All Things Sensory by Harkla

Autism Language Mini Series Episode 1: Amber Grant, Parent

April 03, 2023 Rachel Harrington, COTA/L, AC & Jessica Hill, COTA/L
All Things Sensory by Harkla
Autism Language Mini Series Episode 1: Amber Grant, Parent
Show Notes Transcript

April is Autism Acceptance Month. This month, we’re releasing one new episode each week, in addition to our regularly scheduled episodes. These episodes are all about the language surrounding Autism. We had the privilege of interviewing several people for this Mini Series and we’re excited for you to listen in!

Amber Grant is the mother to 2 special needs individuals, a wife, an advocate, and health care advocate. She deeply values authenticity and transparency and gravitates towards growing people. Amber loves chocolate and expensive margaritas, has over 100 pairs of earrings and is a perfume snob. She processes and heals in the outdoors. Amber is not afraid of those who grieve and wants to see more empathy in society. She also advocates and trains churches to be a more equipped environment for those with disabilities.

Find Amber on Instagram @courageoushumans

We’d love to answer your questions on the podcast! Fill out this form -> https://harkla.typeform.com/to/ItWxQNP3

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Rachel:

Hey there, welcome to our autism language mini series. In this series we are going to be discussing the verbiage surrounding autism and how it has changed over the years.

Jessica:

We're interviewing a variety of guests within the autism community, including parents, professionals and autistic adults, in order to better understand their preferences surrounding the way autism is talked about.

Rachel:

We're sharing a new mini episode every Monday throughout April because April is autism acceptance month. We hope you learn something new and enjoy these conversations. Hey there, welcome to our Autism Language Mini Series Episode One, we are chatting with our good friend Amber, who is a parent of an autistic adult at this point.

Jessica:

Yeah, yes, he is. Amber is going to share her opinions, her views on autism, on the autism community, and on the verbiage that we use around autism. Let's jump in and chat with Amber.

Rachel:

I'm Rachel.

Jessica:

And I'm Jessica. And this is all things sensory by Harkla.

Rachel:

We are both certified occupational therapy assistants and together with Harkla. We are on a mission to empower parents, therapists and educators to help raise confident and strong children of all abilities.

Jessica:

On this podcast, we chat about all things sensory diving into special needs occupational therapy, parenting, self care, overall health and wellness and so much more.

Rachel:

We're here to provide raw, honest and fun strategies, ideas and information for parents, therapists and educators as well as other professionals to implement into daily life.

Jessica:

Thank you so much for joining us.

Rachel:

Hi, Amber! How are you today?

Amber:

I am great. Excited to just share a perspective with you guys and do my my best to share Luke's perspective from what I from what I know and what I've learned about him.

Jessica:

We really appreciate you taking the time to do this, because you have quite a busy life.

Amber:

We do. But this is a huge, this is part of my calling, I believe everything has happened for a reason and doors have opened. And I would never want to, I would never want anyone to go through some of the things we have alone or without tools or without support or without empathy. So if I can ever, you know, bring anyone any comfort, or, you know, hope or anything, I just feel like it's my job to do that.

Rachel:

Well, why don't you tell our listeners just a little bit about you and your family and your situation. And then we will jump into our questions.

Amber:

Sure. So my name is Amber. And I've been married to my husband for 22 years. I know I don't look that old. Not at all. No, I got married young. But um, you know, we it's pretty miraculous how it worked out, given the circumstances that we have, honestly, that we have, you know, had to do a lot of work like everything, and to fight for our marriage, to keep going and stay connected, with special needs kids. But I am first and foremost, a mom with two special needs individuals. And I even wrestle with how to explain that. So I'll kind of go into that later when we talk about this, because one of my children is an adult now. And I want to give him dignity and respect when I introduce him. My youngest son is 16 and so he's not exactly little but he's still my baby. So I am, you know, wrestling with some of those things as we change you know, as a family. I'm an advocate, I am an activist, and there is a difference between the two. And I do both. I am very passionate about growth and health in all forms and all areas for myself and for those that I love. I really gravitate towards authentic and transparent people, people that have stronger soul strengths and that want to grow. I am always cheering for the underdogs, the people that have had a lot to overcome. So I love chocolate. I love chocolate. I love expensive margaritas, and I love shoes and I have unfortunately over 100 pair of earrings I counted. So just some little fun facts about me but and I do I'm a I'm a perfume snob and but one of the things I find a lot of healing and I process a lot through the outdoors. So, I find a lot of healing in physical activity, and also being outside so and so does my son, so does our oldest son.

