Hello! Welcome to episode 99 of I’d Rather Stay In. This week, we’re continuing our series on Parenting in America with Allison Grigsby Sweatman as she shares what it is like to parent disabled children in our society. Please note that this episode contains discussion of medical trauma and diagnoses.

Quick links

• Connect with Allison: https://www.instagram.com/allisongs_lmsw/
• My Dad Wrote a Porno podcast

Episode transcript

Megan
Welcome to I’d rather stay in with your host Megan Myers and Stephie Predmore. This week we’re continuing our series on parenting in America with our special guest, Allison Grigsby Sweatman. Stay tuned.

Stephie
Do you love listening to I’d rather stay in and want to support the podcast? Well, now you can visit our website or the link in our Instagram profile and click Buy me a coffee or visit buymeacoffee.com/irsipodcast. For the price of a cup of coffee, you can help us cover the costs of creating this podcast. There are no monthly memberships and you could support us at whatever level you like, whenever you like. Whether you buy us one coffee, many coffees or simply continue listening as always, we’re so grateful for your support

Hello, Megan,

Megan
hi Stephie

Stephie
how how are we? How are we doing? Are we surviving?

Megan
Yeah, you could say that I would say surviving. One of the things that has helped me survive is even though I am a we’ve been a late comer to the situation. But every night before I go to bed, I listened to an episode or two of my Dad Wrote A Porno.

Stephie
I love that this is like your new bedtime routine. Like my little

Megan
bedtime story.

Stephie
One of the most fucked up bedtime stories that you can go to, but I am like living about do you have now surpassed me because I still have a little bit left of the last chapter of Book Two and you are now on to Book Three. But I You guys if you have not listened to my Dad Wrote A Porno. It’s literally what the title says. It’s literally this guy who, whose Dad Wrote A Porno and he reads they read a chapter of it every episode, he and his two friends and it’s one of the most hilarious things you’ve ever listened to in your life. So highly, highly recommend it. I highly recommend stupid listening don’t Yeah, to your children. Oh, no, definitely not. But yeah, it’s it’s sort of like in 2016, I

Megan
think and so are 2015 Even I don’t even know. So we’ve been very behind and our friend Brandy recommended it to us. We listen to a lot of it in the drive from Illinois to North Carolina. Like peeing our pants driving in the car

Stephie
almost wrecked the car. So hard. Megan was afraid for her life. It was great.

Megan
And so then, after I finished the first book, like I took a break from listening to it for a while. And then I was like, I need something to listen to because I’ve listened to like all my other favorite podcasts. So I need to catch up. So yeah, trying to catch up so I can be like up to date. Because apparently they’re like on the sixth season,

Stephie
six books slash sixth season. And according to brandy, by the time you get to season six, there’s actually a plot. So I’m very interested in getting to the point where there’s actually a plot, so I don’t believe it. I will believe it when I see it. But also she hasn’t let us wrong in this podcast yet. So Brandi, we’re trusting you. Listen to all six episodes of Belinda blinked are all six seasons of Belinda blanks that we will get to a real plot point. Yeah, highly, highly recommend. So, this week, we are going to talk about something a little bit more serious than my Dad Wrote A Porno. We’re going to continue with our you know, we’re going to continue with our parenting and America series. So in case you missed the first episode of the series, we’re going to be talking to guests whose experiences as parents fall outside of the very narrow description of what our society considers quote normal.

Megan
This week, we’re talking to Allison Grigsby Sweatman, a Licensed Master social worker, law student and mom of two about parenting disabled children and her quest to educate on anti ableist parenting. Alison, welcome.

Allison
Hello. Thanks for having me.

Stephie
Thanks for being here. Tell us a little bit about yourself.

Allison
Yeah, well, I live in Central Arkansas. As you said, I’m a mom of two. My husband and I have been married for 10 years. And my kids are Rosie and Beau. They are six and seven years old. And I am a licensed Master’s Master of Social Work like you said and a law student part time while working full time. And I am in survival mode right now talking to y’all as a nice little retreat from

Stephie
me about people who don’t stop.

Allison
Yeah, I’m feeling this week I’m regretful of that part of myself, but you know, it is what it is. But yeah, that That’s a little bit about me.

Megan
So can you tell us a little bit about becoming a parent and what the early years of parenting were like for you?

Allison
Sure. Yeah. So, like I said, my kids are Rosie and Beau. They are six and seven years old, and they both have Down syndrome. And my daughter, Rosie has a long medical history. And this is confusing, but as a lot of families who have any adopted kids will say we’re kind of a mixed bag, so just try to keep up so Rosie Rosie I gave birth to so biologically and then Beau we adopted he is older though, but we adopted him after we had her. So Rosie is my first baby. She’s also my youngest. So weird, right? So when I was about 20 weeks pregnant with her, we found out we had the anatomy scan. And we found out that she had a large hole in her heart, a diagnosis called atrioventricular septal defect, or a VSD. And this is a heart defect that’s really common in kids with Down syndrome. So we chose to have genetic testing to determine whether or not she had Down syndrome. And we learned that she did. And so it was like all in one week, right in the middle of my pregnancy, we learned all these things about our baby. And she was born in August of 2015. And we took her home from the hospital after just a few days in the NICU. And we were told she’s going to go into heart failure. And she’s going to need to be admitted again to have surgery and so just watch her breathing. What monitor like her fingers and her lips if they become blue, if she turns blue, bring it to the ER is basically what we’re told and, and keep an eye on her. Like if her breathing becomes more labored and we were like what like

Stephie
to act up a ticking time bomb in your car seat. And so congrats have fun.

