Summer camp sign ups are well underway across the country. Parents and caregivers are scrambling to secure spots so they can work while their children make new friends, learn new skills, and have fun.    It's not so simple for the estimated 17% of children ages 3 through 17 who have one or more developmental disabilities. If a child needs extra support or even the smallest modifications for activities and access, the options become extremely limited and, in some cases, obsolete.    Jessye Cohen-Filipic and Cindy Lui are mothers, advocates, and professionals who have ran into road blocks both getting into and keeping their children in summer camps. They shared details of their struggles with The Odyssey.    Even better - they shared strategies for navigating systems, how advocates can support one another, what needs to be done to create meaningful change, and their hopes for the future.    Listen in and share your summer camp struggles and solutions with us. Perhaps there's a follow up episode in our future ...    The Odyssey: Parenting. Caregiving. Disability.    Need emotional or informational support from a parent who's been through situations similar to your own? The Center for Family Involvement can help. https://centerforfamilyinvolvementblog.org/family-to-family-network/   Check out Cindy Lui's TedX talk!  https://www.youtube.com/watch?v=mr_Fff6ZiXI   Inclusive Camp mentioned in episode: Melwood's Camp Accomplish https://melwood.org/recreation-programs/camp/camp-accomplish/         TRANSCRIPT: Speaker 1 (00:00:07): Welcome to the Odyssey Parenting Caregiving Disability. I'm Erin Croyle, the creator and host. (00:00:19): The Odyssey Podcast explores the unique journey we're sent on when a loved one has a disability. I started down this path more than a decade ago when my first child was born with Down Syndrome. Even though everyone knows what Down Syndrome is, we still don't know that much about it. And as a new parent, I knew absolutely nothing. My journey weaved its way here, working with the Center for Family Involvement at vcu U'S Partnership for people with disabilities. We provide families with emotional and informational support. This podcast does a deep dive into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving, and disability is, while calling out the inequities that our children face, living in a world that still fails to understand and embrace disability. Today we're talking summer camp, that rite of passage, so many kids remember fondly that chance to get away from home and be with your peers, either for the day or overnight. (00:01:22): For many adults, though, summer camp is a necessity. School is out, and we need childcare for many, many weeks because we have to work and pay the bills. Even if families are lucky enough to have someone at home. Summer is this seemingly endless stretch of unconstructed time you have to fill. And even the most patient and seasoned child whisperer needs a break from time to time. The offerings for summer programming in most areas are many, for many children with disabilities, though it's Slim Pickens with sometimes no options, it's a heartbreaking reality that many parents and caregivers face and something both of today's guests understand because they live it too. And so do I. So we're going to get into this. Joining me is mother advocate and psychologist, Jessye Cohen, philippic and mother advocate and social entrepreneur, Cindy Lui. Cindy and Jessye, I'm so happy you're both here. We've talked about this over the years, and now we're able to really kind of tear it apart. I'd like for each of you to share some of the biggest challenges that you face. Uh, Cindy, can we start with you? Speaker 2 (00:02:36): Yeah. Hi everyone. Thanks for having me on. Um, I have to apologize in advance. I'm getting over a little cold zone if I sound a little stuffy. That's what it is. I am also part of the Down Syndrome community, and I have, uh, two children. You know, I think I begin the advocacy advocating for my, my daughter who has Down Syndrome, but recognizing that if she doesn't have equal access and equitable opportunities, it also affects my other child, my son. So specifically to summer camps. Your intro is so, it's so touching and moving, and it's also so painful to recognize that these, the summertime joys are not inclusive or not by design inclusive of, of kids with disabilities. And when it comes to education, for example, we talk about multi-tiered systems of support. It's really not that hard to implement that for summer camp, but I think many camp organizers assume that just allowing a parent to bring an aid is inclusion. And that really doesn't, doesn't really shift the culture or the mindset of the campers of the community integration approach, the holistic child approach. I've honestly decided not to do summer camps anymore. Um, because between the private ones and what's offered at Parks and rec inclusion is still the burden of the parent, and that's really hard. Speaker 1 (00:04:10): Yeah. And you know, we talk about burden here often, and I always wanna clarify, and you said it perfectly, but the burden is never the child. The burden is the societal structures that we're up against. Jessye, how about you? Speaker 3 (00:04:25): Yeah, thanks for having me. And you know, I know we're here to talk about camps and, and I will work hard to focus on that. But as I've said to you many times, right, this blurs, the lines are blurred between all forms of childcare and all forms of recreation. My daughter is nine and a half, and we had our first foray into summer camp when she was five. Again, out of necessity, she was in summer school. And summer school ended at, I think, noon at that point. And we needed something for the afternoons and literally fell apart on day one at the only option we had available to us. And, um, yeah, so, so echoing what Cindy said. So I don't find that there's even sometimes an opportunity for inclusion that, that I bear the burden of, right? So I find some places aren't even open to my bringing an aid, and that's if I can find an aid and pay an aid and re you know, retain someone to work. (00:05:20): But, um, I also have been really struck recently by what I I see as performative inclusion. So camps that specifically talk about being inclusive, and then I listen to their spiel and it says, we're really designed for the kids with a mild classification, or we're a camp for kids with autism who don't have any difficulty regulating their emotions. That speaks volumes to me about what they're looking for and about the ableism inherent in their criteria. And the other piece, I know we'll get into this, um, you know, my, my kid really wants friends. She, she near needs socialization. She needs socialization outside of the academic environment, which is challenging for her. Um, she's desperate to do it, but what I'm finding is as she gets a little bit older, there are camps that are inclusive if I'm willing to travel and pay a lot of money. But they're overnight camps. And I don't know that my child will ever go to an overnight camp, but she certainly can't go to overnight camp before she's had an opportunity to do a day camp. So I'm grateful that those places exist, , but I can't possibly make the leap from zero summer recreation to sending my child to another state overnight. It has been a, a perpetually frustrating experience. Speaker 1 (00:06:43): And Jessye, you you point something out that I, I always think is interesting because there are in some places, camps specifically designed for kids with disabilities and sometimes more significant disabilities. I know that I'm personally, like I have a really hard time with that because that is