Jessica:

Can you tell us a little bit about your relationship to the autism community?

Amber:

Sure, I mean, just, you know, my role is a mother, I am a mom of a individual with autism, and that just by nature puts you in the autism community, just by the things you have to go through and advocate for, and just the constant learning and education and, you know, the ever changing environment. When my son was diagnosed at two, even around two, I just hit the ground running and I threw myself into research. And I went to conferences, and I raised money to go to Chicago and I met Temple Grandin, and I just, I just wanted to find any way to get my son back, because I had essentially lost him, he changed virtually overnight. But that being said, I knew that he was in there. I knew he had a future. And I was just determined to find answers for him. Because I didn't want this to define his life. So that is, I've just been very involved in. I just always I met I don't know if you guys know who Ivar Lovaas is ,but he is the original person that started ABA, discrete trial, he is... back when people on the spectrum were institutionalized. That was really all that there was he started a research program... and what do you want, buddy? I guess this can't wait. Books. We can go to the bookstore later, okay. But we're only asking one time. Okay, thank you. So I met him, well, I didn't meet him. But I learned about the method, which was discrete trial and ABA. And I got the book and I just dove into research. And I somehow, someway found his wife. And I talked to her and because I was like, I just always knew if I went to the top, if I went to the top, then I wouldn't get all the watered down versions of what my son needed. Does that makes sense?

Rachel:

When did you notice a change in the verbiage surrounding autism so from people with autism or person with autism to an autistic person?

Amber:

I actually honestly feel like it was the other the other way. And I honestly was never I never noticed the way that my son was described. I never really took those labels into account. I just everything was about relationship. Relationship between me and people, between him and people, between me and him. And so I feel like it, because again, this was, let's see he's 21... so this was 19 years ago, and they would a lot of people would say autistic. And I know that I feel like it isn't until it hasn't been until recently in the last like few years that it's if I'm just going to be straight with you that I feel like we're walking, I feel as a mom, which I like to some extent I feel like so many people feel like when they enter into our world, that they have other people in the community making them feel in such a way that they have to walk on eggshells to have relationship and I think if our focus is inclusivity... So his his his obsessive compulsive perseveration stuff, he wants to go to the bookstore and he's a little bit greedy, so we're working on it, because that's just you know, like, he wants two of everything because of his OCD. And we're like, sometimes you don't get two of everything. So we have to work on that. I mean, I want two of everything too, but anyway. So, in a nutshell, I don't feel I think if our goal is inclusivity, and relationships for our children and for people on the spectrum, or those with disabilities, then I think our focus should really be how people are initially entering that, if they have a desire and intentionality and a heart and compassion, but they don't do it exactly right, then we, there has to be grace for that. Because if if our goal is what we want is inclusivity, and love and relationship, and neurodiversity, then we need to just, I feel like in the community, we need to calm down, because I think that it's going to push people away. It's just like positive reinforcement. If people try something, and then they're denied or it's negative, they're not going to try again, they're not going to want to try again, or it's going to be even more cautious the next time, you know, and so I just at least for my husband and I, we don't really worry too much on it. Of course, we feel it, it stings with both of our boys with disabilities that certain people say certain things. But I think that a lot of that comes from, I don't like to say they just don't know, but I think we just aren't still there's a lot of self absorption until you're directly affected by a situation. It's difficult to have empathy, you know, but when you have empathy, then people talk different. You know, someone you cultivate empathy, and people feel and people step into, and they take what what they are hearing from you and put it inside themselves, then I don't know if that makes sense. So I think it's been it's only been the last few years that there's been a change, at least that I've seen, and I've even been, I would say attacked by other moms, on groups on social media, just trying to, you know, I think I get where they're coming from, though, they're advocating for people on the spectrum, in their mind. I just know that my goal is not perfection, my goal is relationship. If that makes sense. So it was recent, I would say the last few years when my son was young, it's just it was autistic, person with autism, I mean, it was all the things but it wasn't such a stressful talking point. It was just, you know, people are just figuring it out. Together, you know.

