Kate Bowler: We often have very romantic expectations about parenthood. We will be the kind of parent who never bribes their kid because of course they will be tiny little angels and always less than the first time, and we will do everything exactly opposite of how our parents raised us because we know better now. Until, of course, you realize you have just become your mother and our kids will follow the path we’ve carefully laid out for them. Ivy League, for any kid because of all that baby Einstein I gave them.
Kate Bowler: Or maybe they’re a professional athlete, because did you see the way he winds up to kick a sister? Just joking, joking. Totally. So often parenthood is about a mythical child who will be perfect in a way we haven’t quite put our finger on. And the journey to love them will teach us something reasonably easy about ourselves. But what if we are not the parents we thought we’d be, or our kids are not the kids we thought we’d have? I’m Kate bowler and this is everything happens. Writer Cami McGovern’s oldest son, Ethan, was diagnosed with autism as a small child. She was determined to prove doctors expectations wrong. She set out to build systems and change policies that allowed him education and meaningful friends. Soon enough, though, he was not just a toddler learning how to play or a child needing adjustments in the classroom. He is an adult who wants to participate in the world like everyone else his age, and Cammie is still determined to learn what it means to be an advocate for him and others living with disabilities as they enter adulthood. Cammie McGovern has been widely celebrated for her work advocating for people with disabilities. Her book, Hard Landings, is a memoir that stretches between love and policy and everything in between. As she writes about her son and his future, I think you’re going to love this conversation. She is incredible. Here we go.
Kate Bowler: So often we have these very romantic expectations about parenthood, like parenthood is about this mythical child who will be perfect in a way that we haven’t entirely put our finger on. And then and then the journey to love them teaches us something reasonably easy about ourselves. Yeah. Like what a what a hallmark movie.
Kate Bowler: Yes, it’s such a founding myth. I imagine that, like learning to be loving in a grittier way is like the the place where maybe you started?
Cammie McGovern: Yes. Every parent of an autistic child who gets ultimately whenever they get diagnosed on this, it’s often because there’s such difficult behaviors that are so terrifying to live through in public. And you have such moments of pure, unadulterated shame or embarrassment when your kid is melting down in the grocery store and you have to abandon a full cart of groceries. There’s any number of occasions of that because you, you know, you can’t make it through the checkout or a birthday party or something you know they were looking forward to. There’s there’s exquisite kinds of agony because, you know, your kid wanted to be here and then could not hold it together for the length of what he wanted to do or communicate his appreciation for being included. I used to watch other parents struggle with those moments, and I used to tell myself I would try to say, Be proud of how you did this. Don’t worry of how it looks because you look like a terrible parent. More often than not, you’re carrying your child out, you know, pin wheeling legs under the arm. And and I would watch other parents do that and think you’re doing the right thing, you’re doing a good job. And I would wish that I could run after them and say that. And now, when it started to go a little bit, it got a little bit where it was just like a random slight outburst or something. I would have a surprising number of strangers say I have one at home or older women that says, Oh, mine is 30 and it would be seven at the time. And I would think there’s a there’s a network of us all trying to love our kids because those are brief times and they don’t last forever. I mean, I can definitely reassure you, the years of Ethan being really hard to predict in public are long in the past now, and so you get through them. And one great elementary school teacher said, let those moments happen and teach them how to recover from them and how to come back from them. And that’s what you’re looking for a recovery time and you’re looking for. Let’s try again. Let’s go back in to the party. Let’s see if we can hold it together. And every time they do that, it’s a victory. And every time they have the pleasure that they want to do, it’s it’s an achievement.
Kate Bowler: Yes. You write so beautifully about the early moments of disorientation and. Attempts to figure out what the first seems like, the first step for understanding is is like a. As a set of of language that becomes a diagnosis like the diagnosis almost creates like the scaffolding around which you’re trying to build this life together. And. And yet the the language around the diagnosis is just it is. So it is so it can be so painful, especially when it feels like it doesn’t understand who your child might yet be. You had a doctor who filled me with a kind of rage that I just, if you don’t mind starting there, like what was that experience like for you of getting of a diagnosis?