still segregation. And whenever you design special programming, you're setting everyone up to continue that on, not just the expectations for our own children with disabilities who think like they only belong with kids, quote unquote like them, right? But their non-disabled peers are not then exposed to what people are like outside of the vacuum they're put in too. And if we keep perpetuating that, and if we keep doing this, then what is gonna happen to our workforce? How will we fully include people with disabilities if we start segregating them in summer camp and like we do in our schools with, you know, self-contained classrooms? (00:07:42): But it's more than that part. I, I'm, I imagine you, but I'm not sure if our listeners have ever listened to or read N p r Reporter Joe Shapiro's report back from 2018 about people with disabilities and abuse. It touched on the sexual assault epidemic that no one talks about. I'll put the link in the description for this podcast, but everyone has to read this. And one thing that it pointed out is that people with intellectual disabilities are the victims of sexual assault at a rate seven times higher than those without disabilities. And I remember early on in my son's life, he's 12 now, my oldest has down syndrome. I have two younger children who are both non-disabled. So early on in my son's life, I was going to all these trainings and conferences, and I remember one of the speakers talking about, um, sexual abuse in our kids. (00:08:30): And he said, I want you to think about, not if this happens to my child, but when, and so when I think about summer camps or, you know, special programs designed for children with intellectual and developmental disabilities, I just, you know, I know that this might not be fair, but I think of them as sort of magnets for predators because people are aware that children with limited traditional expressive language are often an easy target With all of that, I'm curious how both of you feel about camps designed specifically for kids, um, with disabilities. Cindy, what are your thoughts? Speaker 2 (00:09:08): Um, first I wanna go crawl into a ball and, and, uh, have a cocktail because it is, uh, it is something that keeps me up at night. And then my advocacy work related to public safety and even education through K-12 on sex ed. It's an area that I, that that article that you pointed to specifically sits with me every day. So it, it's interesting too, because I can't help but mark the time in our, in our history where Judy Human died on March 4th and her whole revolution, the civil rights movement started with a camp on all of those individuals started going to a camp that was primarily for disabled individuals. But I think the difference is that it was also run and supported by individuals with disabilities cut to modern day. It certainly is a challenge because, you know, I always think of our kids having, having a long ramp of education and learning, and that involves socialization as well, understanding peers, understanding the sophisticated dance of peer relations, understanding their own emotions, and they are human beings and have natural sexual desires as well. (00:10:30): But understanding what informed consent means, which could be a challenge for the non-disabled individual. Mm-hmm. , I don't have any solutions, but I, I, I guess I, it is, it is a concern. And in that case, it sort of boils to access and privilege. If you have the privilege to be able to afford a trusted support person, caregiver behavioralist aid to be with your child, that is a financial privilege. But it also, the other side of it is access. Would there be a camp that is accessible even with all those systems of support? And again, the financial burden is on the parent. Um, you know, and Jessye mentioned something about performative inclusion, , which kind of got me on this, this summer camp thing. Um, and if I can just share a quick story of my experience of pre Covid summer camp, please. It was, it was a private camp that I went to, and within the hour they called me and said, you need to come pick her up. (00:11:36): And I said, why? Well, she's not going with other campers. Okay, well, what have you tried? Is it a physical inability because could we put her in a, in a trolley that other kids like this is the part of inclusion that's really not that hard. I she physically not able to keep up because she's not running yet, but could she be in a, a scooter that other kids would love to push and take turns sitting in? That would be inclusive solution. So I give that camp at least credit for trying. The second camp that I went to or was looking into to Jessye's point about performative inclusion, made all these statements on their website about social justice and the kind of training and d e I and, and I'm sure everyone in the room listing, like noticing when it's d e I work that doesn't include individuals with disability. (00:12:30): It's not d e I work mm-hmm. . And so I actually called and I said, I'm slow to share that my daughter has Down Syndrome, because that instantly closes doors to conversations. I said, you know, she does have a disability, but I wanna talk about how we can support blah blah. Three phone calls. The last one was returned and the, the camp owner said, we can't support her needs. And so he didn't even have the courage to talk to me directly. He went through his admin and I said, how does he know what her needs are? He's never met her, he's never met me. We've never been on campus. And when they said that, I said, great, can you put that in writing and send that to me? And when people don't wanna put it in writing, they know that they've done something wrong. Mm-hmm. (00:13:21): , and I'm not a litigious person, but thank God. And you know, the ADA A was passed, and we're talking about Judy Human a little bit. I filed a complaint with the Department of Justice. The Department of Justice felt that I had a viable complaint and offered to mediate, but it depended on the camp if they wanted to engage in that mediation. And they refused. And here in the states, the, the American Camping Association has put out guidance that there is no such thing as grandfathered in from the a away from the a d a, there's no grandfather clauses. So you do have to be compliant and work and discuss reasonable accommodations. But that clearly didn't happen because of ableism and bias. It's not a kind of camp that I would wanna send my child to when it truly is performative. And they're talking about how well they train, but they're not including disability in that conversation, or they're not even willing to engage in a parent who's willing to be collaborative. Speaker 1 (00:14:25): Jeff. I think that's more common than we realize. And I know that Jessye and I have talked about that, in fact. So Jessye, I'm not like I have a question posed, but we have this conversation, so I want you to go whatever direction you're feeling now and what you say next. Speaker 3 (00:14:41): So I, I realize there's one important piece of my personal history that I think I should share. And it leads to my next comment, which is that I'm ambivalent about, about specialized, specific camps. Um, I agree with everything that has been said, but I dream of the day when my kid could go to a camp where she'd meet other kids like her in some ways, , and they have a specially trained staff to kind of get her, um, if I think about it from a, a neuro divergent lens, like I would love that. But, but the important piece of my history that I'll share, um, so I was someone for whom summer camp was not a great personal experience. Day camp was fine. Overnight camp was a long history in my family, and I wasn't