Allison
Uh huh. They’re like, it’s a matter of days. You know, and and we were really fortunate we had five weeks at home with her I sometimes I think back and like, I’ll daydream about those weeks, because even though they were very anxious weeks, we hadn’t had the experience of like a long hospital stay yet. And that was really what the first year of her life was completely marked by because five weeks later, we brought her in actually, for just a cardiology appointment, we were going weekly, because like, like you said, a ticking time bomb, for sure. And at that cardiology appointment, they saw that she wasn’t gaining weight, she was working really hard to breathe. And so they admitted her that was in late September of 2015. And we were there for six months. So she had two open heart surgeries, she spent time on a heart lung machine called an ECMO machine, which resulted in a brain bleed that required surgery. And at one point we overheard, this is not what you want a doctor say to a group of med students, this is the sickest kid in the state right now. They didn’t know that we were her parents. And we were standing right outside of the door. And we were like seriously, can you not? So that like I said, that was very much what the first year of parenting was like for us. It was just marked by that. And she did get to come home in March of 2016. And had several more medical things that cropped up over the next about year and a half. But we met them one after another. And she around to two and a half was pretty stable medically. And that was when we learned of her brother and were given the opportunity to adopt him. And we did. And He’s a year older than her like I said he also has Down syndrome. He doesn’t have the the slew of medical diagnoses or anything like that. But yeah, they share that extra chromosome. And people always think they’re twins. They’re one year apart. But and sometimes I tell people, they’re twins just so I don’t have to explain our family, you know, and be like, yes, yes, they’re twins moving on. But yeah, so that’s what the beginning of parenthood was like we we it was a wild ride. It was it was a lot but we’re, I feel incredibly fortunate. I absolutely adore my children, as we’ll talk more about but I wouldn’t I wouldn’t trade them for anything. I would take away the pain that they’ve both gone through in different ways, but I wouldn’t change one thing about them.

Stephie
They’re friggin adorable. Er, Beau was like, hilarious. i Yeah, he’s just a hoot and a half. Yeah, so this question, this is actually not a question that we prepared you for ahead of time, but it popped up for me as you were talking about, you know, that first year of Rosie’s life like being in the hospital and for six full months and her being so sick, and it does connect to kind of what we’re going to talk about later. Like how was that for you just as adults who had to function in the world and like, have jobs and make a living where your jobs? Like how how did how did that work, were you able to take time that you needed and not have to worry about, you know, paying your mortgage? Like all of those things? How did that function for you as parents of this very medically complex baby?

Allison
Yeah, so I left out a really big part of the story, because I didn’t think it would be pertinent. But now it is. But okay, the know that I don’t mind sharing at all. So whenever we got pregnant, or I got pregnant, we didn’t get pregnant on government. Whenever I got pregnant, we, my husband and I were living overseas, we were teacher, we taught English overseas in Asia. And whenever I was about 20 weeks pregnant, I flew home actually, just me, I flew home just to go to a family funeral, my great grandmother passed away and I came home just for that I was going to be here for about 10 days. And while I was here, I was like, Oh, let me just go to the doctor in English, you know, because I had been going actually had one doctor’s appointment in Thailand and one doctor’s appointment in China. And it was my 20 week mark. And I was like, let me let me get the anatomy scan in the States while I’m there. And so I actually never went back to Asia. And so my husband spent another month there, kind of like wrapping everything up teaching all of my classes for me, he was teaching to class loads to kind of wrap up the semester. And he rushed back or rushed, he was there. He was back here a month later. And so all the diagnoses and everything that happened that month of my pregnancy, I was relaying to him with a 13 hour time difference between us. It was so it was so hard. But he got back. He got to the States in May. I had been there since early April. And pretty soon after that, I got a job as a resident director at a university that knew us really well. We had worked there right after we graduated. And they knew what we were expecting by by the time I had applied and went through the application process. At this school, we had told them you know, we’re expecting a surgery within the first few months of our daughter’s life, you know, and we told them everything we knew, and they still hired me and we were so fortunate with that. They let me do a lot of work from the hospital. I basically I was supervisor to six RAS so we lived in a college dorm, Rosie those five weeks that we brought her home, it was in a college dorm, which I love. I think about those memories. And I’m like, that is so bizarre when I think about where we are now. But um, so yeah, it was a frenzy, we literally within the time that we found out about her diagnosis and realized we like I couldn’t live in the middle of Asia anymore. Because I needed we needed to be close to a children’s hospital, you know, within that time between that time and her being born, we had to find a place to live, we had to find jobs, all of that. And so pretty quickly after we got the job as a resident director for me, my husband got a job as an ESL teacher on the same campus, which was really great. So he just went back and forth from the hospital. And I basically stayed at the hospital the whole time, I would come in to my job maybe about once a week and do a meeting with my RAs and kind of put out fires from afar. We were we were really fortunate in that regard. And, and obviously, well, not obviously, unfortunately. But we had we had medical insurance, because I got that job so quickly. So that was we were very well taken care of. And it was, let’s say, in March, whenever we got out of the hospital, we realized we had to be closer to the hospital. So we because of how fragile Rosie was. And so we got an apartment really close to the hospital and my husband got a job. At the Apple Store, he worked there for a few years, right after she got out of the hospital and it was kind of just like, we just have to be closer so that if if she were to again, go into heart failure, or if we were to need need medical care quickly, we could get her to a place that knows her really well. So we did a lot of making huge changes in our lives just to kind of make sure she was well taken care of, you know, and we were really fortunate and privileged and to be able to do that and to have medical care throughout all of it. But you know, I think about now I I work full time now. And it would be very much a different situation. You know, like I have to look at my company’s policy to to see kind of what it would look like if Rosie were to have another extended hospital stay you know, there are a few options but you know, I would use up my medical leave and then it would be like What do we do now? You know, I So yeah, that’s very much a reality. To me, even though it’s not something we’ve encountered yet, I have a lot of friends who’ve had to do exactly that, though, for their kids, I’m sure Yeah,

Stephie
cuz I’m just thinking about, like, how quickly that FMLA leave will go, you know? Maybe 10 weeks at the most. And then you’re like, oh, Sol. Yeah, so yeah, yeah. Thank you for sharing that. Of course. Yeah, that surprised question.

