling where we're, I'm not necessarily trying to take over my, or take my parents' role, but we're there as my sister's protector and so am I. There were certain situations, especially. It's hard to talk about this part.
[00:29:25] Carole: You comfortable just reading a section from your book?
[00:29:29] Kylainah: Yeah, maybe. Yeah, let's see what I have. As a child, all I ever wanted was to be like everyone else, to have the chance to go to school with my sibling, to play together with our friends at the same school. Even the little moments of walking to school and back together each day. In all honesty, I never thought this would be possible.
She needed so much extra support and only certain schools were capable enough to provide it. I couldn't make sense of why they were moderating my interaction with her. Even if it was for her best intentions or maybe for mine, it didn't mean this was handled the right way, the way that considered what my sister would need.
After my mother shared this with me, I finally realized why the teachers were trying to prevent me from seeing my sister, but it was only their opinions. It wasn't even the truth. I wondered if my teachers were even considering my sister's feelings and wellbeing during these discussions.
They didn't even allow enough time for us to be together in the same school to explore if they were right about their conclusions or just harming us in the process. As it turns out, I only had one year with my sister. The principal convinced my parents in sending her to another school, a school that specialized in supporting special needs children will provide more support with her learning and skill development.
My family is my sister's eyes, ears, and voice. She can't come home and verbally have a conversation and tell us about her day, what she learned, what they did, the fun moments she had with her friends, or if someone was mean to her, we wouldn't know. What if the teachers didn't communicate often to my parents, didn't take the time or value the importance of sharing with them? We wouldn't know what was going on throughout her day.
That was why I wanted to be there with her and make it easy to update our family. It wasn't something my parents asked of me, it was just something I wanted to do as an older sibling. Older siblings want to always look out for their younger siblings to make sure they are safe. My sister's my family, and when it comes to family, you look out for one another.
[00:31:40] Carole: Beautiful. Yeah, thank you. I found interesting something you said about you were looking for disability in yourself. And no one explained what disability was. Can you talk about that?
[00:31:53] Kylainah: Yeah, that, that went on for a big portion of my life. I always wondered if people were looking at me and questioning if I may have a disability 'cause I don't know if maybe people would just assume that if one person has a disability, then then the other sibling should have one. I don't know if that's what people were assuming. And so I think the majority of my life, I struggled in school.
I fell behind in school until my mom and I sat down and caught up one summer and I don't know if, maybe I felt because I felt stupid that maybe I felt like maybe something was wrong with me and that maybe I should look for something that's wrong with me, and so I can have a label or someone else is gonna put a label on me. So that, that was super hard for me. I think that maybe too, maybe that's where my mental health started.
[00:32:54] Carole: I noticed that in your book, you have a lot of great quotes. They begin chapters. I felt like your quotes were really part of what you were writing. Like they were, they were as important as your words. Can you talk about your favorite one?
[00:33:10] Kylainah: Yeah. My favorite one was at the beginning of my book. "Even after all this time, the sun never says to the earth, you owe me. Look what happens with a love like that. It lights the whole sky." I'm trying to think of why it resonates with me so much. You're not owing someone, but because we're so grateful for the life that we have been given, we wouldn't ever want to have someone else's life like, you don't need to owe me anything.
Like this life, it's given to us for a reason, and it's my sister that is the glue that cements our entire family together. And if it wasn't for her, life would never feel the same. And we would never, ever trade this life for anyone else's.
This one is in my preface: "my sister and her disability are embedded into fragments of who I am, how I live in this world, how I see the world, and how I feel it because of my unconditional love for her."
[00:34:18] Carole: So that's written by you?
[00:34:20] Kylainah: Yeah. That one was the highlight, I feel like, of my whole book. That one represents my book. Because I feel like I wrote this book to shine a light on the community of special needs, and I feel like a big part of my story is I want people to see my sister the way I see her, and I feel like my book is showing how much I love her and how much I appreciate her and how much I'm so grateful that she is in my life and that she is my sister.
[00:34:57] Carole: What advice would you have to parents or to siblings, to therapists, teachers, friends? I mean, maybe it's like one thing, maybe it's different for each of them. I'll let you decide. What are some things that you feel like they need to hear?
[00:35:12] Kylainah: I think my book teaches society to have empathy for others and don't just think of yourself and think of other people and that people go through way worse things in life than maybe you are going through right now. And be open-minded to people and also that you're not alone and that there's probably so many people or so many other siblings that are going through the same thing that you are going through right now. And that's okay. And also to shine a light on the community of social needs because I feel like a lot of people don't understand and they're seeking for answers.
[00:35:52] Carole: For people that are uncomfortable when they see somebody who's so different or they have a friend who has a relative who is so different, what is some advice that you would give to them?