great for me. But I spent the very first summer of my life, uh, living in a closet of a cabin in, um, upstate New York. (00:15:33): My parents as, um, I guess during my, my parents' graduate schooling. And after they started a camp specifically for kids in this, uh, metropolitan area, who essentially kids who were classified, this was the early mid seventies classified as emotionally disturbed. We, of course, have luckily moved on from a lot of that, but kids with significant behavioral challenges who also were at risk of removal from their families and had involvement with various service agencies. So my parents, along with their friends who were these eager graduate students in psychology, started this program so kids, those kids could get a camp experience that was nurturing and positive and loving. So I grew up along with a couple of peers, like literally sleeping on a shelf in a closet so our parents could run this camp. The fascinating thing that they did at the time was that they then provided wraparound services through the course of the year. (00:16:30): It was really a very early model in sort of community psychology, which wasn't happening. And so they, they said, that's great. We can get these kids out to camp, but what's gonna happen when they go back to their schools and their families without support? And so they started providing some wraparound case management and support services and, and again, really sort of informed the future of, of good community psychology work. And my parents moved away from the area, but there are people, my parents' peers who are, you know, in their seventies who are still in touch with campers from that program 40 something years later. So that, for me was a very early model of a specialized camp that really was there to meet the individualized needs. And for those kids at the time, all of their other experiences were, were integrated. There weren't any other options. (00:17:20): And so it felt like a, a haven. So I guess in some ways I have this vision that someday my, my kid could have that haven could have a place. Um, but you're absolutely right that segregation is not inclusion. And you know, Cindy, when you were telling that story, very different experience for different reasons, but the same thing an hour into camp, you know, you gotta take your kid. It was so very clear to me that they just understood nothing about my child. But I've been told similar things like all, you know, and, and unfortunately, sometimes I don't play my cards close to my chest. And I'll say, you know, okay, my daughter has an autism diagnosis, and I'll hear immediately, oh, we can't meet her needs. Well, you, again, you don't know what her needs are. First of all, you have literally just heard a diagnostic category. (00:18:06): But even that diagnostic category is a spectrum. There's a reason we talk about it as a spectrum, but you know nothing about my kid. Don't tell me that she needs to be accompanied by an adult at all times in the pool. She taught herself to swim when she was three. You know, or tell me that, oh, well, if the aide that I'm ready to send with her isn't there, she can't come on that day, that is not inclusion. Or, oh, we won't have room on the bus for an additional person for the field trip. So she might not be able to go on the field trips unless she's transported separately. These are inexcusable conversations, particularly in this day and age. And the financial burden is real. Erin, you and I have talked about this. My current frustration is with extreme privilege that comes with my professional background, my education, my advocacy, and the resources available. I actually have access to a lot of money to pay for these services. And I can't find anyone to take my money because I can't find a staff person, or I can't find a program. And again, I say that I am extremely fortunate that I have this privilege, but it's a privilege that I can't access because I cannot find ways to give people, Speaker 2 (00:19:25): If I can interject. It often helps non-disabled people to really understand the level of bigotry and discrimination ableism when we just take out, my daughter has autism, down syndrome, cerebral palsy, you name the disability and you replace it with, my daughter is black, my daughter is, um, Chinese. And the example that, and the experiences that we both all have lived, the three of us. And I'm sure to the listeners who can relate that if you replace any disability with any ethnicity, the bigotry becomes so clear because what the quest, the question they should respond with when we share is, how can we support your child? Or let's discuss how and if we can support your child, you know, let's meet, let's look at the space. Let's see, let's look at the calendar of what we have planned. You know, these things are not difficult. Um, I think it's, it's really a closed mindset. And I know that a lot of summer camps are run by small businesses, and I like to support small businesses. But if you're out there parading yourself as a social justice, restorative justice, d e i , and the response is side unseen, we can't support your child, well, then you're also a bigot. There's no way around it. Speaker 1 (00:21:08): I, um, Cindy, I've always loved that you just don't hold back. And you're right, it is so hard. And disability is not included in most d e I work. When we say inclusion as a society, we don't often mean disability. I think sometimes those of us who do have children with disabilities or who are in the disability world, we, we feel like we are included in inclusion because we talk about it so much. But when you go outside the bubble that we live in, it's not really there. And I think it's funny too, that the three of us are here, and all three of us have experienced sending our child to camp and getting a call within hours. I remember getting my son set up for a science camp, contacting them, doing all the things, them assuring me everything was fine. And two hours later, he basically got kicked out of camp. (00:22:06): There's just so much here because when we're talking about, you know, the financial burdens, you know, even if you have the money, like you said, Jessye, to pay for help, you often cannot find people. And that's why I wish that camps would do due diligence to look to support people, especially when you have young people who want to work and want to learn and are probably more open-minded. You know, Cindy, you brought up, uh, Judy Human earlier, who is just an icon. And I wanna bring up, um, the late great David Berger, and I'm not, I don't think as many people have heard of him, but he was an amazing advocate. He spoke to individuals with disabilities about sexual autonomy, and he would speak to, you know, their parents about how your child is a sexual being. You need to accept that and learn that. But he was also just a fierce advocate in, in general. And he said something, um, once, and I'm paraphrasing this, but he said, never ask permission, because asking permission implies that no is an acceptable answer. And he's so right. But at the same time, like everything that we've experienced, it's not safe for us not to mm-hmm. , it's not safe for our child, for us to just put them in something and go ahead. I've Speaker 3 (00:23:27): Experiment. No, I've experimented with that. I tried that. It failed miserably. You know, there was a time in my life where I thought, screw them. I'm not gonna tell them, you know, why should no other kid comes in, right? No other parent of a kid who's identified without a disability, who's not identified with a disability. Oh, you know, Joey has a tantrum if you ask him to take a nap or he eats, you know, only brown