This week we present two stories from mothers who learned valuable lessons from the sons they birthed.
Part 1: Avi Caspe and his mother, Ariel Detzer, reckon with what the label of "autism" means for their family.
Dr. Ariel Detzer is a psychologist in private practice in Seattle, Washington. Her clinical work focuses on the needs of neurodiverse children, teens, young adults, and parents, to promote positive identity, self-advocacy skills, behavioral health, quality of life, and academic support. Dr. Detzer did her doctoral research at Antioch University Seattle on developing a training resource for general education teachers to support autistic students in mainstream classrooms. She believes that creating a better world for neurodiverse people (and all people) comes about both through therapeutic support for clients themselves, and through educating clients, families, and surrounding educational and institutional stakeholders: don't just help the client, change the whole system--this is the social model of disability. To challenge the complex pattern-loving part of her brain, she sings with the Seattle Early Music Guild a capella choir, Sine Nomine.
Avi Caspe was a high school senior when he recorded this story. He began his autistic activism in sixth grade with a school social justice project on the lack of educator preparation for teaching autistic inclusion students. He made his first academic presentation to the national Association for Autistic Community Conference in 2014, sharing a presentation on how autistic middle schoolers process information in unique ways when under stress, which may in turn, impact the way they process bullying experiences as well as school discipline. Such experiences, he demonstrated, can be understood quite differently by autistics on the one hand and by teachers and administrators on the other. Avi is now a freshman at Bellevue College in Washington, where he plans to major in Computer Science. He enjoys playing Catan and Magic, the Gathering with friends, as well as improving his standing on Rubik's Cube scores at World Cubing Association events.
Part 2: When Paulette Steeves' son is given 2 years to live, she searches for a way to keep him alive.
Paulette Steeves was born in Whitehorse Yukon Territories and grew up in Lillooet, British Columbia, Canada. She is an Indigenous archaeologist with a focus on the Pleistocene history of the Western Hemisphere. In her research Steeves argues that Indigenous peoples were present in the Western Hemisphere as early as 60,000 years ago, and possibly much earlier. She has created a data base of hundreds of archaeology sites in both North and South America that date from 250,000 to 12,000 years before present, which challenges the Clovis First dogma of a post 12,000 year before present initial migrations to the Americas. Dr. Steeves received her BA in Anthropology, Honors Cum Laude from the University of Arkansas at Fayetteville, and completed a two-year internship with the Quapaw Native American Graves Protection and Repatriation Act (NAGPRA) program during her undergraduate studies. In 2008 Dr. Steeves was awarded the Clifford D. Clark fellowship to attend graduate studies at Binghamton University in New York State. Dr. Steeves dissertation Decolonizing Indigenous Histories: Pleistocene Archaeology Sites of the Western Hemisphereis the first dissertation framed in Indigenous Method and Theory in Anthropology within the United States. In 2011 and 2012 she worked with the Denver Museum of Nature and Science to carry out studies in the Great Plains on mammoth sites which contained evidence of human technology on the mammoth bone, thus showing that humans were present in Nebraska over 18,000 years ago. In 2019 she started a new research project focused on creating sacred Indigenous regenerative soils to address food insecurity in the North. Dr. Steeves has taught Anthropology courses with a focus on Native American and First Nations histories and studies, and decolonization of academia and knowledge production at Binghamton University, Selkirk College Fort Peck Community College, the University of Massachusetts at Amherst, and Mount Allison University , she is currently an Assistant Professor in History at Algoma University and is a nominee for a Canada Research Chair in Indigenous History Healing and Reconciliation.
Episode Transcript
Part 1: Avi Caspe and Ariel Detzer
Avi Caspe: “Why did you do that?”
“I don’t know.”
“What were you thinking?”
“I don't know.”
“Why do you even do that?”
“I don't know. Just stop asking me these questions. I don't know!”
When I was in the first grade, some of the older students in the second grade had cornered me by the bathroom and, well, they claimed that they would be my friends if I pulled down my pants for them. And, honestly, I think I would have done this if my teacher hadn’t caught me. Because, you see, they tried to claim that it was my idea to do this.
It was only later that my teacher found out what was really going on but, at the time, all I could really say was I don't know. At the time, it was true. I really didn’t know why I thought this was a good idea.