Megan
Mm hmm. Yeah. So our society treats diet, disability diagnoses, especially in children as one of the most terrible things you can experience as a parent, could you share how you process your daughter’s diagnoses in particular, and how you were impacted by the reactions of those close to your family, and maybe even some of your family members?

Allison
Sure, yes, this is a huge conversation in I can talk specifically to the Down Syndrome Community on a on a personal level. And then I could share, like what some of my friends and clients who I’ve worked with in special education, kind of what they’ve gone through in other diagnoses, but so our diagnosis story is actually really good. We had a positive experience with a genetic counselor who I still text and send updates about Rosie to and she’s just phenomenal, she delivered the diagnosis and met me exactly where I was, in the moment, you know, didn’t sort of like impose or project negative emotions, you know, which is, which is what happens, a lot of times, my experience is rare. I know more parents than not, who have kids with Down syndrome are told some version of I’m sorry, Your child has Down syndrome they were given, which there is no reason to apologize. You know, they were given super dated information about things like life expectancy and happiness. It’s just delivered, like this agonizing death sentence, you know, and sort of this, this sadness is presumed and imposed and projected onto parents who receive that diagnosis, whether it’s prenatally or at birth. And there’s, there’s, the truth is there’s plenty of research and evidence showing great outcomes of things like self perception of people with Down syndrome. So life happiness among folks with Down syndrome, and just generally, they’re happier with their life than the average person. And they like who they are generally, more than the average person, like, these are things that we all want for our children, you know, and no one talks about those statistics, it’s just a lot of, of the harder stuff, which honestly, a lot of the harder stuff could be dealt with, with, you know, more research about why people with Down syndrome are more likely to have ABCD, diagnosis, you know, that kind of thing. So, there’s a lot that needs to change in the diagnosis experience across the board. But that’s what I know about, specifically Down syndrome. And then we had similar things happen with other diagnoses that Rosie received.

And, and it’s, it’s just, I don’t know, it’s hard, because I think that what I wish would happen is, is more or less what happened to us in and that is, kind of follow the lead of the person who you’re giving this diagnosis to who you’re giving this report to, instead of just presuming that this is like the worst thing that’s ever happened to them, you know, it, that presumption is what makes people I think a lot of times feel like, well, if you’re having this terrible reaction, this terrible, you know, take on this diagnosis that I’m hearing that my child has now, then I must, you know, I have to feel that way, too. You know, and, and, of course, a lot of people are really upset. You know, a lot of people do receive that. And it does feel like immediate grief, and it’s crushing to a lot of people. But the truth is, on the other side of all of that really, really difficult emotion, there’s a reality that has a ton of hope. And I guess I wish that professionals would maybe lead with that, you know, not necessarily give toxic positivity support people in whatever they feel but don’t impose a project. So, other diagnoses look a lot like that. Sometimes. I know a lot of parents, though, who it’s been very different for. I have worked with parents who have kids with Down syndrome, but also ADHD, autism, sensory processing disorder, and helped them sort of navigate the school system is what I did. And in many cases, they can’t access the services that they need educationally or otherwise without an official diagnosis. So unlike what I described, you know, the downstream community, parents in the downstream community experience a lot of parents are pushing for the necessary of valuations so that their child can receive the services that they need. And it creates this really difficult situation where a parent is having to have this deficit based perspective on their child, because that’s the language that the education system speaks. And that is not a place that you want to put a parent in, you know, but the parent knows that the kid needs these services. And so they’re pushing for this child to have these evaluations and having to advocate in a way that no parent wants to advocate, you know, so. And then I know that a lot of other parents of whose kids received those diagnoses, they’re not pushing for evaluations, they might, they might be in denial, you know, they might be very much caught off guard when a professional suggests that an evaluation needs to be done. And there’s a lot of reasons for that all of them come back to ableism, societal ableism, and internalized ableism. So it’s a very personal individual situation, I really wish that the perspective on disability in general, were different, actually just completely turned on its head so that receiving a diagnosis wouldn’t be something like that, it would be just more information about your child, your precious child, so that you can help them and help raise them as best as possible. Because really, that’s what’s happening, you know, a diagnosis is a list of symptoms. And so if you just look at those symptoms as presentations of who your child is, and find ways to support them best, I think that is a much better outlook than this sort of labeling and deficit based perspective that is often presented whenever someone receives that diagnosis.

Stephie
Well, and like you, just like you just said, like, it doesn’t have to be done in a in a toxic positivity way. There’s just there’s genuine research that they can show you, for somebody for so many of these diagnoses, whether it’s Down syndrome or others where they can say, here’s the research, like they don’t have to present it in a very specific way. But they could say, here’s the research. Yeah, not. Hey, here’s your 10 week blood test results. Do you want to schedule to terminate this pregnancy? Like yeah, oh, yeah, people are assumed that they’re gonna want to do so. Oh, yeah, for sure. So you know, you were talking about as you’re talking about ableism, you know, you I, when I when I think of you, I’ve been following you on Instagram, we’ve been Instagram friends for a while now. And one of the things that I always think about when I think about you is how you really just you have taken up this anti ableist parenting mantle. And I’d love to hear more about you know, what was the point in your parenting journey, where you really started to unpack your ableism, unpack the ableism, and the society around you and really start working towards anti ablest parenting? And what does that mean to you?