foods because whatever. Like, and so I tried, I tried it several times and it hurt my kid. Like you said, it's not safe. Speaker 2 (00:24:02): And I, I, I try it as a conversation is honestly a litmus test to me mm-hmm. to see where they really are on their knowledge base of inclusion. And, and listen, I'm still learning about what that looks like and what supports look like, and I'm still learning about my children, both of them. But for me, the, if the conversation goes, whoa, and you feel the walls come up, then for me, I know, okay, that it's not a safe place for my kid. And this person doesn't even have the mindset and, and mindset for me is at least 70% of the challenge. If the mindset is there, the openness is there, the willingness is there, the seeing the child is there, we might be able to work it out. And it's a lot of work, on the parent's part, but it's willing, I'm willing to do that for the benefit of not just my children, but to, I can't remember who said it, or to the all of society, the community that my kids are gonna be in. (00:25:10): And I have so much faith in this next generation, the youth generation, the leaders, I think there's so much more awareness and understanding and appreciation. I think for right or wrong, even though the inclusion levels aren't where I want them to be, I think that they have been more exposed to disabled individuals in their daily life, their school than I ever was growing up. And so I have a lot of faith that we can work and train, and they are so good at just seeing the kid and trying to have fun. And that's really what summertime and summer camp can be. I also like that approach of, you know, it kind of depends on what it is, but the risk of not taking no for an answer is a pretty high risk when it comes to children who, um, have trouble or challenges communicating, need more time to process to understand. I love that quote though, Erin. It's really inspiring because , there's so many different ways, right? Like Speaker 1 (00:26:18): It's spot on. And I think that because we're in this situation talking about our children, I think that quote more applies to us, um mm-hmm. and how we do it. But I mean, Cindy just mentioned this, and Jessye, I mean, we talked about this, here we are, we're three women who are smart. And before kids probably had a total different life, right? Mm-hmm. . And I sometimes wonder, and again, I like all three of my kids are the best thing that ever happened to me. And my son having Down syndrome has made me worlds better of a better person. So I'm not saying I wanna take that away, but I do wonder if it weren't for all the work that came along with busting through the barriers that society has put up, what my life would be like now, I, I would like to touch on like, how can we change it and what can we do to make it better Now for people like us who are really just getting by, Jessye, what do you think? Speaker 3 (00:27:20): Of course, you're gonna start with me on that one, the tough one. . Um, thank you Eric . So it all comes back to, to advocacy for me at this point, we've talked about the, not, you know, the not-for-profits and the, but for me it's starting with places like Parks and Rec and city organizations, because I think they are the most compliance is required, right? From those places. I have one option locally, and they have very limited resources, and I really value the person who oversees the program. And so two years we registered, and two years those both years, that person contacted me and said, here's why I don't think it's a great fit this summer for your kid. It wasn't ableism, it really was, I'm looking out for your kid. Here are the structural issues, like an acknowledgement that there were structural and staffing issues that were gonna make it not a good place. (00:28:13): And so we're, we're crossing our fingers to try it again. But this year there's so many people interested and their resources haven't expanded that they're talking about having to prioritize people who sign up for a whole summer. Well, guess what, if I sign up for a whole summer and it bombs on day one, what am I supposed to do for my whole summer? Two, they're talking about maybe only being able to send people for half days. Same thing. I can't do my job or live my life with half day camp options so that, you know, those, those are larger systemic and structural issues. But I do think the same way that we demand, and I don't wanna pit this as disability versus some other dimension of diversity and inclusion, right? I think all of it needs to be, and, and what we're not even talking about so far is the additional burdens that, that you talk about if you're talking about kids of color with disabilities, right? (00:29:05): And that, that, that's even more, but that we say, okay, this is a community with X number of kids with disabilities in the school system. The only option cannot be summer school. What are you gonna do? And either the district needs to pony something up, or the town or the city, or whatever it is. And again, maybe it's me doing that on behalf of people who don't have the time and energy to do that. It's different from saying, you have to take my kid to this particular program right now. And more, it's unacceptable to have communities with significant numbers of people with disabilities not being served any recreation setting and asking people to do better. Speaker 1 (00:29:46): Cindy, go ahead. Speaker 2 (00:29:48): I like what you said, Jessye. Um, I will say from a personal point of view, my sister said this to me. She's like, I feel like every developmental stage your daughter is in, and I, I won't, obviously she said her name, but I won't say her name. Um, it's part of a system that you have to change. It's one more thing you have to change. It's like, yeah, you're not wrong. every grade she's in, we've got, there's something we had, she hits, you know, third, fourth grade, fifth grade, sixth grade, whatever, sex ed, you gotta change that access to the gen ed, blah, blah, blah, blah, blah. And then you go to the community and it's exhausting. And covid, I, I think we, we have to talk about the impact, the ongoing long tail impact of covid on us as advocates on us as parents, on our kids, and their access, not only necessarily regression, but loss of skills, be it academic and or social. (00:30:48): So there's a lot of things that can be really overwhelming, but I think we can all take a bite of this giant elephant in this way. I really love, Jessye, that you talked about Parks and Rec, because as tax paying constituents, that seems like a very, very, very reasonable, relatively easy way to initiate conversation and demand for change. So get your two or three minute public speaking comment. Write letters to at least where we live. There's a board that is elected that oversees Parks and Rec. There's also usually a foundational fundraising that supports the things that tax doesn't support. So understand you're a parks and rec municipality because as you, as you said, Jessye, there are, there are compliance things that they have to participate in. And where we are, there's a whole 30 pages of summer activities and then 10 pages for therapeutic rec. (00:31:58): I will say the therapeutic rec is accessible and supportive, and Manny families love it. And I would love the conversation to move to how can we, this is where our community is. How can we integrate as a step towards inclusion, right? So why not the summer training for, for summer camp counselors, you get funding to hire two, three more adults, two, three more kids, college kids, get someone to train them on top 10 ways to be inclusive, top 10 ways to see ability, not