Schoolutions - S2 E21: Raising Children with Disabilities: Caregiving & Parenting Are Not the Same - A Conversation with Advocate and Mom, Erin Croyle
[00:00:00] Olivia: I am Olivia Wahl, and I am honored to welcome my guest today, Erin Croyle. Erin is an advocate for disability rights with a wealth of experience under her belt. She served on Alexandria City's Community Service Board and was a member of Alexandria City Public School's Special Education Advisory Committee.
[00:00:35] Olivia: Erin is also a journalist who has worked for National Geographic and Al Jazeera English in Washington, DC, and Kuala Lumpur, Malaysia. In her role as the communications specialist for the Center for Family Involvement, out of Virginia Commonwealth University's Partnership for People with Disabilities, she provides peer support for families affected by disabilities.
[00:00:59] Olivia: If that is not enough already on her plate, Erin serves on Ithaca City School District’s School Board. With that said, it is important to note that all views expressed during this podcast are her own. You must also know that Erin is the mother to three incredible children, Arlo, Emil, and Maya, and her oldest son Arlo has Down syndrome.
[00:01:22] Olivia: Without further ado, welcome Erin. I am so excited to have you as a guest.
[00:01:28] Erin: I'm so happy to be here. Finally.
[00:01:31] Olivia: Finally. It's taken a while, but we're able to connect on this snow day with a full house on both ends. I start every episode by asking my guests who an inspiring educator is from their life. Would you share with listeners?
[00:01:46] Erin: Oh gosh. Yeah. You know you sent that ahead, thank goodness. Because I had to think about it and I can't choose just one. Right?
[00:01:53] Olivia: That's all right. Yeah.
[00:01:55] Erin: Yeah, it's more of what certain educators have done, especially having a child with significant disabilities. There's a special sort of educator that is able to see a student for who they are and sees beyond the disability because that ableist, that implicit bias that's in all of us.
[00:02:13] Erin: It can sometimes really show. Um, and so my oldest Arlo has had teachers who have connected with him so deeply. and that connection has made his experience as a student better. And those connections are just them seeing him for who he is. Seeing him as a person, you know, he has limited expressive language, but they see through that, and they know how to communicate in other ways.
[00:02:37] Erin: Another thing a couple of educators have done this is both a teacher, a special ed teacher, a speech-language pathologist, you know, they have to do the standardized testing. Students with IEPs have to do certain testing in order to maintain the IEP to check levels. It's just all part of the situation. You know, it's the system. And they have taken the time to do that testing, but then take extra time to test him, giving him extra time and the extra things he needs to really see if he's learning. And that is something that, I mean, it has made me cry because they, they clearly see him for a student, and they've been able to give specific examples of him learning just because of them taking literally extra hours out of their days to do that with him. So it's many, many teachers who have done this.
[00:03:27] Olivia: I can't say enough about teachers that think in an asset-based mindset; What are each child's strengths, and how are we going to support them based on those strengths? We need that outlook from all educators. It's really hard sometimes. I'm glad that Arlo, and hopefully your other children as well, have had teachers that think that way.
[00:03:51] Olivia: I needed to have you as a guest, and I've nudged you for, oh my gosh, I think a year now - you're a very, very busy woman. But I've been a huge fan ever since you ran for our local school board. I was able to listen to your beliefs and your values around inclusion, around activism, for disability rights…and I thought my God! I think I texted you the night of the election, and I needed you to know how empowered I felt as a teacher, as a mom to have your voice and perspective on our local school board.
[00:04:30] Olivia: I followed your blogs because it gives me a really good perspective. In November 2019, your blog came out. Caregiving and Parenting Are Not the Same. And I read it, and I thought, yeah, man, never thought of that before because I didn't have to. Fast forward September of 2022, you revisited that same topic with the Back to School Edition, and I started to nudge you.
[00:04:56] Olivia: I would say every month, please be a guest, please be a guest. We're finally connected, and so I want to name the issue that you so eloquently speak to. I'm going to use your words, “My oldest is in middle school. His younger siblings are still in elementary school. The differences in their school experiences and mine as their parent are night and day.”