Allison
Yeah, so I would say that it started a few years ago, it was after we adopted Beau I know that because adopting Beau, he’s so different from Rosie and then also so like, but but the ways that He’s different from her really put into perspective, like that made me confirm my own ableism because their abilities are very different. And that that was like, how, how I began really confronting and digging into, you know, why am I having such grief over, over one child’s disability being different than another child’s disability, and that was sort of the beginning of it. And then

I also started going to therapy on my own, like for me and everything, and that brought out a lot of things. personal trauma wise that that really, a lot of it came back to ableism I didn’t mention this because, you know, it’s very much wrapped up in my own anti ablest pursuits. I don’t even want to say journey, but it is a journey. But so my dad was actually disabled he my dad was a wheelchair user. And so my entire life since I was 10 weeks old, so that not only am I a parent to disabled kids, my perspective as a child was framed by disability, my perspective on parenting as a child was framed by disability in that my dad was disabled. And so reflecting on that gave me a new sort of outlook on ableism. And thinking about the ways that my dad encountered ableism. And eventually, I just knew that I had to pursue it professionally too. So I started grad school and focused all my research on parental mental health and special education. And I learned quickly and certainly that parents of disabled kids are actually doing a lot of harm to the disabled community. And the deck is also very much stacked against them, like in terms of confronting ableism? How, how will they know how to do it unless they have an experience that is contrary to the most obvious, the most prevalent experience? Unless they experienced disability, with new eyes with different eyes than the rest of the world does? Why would they show up and parent their disabled child differently, and with an anti ableist perspective, you know, and so there’s a lot in the disability advocacy and activism community that disabled adults are really have really been hurt by the way that they were raised by their parents and the expectations that were put on them. It’s not unlike Stephie. It’s not unlike just adoption, there’s a lot of mirroring, you know, and in that. And so, I would say that that was it kind of started in terms of like my work. And what I wanted to sort of address was to try to help make that better to help parents be allies to their to their disabled kids and the disabled community. And then, by the same token, like the other side of that coin is to advocate for those parents to be supported, as they unlearn their ableism and try to raise their kids best. But the reality is that parents of disabled kids have to confront systems, just the two off the top of my head are the medical system and the education system, they have to confront systems that were not built for their kids that do not that claim to serve their kids, but are really incredible, they’re just riddled with obstacles to really getting the access and accommodations that their kids need. And so it’s really difficult for me, because the reality is, how can I tell parents to dig into anti ableist learning, if they’re spending literally 15, 20 hours a week, many of us, you know, on the phone, trying to get their kid the services they need trying to get them in with the doctors, they need to see, you know, it’s like literally, that there are not enough hours in a day, you know. And so, unfortunately, a lot of times, what happens is parents have to sort of have the wool pulled away from their eyes with something really difficult, like, like confronting them on a personal level, whether it’s a really bad experience with a professional, or something, and they just, they might come across the word ableism. And realize that, that ableism is, is what has affected them this whole time. You know, it’s it’s what has been making it difficult systemically for them to just get their kid what they need. And then I think that seeing it in a systemic light can often make people go inward. And once you start seeing it, you can’t stop seeing it in yourself and in all of society. So yeah, so that’s kind of what made me start thinking about it. And from when one thing led to another and it’s kind of been what I consider to be kind of the the core the anchor in everything I do, like, you know, law school, I, I am always thinking in every class I take, which is sounds silly, but like I’m in, I’m in a criminal law class right now. And every everything that

Stephie
I ran, I did, you can just find so much ableism and 100% right now. Yeah. And it’s like, oh, my gosh, oh, yeah, your brain is just going a million miles a second.

Allison
It’s just the lens through which I see. I see everything now, you know, and I really don’t know kind of what I’ll do with it, you know, but it’s the thing that if someone says, Hey, what’s the thing that you could talk about? What could you give a TED talk on? In 30 minutes? I would say it’s probably ableism and parenting. And so yeah, and, and I always want to say this. Everything changed when I started listening more to disabled adults, talking about ableism and anti ableism than I did to the parents, the influencers, you know, and that’s not to downplay people who are just sharing their experience as parents. Again, a mirror in adoption that we see is like sharing your kids story, you know, in adoption, like don’t share your kids story. It’s true of, of parents who have kids with disabilities. So often they’re just like, sharing like, I even I’ve given I’ve scratched the surface of what Rosie has been through medically in like, just now talking to y’all but uh, but there was a time when I would just tell you everything, you know what I mean? Like tell you every diagnosis, everything that happened and it’s like, that’s not really mine, you know? Like, like, it’s this, it’s this balance that I have to find. So all that to say, Yeah, listening to activists, disabled activists and advocates changed the game, when I started listening to them, as much or more as I was listening to my fellow parents, I think that was really when everything took shape the way that I think maybe it needed to.

Megan
And I would think that one of the obstacles that has made it difficult for parents to be able to confront that ableism within themselves and in society is that it was not that long ago, when disabled kids were like, shuttled off to homes, and they weren’t in society. So there was a whole generation generations and generations of people that are just missing that experience.