disability, top 10 ways to make summer camp engaging. So I think starting with your municipality is a good way. And then coalition building, it really doesn't take more than one plus one as a team, right? . So if you get plus two, you got three people that can speak in, right? Unfortunately, I think it is going to be, uh, an initiative locally. (00:33:00): And then of course there's, there's guidance, there's associations, at least in the state's, camp associations that have put out guidance, legal guidance. And if you have a camp that's privately run that at least show some mindset towards that, I think maybe reach out and talk about ways that can be collaborative, easy ways that are not expensive for them, but that really make it more open and inclusive. And hey, you get a larger community and consumer group because let's remember, as Jessye said, we've got money to spend, we need a place to spend it. So those two things maybe, but honestly, I'm tired. I'm tired of educating the experts that are supposed to be good at this. And some days you just wanna take care of your kid. Speaker 1 (00:33:51): I think that's a tough one for all of us. You're like thrust into this when your child's born and right away you go into early intervention and you go into the therapies and all the things, and there's this big learning curve. If you're a parent who, who doesn't have a disability or doesn't have a relative, like said this before, but my son was the first person I ever met with Down Syndrome. And so yeah, he's 12 and I'm tired, and Cindy, I'm right there with you, with, you know, doing the systems level change and going to speak. And I took it to the next level and I started getting on boards and, you know, running for things because I realized that speaking there wasn't enough to really be a part of the change. You have to be a voice on the board, but it's exhausting. And it's even more exhausting when you have a kid at home with a disability who has more needs, who has more medical appointments. I don't know about you, but I, it's become clear to me that the only time I get out of my house is when I'm gonna go to a board, a board meeting. I like, don't go on a date night, I leave my kids at home to go to work for free. Speaker 2 (00:35:05): Right? Speaker 1 (00:35:06): So how do we rectify that? Like how do we better mobilize the efforts we're doing? Do you have any ideas? Speaker 2 (00:35:14): Nope. , um, well first of all, thank you for putting yourself out there to run for elected office. It's so, so, so important. I think speaking from a parent point of view, you gotta take care of yourself so that you can take care of others. And that's really hard, I think as women, particularly women who also have professional system change goals, a aspirations, et cetera. For me personally, I think everyone in this room is similar. You need something that stimulates your mind too. But it is hard. And I, I think if you need to take a pause, then do, because hopefully it's a choir out there that someone else will be inspired. And sometimes if you're not in the room, someone else like, oh, okay, it's on me now. Right? All I can sort of recommend is take a break if you need to, but always come back and I think when you are at the table, be willing to mentor and train. Sometimes, and based on my experience, it can be a competitive viewpoint of disability as though it's a scarcity model. Like, no, there's a lot of disabled people. We all can have a moment at the mic. We all have a moment at the, but how do you build that bench strike? So it's not you. You're right. I don't know what a date night is. I'm just, I know I say it to my husband, I love you more than sleep. So you go ahead, you sleep . (00:36:49): I'll take the morning shift. . Speaker 1 (00:36:51): Jessie, how about you? I mean, how exhausted are you? What are you doing to like create change but also survive? Speaker 3 (00:36:59): Oh, good question. Well, as you know, I also took on a local leadership position, not elected as the president of the special ed p t a. And, and it's selfish. It's not, it's not all in service, right? To meet other adults who can relate in some way. I met someone at one of those meetings and they're new to town and I'm not, and we forced our kids to get together and hang out a little bit. And it was kind of a disaster, but it was great. I'm on sabbatical this semester, so I'm actually doing pretty remarkable self-care and have the luxury of having some time when my kids are in school. We have given up on trying to even find sitters because again, how many times can my kid experience rejection or incompetence or somebody who's not able to handle her? I dream of knowing other parents who have enough capacity and we know each other's kids enough that we could at least do some sort of, you know, co-op exchange of, of childcare, of anything that's clearly not in the, in the works here. (00:38:03): I've had to reach out and connect with parents of kids with disabilities online and social media and joined groups. And even summer camp, I reached out to this na, you know, a national group of parents and said, where do your kids go and what works? And, and not even spec, you know, specialized camps, but like, hey, you live in a different part of the northeast than I do and it seems like you've got more options. What are the just general camps there that don't kick your kids out? And so trying to mobilize those resources and recognizing, again, the privilege that I would consider driving, you know, six hours to stay in a hotel so that my kid could get a camp experience. This is, this is not on that question specifically, but just if I can, I feel like, and I have to be careful how much I talk about the other kiddo in my house right now, but I, I feel like I have this little built in control group because I have one kid in my house who is identified with labels and, and one kid who's not. (00:39:00): And, um, I think it's gendered in some ways, and it's also about age, but I am finding that I have lots of options available to me for the younger boy who hasn't been identified, even though he doesn't look that different at home or in daily life, right? There's lots of similarities in terms of behaviors and processing and energy, but he hasn't gotten that label. And he is a young, charming boy and it just speaks to me again, and I know this is the broken record, right to the ableism that I can send him. I probably have five choices, six choices of places I can send him this summer, but it also has a built-in comparison. And so we have to have conversations and I'm curious if you do this in your households, but like, he'll say, why can't she come to my afterschool? And we'll say, because I mean, he explains it now as they were mean to her, but I was like, because, and she says because they don't think kids with autism can have fun and they're dumb and I wanna read them a book about autism so they can know that's not true. (00:40:04): But basically, yeah, no, she's, she's awesome in that way, but basically she can't come because adults are, are dumb, are mean, right? I don't know what other words to use, but because they wouldn't bother to get to know her, uh, well enough to, to have her in that setting. But then she has to ask that about not only about him, but about other kids she knows who are there. Speaker 2 (00:40:28): Mm-hmm. that happened to me too, our family. You realize you're at the moment where like, ooh, I am going to, this could be pivotal, right? Yeah. So disability is a family affair for our family and we're cautious about everything is associated with Down syndrome X so-and-so can't do X because of we're like, hmm, might not be Down syndrome. It could