Ariel Detzer: Moms watch their kids. From the first moment we hold them in our arms, we watch for first glances, first smiles, first babbles. But Avi didn’t watch back.
Ariel Detzer and her son Avi Caspe share their story with the Story Collider audience at Centre Phi in Montreal as part of a show presented in partnership with Spectrum News and the Simons Foundation in May 2019. Photo by Esther Gibbons.
Five seconds. I read that somewhere. That’s normal infant eye contact. But always, by the time I got to four, Avi’s eyes would slide away.
Those years when Avi was a baby felt like a time of holding my breath, counting over and over not quite to five.
Being Avi’s mom felt really important. I quit my teaching job to take Avi to therapy four days a week. It felt really important but it also felt like not enough. I was lonely and isolated.
One gorgeous summer evening when Avi was about two, I went with Avi’s dad to a gala at our temple. It was on this pier. I could see the lights of Seattle reflected in the Puget Sound. All these couples were dancing, Jewish couples, inter-faith couples, gay couples. I love my progressive temple. And I was watching my friend Joan dance with her wife just like the easiest thing in the world, just so tender. And I was just hit with this wave of longing that just pierced right through me and turned my legs to water.
Avi: When I was in elementary school, the one thing that I remember is wanting to be alone all the time. I just wanted to be alone and work on my Rubik’s Cube in some corner. Or I want to escape the school cafeteria because all the voices of the people talking was just too loud and noisy. Back then, people thought it was really weird for wanting to be alone all the time.
Ariel: I remember watching Avi be alone a lot and feeling like I wanted to help but not knowing how. And the school sure wasn’t much help.
There was this time right before the end of second grade I got this message from the front desk person at Avi’s school and I could hear her voice on the answering machine getting louder and higher and I could kind of hear Avi in the background kind of worked up.
And she's going, “Young man, sit down. I’m going to call your mother. See, I’m calling her right now. Young man, sit down! Young man, you're making bad choices!”
I hate that phrase ‘bad choices’, like there's a lot of choice going on in the prefrontal cortex when the amygdala is all flooded. “Young man, sit down right now or you're not coming to school tomorrow! Young man, sit down or you're suspended! Young man, sit down right now or you're suspended until the end of school!”
And the line goes dead.
Oh, hell, no. You are not suspending my son for a manifestation of a disability. First of all, that is illegal. And second of all, no goddamn school secretary without jurisdiction and without due process is making my son miss the last week of school because he wouldn’t sit down.
I didn’t have to go all mama bear on the principal because even he could see that the whole thing was ridiculous. But that was one of the easier battles.
Avi: Then, when I was in the sixth grade, our class was assigned to research a social justice issue of our choosing. The goal was to pick something where you could then go on and enact real-world change, but I felt I just couldn’t do that if I didn’t pick something personally meaningful.
Ariel: When I suggested autism, Avi was really resistant because he felt like it was really negative, really stigmatized.
Avi: Yeah, back then, the label ‘autism’ made me seem like a disabled person or it was almost like it described someone who just wasn’t me. But eventually, I decided to research the struggles of Gen Ed teachers when trying to teach autistic children in mainstream education. As I was doing this research, I found out that all the differences I originally thought were ‘me’ differences turned out to be autistic differences. Like the noisy cafeteria thing or not wanting to do my homework because I already knew the concept and I didn’t feel like I had to prove it to any of my teachers. Or when something unexpected would happen and I’d throw a huge fit even if it turned out to be something that I really enjoy.
Ariel: Meanwhile, I’d always felt different too but I knew it wasn’t just a ‘me’ thing. I knew there were plenty of people like me right over there on the other side of the dance floor, but that other side of the floor seemed really far away. All the things I was doing to live more of the life I wanted, they were great. Fighting for Avi’s rights in the school system, trips and friends and, the big one, going back to graduate school for my doctorate, they weren’t enough. I still felt like I was watching my life from the outside. It was time to take that last big step and leave my marriage and step out on the dance floor myself.
Avi Caspe and his mother Ariel Detzer share their story with the Story Collider audience at Centre Phi in Montreal as part of a show presented in partnership with Spectrum News and the Simons Foundation in May 2019. Photo by Esther Gibbons.