Allison
Yeah, yeah. And, yeah, that’s why I say like, what? How could a parent who finds out that their child has Down syndrome, for instance, who has never had a positive perspective, or interaction or any sort of inclusion of individuals with Down syndrome in their own life? Maybe when they were in school? or what have you? How could we expect them, you know, like, they love their kids, but nothing has set them up to parent their kid well, and, and have a view of what their child is going to go through in the systems that they’ll confront and the systems that claim to help them you know, and so, there’s so much there, that’s why it’s always in and for me, you know, I’ve seen and heard a lot of what adults with disabilities say that they went through because of choices that their parents made. And the truth is, the systems have to change the systems that are giving the parents the advice have to change, right alongside that unlearning the internalized ableism. So,

Stephie
I mean, like I an example of that is like, when we listen to autistic adults, and they talk about how harmful ABA therapy is. But that’s, you know, it’s, it’s I think so often that is that parents are told, like, this is what your child needs, like, yeah, to give them their best shot. And so parents like, well, I want to give my kid the best their best. Yeah, so this is what I need to do. And yeah, you know, and even just rethinking, you know, I every thinking, so Eden will be to next month, and you know, you go do your you’re like 18 months and two years and you’re doing your well child checks, and they’re asking you these questions. Very clearly they’re screening for autism. Oh, yeah. Like there is this initial like, in your gut of like, Oh, my God, they gonna say, I’m sure find yourself like, she’s still the same kid. Exactly. And if I answered all these questions, and they said, you know, what, we think that she might have autism, she’s still the exact same kid that I have been parenting all along. And that doesn’t change anything. Yeah, just like, there. And I mean, that’s, but that’s been a process even just for me to get to, from learning from you. And from, like you said, listening to adults with all sorts of different disabilities. And so I think it is something that we all have to work on. And, yes, whether whether we are parenting disabled kids, or whether we have disabilities or not.

Allison
So yeah, the the talk that you just described giving yourself, I’m going to leave this doctor’s office with the exact same kid that I came in here with, I cannot tell you how many times I’ve given myself that exact pep talk while answering questions about like to screen, my kid for something. I mean, it’s it made my heart sink into my stomach when you said that, because that’s exactly what it is. And it’s so hard to have that perspective, because there’s just there’s literally like a milestone industrial complex, that profits off of you being obsessed with your kid doing a certain thing at a certain time, you know, what I mean? And not having certain traits as well, you know, and I’m not saying before, before, occupational therapists come at me, I’m not saying that, you know, milestones don’t matter, but there is definitely a focus on it. That does not have to be cool white, so intense, you know, I, I’ve it took me a while to sort of confront that too, because it’s so prevalent, it’s on every toy you buy, you know, it’s in every, every class that you’re going to attend with your little one, you know, it’s like it’s for this age. And, and there’s also that that was one thing whenever back when we kind of thought that we could be the change in a really, you know, fantastic church that we were part of at the time. I would go to them because I felt really comfortable. Doing so about a lot of things. And one thing I did say was, you know, I think Rose is going to be in the in the class with like, like if you say that this class is for the kids, who are toddlers, and then once they can walk, they get to graduate to the next class. And that’s the language that’s used. It really is all about when can your kid walk, that’s when they get to go to the next Sunday school class, the next level or age of Sunday school class. And I hit already confronted the fact that my daughter might not ever walk. And she’s a wheelchair users. So what do we do with the fact that that’s your measure of when she moves up? You know what I mean? And, and, I mean, that was a great conversation. That was a really, because they were fantastic to really hear me where I was coming from with that, but all that to say, those, the milestone language is really slapped on everything, and it can become really hard to talk yourself off a ledge as a parent. Yeah,

Stephie
I don’t know if you I don’t know if your kids are into the TV show bluey or not? No. Okay. Well,

Allison
we’ve watched it once. Well, you guys

Stephie
need to get into it. Because it’s okay. We’re slightly obsessed. But there’s this episode of the second season. It’s called Baby race. And identify with this episode so much because Eden was a delayed Walker. And in the episode blueys mom is like, sees these other this other baby that’s like, crawling before, Louis, and she’s, as she’s walking before her, she’s like, Okay, I gotta get her walking, I gotta get all these things. And the end, she just like, feels like oh my gosh, she’s not she’s not running the same race as these other kids. And yet, she finally said to me, like, run your own race. And she had to have like another like a kind of a veteran mom come to her and say, like, you’re doing great. You are doing great. And so I just I always think of that episode. It makes me cry every time I watch it. Oh, yeah, that’s fine. You know, just this, like, run your own race. Because there are so many of it’s such a competence does not help me or Tina competition and many stinking ways.

Allison
Yeah, yeah, there was a girl I went to high school with and like, there’s no malice in this story. I’m about to tell you please understand. But this girl I went to high school with, and I played basketball with her kid was born around the same time that Rosie was born, edited. And at 11 months old. She was catching a like a like a small, like a baby size basketball. And walking, walking up to the hoop and putting the ball in the hoop, you know? And I was just like, Oh, yeah. Yeah, yeah. And don’t talk to me about it. No, I’m kidding. But, yeah, again, that was something that I had to work through, right? You know, because it was like, why is there such grief here? You know, like, I think that, you know, really, really generous, and as much as possible, shame free curiosity, about what comes up is key. Because that was, that was what I had to do in times like that, you know, whenever, whenever the milestones were, you know, I’ve seen them all over social media and everything. So

Stephie
absolutely. So you kind of you’ve hinted at some of these, but what are some of the biggest challenges that you face as a parent to disabled children in our society?