also be, you know, because she's 10 and she has her own personality, right? But back to that camp where we got a call within the hour because my daughter quote wouldn't leave the area, you know, after about a week my son went and I said, whatever you wanna decide, we'll honor, I know you're having fun and you've had a week there, but I'll tell you, I'll tell you why we decided to, to not take your sister anymore. Speaker 3 (00:41:22): Mm-hmm. , Speaker 2 (00:41:23): She doesn't feel welcome. They don't know how to welcome her. They may want to in their heart, but they don't know how to do it. And that could really her, that could hurt her heart. Talk about mom guilt, right? But you decide son, whatever you Speaker 3 (00:41:39): Want. Right? Right. , you still wanna go even though they betrayed her. Right? Speaker 2 (00:41:44): Yeah. Um, and I was really proud of him because, you know, he's a little narcissist. That's what they're supposed to be at that age. Yeah. And he's like, well, I don't wanna, he, he actually said, one of the camp kids said, you're, she's so weird. And he didn't know that that camp kid didn't know that he was talking about my son's sister. And so my son in that moment, beautiful advocacy, just looked at him and said, yeah, but weird's cool and walked on. Speaker 1 (00:42:14): Perfect. Speaker 2 (00:42:15): So that was a proud parent moment. And then ultimately he did say, you know, it's fun, but if they're not gonna welcome my sister, then I don't really wanna go. I think that's a teaching moment. I think secretly I want him to be a civil rights advocate, , but he was able to recognize that. And I think the beauty of siblings is not only are they are, is their narcissism beneficial because it is a sense of equality and they balance me as parents, but there also is a tenderheartedness that goes with it that mm-hmm. , I really try to treasure, Speaker 1 (00:42:51): I, I gotta say with three kids, I very much see it this beautiful relationship where yeah, it's self-focused and there's a lot of like questions of fairness, but there's also this, I mean, I know I have built in bias and I just see like the lack of it with disability when it comes to my kids because they've just been, it's their life, right? But at the same time, like the empathy that's there, they also don't take any crap from each other. And especially their brother. There's no like, there's no like down syndrome card for them. Like he gets a pass and I'm like, sometimes I've gotta be like, no guys, he needs a pass on this. And no way. Speaker 2 (00:43:33): Nope. Speaker 3 (00:43:33): Can't change the rose midstream mom. Speaker 2 (00:43:35): No . Speaker 1 (00:43:37): Jessie, can you give us some context as to, you know, you and your wife, you have two children, but you're careful about talking to them. Can you just explain to our listeners why? Speaker 3 (00:43:46): Sure. So, um, my wife and I have been foster parents for about 10 years. And, um, so the other child in my house right now is, has lived with us for about a year, but as in foster care, my daughter has had a lot of kids come through our house since she's been around, but typically it's been teenagers. So this has been a new experience to have a younger kid who's with us long term. I would say, you know, I hear a lot how good it's been for her from people who are well intentioned, but it's really good for both of these kids to have each other. And we're navigating all of what comes with that, right? When, when kids live together as siblings, even if it's short term, but also what happens when someone moves in who you didn't know when they were a baby for the kid and for the adults, right? (00:44:32): It's a, it's all new. And I think balancing that, her sense of herself and just being nine and a half and in that 20 age where she's trying to figure out what is her and what is, you know, who is she? And, and sometimes wanting to explain things away or sort of get the pressure off of her by saying, well, it's because I have autism. And sometimes we have to say like, Nope, it's because you are between, or, Nope, it's because you are you. So yeah, thanks for, for asking that as absolutely shaped our experience as parents and has shaped my kids' experience of kind of us as a family. And again, my parents were foster parents before I was on the scene. So one of those other things that I've kind of come by naturally ish. Speaker 1 (00:45:22): No, it's the generational stuff is beautiful. It really shapes who we are. And that's why like Cindy, when you were saying earlier that hope for our future, I really feel like it's moving too slow for us and it's moving too slow for our kids. But when I think about how we are making steps towards inclusion, this generation coming up can really move the marker, right? Speaker 3 (00:45:43): I I, yeah, and I mean, this is a school thing, not a, not a camp thing, but just back to this issue, some, my daughter will sometimes say in her classroom, well, it's because I'm the only one with autism. And her teacher, her current teacher, I really appreciate this. She was like, you have no idea what's going on with other kids' brains in the classroom. You're certainly not the only person whose brain might work differently. And so that teacher above and beyond whatever required social emotional learning they're doing is bringing in the concept of neurodiversity and neuro divergence and like explicitly introducing stories about people whose brains and bodies are different. And yeah, some of that is to help my kid, but some of it is just because she knows it's good practice and that she is training this next generation of empathic, compassionate, you know, inclusive people. Speaker 2 (00:46:36): I think that's amazing. And I think what I'm, what I'm seeing with our youth leaders and youth in general and the impact of Covid is they really had to be introspective and reflective and try to identify emotions and feelings and, and, and learn coping mechanisms beyond their age. That, let's be honest, some adults still don't have . Like most people are in arrested development at a certain age, and it's not their chronological age. But I think this next generation, hopefully we can get to a tipping point where there is, you know, coupled with legislation and coupled with, with compliance and coupled with mandates, I think we can get there, but it involves speaking up. And I, that's the one thing to your question, Erin, what we can all do is, what you're doing is, it's not hard, it's to share your story. It's to share. (00:47:29): Everyone has a phrase that they remember that some jerk said to them out of ignorance, ignorant malice. And we can remember those phrases and harken back to that moment, even if it was 10 years ago, sharing those moments and sharing those stories as part of the education process, trying not to shame, but if one feels shame, hopefully that opens the door to understanding themselves. And I'm still on that process. I wasn't a social justice warrior, I wasn't like a disability advocate until it hit my life. But I, I always say, boy, as a, as a Asian woman, I have experienced sexism. I have experienced racism, and as I'm getting up in age, I'm gonna start experiencing ageism. But there's nothing like ableism. It is so deeply rooted in, in justified that there's a lot to dismantle and the, the disability rights movement is still fairly young and we've accomplished so much. So I think it, the one thing we can continue doing that's not too hard is collectively sharing the stories and helping people listen and understand and finding that way. Well, we've all felt outcast, unaccepted, not belonging and using that as an entryway to really understanding