[00:05:21] Olivia: I'm going to just pause there because families and caregivers, we get stuck in our own world, and we live our own experiences. I don't think we take enough time to think of the greater good and what all families need in a system. I need your voice and perspective so listeners can better understand what the difference is between being a caregiver and a parent to children.
[00:05:51] Olivia: So I'd love to have you defined first for listeners; what is a caregiver in your perspective?
[00:06:00] Erin: Oh, gosh, that's a good question. And you know, for people listening, like you and I can see each other, and I'm tearing up because, um, it is so different. And, um, it's not just me, right? Like the families that I work with and my colleagues. It's like this level of stress that you feel. It's hard to describe, and that's why I write about it, because it, it makes me, verklempt obviously.
[00:06:28] Erin: So I'm going to try to bring myself back a little bit. All parents are caregivers, but when you have a child with more needs, right…with a disability or with emotional needs, there is so much more. There is the regular parenting, and then there is the finding appropriate childcare. There is lining up teachers.
[00:06:53] Erin: When you're caregiving, I make a resume for my son every year, right? So the teachers know who he is because of his limited expressive language. They can get a view of who he is. It's this constant paperwork. You've got the medical component, which depending on medical complexities, it can be a lot. And for my son, it is a lot.
[00:07:16] Erin: But we have friends who it's that much more, right? It's total care. So it's constantly looking at his needs and making sure others understand it. Caregiving is having a 12-year-old who can't walk to and from school by himself, who can't be home alone. And it's this funny thing where at this age, you're left behind in some ways as a caregiver because all of my peers who have kids similar ages can just be like, yeah, I can go for a walk now.
[00:07:50] Erin: The kids can do this, and I can't leave. Right. That's caregiving. And then, when you look at school, it's this double-edged sword. We have amazing schools and amazing inclusion here in Ithaca, but it's a lot of work and so the schools put a lot of work into it.
[00:08:09] Erin: But as a caregiver trying to get your child the best education they need, it is a collaborative process. It is constant emails. It is staying on top of his schoolwork. It is meetings; it is IEP meetings. It's being in touch with teachers. Imagine like I go into school, and all these teachers know who I am, and it hurts because I don't know all of their names because Arlo's not able to tell me. And they're amazing, and I want to know all of them.
[00:08:38] Olivia: And the reason I think it's important to define caregiver is because it's used now all the time. There was a shift from the term family and so to be more inclusive, let's open up to caregiver. I pause there, because I don't see everyone as a caregiver in the way that you are a caregiver to Arlo. It's a whole new level of demand on the adult in this situation.
[00:09:06] Olivia: Or adults, if you're lucky enough to have a partner. Something you speak to is, why does this matter? You actually say, “…acknowledging how different and challenging the parent/ caregiver role is important because it can consume us without realizing it. We love our children so deeply that the lengths we go to ensure their comfort become our new normal, but our norm is not the norm. That's why recognizing and honoring caregivers is so important. We love our children unconditionally, and we'll do anything for them, but part of that needs to be loving ourselves too.”
[00:09:42] Erin: Mm.
[00:09:43] Olivia: And I want listeners to understand, part of the call to action in this conversation is not just for children, it's caring for the caregivers.
[00:09:54] Olivia: So I want to think about that as we continue and just shine a light on you, Erin. Because you are an incredible human, and how you juggle being Arlo's caregiver, a mom to your other children, a partner, a mentor, an advocate. How have these roles shifted as Arlo has gotten older?
[00:10:19] Erin: Oh gosh. So there's a lot here. One, I want to go back to the caregiver piece, and you're right, we do call everyone caregivers now, and that's an equity thing because not everyone has a parent. Not everyone has a grandparent, so we do use caregiver. But yes, there is a difference between caring for someone with complex medical and emotional needs.
[00:10:40] Erin: And so why do I do what I do and how do I do what I do? I don't know particularly how I do it. I'm hanging on by a thread, and I think a lot of us are, especially women, I take the world on our shoulders and we feel it. I come from a background where I am a journalist, and so I just absorb everything, and I throw myself into things, and that's part of why I wanted to go into journalism because I'm so interested in so many things.