Avi: When my mom came out, it showed me that you don’t have to let others define who you are. And then another thing happened. She got really interested in my project about teachers teaching autistics in education and it got me thinking. Maybe I don’t have to let others define who I am either.
Ariel: It’s true. I started getting really interested in Avi’s project and teachers saying they wanted more training. And a lot of the training they do get is focused on managing behavior and not on how autistic kids think differently.
Over the next few years, Avi worked with me to develop a series of presentations on autistic processing differences. These presentations became the basis of my dissertation: A Teacher Training on Autistic Processing Differences.
Avi: You've got to admit, it’s pretty darn cool when you can say that your mother turned your sixth grade project into her dissertation.
But what was even more important is the way it changed how I thought about myself. I no longer thought of myself as a disabled person but as an academic researcher and scholar.
When I was 14, my mom and I went to the Association for Autistic Community Conference and I was able to give my very first academic presentation about my experiences with bullying and teacher interventions in the public school system.
Ariel: at that conference, I made a conscious decision to change the way I was relating to Avi. Things like stop asking him to talk quieter. Stop commenting on his stimming. And it really opened my eyes to how often I’d been doing it.
Avi: When my mom decided to back off, it truly gave me the freedom to be myself. I was no longer trying to mold my behavior in a way that was acceptable to neurotypicals.
Ariel: Meanwhile, I was way out of my comfort zone. I spent the week in autistic space. In fact, on the last day of the conference, I was one of only three neurotypical people there so they asked me to be on the Ask a Neurotypical panel.
And we were having this discussion about disclosing your status at job interviews. And I had this crazy moment of confronting my queer privilege. You know, it’s no longer a radical thing to be out in Seattle. I don't have to worry about my housing or what my family is going to say or even my career. I have clients who seek me out as a queer therapist because I am queer.
Avi: For me, though, it’s still a really big deal to say that I am autistic. For a long time, I used to be afraid to share this because I felt it would make me seem like less of a person.
Now, however, well, people at my school know they can’t say things like, “That’s so gay,” as an insult anymore. Instead, I hear people saying, “Uh, he's so autistic,” as a really derogatory thing. And I stand up and say, “Hey, I have autism and you’re talking about me.”
In fact, there are even programs, like the Microsoft Autism Hiring Initiative, that are specifically looking for people like me because we are autistic.
Ariel: When Avi was a baby and I was counting over and over not quite to five with that strange feeling of watching our lives from the outside, I never would have dreamed that this journey of identity would have brought the two of us here today.
Avi: I am autistic.
Ariel: I am queer.
Avi and Ariel: We are family.
Part 2: Paulette Steeves
So my son Jesse Blue Steeves was born December 1st 1977 in Lillooet, British Columbia. Lillooet is rather isolated. It’s four hours on dirt roads north of Vancouver.
He was an amazing child. He was just beautiful. Thick black hair, dark eyes, really big and really smart. So when I say smart, some of the first hints were things like before he could walk, he would crawl down the hall, pile up the blankets, unlock the door, go outside, climb down the stairs and be halfway over the fence to see the dogs next door in a split second. There were many incidences where he showed his intelligence.
But he was also sick sometimes. He seemed to be really sensitive to foods and he got a lot of issues with his skin and not breathing well. So, after a year, we were sent out to Children’s Hospital.
It’s a four-hour drive. It’s a big deal to go there and we’d seen so many doctors. It was like the 99th time. So we went to see a doctor and they did a lot of tests and that’s when we found out that, even on a bad day, when he was so young, his IQ is probably 180. He just mystified the doctors.
But they did a lot of testing for allergies all the way from his ankles all the way up his legs, his back and his arms. He was allergic to everything. So the doctor came in to talk to me and he said... he had a look on his face just absolutely blank like there was nothing there. And he said, “He's allergic to a lot of things. He's allergic to milk, to peas to peanuts to potatoes, to almost every food, the food coloring, to sulfides. They're in all meat, by the way. He's allergic to a lot of materials. Cotton. He's allergic to cats, dogs, horses, birds. He's allergic to everything.”
Paulette Steeves shares a story with the Story Collider audience at The Burdock Brewery in Toronto, ON in August 2019. Photo by Stacey McDonald.