Cammie McGovern: It’s not an uncommon experience. Yeah. So what is usually happens are more often than not is you’re waiting three months. You finally accepted that you need to get some help and then you’re shocked at how long it takes to get to a neurologist and then you get to the neurologist. And he specialized this guy, specialized in epilepsy, something else. And so it was very quick. Or at least for us, it was less than it was about forty five minutes. So less than an hour. And he just sat with Ethan, who was at the time. And this is often the case. He was actually quite a social kid, not good, pragmatic language, but he would wave and he would try to get people’s attention and he would sing songs and show off. He’d had all these different things that didn’t seem autistic to us. And I think that he felt his job was to say, No, this is autism. This is autism, too, that you can be social, which it turns out is true that autistic people are very social and very interactive and very confused by all the rules around socializing and with all these other deficits of play. Ethan didn’t really understand play and language answering questions. The back and forth of questions was always really hard for him. But then he told us in the same breath as telling us, No, this is autism, he said. And you must begin to lower your expectations and he will. You’ll be lucky if he ever has a job, writes a check, which was an odd thing for him to kind of fixate on. He’ll never write a check, and you’ll just he’ll just be trying to learn some measure of independence and that’s what you should be doing. And he was three years old at the time. But this is not uncommon, and it was one of the mysteries that I think fires parents when their fires and rages. You try to prove a doctor wrong. And in fact, I, you know, got together with a group of wonderful, really energized fellow moms and we found it a kind of after school resource center that was all about one of our kind of calling cards at the beginning was, let’s prove all those doctors wrong about what and we have kids with a wide variety of disabilities.
Kate Bowler: You rose to the occasion.
Cammie McGovern: Well, yeah, which is that we don’t know them and our kids are going to surprise all of us and do things if they’re given the opportunity. And it was true. I mean, they did. But it was also true that there were some cautionary elements that he was saying that it’s OK to consider for parents, too. But I think we couldn’t consider it until later on. Until Ethan, it was better to be fired up. It was better to be. That’s your job in the beginning is is that you’re going to go. You know, we’re going to push this and expose Ethan and give him as many opportunities and chances as we can.
Kate Bowler: Yes. Yes. Though the language of unlimited agency is familiar to me.
Cammie McGovern: Yes. Yes. Feel.
Kate Bowler: Yeah. In the background of you learning how to be Ethan’s mom with this diagnosis and that moment in his life, you also have this long family history which mirrored much of our our society’s reactions to people with disabilities. If you wouldn’t mind telling me about your Uncle Hank. Yeah. And and and your Aunt Margaret, which we now would have very different categories I imagine for and their experiences.
Cammie McGovern: The story started with my grandmother’s older brother, who had some kind of developmental cognitive disability, and it was very unclear how he came by it. And it still is because at the time and this was in the early 1920s and 30s, there was a eugenics movement that was very that was growing and very powerful in this country, as powerful as it was in Germany, and that the idea being that if we could weed out inferior genes or the inferior stock of the country, we could produce a better human and it would be for every society’s betterment and everybody’s betterment if we got rid of feeble minded as they were known. And so the idea was that we would institutionalize the feeble minded and keep them from reproducing, and we would spare all of the heartbreak that went along with that. And then the the sticky part came in how we define feeble mindedness and it it swept in everybody with epilepsy and everybody with mild intellectual disabilities or differences of any kind cerebral palsy. So what families did at the time was protect themselves and say this isn’t a genetic issue. It is an issue to do with. He got meningitis, so there were several different causes that that was blamed for his disability. And then his parents had tried to him mom his family. His father was the was the local doctor. So I just feel like they were trying to do a heroic thing that was against the norm at the time, which was keep him at home until he was about 18. Then he was institutionalized and this was in Augusta, Georgia. Later on, my my grandmother had late in life, baby that she named after herself, Margaret, and which is my middle name, too. There’s just a funny that I always felt connection connected to that baby. Margaret, and was born when my dad was 11, was a worry that she might have something wrong with her because she was born when her mom was 40. And indeed, she was fine for a year, and then it was clear there was something wrong with her. It was a combination. The mother is my grandmother’s memory of having her brother live at home and the doctors very much saying You must institutionalize her for the for the good of your other children. There was no choice given I never registered or realized is that there were no options because there was no schooling available. There was no schooling or education mandated for anybody with disabilities at that time, so it really gave parents no options. And she died in the institution about two years after she was put in. But I feel like those would have been absolutely Ethan’s. Previous the previous iteration of his life, and that would have been all of our kids now in this growing autistic community. And you have only to look at what those, you know, old footage of those institutions to see, Wow, did we ever dehumanize? It’s just it’s just shocking, and it’s scary for a parent to look at it. Don’t don’t look at those but know that that’s where we’re coming from. That’s what we’re coming out from underneath the shadow, the shadow that is cast upon them. Now I feel like we’ve come out, we’ve come a long way out and nobody is is putting anybody back in institutions or separating them from their family. Yes.