[00:11:10] Erin: And you can immerse yourself in that as you're researching a certain piece. Okay. And so then all of a sudden, 2010, my son comes and all of a sudden there's a Down syndrome diagnosis. And in this world, we talk a lot about diversity and equity, and inclusion. In my world, disability is included in that, but it's not really included generally speaking.
[00:11:37] Erin: We talk about DEI, but disability is still that ugly stepchild that's left behind. And oh, God forbid if the intersectionality of that hits where you are African American, and you have a disability, or English is not your first language, and you have a disability. So Arlo comes into my life.
[00:11:58] Erin: I transition out of journalism because you cannot be a television producer and have a child with a lot of needs. So I transition out, and I take some time off, but I can't sit still. And because of the ableism in our society, it was a little bit traumatizing. And so, as I'm coming to, my son was the first person I met with Down syndrome. And so, I'm just treating this as my latest project. Like, what am I learning? I'm learning all of these things, and I'm learning about all these inequities, and I'm seeing his path just because of this diagnosis is completely different from so many people. And then I'm learning stories about my peers who also have children with disabilities, who have had doctors tell them to abort the child.
[00:12:48] Erin: A of friend of mine, the doctor said, let your child die because of his significant disabilities after he was born. I mean, just the bias out there everywhere. And so, without really thinking, I just dove in. I started going to conferences, and I started to go to any event I could. I started reading.
[00:13:04] Erin: I started networking. My son was in Early Intervention, and I started working with Early Interventionists to help spread the word about E.I., and then I ended up at the ARC of Virginia doing communications and advocacy work. And now here I am. And I guess it's just I can't help myself to my own detriment in some ways.
[00:13:24] Erin: I just, I see the power in numbers. I see fellow advocates, and I just want to jump in. And of course, I have some level of privilege, right? I have education. I have a partner who allows flexibility with my work. I don't have a huge network of family nearby, but I have really good friends, and New York State has really good services for people with disabilities. So there are some of those things.
[00:13:51] Erin: I just saw the need, and I wanted to do something, and you cannot change anything without doing the work.
[00:13:57] Olivia: And I know you have a role as well. I've mentioned in your intro at the Center for Family Involvement. You alluded to that you use writing to get your feelings out and your thoughts. Who is the audience you're hoping to reach through your blogging with the Center for Family Involvement?
[00:14:15] Erin: I'm the Communication Specialist for the Center for Family Involvement. With that, we try to reach families who have loved ones with disabilities. We provide emotional and informational support, and so a lot of that is the way we communicate is constantly evolving. There's social media, but that's evolving.
[00:14:33] Erin: One minute, Twitter's out; one minute, it's in. It's analyzing those things and recognizing how to reach people. Some people are heavily into social media. Some people still use newsletters. My job is to just make sure we reach families. We have cultural brokers who work directly with African-American communities, Asian populations, deaf and hard of hearing, Latinx communities, refugee communities.
[00:14:58] Erin: We recognize that each community might need different ways of reaching, and we work very hard with that. Sometimes it might be a billboard; sometimes, it's a newsletter. Sometimes it's a TikTok campaign, and so the work I do is that, and it's making sure we're getting them the information they need and letting them know that they have someone there that they can talk to because it is very lonely parenting a child with a disability. You're very much alone, and when you have a child with a disability, it is so hard to do other things because it's, there's so much work involved.
[00:15:35] Erin: That there's no time for hobbies. There's no time for going out. Self-care is a joke. It, it's necessary, but it's just not really possible. So the work I do, it's important to let people know that they're not alone. And the writing I do, I have so much inside of me; there’s just not enough time to let it all out.
[00:15:53] Erin: I pour my soul into it, so people understand that they're not alone in those feelings. They're not alone and feeling lost. They're not alone in anger. They're not alone in frustration. So much of what we see out there is inspiration porn, and it is exhausting. I don't want that. I want people to know that the real deal is that this is hard.
[00:16:14] Olivia: That's a perfect segue into how caregiving and parenting are different when it comes to really specific parts of our life with children. I'm going to name it. You describe it, and then we'll shift to another. And so, let's start. Caregiving versus parenting when it comes to sickness, diagnostics, doctor's visits help us understand.