Allison
Yeah, so education is always the first thing that comes to mind. Special Education is such a mixed bag in this country. It was already something of a shit show. And then we added a pandemic to it two years ago, and things have only gotten worse. And I really think that the pandemic dropped the whole education system in hot water, and now we’re seeing a lot of the systemic issues that cannot be ignored anymore. And it’s just been really, really hard on families who have kids with disabilities, it was already hard. But I would also say that once I started understanding ABL as understanding ableism, I saw it everywhere, in myself and in the systems around me. And it has been really hard and it continues to be hard to come to terms with the magnitude of what needs to change because it’s in, it’s in everything. The other day, I saw a Twitter thread. And a friend of mine who has a child with a lot of medical complexities a lot like Rosie was talking about how susceptible her son is to severe complications if he were to contract COVID. And someone commented that people with kids like that shouldn’t take them out of the house if the world is that dangerous for them. And I was so angry, of course. And I, it was the first I’ve seen things like that, you know, like, I’ve seen opinions like that. So, so many times. But it was just a reminder about how prevalent that is. Because there, there was a lot of people who were saying, you know, like taking no issue, you know, with that. And that was a really harsh way to put it. But some version of that idea exists systemically, right. And in a lot of systems, some version of we put kids who are not up to a certain par, academically, intellectually, etc, we put them in a different place from everywhere else from everyone else from the general population. And we can find reasons for that, that check out that make us not look so terrible, that make us look like we’re a system that’s here to help every kid but at the end of the day exclusion and isolation is the result of, of all of that. And so this idea that there’s a place we have a place for people like you, we have a place for people like your kids and and just trust me, it’s what’s best for them. That idea is a more palatable version of that tweet, you know, and I, that was just last week, and I was kind of numb to it all. And then that tweet sort of woke me back up. But that that perspective, that very harsh way of putting it really woke me back up to kind of what families like mine are facing. Because we we are we do feel even more isolated, you know, in the pandemic, not to talk about the pandemic, God, we’re always talking about it.

Stephie
But I mean, it’s a years we’ve been hearing like, oh, well, the only ones who are like, likely to, like old people and disabled people and chronically ill people. It’s yeah, and you’re one of those three,

Allison
which is right, right. Cool. Awesome. That’s great. Yeah, yeah. Yeah, just collateral damage, you know, or at least that’s the language that’s being used. And it’s just, it’s just the worst, you know, so anyway, I don’t think that that’s the question you asked me, but yeah, it’s that that’s one of the biggest challenges is just like those moments when I see a hot take that is so offensive, and seeing how acceptable a lot of people see that hot take to be, you know, like, oh, we should just you like, you just shouldn’t leave that house. I’m just like, okay, okay, so isolation, just like from the beginning of like, okay, the way that special education came to be in this country was in 1975, Congress found that over what is the 1975, over 1 million kids with disabilities, were not being educated, they were being turned away from public school systems all over the country, and Congress found out about it and was like, you know, what, that’s not cool. Like, that looks really bad, you know. And so it’s just this culture of isolation, this like acceptable isolation and relegation to the margins that when I when I realize that a new and it’s gonna happen again, and again and again, throughout my life, and that has nothing to do with my kids that, like, I think that is what I wish for parents who are raising disabled kids is that they can, they can see that shit. And they can process it, they can process their own feelings toward it. And they can separate that from who their children are, you know, like you said, if someone if someone were to give your kid a diagnosis, and a doctor’s appointment, you would walk out with the same kid. And you you, you should be able to access the same joy in that kid, as you did before. And when I see people say terrible things like that, I had to fight really hard to get to a place where I can compartmentalize that comment, from whom, who my kids are, how I am raising them, and what I am fighting for, for them, you know, I don’t want to ignore it altogether and go numb to it. But I also can’t conflate it with like the reality of who my kids are. You know what I mean? Totally.

Stephie
I do want to circle back real quick. We were talking about education. And I know, like you actually have sort of specialized in putting together IEPs because that is such a shit to use your own words, a shit show. That, you know, I think so many people who don’t, who have not had to have an IEP for themselves, or put one together for their kids. Like, I know that you’ve helped a lot of parents put those together. Can you talk about that? Just real quick of like, sure. That literally like navigating education system in with like, helping your child with something that they really need is so difficult that people need to hire basically a consultant to help them

Allison
do it. Oh, yeah. Yeah. And so I’ll say this. There, there might be people who listen to this podcast who are like No, my IEP is great. My My district is great. And I feel really heard as a parent, you know, like, whatever it is. And so it’s, it’s really tough because it’s a mixed bag like we’re talking about, district by district, everything is so different, and even school down to school, by school and classroom by classroom. But on a macro level, parents are really, really struggling, I think. And here’s what I can say about like, federal level special education law, the Individuals with Disabilities Education Act, the IDA, which is what gave the IEP two kids with disabilities said, you know, we’re going to have this document that has all the services, all of the special education and related services that a child will have access to, and that they are entitled to because of their disability. It’s all in this document. And we’ll have a team of therapists and teachers and the parents, who can sit down and come up with what will give this child a free and appropriate public education. That set of laws to ensure the rights of disabled kids and education was enacted in 1990. And it had a predecessor in 1975, which I talked about before, but it was changed to the IDE in 1990. It was reauthorized in 2004 to comply with No Child Left Behind. But no substantial updates have been made since then. So yeah, 2004. So we’re 18 years out. And it is absolutely time for an update, and an overhaul even so think about what we know. And even just the societal perspectives and understanding around things like autism, ADHD, sensory processing, disorder, PTSD, CPTSD, adoption, and everything. You know, like, all of these things, we have, like a lot of these, these are diagnoses that you see on a kid’s IEP. And we know so much more about them now. But we’re, we’re working with a set of laws that’s 18 years old, you know, and so there are a lot of professionals in the system whose hands are tied by you know, this is what we have to do this, this is how we can comply with federal law, you know, and so, first of all, it needs an update. And then there’s also so little funding compared to what Congress promised when it enacted the IDA, it’s barely 40%, funded, barely 40% of what was promised has been funded. And that’s atrocious. And so many times the unspoken truth at an IEP table, is that there’s not enough money to give the kid what they need to provide the service that the parent is asking for. And then you have professionals and administrators whose hands are tied, and they’re over here trying to do their very best with the funding that they have. And, you know, I mean, that’s true across the whole education system, not just special education. So all that to say, we just have such a long way to go. And I don’t feel hopeless. But it’s just not a priority right now in Congress, for so many reasons, not the least of which everything is politicized. Right now we’ve got a whole pandemic to get out of, you know, or at least learn to deal with. And so yeah, that’s, that’s what I would say on a macro level, I always have to zoom out whenever I’m talking to people from all over the country, because the truth is, every, every place is different, but at the very least we should be funding it better than we are. So