Kate Bowler: The world has come such a long way, and yet it’s still not. Good enough. And as you discovered navigating and outright raging and creating incredibly wonderful structural communal solutions, you’ve been navigating these complex institutions on Ethan’s behalf. I mean, as as you write, Ethan came of age in the very first. Educational attempt to create a fully integrated. What’s all the what’s the right language here? Because I remember this from growing up, but you know, I’m from Canada and we had like slightly different acronyms for how this worked.
Cammie McGovern: Inclusive education, mainstream educations. Yeah, I’m sort of curious when it began in Canada, I wouldn’t have realized this, that that the law didn’t mandate that kids with disabilities had to be educated at all until nineteen seventy three. But at that point, it was fine to put those kids for four districts, to put those kids in a church basement or a separate facility or school basement or something. And it wasn’t until 1990, and with our law that IDEA that really changed everything because it put kids in mainstream schools with their peers and their siblings. But it also put parents at the center of an of the education plan as well, and there was nothing else in public schooling that brought parents in on it to say, You will help u s decide what you want your child to learn and you will set goals and benchmarks and we will work together. You will help us understand your child if they are hard to understand and if it what is a reasonable goal and what isn’t. And in a way, that’s one of the challenges parents of young kids is trying to figure out what’s reasonable expectations, what are reasonable. And I tried to talk about how hard that is because you’re pushing for things that may not be reasonable, but at the same time, it is such a gift to be able to say, let’s not worry about mathematics, or let’s not worry about something else. I want this child to be able to cook his own meals or to achieve a certain level of independence that you will. You will know your child and what you want them to learn before they leave school, and you will be working towards that. And that’s a gift. That’s it really is.
Kate Bowler: You spoke about the galvanization that you experienced in this in this long stretch, when he’s not just a toddler learning to play or an elementary school and needing extra help with math or even as a teenager. But just as this move into into manhood, as in adulthood, someone who wants to participate in the world and wants the same things as his peers want and like hobbies and, you know, friends. And I imagine for any mom, after having seen so many different iterations of his sort of participation in the life of his school, that must have been a an incredibly disorienting to know what, what, hope, what or what hope for the future should feel like.
Cammie McGovern: Yes, that’s kind of a good way of putting it. It’s a journey for many kids, as was for Ethan, is that gradually school becomes more manageable. Life becomes easier. And parents can be reassured that by the time they get to middle school, there’s others new, you know, new challenges and different kinds of challenges. They have found an equilibrium, and then you face this daunting what happens outside of school? Where is their place and where is their community? And where can they belong? Because school became for Ethan, a genuine community, and I think that’s what’s happened. The great gift of mainstream and inclusive education is that there were kids that had known him from elementary school. And mind you, Ethan is not high achieving or he participated in the musical and other a few other mainstream classes and did art classes and that kind of thing. But he had kids that he could high five with and have inside jokes with, and especially staff and adults that he could interact with. But where would he find those in the real world and in the outside world? The transition starts in most states at age 16, and you’re meant to the focus of it is on life skills and on vocational skills. And very much the focus is on finding is work readiness. And that’s a good thing because for years they were told none of these kids can work and we should all have our eyes open to the fact that many, if not all, can work can do something. They should be urged to explore those things and given the possibility to do them. But it’s a complicated business, and it was very complicated for Ethan. And part of it was that working also was tantamount to working in the community, which meant working in the in the wider world. So. At a yes or at a grocery store. And those were hard places for Ethan to control his impulses and his joyful stemming is what we call it when he’s bouncing and talking to himself and flapping. And anybody with a child with autism will know those things. So I, to me, I hardly notice them anymore. And then I remembered how disturbing they are, and I don’t fault anybody for being. It’s just odd. And why is he flapping? And he would fix something on the shelves and then