Jessica:

Okay, makes sense. Now, when other people are referring to your child and talking to your child, do you have a preference on which way they refer to him? As you know, saying your son has autism? Or your son is autistic? Do you have a preference when people are talking about him?

Amber:

I really don't. I don't. My goal is relationship and when I build if that relationship is valuable enough to me, and I can see that Luke is valuable enough to them, then there's room for correction, there's room for education, there's room to cultivate empathy and teach them and they're willing, you know, but I don't really mind I don't think my husband minds. But the biggest one that still still still happens with I feel like older people in the field is mentally retarded. I literally am like, oh, you and me maybe in a back alley right now. Just think we are so far beyond that. Like, are we not and you know, or the one that I hate in the school district because they have a classroom called the severe and profound classroom and I'm just like, wow, that is so heavy. Like what is that saying to people that enter into that classroom or get hired on at that classroom? What is that you know, and I don't want to Candy Coat it either. I want to be authentic and real and real about situations. But I don't know, you guys get what I'm kind of saying. It's just so I don't really mind. I do feel like my perspective is valid. I had to kind of reevaluate when I got I guess you could say attacked online a few times. First thing special needs. Okay, that's a big one. So I will say that people are irritated about the term special needs and I just feel like, or I meet people, parents that are different positions. And when I do advocate work and try to train churches and there's a name tag, and then you put like a little something like a food out, you have to put a food allergy like it's printed so that someone can see it right away. But some parents were really upset, they didn't want anything, put some label and I had no judgment, it's like, you just want to get to where you want to meet a parent where they're at. But at the same time, I think some of these things if you're going along time, there's I think, a part of it that you still haven't grieved as a parent, if you're, if you're kind of trying to suppress that your child has autism. You know what I mean? It's like, Yeah, this is reality, and it is super painful and super challenging. But this is your this is your new, your new journey. So I think that I just, I have compassion for that. But I think that I don't, I'm not bothered. But that term, I guess, bothers a lot of people's "special needs". But I don't really have any other way to kind of, I feel like more gently explain where my children are at, you know, why does everything have to be like an explanation? It's so much simpler to say I have two special needs children. Yeah. Because then what happens? Have a child with autism? Oh, is he high functioning or low functioning? Is he verbal or nonverbal? Is he a genius? I mean, like I have all these... Does he have special skills? And then you have to go down questions. And you're just like, you know, I don't have the energy for this. Every time I introduced my family and my other son that has cerebral palsy. What's that? How did that happen? Does that make sense? It's just so I have two children with special needs. It's just this like, um, people will go oh, because people don't throw around Special Needs lightly. I feel like definitely, yeah, that's true.

Rachel:

Do you feel like Luke has a preference either way? Has he ever inclined how he likes to be referred to or spoken to?

Amber:

I don't think so. I think again, his language is connection, compassion, patience. Like, that's the language you're speaking to him. Your actions to him or your language to him. I don't think he really, from what I can see, cares necessarily what you say if you are trying to figure him out, if you are trying to make a connection with him. He is very sensitive to tone. And I don't just mean tone. Like I've had to learn this recently, in the last probably three, four years with him. I mean, let's all be honest, if we're married, and we have a husband, How many times do we get snotty with our husbands and take a nasty tone? And it's not just like, Oh, could you do the dishes? It's so you didn't think to do the dishes before I got home? You know? There's this like level of like, as women Man... can we just really be praying, you know, those naughty and as my husband just being honest, you know it as he'll say, it tears me down. And that's like, resonates with me and I have watched Luke really picks up on, if you're impatient with him, it's like he feels and knows that like, he's like an inconvenience to you. Or like a like, as a man, as a growing man, he is very sensitive to that tone, that respect and that need to you know what I mean, so even the slightest thing now like, when he spills something, or when he is really being impulsive, and I already told him he could have three cookies and he snuck behind me and then he actually will totally take the hit. It's so funny because I'll be like Luke, and he just doesn't even get it he's like that was so worth it. But cookies is worth it but something that he's made a mistake on, or something he doesn't understand. And if I am in my impatience, or in my when I'm all the pressures of life, and I'm say to him, ook, I mean, just that I can see his countenance just like lockup, you know, and so I've had to do a lot of hard work on my own man parenting in all forms, like what a rode to work on yourself. Yeah, so if that makes sense, I just I so for Luke, I don't think he it matters Exactly. what as how. How are you speaking to him? How are you connecting to him? What are you demonstrating to him? So I don't think that he really... but honestly, truth? I don't know. He can't tell me. So I can't say 100%. I just can see how he acts with people. I can see how he acts those people that talk down to him because he has autism that are yelling at him because they think he's deaf. Not I'm like, he's deaf not or he's he has autism. He's not. But you know, I can see his response to people like that, if that makes sense.