Megan
yeah. What do you wish more people knew about raising disabled kids.

Allison
When I brought Rosie home from the hospital, I had been the first time I had been connected with a friend, a new friend of mine who had a daughter with Down Syndrome and a heart defect. And I called her so emotional because I was overwhelmed by like we said, you know, they gave me this baby. And they were like, by the way, her hearts gonna fail. You know, let us know when that happens. It was so bizarre. Um, so I called this this person who she was a stranger at the time, honestly, we had a mutual friend and I called her like, you know, here’s what they told me. I know that you’ve been through it, you know, and just asking for something. And then I had all these big picture questions too. And she said to me, the future is bright for people with Down syndrome. And I, I cannot tell you how many times I have come out of such a dark, dark place not to be just like completely, I don’t know, allegorical, poetic here, but I’ve been in really dark places. And whenever like I said, I confront the reality of kind of what people say about about my family, my kids and how they think of us and The future is bright has been something that has gotten me out of those dark places. Because it’s, I believe it, I believe it like, I can’t say that and not believe it. I can’t promise that these systems will change even in my lifetime, or even in my kids lifetime. But I really believe that the future is bright one way or another, for people with Down Syndrome and for the entire disabled community. And I just not just because I have to believe it, to keep going, but I do believe it. And then also, there’s more joy than sadness for most of the parents who I know. And then the sadness that we experience is largely because of the systems that I’ve been talking about in the stigmas that I’ve been talking about. And those, like I said, have nothing to do with your child.

Stephie
So, you know, I was, we always like to try to have a little bit of a takeaway, something that our listeners can do, especially when we’re talking about a topic like this. So what are some of the ways that our listeners can support anti ablest parenting in America both, you know, on a individual level, and on a macro level, whether or not they themselves are parenting at all, much less parenting disabled kids? Yeah.

Allison
So on an individual level, I think that learning about ableism alongside your learning about lots of other isms, which I which I think is is something that thankfully, a lot of us are doing, but understanding how a lot not a lot how all oppression is connected and intersects in many different ways. And add, add ableism to that list of things that you’re learning about to to the list of populations who you’re realizing have been shortchanged, you know, throughout history add add the disabled population to that. Oh, I don’t have a list right in front of me, but follow disabled creators on Instagram and Twitter and Tik Tok? Yeah, I can probably get your list if you want to put them in your show notes. But yeah, and so and then. So that’s on an individual level level. And then assuming that you do you have ableist tendencies and try to root them out assuming that you’re an abled person. And as far as raising, raising kids who are not disabled, I get that question so much. More than more than any other I would say, I have a lot of books that I can also recommend I can get you that list, but then raise your kids to see disability as a difference and to like really see it in as something to be accepted and accommodated and not feared or ignored. I think that the oh, just to just like Don’t Don’t ask any questions, you know, don’t say anything. That’s something that I see a lot and that I know a lot of parents tell their kids, you know, for fear that their kid will offend someone you know. But I think that allowing kids who don’t have disabilities to remain curious, is something that will be helpful, rather than fostering this sense of sort of fear in them. And then on a little bit of a more macro level, if you are involved in your local public school system, and there are any meetings that you can attend, that are maybe a school board meeting or something like that. Or if you’re already participating in those, just ask yourself, Where is the representation for special education issues in this anytime education is spoken about? Ask yourself, What about the kids who access special education or any type of special education services? Why Why aren’t they even part of this conversation? And you can do the same in every other system. But I know that education, like I said is where I’ve spent most of my time, ask the people in charge of not just those spaces, but other spaces you’re in, whether it’s your church or whatever, why there’s not a wheelchair ramp or whether or not they can accommodate various disabilities. It’s the kind of thing ableism that once you start seeing it, you see it everywhere. You see it in yourself you see it all around you and so notice it be gentle with yourself and never stop learning.

Megan
How can our listeners connect with you and follow you?

Unknown Speaker
You can follow me on instagram that’s probably where I’m the most active although Law School has taken me away quite a bit. But I am AllisonGS_LMSW. And that’s where I connect with people most often, I’m also on Twitter. And links for that can are going to be found in my Instagram bio.

Stephie
And we will make sure to tag you in our Instagram posts and also link in the shownotes for you guys as well. So thank you. Oh my gosh, thank you so much for joining us tonight. Allison. And you know, sharing your story with us. I learned I I’ve been learning from you for years, but I learned stuff tonight. So I just really appreciate you know, coming on and having this conversation with us.

Allison
Thanks for having me. I really appreciate it.

What’s bringing us joy this week?

Stephie
So we have each week with what’s bringing us joy. So Alison, you go first. What’s bringing you joy this week?

Allison
TV, the ability to just fully check out. I haven’t needed it so much. And specifically, we watched the entire show succession over the break. Have y’all seen succession? Oh, no, no. Oh, it’s very good. It’s very, very good. It’s a lot of dark humor. Which I love. Yeah. And we’ve also been watching a show called righteous gemstones. Have you heard of that one?