he would flap around because he was so pleased for himself. And, you know, and it’s like, Oh, isn’t that OK? And not, you know, not necessarily. And it was not worth it to him to contain all those things when he kept getting sort of like, if you can go an hour without doing X, you’ll get rewarded in this way. It started to feel very precious to me because we were working so hard to get him to contain himself and go to ours and then all of these different strategies. He has ended up working the most successfully and happily is in is at a farm where it employs 80 about 80 individuals with developmental disabilities, and he can flap and talk to himself all he wants. If you step back and say we need many more people with disabilities working in the community to show the world that they can work in the community, one of the great challenges to getting jobs is that we didn’t have a long history of adults working at McDonald’s, at the counter, at college count, like one of his great goal was to work in the cafeteria. And it was, and we live in Amherst, which has five colleges right nearby. There wasn’t anybody when he started that had a developmental disability that worked in any of the cafeterias. And I just thought, how is that? We had an institution eight miles away that closed 10 years before? Where are those people and why aren’t they working to be a kind of role model like, oh, you’ll be like Tom, who did the dish room at Amherst College all these years? And the truth is, there’s a real paucity of that. And so we didn’t know who the role models were. But it’s also true that for Ethan, the most comfortable place has been to come back around to be with his peer group and others with like, it hasn’t been worth it to him to sort through containing himself, like he’d rather be himself and be in all his artistic glory. And I want that to be honored as well. And I hope that right now, funding programing the pressure for parents is to get your kid working in it in a community based job, and anything else is seen as not quite as successful. The same would be true for their closing. Massachusetts has closed a lot of sheltered workshops, with the idea being that any time you congregate workers together, you’re going to be abusing or it’s not good for people. And I kind of have a feeling right now what what we all need is community and that is their community. So to judge that as being a lesser community might be missing, that it might be throwing out the baby with the bath water. But we have to kind of see how this works for certain. Ethan is Ethan’s farm is thriving and hasn’t been judged to be a sheltered workshop, though it was threatened with that with closure when Massachusetts closed all its sheltered workshops. I see their point, and I also feel really strongly that these need to be an option as well. A valid option? Yes.
Kate Bowler: I wondered if we could do a little bit of myth busting, you know, things that you wish you knew before and things people don’t tell us. One thing that you wrote something along the lines of, I wish I knew. It isn’t just about closing the gap between my son and his peers. Hmm. I wonder, because I imagine for many years that it felt like the goal was just trying to create fewer and fewer differences. And that vision was a 24 hour a day job.
Cammie McGovern: Yes, it is. Oh, every parent of an autistic kid will recognize that. And then there’s some point where that seems so funny because they’re so different that why did I bother? Oh, it just seems really comical to me now, because what then you begin? The process of realizing their difference is what is their gift? Seems trite to say, but it’s it’s what disarms others and what the great gift of kids who are very different are, is that is how they create bridges around them. I do think they’re going to be as we figure out ways to include them in jobs. I think they can be very advantageous in a workplace because everybody can come together around the kindness of helping people. But it’s tricky because if that shouldn’t be an expectation on coworkers, but that when you have people that obviously need help, you disarm others, and I don’t know that it can be very good in workplaces. And I think even more in residential or in living communities, and that would be my great dream is that we have expand sort of intentional communities that are partly very clearly designed to be partly 25 percent disabled adults and then 20, you know, 75 percent low income or something that everybody knows what they’re moving into, but they’re moving into a situation where we will all be a community together and there’s more of that happening. Yes. Yeah. Happily, happily.
Kate Bowler: A beautiful example in my community. The friendship house that.
Cammie McGovern: Yes, that’s a very beautiful example of that. That’s a whole block, right? That’s created the friendship house is one house. And then there’s a whole street. Does that sound right?
Kate Bowler: That’s I think that’s right. Yes. My the place I work, that Duke Divinity School has close ties with them.