Jessica:

It's such a good point.

Amber:

And he picks up on people's fear to like, if people are nervous and fearful about him. And the ones that really get him are this super intense."Hi, Luke, How you been, buddy?" And just like, and I'm like, again, it's a dude thing. What dude likes to be like, inundated right away when they're like, I tell people don't like, yeah, exactly the intensity. I tell people, I'm like, my husband prefers like, for me to just sit shoulder to shoulder with him. And just like he kind of works up to conversation after a day of work on his own time when he liked like, Luke is the same way. Don't come at him.

Jessica:

I think that's a really good point for a lot of parents to hear. So many of these kids and adults really can read nonverbal language and nonverbal verbal communication really, really well. Probably better than verbal communication.

Amber:

Yeah, I think that on a sidenote a kind of a frustrating thing, I think the thing too, is I feel like my standpoint warrants me giving feedback in a situation because my commitment level to Luke is forever. I'm committed to him. And that validates my position. I'm a caregiver, I'm also his voice. I have learned him, I've put in the time, I've been educated, I'm a Luke expert. So that makes me and it's been through trial and error, like any other kind of education, trial and error. He likes this, he doesn't like this, watching how he responds, watching how he feels, watching his verbal and vocalizations and nonverbal communication and his countenance and his, you know, facial expressions. And anyway, that being said, what I was gonna say is that, what was that again you said, it's important for parents to know....?

Jessica:

To just to remember that our kids and our adults that are similar to Luke oftentimes can understand nonverbal communication much better than verbal communication.

Amber:

He just he shows me that over and over. And I think that he knows the people that are invested in him, he can pick up on that, you know, he can pick up on the people that don't really want to be so I had a really important thought on his behalf.

Rachel:

The next thought is, do you feel like it's necessary to change how people view autism or the verbiage they use when describing it?

Amber:

You mean, as a whole?

Rachel:

As a whole. What do you think is the most important thing when it comes to your work with advocating for autism? Like, what do you think people need to know about it? Do you think we should be spending our time teaching people how to interact with autism? Or you know, how to how to what verbiage to use, like, Do you think that's the most important part, like what do you feel is the most important part when advocating for autism?

Amber:

I think if we look at what we want, as therapists, as

Jessica:

I think that's a great point and a great way to look at educators, as parents, when we look at what we want, I feel like we all want growth, we all want independence, we all want help for these individuals. And if that's our goal, then I feel like those things kind of show themselves. But if our goal is correctness then that's what we should be doing but I in my personal opinion, you just feel and see people, if we have become non verbal communication experts and we read people like I have when I like I can feel and see and discern, people are uncomfortable when you're criticizing them, when they're taking us, it is a really vulnerable thing to confront, and to step into the reality of a special needs individual period, it is a vulnerable, courageous thing, it is uncomfortable. And the thing is, is that in all the things that I whenever I speak, whenever I teach, whenever I train, I am willing to say that, and I had a really hard conversation with my life coach, my counselor, and I was talking about how we just are more isolated, the older the boys have gotten. And it's been really difficult. The reason I love him he's very straightforward. And he's very, it's like, let's get to the, you know, he's, I sought him like, he's my kind of person. But he said, which I believe needs to change. I said, I just feel like, like, we don't get invited to things as adults, like my husband, and I, you know, like, as a couple and our families, as a family, like, we don't get invited to things a lot. We see things happen. And then with, you know, friends that we feel like we've been close to them, we're not invited a lot. And it's got increasingly more over the years, and it's painful, and it's hard. And I just don't understand because me I'm like, willing to look and do and embrace the hard things. But he said Amber, only 20% of the population is growth oriented. It was like such a shocking number. Do we want to be better people? Do we want to do the hard things? Do we want to sit in pain with people? Do we want to be authentic? Do we want to have conversations to make a relationship grow? Or do we want to just avoid and cut off the relationship? Those kinds of things like that's who I am, but only 20% of the population is like that. He's like, so and I'm an idealist. Sucks bad. He's like your idealist personality is always going to be grieved about how it could be, you know? And so in this area, that's what I see is it's like he said, do you think it's easier? Most people, we take the path of least resistance, we pursue pleasure and avoid pain, like that is our human nature. So do you think Amber that people are going to want to hang out with you and their kids are gonna want to hang out with your kids? Do you think? Or do you think they're gonna want to hang out with their kids from football? And family's from football? And do you think they're gonna want to hang out with the families that are easier? That was super painful to hear? But is that true? I think half and half it is true. But that needs to change. Because I think to some extent, it's scary and hard and challenging and vulnerable and uncomfortable to step into the lives of families like ours and individuals like Luke and Matthew. So do we want to make it easier for people by trying to create connection? And trying to overlook things they may not do perfectly? Or do we want to stop them at the gate and maybe give them an aversion to ever trying again? Does that make sense? it and to ask ourselves, when we're talking about anyone, you know, in the special needs community, the autism community, to ask ourselves, what's our goal?