and making change Speaker 1 (00:48:57): That is really beautiful. And Cindy, you've put it so perfectly because as a white woman from rural Ohio was where I grew up. And then you just didn't, you know, you didn't see much of anything. And so my perspective on ableism, you know, I considered myself worldly since, but ableism feels really brutal compared to the other things I've witnessed. But aside from sexism, I've witnessed those from the outside. So to hear your perspective as someone who has felt that and, and sees ableism as something a little darker and deeper, that kind of validates my perception of it. Cause it, it just feels awful. Speaker 2 (00:49:36): Yeah. There's, and the education of it is so behind, right? So disability wasn't included in the Civil Rights Act of 1964. So there's a lot of history and educational opportunities that were missed that I grew up understanding, well, racism, because I'm Chinese and heard the ching ch China and, and you know, when Coronavirus go back to your country, I was like, I was born here in, in the States race is based on how you look. Yep. Right? Not so we can have first generation Europeans, but they're not considered immigrants because of they don't reflect a look that's different from what's considered quote, non hyphenated America. But I wanna sort of frame this as a positive. The, the discussion, even looking regardless of your politics, but seeing disability in the national, global ether is really promising. And just to continue those conversations, I think is where we need to go to get a tipping point. (00:50:43): It's never gonna be fast enough, but I think it, it will gain momentum continually if we, if we don't stay silent. And sometimes that's the hardest part for parents. Like someone asks me, he is like, oh, you must love public speaking. I hate it. I hate public speaking. I hate it. The TED talk, the TEDx talk, I hated it. Every second of it. I think I blacked out like halfway through I was like, Ooh. But you get out of that comfort zone, out of necessity and then you go home and you do what you need to unwind or you, you do what you need to. Even if your voice cracks, tell your story. I don't care because it makes an impact. Speaker 1 (00:51:20): I'm literally gonna make sure I add to the description. You're a TEDx talk by the way, because it is spectacular. Speaker 2 (00:51:27): Oh God. you're brilliant. Black out. Sorry, I wasn't trying to name drive, but that was like, someone's like, can you do it again? I was like, nuh, no, that's, no I don't wanna do it again cuz I blacked out and I don't know why I wore that outfit. But here we are. . Speaker 1 (00:51:44): Oh, Speaker 3 (00:51:45): Well Speaker 1 (00:51:46): Before we move on to the next question, because I am gonna get back to summer camp. Um, before we wrap up, I'm curious if you have anything to add to this part of the conversation? Speaker 3 (00:51:55): I was just gonna jump in. You know, my evolution has been fascinating. So I, I grew up again with parents who were pretty, um, ahead of the game around inclusion of various sorts, including disability and a and ableism as a, as a kid. It was just, it was something that we talked about, um, although I can remember some, not my, in my family, but some pretty like things that make me s shutter in school. And then I got involved in mental health advocacy and activism as a very young person and continued to do that sort of on the side. And then did a master's in rehab counseling where I was trained for two years on helping people with disabilities get jobs and, uh, you know, access resources. And all the while was living as a person with a not visible disability and, and really not able to advocate for myself, but could advocate in these sort of other ways and now have become a passionate advocate for my kid and other kids. (00:52:59): And so I've been doing some reflecting around why didn't I think I was worth that, right? Why, why, why could I do this? And obviously as a parent it taps into something very different, but I could do it sort of tangentially, right? I could do it on behalf of a community or on behalf of an issue and, and it was part of my profession and my education. Um, and certainly as a psychologist, I worked to help people with lots of different struggles. But it has been a, you know, I wonder, was it my own internalized ableism? Was it, uh, self-confidence? What, you know, what is it? And I'm not gonna find the answer on this podcast, but it is something that I've been thinking a lot about. There's Speaker 2 (00:53:33): Actually, there's actually a, sorry, just to interject, it would be really interesting and I'll tie it to summer camp, if we could, uh, encourage camp owners and camp counselors to take a disability bias test. Yeah. I took one recently not as , not as good as I thought I would be. , it's so deeply ingrained, especially, you know, coming from an immigrant family and the harder you work, the more you achieve, the more get this degree, get that degree you all to be competitive. And then to really reframe that in a way where as it relates to disability takes a lot of learning and unlearning and, and self-awareness. But that would be a fascinating experiment, is to have camp organizers start with a, a disability bias quiz that takes 20 minutes and then use that as a conversation starter. Speaker 1 (00:54:34): I wonder if there's a way we could advocate to require that. It's a, it's an interesting question and it's interesting too because I think I kind of went on a tirade earlier about camps specially designed for kids with disabilities, right? But I recognize my own bias there because I, um, my son really enjoys Special Olympics and he's a special Olympian skier and he's on the swim team now. And I see the benefit of that, but I still have a hard time fully accepting it. And I don't know if that's about me or about him mm-hmm. and even though I have concerns about camp, you know, how do I know he wouldn't really enjoy a camp that had more kids like him? I don't, I don't know, uh, where that's coming from. I do know that inclusion is important. I do know that segregation is not great, but Speaker 3 (00:55:25): Sorry to interrupt you, but for me it's about choice. I wanna be able to choose whether I send my kid to a specialty camp where she can meet a bunch of kids that maybe are like her or whether I choose that she loves Minecraft and she just gets to go to Minecraft camp. And I don't have to think beyond that, right? I want it, I want it to be about access. I want everyone to have that choice. You know, I, I'm talking about a community where there's tons of camp choice, like, I don't know, there's so many specialized camps based on interest or mm-hmm. or, you know, sport, but, but not in these other ways. So, Speaker 2 (00:56:00): And I, I think it also boils down to belonging, right? Yeah. Erin, I really appreciate you sharing that because, and being vulnerable about that, because I think that's part of, and you and I both have children who have visible disabilities, so you have an invisible disability and, and I always empathize with parents who went on that journey because at birth they're like, Ooh, it's, she's a genetic overachiever and this is what you can expect, right? Or he's at whatever with Down syndrome, any other genetic anomaly. But when you have a child who doesn't have a visible disability, I think there's so much more growth and awareness in, how do I say, self-doubt, parenting doubt, maybe. But I think to your point about Special Olympics, I'm such a radical inclusionist and, and I realize that that's what I want. And sometimes I have to hit pause and my daughter's really good about, bye mom. . Like, she