[00:36:08] Kylainah: I noticed growing up too, like some people don't ask. It's okay to ask a question and ask what's wrong with your sister? That's okay, but be open-minded to making sure to not offend us in a way 'cause we don't necessarily look at our sibling like she has special needs and we wish that you would look at her and not point out right away that she has a disability. Like that's the first thing you see from, or see you look at her and you're like, oh, she has something wrong with her.
[00:36:47] Carole: So what I'm hearing from you is that you've heard people come over and you don't think it's a bad thing, but in a way it sounds like you kind of do. So let's get through this like that, the first question would be, what's wrong? Well, first of all, it sounds like to me you don't, you don't consider anything wrong. This is who she is. So maybe it's not okay to ask that question, but it's okay to ask another kind of question. So what kind of question would you recommend?
[00:37:12] Kylainah: Well, if we're feeling that your question is coming from like you're kind of judging, we feel that. So we're automatically gonna kick off of, that was a rude question. But if we feel that you're coming from like a place of curiosity, but like, you're like, like I love your sister.
Like she's cool, like I just wanna know because I also like being your friend. Like I wanna know your family. There's a difference between that. So I feel like I can't necessarily say they're all bad questions, but it's just, I guess how they communicate it.
[00:37:48] Carole: How you say it. So, I mean, just for myself, like if I, if I saw you at a cafeteria, and I have to admit, you know, like, I think a lot of it, and you talked about in your book, is fear. You know, people, so people to avoid that fear will not ask any questions and we'll just either just stare and leave or just pretend that you're not there. And correct me if I'm wrong, but that's not a great way either, to not interact. So if I was someone who wanted to interact, I sometimes find myself stymied because I'm afraid that anything I say will be interpreted wrong.
I'm thinking, how can I break the ice just to kind of say hi, but I have to be honest with myself and I am curious like, what, or maybe I'm not curious, but I really don't know. I'm afraid that I will be judged by how I say hi.
[00:38:37] Kylainah: Yeah, I feel like, and there, I guess there's also, again, there's a difference between a stranger coming over to say hi or there's a difference between like a friend, but like a friend that's not really close to you, but and kind of a stranger.
So I feel like the stranger, at least if you're staring at the person, just smile. If you don't wanna say anything, just smile. And if you wanna say something, then smile. Say hello. And then if you're a stranger friend, then I feel like, and you're wanting to question, hey, like, how's it going? And you wanna know more answers.
I feel like that can come across as, again, a bit offensive. I don't know. I mean, again, I'm still young and I'm still navigating our world of special needs and I'm still, I'm trying to figure out like what is okay, what's not okay, and what does society do that's not okay or okay. So I really don't really have an answer to that yet.
[00:39:43] Carole: Which is a great answer. No, because I think it's even like I have training and, you know, working with people. I know that I don't think that I'm judgmental. I certainly know not to stare, I wouldn't do that, but I have this, sometimes this urge to kind of push my boundaries for the sake of like, you know, I would do it for someone who looked interesting that could talk and I know how to do that.
But for someone like that, who I'd be just, you know, wanting to interact with, I feel like I don't have the skills that, I don't know if it's the word is skills or you know, just so anyway, this is an ongoing conversation. I think the parents or the siblings and the people going through it have have their opinions.
And then the other people I think, have more fear than anything else, and ignorance. And so it's like, the question is how do you bridge the two that you're, you know, I hate the word politically correct, but you're doing it in a soulful way.
[00:40:38] Kylainah: Yeah.
[00:40:38] Carole: But it is a learning thing I think almost like, it's not, someone could be a very nice person, but do something very rude.
[00:40:46] Kylainah: Exactly. And I think that's the purpose of my book, is to just bring awareness to how you act. Right? And how we look at it like as having my sister with special needs and being a sibling and my parents, how we watch your actions and how it makes us feel.
[00:41:07] Carole: I recommend this book very highly. Again, it's called, You Can Find Me In Her Shadow by Kylainah Zacharcuk. Did I say that right?
[00:41:18] Kylainah: Not even close.
[00:41:19] Carole: Not even close. So let me say that again. You can read the book You Can Find Me in Her Shadow, written by
[00:41:25] Kylainah: Kylainah Zacharcuk.
[00:41:28] Carole: I read it. I loved it. It has so many gems in there. And you can find it on Amazon and it'll be in the show notes. I wanna thank you so much for joining me and opening up and sharing, you know, these subjects that are just beginning, I think for you anyway, to become more clear, less clear, and then more clear. But I think as you probably agree, just talking and figuring out what things mean and why is the first step.
[00:42:00] Kylainah: Yeah. Thank you so much for having me, and thank you for being my first podcast.
[00:42:05] Carole: Yeah, so we're very lucky here on Wisdom Shared. We get to hear your wisdom for the first time, and you certainly shared a lot.
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