[00:16:37] Erin: Parenting a child, it's well visits, it's sick visits. That's pretty much it. Caregiving a child who's medically complex. It is a team of specialists. It is constant contact. It is making sure you're in touch on My Chart. It is advocating with doctors. It's sharing your own research because often you know more than doctors do. It is really developing relationships with medical teams.
[00:17:05] Erin: It is traveling hours to see the right doctor. It is dealing with knowing in the future that once your child is a certain age, you're going to have to figure out how to have that relationship with doctors but also give your child autonomy. And it's really complex of how do you let them answer. But how do you let doctors know? Caregiving is constantly helping your child with self-determination and balancing stepping away and giving them a voice.
[00:17:35] Erin: This is work and visual schedules and social stories ahead of visits to prep them and emailing doctors ahead of visits to let them know it's well visits that are twice a year instead of once. So you can stay on top of things. It's going back to doctors because they can't get your child to take the eyedrops or see the dentist, so you're doing some appointments twice.
[00:17:58] Erin: It's taking time off work to drive hours for those appointments. It is often sacrificing a career because you have to be a caregiver.
[00:18:07] Olivia: It is a lot, and I'm looking out the window, and it is a gorgeous winter day, snow everywhere, and yet I'm dreaming of having my toes in the sand being on vacation, and often vacations bring copious amounts of joy to families. Yet what is planning a vacation like as a caregiver, and how is it different?
[00:18:30] Erin: So as a caregiver, and this is depending on who you're caregiving for, but you're looking at accessibility, you're looking at sensory needs, you're looking at can you bring the medications you need to? In some cases, can the child even travel? Right? It takes above and beyond to get on an airplane. If you are using a wheelchair, if you have medical equipment, it is a car full of stuff to prepare for what ifs.
[00:18:57] Erin: It's checking ahead to see what doctors are nearby. It's calling specialists to see if this is okay. It's literally scouting locations, looking at locks. In our situation, it's bringing alarms for doors because of elopement issues. Sometimes it is so stressful. It is just easier to stay home. I mean, that's what you're looking at.
[00:19:19] Erin: And then the added element, when you're thinking of vacations, again, goes to the expense of caregiving. Sometimes there's not money left over. Sometimes in my situation, there's no time for vacation because all that vacation time is spent on seeing doctors out of state.
[00:19:37] Olivia: And I have to ask you a question, and it's something that just occurred to me. You have two other children. So how do you go about as a mom, and I'm sure it's a constant evolution in talking to them about what you may not be able to do as a whole family because of Arlo's needs?
[00:20:00] Erin: Yeah. You know, it's interesting because the beautiful thing about siblings is that they're born with a brother with a disability. So that ableism that I have because there was no one with a disability in my life until I was an adult. They don't have; it’s shattered. And that's pretty beautiful. And there, there's this natural empathy that my 10-year-old has.
[00:20:21] Erin: It's not so much the big trips. It is the day-to-day. Like, why can't we do certain things? They can't be left home alone because they're too young, but they're brother. Um, here's a good example. We were out going visiting a cute little town, and Arlo just couldn’t do it. I don't know why, but sometimes he just refuses, and he's 12, and I don't restrain him.
[00:20:46] Erin: I tried to stop him and say, Hey, let's hang out. He refused. He wanted to go home. He literally just went to the car, and so we had to stop the trip. Our family's whole dynamic is different because of that, because of the things that the siblings face. It's funny. Family members look at us, and they think either so and so's spoiled or we don't say no enough.
[00:21:10] Erin: And it's because you have to completely rework what you do because it's not fair to have one sibling not hear no because no doesn't work. And then none here no about anything. We just take a completely different approach to it, and sometimes it's winging it, and sometimes it's hard, and sometimes there's tears, and sometimes they get to watch movies when I would rather not because they deserve it.
[00:21:34] Olivia: And that's so real. Just being an adult is hard enough, but trying to navigate life as a child and see other people and their needs, I think it's a big ask. It's a big ask. I'm going to throw something else at you. Planning for the beginning of school year, what does that involve for you as a mom?