says it like, bye Felicia. And I'm like, okay, . It's finding a place where she belongs. And I can relate to that in terms of growing up in the US being Chinese and going to Chinese school and having a quote, a subculture so that I felt a sense of belonging and other people who had a hyphenated, hyphenated definition of American. It, it's a tough one. So I appreciate you sharing that vulnerability. Speaker 1 (00:57:20): Hmm. Thank you. I, I wanna talk about this one camp that my son did go to. We lived in the DC area and there's a camp called Camp, uh, accomplish. It's through a, a organization called Melwood, and it's fantastic. Okay. They offer day camps, they offer overnight camps. It is a camp for everyone, disabled or non-disabled. Everyone is welcome. A lot of the kids that did not have disabilities were siblings. It's like on this sprawling acreage kind of in Maryland where you'd have to like get on a bus to go down. Um, my son was younger at the time. It took a lot of, you know, letting go for me to let him go there. But when I went there for orientation for him, they were able to accommodate virtually everyone. They had nurses on staff when I talked about my son's elopement. Um, and we, I say elopement like everyone knows, my son's prone to runoff and he was very fast. (00:58:19): He's still very fast. He still does it. But then it was like a lot. And so I would always be on high alert and if there were roads and all that. And when I was running that through the camp folks at orientation, I was like, so how do you handle that? Will you stop him? They're like, we don't touch the kids. We do not restrain them in any way. And I was happy about that, but I was still concerned. But what if they're like, we know what we're doing. We will never restrain your son. That has never been a problem. It will not happen. And that's a lot of faith to put in someone. But when I saw it in the works, it was just amazing. I mean, there was proper training to the point where I wish that this place would put on a seminar of seminar for school systems. And I wish there were more camps like that mm-hmm. . And so to me, this is the closest thing I've ever seen to like a dream camp. You know? I'm sure it's not perfect. I know a friend whose daughter goes there, uses a G-tube, needs assistance walking and has a ball every year. Right. Wow. Like they are able to do this. What's So I'm curious, oh, sorry, Cindy, Speaker 2 (00:59:26): Sorry. I'm like, I'm taking notes. What's this camp called? Speaker 1 (00:59:28): . Bellwood. Bellwood. And I can put a link in the, in the description and I, Speaker 3 (00:59:32): Yeah, I just pulled up the webpage. Speaker 1 (00:59:34): . Yeah. If this could be something that would happen across the country, to me this is like the framework. This would be the framework for something. If, if we were to do this. Now, Jessye, I know you've put a lot of thought into this and Cindy, I'm guessing you have, but I'll start with Jessye to give Cindy a break. Jessye, what would your dream camp be? Speaker 3 (00:59:52): So it's so much about the framework and not about the actual, right. So it would be, instead of telling me what they can't do, it would be starting with we know what we're doing and we're, you know, we're gonna keep your kid safe. But it would start with a question of what would make this a successful experience for your kid? And I'm not a Pollyanna, I know not everything can be individualized, but I want someone to start with, how can we make sure your kid has fun and feels welcome rather than, here are all the things we can't do. We can't give meds, we can't do this, we can't do that. We can't promise this. It would be two pieces. One, communication that we've got this and we're professionals and we have experience and more than experience, we have interest. We don't want you to force us to make an exception. We're a big tent camp and so we welcome you in. And then the second piece would be, how can we make sure your kid has a blast? Not how can we manage her behavior? Speaker 1 (01:00:51): I love that. Cindy, how about you? Speaker 2 (01:00:54): Uh, pretty much what Jessye said, , um, seeing the, seeing the kid first and um, giving me, as a parent a sense of faith that they know what they're doing and that it's, we talk about universal design all the time in education K-12, that there are universally designed options for what camp can look like and that there's a respect for what my daughter and my son may or may not want to do. And ways to support that in those moments. Cuz it, summer camp should be about fun. Speaker 1 (01:01:31): I love that. And I think it's important too because a lot of times our only option for our kids is summer school. And I mean, summer school's made to be a little more fun, but it's still at school. And it's still school. Mm-hmm. . And that's not fair. Ending on a happy note, what are your favorite memories of summer with your children? Speaker 3 (01:01:55): Oh, this is hard. Yesterday I came across pictures. My phone, you know, happily suggests memories. And so interestingly we were traveling to New York City to, to participate in a study, but we decided to stop outside of the city at amusement park. I had gone to, actually, my wife and I had both gone to when we were kids. My daughter, who consistently has gone to bed very early her whole life, stayed up late enough and got to see fireworks. And they're just these incredible pictures of her, first of all with a ca a cotton candy that's like, she was five I think at cotton candy as big as her body. Um, and then these pictures that I captured of her seeing fireworks for the first time and she had ear protectors and like, we made sure the sound wasn't overwhelming to her and it was quiet cuz it was, you know, a weeknight, I think and just a magical look on her face of like, I can't believe this is real. Every other time that we had been around or available for firework, she was asleep or it was too, it was sensory overload. It was too loud, it was too crowded. And we found a way to do it a couple times since then. But that is just this, like, her cheeks are tan and pink and, and she's sweaty and she's just ridden, uh, carousel in the, you know, dark. Um, so that's one that, that there's lots, but that's one that just came to mind this week cuz I was reminded of the picture. Speaker 1 (01:03:18): Beautiful. Cindy, what about you? Speaker 2 (01:03:20): We're lucky to live in southern California or in California. There's stretches of coast and beach so we can drive 20 minutes and really enjoy the beach and the sand. And, uh, both kids love it. It's a great family place because they're too scared to get in the water. So I can actually sit and give them a little, a little length to be away. And both kids love it. They, we dig for sand crabs, make sand castles, go up and get fish tacos and it's a great way to spend the day and enjoy outside and it's free and it's a family thing. So those are some of the happy memories of summer and then getting together with family, um, over 4th of July as well. Speaker 1 (01:04:06): Oh, that sounds dreamy. Yeah. On that note, I wanna say goodbye and thank you both so much for joining me. Speaker 3 (01:04:14): Thank you for, for giving voice to this topic. Speaker 2 (01:04:17): Yeah, Erin, thank you very much. This was fun on Speaker 1 (01:04:25): And thank you listeners for joining us. We're just getting started with this podcast and can't wait to bring you more. Please rate, review and share and tell us what you wanna hear. We've got tons of topics in the pipeline and are always welcome to ideas. This is the Odyssey Parenting Caregiving Disability. I'm Erin Croyle and we'll talk soon.