Cammie McGovern: Yeah. Yes. So it’s kids that it’s the school kids that are coming in. So it’s in their getting lower and then they’re learning a whole lot by. And parents had bought the houses on this street. See, something like that isn’t allowed yet, Massachusetts, because they don’t want clustered housing. And I think that’s what these are such beautiful examples. I’m so glad they exist because they they might need the of school there to get the original, you need to sort of seed it with people who are interested. It also works around medical schools that are training people to specialize in this, and they might spend a year living with. If you’re working in Otere or something, you would be spending a year living. It’s a great idea, and I think that’s happening in Atlanta. I can’t remember. Oh wow.
Kate Bowler: Another myth I recognized in your thought and work in life is that you want to undo the sort of endless perfectionism story. You write something like, I wish I understood that failure is a part of this process. Tell me how
Cammie McGovern: Well that was after Ethan failed so many job trials. So you start on the job, the transition that starts at age 16 and we were very ambitious and I assumed ambition would equal success ultimately that if we started early, he could learn. And if he was training on supermarket, rounding up carts, he would get that down pat by the time he was 20 and ready to take a job paying job. And that that would all measure up because we would have worked on it for so long. And a big part of educating kids with autism is repetition and reward and and just, you know, making it sort of an ingrained part. And he just didn’t like some of those jobs for whatever reason. And he then, when it was such a shocker, when they’re 18, they’re allowed to quit their job. And this would have been not even really a job, but it would have been, you know, his training, his internship, and he could announce, I quit. And you just want to say, Oh, no, no, no, no, I know I will pick you. And then he really did. And you like really did really doing a lot of work into this. Thank you for having me over and over. I was so yeah, I said some of them. I had done big emotional appeals to let them come in and intern and learn the job. And saying this is so important historically, we haven’t let these kids in have to realize and that after the big mother plea came the the reality, which was that I wanted a soda at the end of my cafeteria shift and I didn’t get one and I quit, and he was always good natured about it. Like he would go back later and hug his fellow coworkers and say, I miss you so much. It was so mad. Oh, like, well, why did you quit? But that is the ultimate thing with our children is they don’t they do mysterious things sometimes. But ultimately, I thought we it was so clear when he went to the farm. He was just settled. There was no I want to leave. In fact, he would work harder or say, Oh, they need extra people on this day. I should go in there. It’s, you know, a snowstorm predicted, but they’ll need me. There was something that he felt part of it and he felt belonging, that it wasn’t like a game anymore, that I could just quit. I felt so different and to me, quite profound that there was a sense of meaning and importance to his his position there, whether it was, you know, actual or not, whether he’s really that important of a part. He feels it and the place feels very positive. And so I felt like that’s to be honored. You know that he there’s something he’s saying with all his in subtle ways and in large ways and in small ways that this is where he belongs. And so that’s, you know, that decided it.
Kate Bowler: One of the other. Myths, I guess I thought you were taking apart was, I guess, around around acceptance is is that the opposite that maybe there is this ambition, this benchmark mentality? And then when you moved away from from it, it was something like, I wish I knew that discovering my child in all of his gifts and joys and limits is the work of all parents.
Cammie McGovern: Oh, it is, isn’t it? Because we’ve got two other kids and there’s there’s a challenge all the time not to push them in directions or to just say, I’m going to stop my knowing what you ought to be doing, and I’m going to hear what you’re saying to me about what you want to be doing. And boy, is that hard? It’s easy to say, but I do think it’s the most loving thing, and I feel like that’s that is what having a child with autism or any disability becomes a real fast course in accepting that you’re going to look different. This child isn’t going to be a great reflection on you for many years, and you’re not going to look great in this child. And that’s going to be OK.
Kate Bowler: You quote the wonderful Andrew Solomon, who we’ve had on the podcast before, when he writes, some people don’t want to be cured or changed or eliminated. They want to be whoever it is they’ve come to be.
Cammie McGovern: Yeah, that is beautiful.
Kate Bowler: Books are just such a deep. I think so much too of what you’re teaching us, Cammie is about what the what that costs, what that costs us, when we can love other people in that way. And that kind of love strikes me as wildly inefficient, right? Like, it’s not letting me pick things for you, which I would. I have very great ideas. They’re all very thank you. Thank you. Have developed a series of checklists.