[00:21:55] Erin: Um, it starts the year before. It starts in the spring. I call the spring IEP season because you're prepping in advance. It is extreme worry because you have a set of teachers, and if you love them the next year, who knows what's going to happen, right? Because every team is different. And success on the child changes based on the team.
[00:22:19] Erin: So it's prepping in advance. It's talking to the school team and making sure that as the baton is passed, I mean, that's a baton of nine different people working closely with my son, not one or two. And then in the summer, it's appreciating some downtime but then looking ahead. Making sure you're in touch with the school. Making sure the principal knows that you'll need to know the teacher in advance.
[00:22:43] Erin: Making sure the teacher knows that it would be useful to be able to bring your child into the classroom before anybody else comes to acclimate them to that, to help with the transition time. Moving to middle school, it was concern about lockers. It was concern about all of those people, new buildings. If you have one-to-one support or TA support, it's making sure they get to know Arlo ahead of time because, again, those relationships are what foster success.
[00:23:13] Erin: That connection is pretty much the most important thing. And then it's updating that resume. It's looking at the IEP. It is scheduling meetings weekly in the beginning because transitions are so hard; you want to be in touch with the school team to know what's working, what doesn't, so you can bounce ideas back and forth.
[00:23:33] Erin: It's supplies. You have to fill the backpack. You want the independence there. But I have done so many visual schedules, and it doesn't matter. I still have to constantly be helping and looking. It's making sure medical stuff's up to date.
[00:23:48] Olivia: Yeah, I think it's important for people to understand that a lot of teachers, summer is sacred time, and it sounds like you really have to be in tune with the school district over the summer to ensure any possibility of success in the beginning of the school year. So it's not waiting until August to get a teacher assignment.
[00:24:08] Olivia: It's a well-oiled machine. It's incredible. Arlo skis, I've seen he enjoys snow. And so, what does that entail for planning for extracurricular or school events?
[00:24:22] Erin: That part's really hard. The skiing, a lot of ski places have adaptive skiing, and uh, and they have a whole team, so thankfully, they have that. Okay. But skiing itself, it is loads of paperwork, right? There's medical paperwork, there’s releases, there are all the things. I mean, it took me three hours to do his skiing paperwork.
[00:24:46] Erin: Um, when you're talking about extracurriculars, it is so much work. And even in, in a school district like Ithaca, that is, is so inclusive. Here's an example. Arlo did something called Dancespirations. He loves dancing. He loves hip hop. It's like, oh, I got to sign him up for this. So in middle school, there are opportunities to do after school clubs, so I signed him up for that one.
[00:25:07] Erin: So that was me signing up, making sure their support was there. I was assured it was, but then, you know, Aides are tapped out, teachers are tapped out. We couldn't find an aide. So actually, an administrator went with Arlo and supported him, and when, yeah, it's amazing. And the,n when they couldn't be there, I was there.
[00:25:26] Erin: But even that. A lot of parents look at after-school activities, and it's like, oh, my kid has something to do, and I don't have to get him until such and such time. That was so special for him, but it was like another part-time job, not just for me, but for the people supporting him that I almost don't want to sign up for it again because it's so much work. Taking the bus, because the bus schedules are so confusing.
[00:25:52] Erin: Just trying to get him on and off with the chance of elopement is so much, it's like, is this worth the time? And then there are struggles as well with behavioral supports because with skiing, with swimming, with things that my son loves, and this happens with other children too. They may love it, but the transition so hard that convincing them to do it can take time.
[00:26:16] Erin: And so he might sit in a car for 40 minutes before he will get out to go skiing, and then he is smiling on the slopes. So it's, I can't even begin to explain how hard it is.
[00:26:31] Olivia: I can't say enough too about your work to ensure inclusivity and least restrictive environment. That's work that you have published that you advocate tirelessly for. Something that is a huge red flag to me, I'm seeing in a lot of school districts, is kids being pulled out for services constantly. Whether it's RTI, whatever the service is, and it's insanely worrisome to me.
[00:27:00] Olivia: So, can you speak to listeners, please? Just make a plea for least restrictive environment and why it's critical for children with disabilities.