Stephie
No. Oh, I think hBo

Allison
hBo I think it’s also HBO. Yeah, that one’s good. And then also search party. Oh, I

Megan
was still I haven’t finished it but this last

Allison
season is super weird. We’re not done with it yet. But and then also, I’ve just been going back to my comfort show is New Girl. Like I just I just am always like I can just watch any any new girl episode and just laugh So

Megan
did you know that in every episode of New Girl there’s a reference to a bear? No. I learned it like a couple days. Oh, yeah.

Stephie
Well, this texted me and she said well, now I have to rewatch Yeah, I was gonna say

Allison
start from episode one of season one now. Oh, my

Megan
goodness thing. There’s this there’s either a mention of a bear or a picture of a bear

Allison
will and you know, Josh Gad plays the character bear claw. Yeah, in that one season. Well, he comes back in another season. But yeah, he hats really funny. I bet that helps them make all those references. Oh, my goodness. Thank you for that.

Stephie
I love it. Because Psych is like similar with its pineapples or something for that one. Oh, really? I think so. There’s like, I’m pretty sure it’s like it’s like there’s a pineapple on every episode or something goofy like that. So that’s like another one where you’re like I can watch I have a little scavenger. Ah, yeah. Well, now now you have your your non law school homework, fighting old bears, right? Can’t wait

Megan
to start new girl from the beginning. Stephie what’s bringing you joy.

Stephie
So we’ve watched Encanto approximately 800 times and our horse same, but the soundtrack just still brings me joy every time. It’s so good. It’s just really excellent. The songs are catchy. And I just I love I love them.

Megan
We do have a beef with a friend today who only gave a concert with 3.5 out of five stars. And I was like, I do not have enough time in the day to explain why you are wrong.

Allison
It’s so lovely. It’s such a good movie.

Stephie
I know Kathleen and I were given out we’re raising her in Texas. She was like she’s in this long time. So she’s like, I looked at these things and I was like girl we still love you all have things that we can be wrong about it’s toxic Enneagram one was coming out because I was like

Allison
but this is object Yeah. Like

Megan
I just decided that she has like less trauma in her life and the rest of us. She doesn’t like it as

Stephie
my boss watched it with his his kids. I don’t think I don’t think he finished it yet. But he was like, he was like, I don’t know, I don’t know about it yet. And I was like, Oh, you gotta watch it like five times in a row and just really let that generational trauma bubble up and you really feel it

Allison
really sit with each character each individual time, you know?

Stephie
Yeah. Like Give me this. I don’t think he knows what to do with me, but that’s fine.

Allison
Yeah, I have a friend who she doesn’t have kids. And she’s She also like she hasn’t seen Frozen for crying out loud. Like, she hasn’t seen very many animated movies at all. And I get the sense that she’s kind of anti that for herself. But she also is a person who checks the bill Billboard Hot 100 every morning and we don’t talk about Bruno was never for this She sent me a screenshot and was like, okay, maybe I need to. I was like, Yes you do. So it’s taken over. My gosh, I

Stephie
love it so much. Did you guys have you seen where in when they’re singing? We don’t talk about Bruno when it’s Dolores is singing like you can see Bruno on the balcony in the house in the background. Yes. Like yeah along and there’s like, there’s much debate and some of the Facebook groups I’m in as to whether it is him or or it’s the cousin the whose name oh my gosh, it’s escaping me right now. But shapeshifter, yeah shifter cousin. But I think it’s actually Bruno. So anyway, Megan was bringing you joy.

Megan
Delegating cooking dinner, yes, my kids are old enough now that they can cook dinner together. With either very minimal or no assistance from me.

Stephie
I thought you were gonna say fighting? No.

Megan
I mean, actually, it’s it has been minimal fighting, but overall hasn’t been too bad. But I can just be like, I have them pick out what they’re gonna make. And then they are in charge of it and don’t have to worry about it. And even if I like do have to give them instruction, like yelling from the other room or something, it’s so nice to be able to do that instead, right? Like,

Stephie
have you just about what you have to do with your husband too. So like, I

Megan
did have him make dinner tonight. And it took so long.

Stephie
Like I have something I need to be and do 30 things to do.

Megan
Why I purposefully have him only do like home chef ones because they have the instructions and everything’s already there. And it tells you at the bottom, like how long this recipe should take you to make. And he had already like hit the time and he had started cooking it yet. All the time shopping. So

Stephie
Edie is like reached the point where we you can give her very, very simple instructions to do things and like you kind of have to repeat them at times. Take this bowl to daddy in the kitchen. Okay, daddy in the kitchen. Depending on how far you are from the kitchen. You might have to say it a few times because she gets distracted but I’m also like, ooh, am I on the I Am? I’m well on my way to having a kid who can do the dishes. This is good. Yeah, for this. Yes.

Megan
emptying the dishwasher. I almost never have to do it anymore. That’s nice.

Stephie
That’s the worst part. Yeah, no, man. Excellent. Excellent job all around. Ladies. I know. I know. We were trying to think of what what our joy was, but

Next week’s episode

Megan
I mean every week’s a slog, so I’m gonna have a little spark. Well, next week marks a huge milestone for our little podcast. It is our 100th episode.

Stephie
We cannot believe it. So until then, we’re gonna have something special for you guys next week. But until then, leave us a review on Apple podcasts and listen to us on your favorite platform. You can also follow us on social media at IRSIpodcast or send us an email at idratherstayinpodcast@gmail.com We’d love to hear from our listeners.

Megan
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Transcribed by https://otter.ai