Kate Bowler: It often seems to cost more than it receives. It’s not glamorous, nor do we just want it to be mastery. But it does seem like it chooses love in that way because it is the only path.
Cammie McGovern: Yeah, yeah.
Kate Bowler: That seems like the kind of love that you are that you are modeling in this big, deep, wide acceptance of who your family is.
Cammie McGovern: Yeah, I hope. And but he also gets into it has to include more people than just yourselves. And so that’s sort of our challenge for a society going forward is how we’re going to have our our communities be wider than our immediate families. I think groups helping each other is such a key component that this Ethan’s group does very well with older people and retirees and who are also at risk for isolation and loneliness. And they’re so calculating in their friendliness and their conversation starters that it’s often terrific for people who have difficulty with that. And and I wish that we can find more venues to make those those kinds of bridges
Kate Bowler: to belong to each other,
Cammie McGovern: to belong to each other. Yeah.
Kate Bowler: You’re right, because the gross way is the, I think the martyr-y heroic suffering perfect back to not just good enough parent but perfect parent. Perfect parent of it forces us back into making families and individualism carry the weight of each other’s lives. And I love that you are calling us to a much bigger communal vision of interdependence.
Cammie McGovern: Yeah. These young adults can help us create that interdependence because their needs are pretty clear. They don’t really mind their own needs. And what are yours to use your oxygen tank? Need help? You know, and I carry it for you. That’s Ethan around older people, and I’m fascinated with all the equipment and stuff like that. I feel like that’s really I just don’t know how that’s going to be. My next chapter is figuring out how to help or facilitate wider communities like that.
Kate Bowler: Yes. Yes. Get you’re calling us to a more porous world that and then our needs and our gifts ask us like they they make bids and we must answer. And yeah, thank you so much. Thank you so much for that beautiful, important reminder because I plan on being very needy tomorrow, and I hope that other people will be there to answer. We all will be. The whole way to come here is we give thanks for our own need is to come. Absolutely.
Kate Bowler: We talk a lot about costly love in this community, love that is very inefficient, love that costs more than it receives. Not the glamorous kind or the martyr kind, but love love because it is the only path. But the kind of love that Cami points to requires more than a single individual’s heroic efforts. Our interdependence depends on each other. Errands or families or teachers or social workers can’t just be heroic on their own. We need one another. This is the concern of many special needs parents or caregivers that at some point their children might need someone else. At some point, I won’t be their parent anymore, or I won’t have the ability to care for them. What will come? Who will be there? And so we answer the call. We need to create bigger communities of belonging communities that make room for all of our fragility to be shouldered together. So here’s a blessing for that kind of inefficient love. Blessed, are you who realize you can’t go it alone. You who are learning that dependance is not something to be ashamed of. That your needs do not make you weak. It is just what it means to be human. Blessed are we who create and live in communities that cost us something? Inefficiency our dignity. Our time may these bring wider and wider rings of belonging that reach beyond ourselves. Because thank god, we are a group project. If you’d like to learn more about the work of the friendship house, where students live in community, where people with intellectual or developmental disabilities visit friendship house partners, dot com and in every way you take a minute for others. Thank you. Really? Here’s the part where I get to thank everyone who makes this work at the Everything Happens initiative possible. Lilly Endowment. The Duke Endowment. Duke University. Duke Divinity School. And Faith and Leadership. An online learning resource. Thank you for your generous support and my team. Jessica Ritchie. Harriet Tubman, Gwen Higginbotham, Jesse Broome, Keith Weston, JJ Dickinson, Karen and Jeffrey Bowler. Jeb and Sammy. Your gifts make this work shine. I’m Kate bowler, and this is everything happens. Don’t miss an episode. Be sure to subscribe to everything happens wherever you listen to your podcasts. Oh, and if you don’t mind, please leave a review when you’re there. We really love to hear from you. We always read those reviews, and we really love listening to your stories. You are really special to us. Find me online at Boler or I’d keep NOLA.com. And it’s not too late for you to jump in and join the sadness lynch train. We’re inviting you to read along with us as we have the good enough lent. Learn more and download a free discussion guide at Kate Bowler dot com slash lent. That’s cable or dot com slash. Let.