Amber:

What's our goal? And I love Dr. Daniel Amen. Have you guys heard of him? So he's all about brain health. I love him. And he always said, he's like, right? He has this concept, write down your one page miracle, and you write down all these things like the areas of your life, like physical, your health, all these things, your goals. And then everyday you look at it and you say, does that fit every decision you make? Does that fit? And my goal is inclusivity. My goal is victory for my kids. My goal is independence. My goal is for them to have a place in the community, a legitimate real place not a here let's pacify you, let's make you feel better, let's accommodate. No, these are their needs, they're people, they are just as valuable. They have just they have things to contribute. They have gifts and talents. And that's my goal. So I just don't want to turn people off. That being said I'm not always in the mood to cater to people's feelings. Again, I'm 21 year into this and I'm tired of making everyone feel how can I make you feel comfortable with my situation? Sometimes I'm like, let's man up, there's this thing called the internet, we scroll through it for hours and hours on end, there is no way you can't go get educated about some of these things. If you hear a word, go read it, do the work, read a book, I don't know. But you get what I'm saying. Sometimes we are, my husband and I are so tired. It's just like, I don't want to help you feel better about my situation, I want you to have the sole strength, go see a counselor, read a book, do whatever you need to do, because I'm talking about family members to where a family member, my husband's mom, actually, she just really over the years really struggled to connect with Matthew, he's brain damaged, and he's in a wheelchair, and the cares are a lot more. And she's super connected to Luke, and was always extremely obvious. And I'm like, I spent so much time trying to explain Matty and make everything feel and then I just was like, You know what, like, you have to want that. So it's for everyone else to you have to want to connect to these people. And that shines through. So I'm not worried about what people say, or how they speak to Luke. But I am more concerned about how they treat him. So that's a good point.

Jessica:

Thank you so much.

Rachel:

You are wonderful. Your opinions, your perspective is refreshing. And I think so valuable coming from a mom who's been in it, in the thick of it for 21 years, right? So thank you.

Amber:

Sure, no problem, I think I do want to say though, I, I have a strong, I have strong opinions. But my heart always is connection in myself, too. To connect with other families and to connect with individuals with disabilities, I'm always learning and I want people to learn my kids. So when I enter into a situation with a person with a disability or a family, I am coming, I am kind of leaving my stuff on the table and walking into the situation I want to be like, Okay, so maybe they let their kids have certain things or so maybe they haven't made, you know, behavior Intervention a priority, or so maybe they're not giving sensory diets and their kid is, you know, kind of out of their body. And they don't have these tools or whatever every person needs to be loved where they're at. And then when you gain that relationship, they're in a position where they want to know and they can hear and they want to connect. But I wanted to say that because I'm not. I want to learn and if a person with a disability comes to me and says, that sucks that you refer to me that way or I don't, this means more to me when you say this, or please don't do this, I 100% please like, however, I can love someone better, I want to know that. So this is my perspective, I just know that these are our goals. And I just do think that we're so language triggered in society right now. And we're not driven to love and meet people where they're at. And people, that's what people need really a lot right now, especially families and individuals with disabilities, they are running on empty, then most don't get the services they need. And they need connection, and they need to know they belong.