[00:27:10] Erin: Oh, absolutely. I mean, this is part of why I do what I do. Right? Because it shouldn't have to be a fight. One pulling children out or putting them in intellectual disability classrooms, I.D., MD self-contained it's segregation. I understand that there's always a but, right? Like some student, I get that, but.
[00:27:33] Erin: Generally speaking, the least restrictive environment is the Gen ed classrooms with supports needed for success. That is beneficial not just for students with disabilities, but there is research. Inclusion is beneficial for all students. Students without disabilities do as well or better with students with disabilities in those classrooms.
[00:27:58] Erin: They bring each other up. The other thing that I can't stress enough is that, so often, you say, oh no, the child needs support. They need special instruction; they need this, they need that. And schools are supposed to prepare us for the future. And it infuriates me that you see kids getting segregated in kindergarten, in elementary school, when the real world is not that.
[00:28:20] Erin: So not only do students with disabilities need to learn how to function and excel in school environments, their non-disabled peers have to understand how to also be with people with disabilities. Our society is so ableist that we are always telling people who are spinning to stop spinning or people who have to blurt or make noise to be quiet.
[00:28:47] Erin: We need to learn to sit in our own discomfort and let people be who they are being instead of having them conform to something. It is critical that we start stopping segregating students with disabilities. That's why co-teaching models are so important. That's why well-trained aids are important. You can't throw someone in a classroom to support a student without training them on how to do that.
[00:29:17] Erin: So often we talk about least restrictive environment, and people say aides are restrictive. Right? I've heard that argument before. What's infuriating about that is if a one-to-one support is used properly and they are trained to help the student succeed, but also help the student how to learn to be independent.
[00:29:38] Erin: That's a win-win that is putting a student on track to be phased out of that one-to-one support to be in a general ed classroom. We don't do enough of that because there's not enough time or money for proper training. And that's where well-trained aides and co-teaching will change our world. And those things as well will benefit all students, not just students with disabilities, right?
[00:29:59] Erin: Students who need more reading support. Students who just learn differently, right? You can be a twice exceptional student but need more support. I mean, Olivia, I could go on and on about that, but I just, I think the one thing to recognize that we see across the country is that it is cheaper to put students in segregated classrooms because you can concentrate the speech therapists, the occupational therapists, the aids, all the things in that one room.
[00:30:26] Olivia: Makes for a really clean schedule, doesn't it, Erin? It, it comes down to minutes in scheduling and a piece of paper, but we're missing the faces of the children that are being othered and that their peers are seeing them removed from that general ed classroom instruction and wondering, where's my friend going three times a day?
[00:30:46] Olivia: I don't get it. It gets to my core every single time I'm in a classroom, and I see it, and I want to pause and say, I don't think it's with malintent. I think people are trying to figure things out. But it has to stop. Pull out intervention. Pull-out-othering, segregating children with needs. It has to stop because it is not what's best for children, period.
[00:31:13] Erin: It's not. It's not. And this is how we're going to stop the cycle by doing this. And I say this a lot; I feel like I do to do this, right? There's going to be chaos at first. Okay? This is the thing we need to be comfortable with it being messy. We need to be comfortable with a little bit of confusion and things not working right away, and you have to have chaos until you can find your way.
[00:31:35] Erin: It's absolutely critical that we just make the mess and then get it together.
[00:31:41] Olivia: Yeah, I agree. And I want to just circle back before we wrap our conversation. You mentioned DEI. For listeners to understand that's diversity, equity, and inclusion. You speak passionately to, “…when we're doing diversity, equity, and inclusion work, we need to think of everyone, parent-teacher organizations, clubs, sports, everyone should consider accessibility that every meeting and for every function: from ski club to chess club to the latest theater production. How can any child who wants to participate do so in a meaningful way automatically? How can everything we do be inclusive and equitable for all? Until that starts to happen, DEI is anything but inclusive.”
[00:32:26] Olivia: Something that is critical for school districts to include is access to meetings via Zoom. I know some people love to meet in person, but if nothing else came out of Covid, it was to be able to have access via Zoom to all of these meetings and sessions. Can you speak to why it's incredibly important for families to have access via Zoom to different meetings when you're involved with the school district?
[00:32:57] Erin: Oh, absolutely. It's equity. I mean, it's the caregiving, right? If you have a child with a disability, if you have socioeconomics and circumstances. There's an advocate in New York City who demonstrates how long it takes to get to a meeting using a wheelchair on the New York subway system. It is an amazing documentary, and it is hours.
[00:33:19] Erin: What would take most people 20 minutes takes him hours, right? There are voices that need to be heard that can't. And you look at boards, you look at legislators, you look at the privilege they have, and we are not getting the right voices. We are not going to have change until those voices can be fully heard, but also be fully participating and have a seat at the table.
[00:33:43] Erin: There's an expression in the disability community: nothing about us without us, right? How can we change things if we don't make things accessible? And it's not, I mean, it's, I see it. I love our PTAs. I see it in our PTAs. They don't know how to do it. They don't know how to make their enrichment programs accessible.
[00:34:02] Erin: As much as I've advocated, their, I don't want to say excuse because I love these people. They're my friends, and they're amazing, and they're putting in their own time. Right? And you know, caregivers don't have time to be on the PTA, so how do we change these? It's finding ways to let those voices be at the table.
[00:34:20] Erin: Really looking at shifting meeting times. Making them on Zoom, coming to communities and providing childcare, things like that. They're not going to change until we really get out there and do the work to have everyone at the table.
[00:34:35] Olivia: Yeah. Nothing about us without us. That's going to stick with me. And Erin, I know we are focusing so much on the challenges of caregiving, but I also need to know what are moments with Arlo that have kept you going?
[00:34:49] Erin: I'm so glad you're asking this because I, I feel like we just focused on all the tough stuff, and the fact is, like, Arlo is a joy to be around. His smile alone lights up a room. He is brilliant and hilarious and just kind and just gives the best hugs you could ever have. Right?
[00:35:11] Erin: And I think the other thing that's important is, it's not Arlo that is the hardship. It's not my child who is the problem. You know, we're looking at medical models that want to fix people, and we're fed that from the second our kid with a disability is born. It's fix, fix, fix with speech therapy and occupational therapy, and you don't get moments to really experience that joy.
[00:35:36] Erin: I mean, so many parents like me are robbed of that. And then you move on to societal models that focus on conformity, and then the school setting is between the two, and all of it goes to separating. You know, the fact is we need the acceptance and understanding, and it's the systems that create the burden.
[00:35:55] Erin: You know, Arlo entering my life has made me a better person. He's enriched my soul. He's made me confront my own ableism and my own bias. I, I like to throw out societal, this and this and this. I don't know who I would've been. I don't know what kind of parent I would've been without Arlo, and I thank the stars every day for him because I wouldn't be here with you.
[00:36:21] Erin: I wouldn't know the people that I know. Um, and I'm just, I'm just so grateful. Like he is amazing. And he's taught me that, you know…he's taught me what the small things are. When we say don't sweat the small stuff, I know what not to sweat anymore. You know, so he, he is just amazing, and his brother and sister are amazing.
[00:36:46] Erin: And the three of them together just, you know, they just, they just make my life whole.
[00:36:53] Olivia: Beautiful. Thank you.
[00:36:56] Erin: Thank you.
[00:36:57] Olivia: Erin, I cannot thank you enough for your time, and I am grateful for you as just a human walking the earth because I think you're an amazing person. I want to just end with your words that I keep close to my heart. “Be kind to your family, to yourself. When everything feels like too much, toss out those arbitrary rules we make. Turn on a screen, order in, ask for help. Step outside and breathe for a moment. Always remember you are not alone.”
[00:37:33] Olivia: And Erin, I'm so glad to not be alone and to walk alongside you. So thank you for everything.
[00:37:39] Erin: Thank you. You're making me tear up again. Thank you.
[00:37:41] Olivia: Yeah, you're an amazing human, and I can't thank you enough, because I think listeners are going to get a lot from hearing your perspective as a mom and caregiver.
[00:37:52] Erin: I hope so.
[00:37:53] Olivia: Yeah. Yeah. Take care, Erin. Thank you.
[00:37:55] Erin: You too.