Jessica:

Everything you said is just on point.

Amber:

Thank you. I appreciate you guys. I love, love, love, love all the other stuff because it's just fun to see the knowledge that I've gained and watch you guys give it and share it and just, you know, just the amazing things that Luke has gained and been changed by that you guys are giving to people and you know, sharing with people. Occupational therapy was life altering for Luke. It was life changing for live we did speech therapy for years and because of the way that he has speech apraxia it really didn't go far. I think those issues are more solved with the work we've done with brain health and you know, the things that are really deeply that you know, illness and things like that, but also just the way his brain functions. But OT we made a gain after gain after gain after gain, and it developed relationship and it gave him coping skills and their OT taught me a lot about getting over my own crap. You know, with things I wanted. And each moment there's times like it's like, well here, let's give Um, headphones on like, he's gonna wear headphones, like our own Z. But did that mean my kid was more comfortable in his skin? Yes. So give him the headphones. But then we did listening therapy, we did swinging, we did proprioceptive, we did brushing, we did interactive metronome. I mean, we just over the years, he got the kitchen sink thrown at him. But so much of it has changed him. And now I don't know if you can see, I don't know if you can see this, maybe you can't but out there is his trampoline. And we have this CNC, this huge, huge swing set. It's like 10 or 14 feet high, and it's concreted into the ground. And this is how we don't have to teach him now to regulate himself. You know, but that was a we taught him then but now he regulates himself. He'll go swing, he'll go jump. He sways. I should say sensory wise, emotionally yes we have to walk through that with him, but sensory wise and just a lot of stuff. He has, you know, he's gained so much so you guys are doing amazing work as well. definitely life changing.

Jessica:

Thank you.

Rachel:

I think I remember a video you shared of him swinging like as high as it can possibly go like.

Amber:

I had our pediatrician told me I was like, Do you think he could have done this or something? I don't know because he in the swimming pool and in I will tell you swimming though is his biggest regulation and we don't always have access to that so but I think the pressure the deep pressure, you know of the water is so huge. He just he's a seeker. So there's avoiders and seekers as you guys know, he's always been a seeker. So he's always hopped and tried to ground himself through hopping. He's tactile. He gets completely verbal, you know, vocal stands. He gets completely and utterly quiet when he does tactile. Like he touches rice and he gets there was a corn thing at the fair. Oh, yeah. He lived in there for 45 minutes. Silence. And he just picked them up and would drop them. And it was like I just saw and I was like, Oh, buddy, I just was so happy for him.

Rachel:

You're fabulous. Amber, thank you. You've given us..

Amber:

Thanks for valuing all the moms out there. Yeah, in our position. Yeah, we're doing important work, and it's not seen. So this is my round of applause for all the moms out there if they hear this, but you're doing you're doing a holy work, and you are doing a huge thing. And you may not feel like you're seen, but you are by all of us other warrior moms. We see you.

Rachel:

Thank you again. We will chat soon. Thank you so much for listening to all things sensory by Harkla.

Jessica:

If you want more information on anything mentioned in the show, head over to harkla.co/podcast to get the show notes.

Rachel:

If you have any follow up questions, the best place to ask those is in the comments on the show notes or message us on our Instagram account which is at Harkla underscore family or at all things sensory podcast. If you just search Harkla,you'll find us there.

Jessica:

Like we mentioned before our podcast listeners get 10% off their first order at Harkla. Whether it's for one of our digital courses or one of our sensory swings, the discount code sensory will get you 10% off. That's s e n s o r y

Rachel:

Head to harkla.co/sensory to use that discount code right now.

Jessica:

We are so excited to work together to help create competent kids all over the world. While we make every effort to share correct information we're still learning.

Rachel:

We will double check all of our facts but realize that medicine is a constantly changing science and art.

Jessica:

One doctor or therapist may have a different way of doing things from another.

Rachel:

We are simply present Do our views and opinions on how to address common sensory challenges health related difficulties, and what we have found to be beneficial that will be as evidence based as possible.

Jessica:

By listening to this podcast you agree not to use this podcast as medical advice to treat any medical condition in either yourself or your child.

Rachel:

Consult your child's pediatrician or therapist for any medical issues that he or she

Jessica:

This entire disclaimer also applies to any guests or contributors to the podcast.

Rachel:

Thanks so much for listening