He talked about the Bubble Boy Syndrome and he talked about asthma. And then he looked at me and he said, “He won’t live to be two.”
That’s the last thing a parent wants to hear. I was devastated.
So I went home and I began to learn. I learned a lot about allergies, a lot about organic foods, a lot about pesticides, a lot about things in the food chain that we shouldn’t be eating. I learned about Bubble Boy Syndrome. I learned how to shop and how to trade for organic foods. I made friends with a lot of hippies that grew their own food. I made friends with anybody that grew their own food. God, yeah.
So anyways, Jesse did make it to be two and on his second birthday we went back to Children’s Hospital again for more testing. He was still allergic. He was allergic to even more things. He was still having asthma a lot. He was in the hospital a lot. This time, the doctor said he won’t make his sixth birthday.
I’m looking back now and I’m thinking their diagnosis was not about my son’s illness. It was about me. I was a half-breed parent with a grade eight education that lived in an isolated community. It wasn’t about the disease. Asthma and allergies have been treatable for years, for decades. Believe me, I watched every movie on parents that found the cure for whatever their child had. I read every book.
Anyways, he did make it to four. By this time, I was a newly divorced single parent with three children and we moved to Ottawa. I was thinking that the difference being away from a town with a sawmill that he would do better with his asthma and allergies and he didn’t. He didn’t do any better. He was still in the hospital every month or two for a couple of weeks.
So when he was 12, the doctors in Ottawa, in front of my son with me in the room said he won’t live. Sorry, after he was about eight they said he won’t live to be 12. And he just started crying. He's like, “What are they talking about?”
I said, “Don’t pay attention. They don’t know what they're talking about.”
So I learned a lot. I learned to trade my beadwork for organic meat, for deer, for wild meat. There were a lot of things Jesse couldn’t do. He couldn’t go to school. He couldn’t go to summer camp. He couldn’t go to church. He couldn’t go to the library. He couldn’t eat in a fast-food restaurant. There were a lot of things he couldn’t do. I was with my children 24/7 because he just really couldn’t be left anywhere. It was too dangerous. We always had EpiPens with us.
We did get out. I took them to every museum in Ottawa. I homeschooled them. I had to test all the books myself and smell the scent to myself to make sure it was something that maybe he could be around because he could open a book and have a severe attack.
We kind of got on with living but I started to think and wonder, they told my child right in front of me he was going to die. They've been telling me for ten years he's going to die. How do you raise a dying child? There must be people that have done this. Someone must have written a book.
I went to the bookstore. Nobody had written a book. They thought I was crazy. “What are you talking about?” But how do you teach a dying child to live? It’s a really serious question and people hadn’t, at that time, addressed it.
So I learned a lot. When he was 12, he had this dream vacation to Disneyworld for terminally ill kids. And that was great and we came back to Canada and we saw people busking in Ottawa and their guitar cases were getting filled up with money. That looked really good to me, like look at all that money. I was a single parent with three kids, hey. I learned the welfare system but it wasn’t easy.
So I bought myself an old guitar and I taught myself to play and I wrote songs. I taught myself to sing. I bought Jesse a banjo and a Cajun washboard and he learned to play banjo. And my younger two children, my son Dustin could turn a harmonica inside out from the time he was four. He was just amazing. And my daughter played the tub bass and we made a band called the Mother and Child Band.
And the first day that we busked in the market, someone gave us 60 bucks and I think it’s because we sounded so bad. But we got better. We felt rich. “Wow, let’s go eat out.” Holy! 60 bucks. That was a lot of money.
So we started busking regularly in Ottawa, in Toronto. We were all over street corners in Toronto. In Quebec City we started playing buskers festivals then seniors homes and then fairs and then the Canadian museum. Then we recorded two cassette tapes and. oh, my God, we were living.
We were living. We were making $800 to $1200 a day busking, $2000 to $3000 for a gig. Oh, my God. We were recording. We were buying things. We had money. It was amazing. We had gas in the truck. We have learned to live because of music.
And then one day when Jesse was 14, he got really sick and he didn’t tell me. He always, I guess, carried a guilt about the weight that his illness put on our family and how it controlled our entire family. So my younger two children kept their little backpacks by the door packed because they knew when the ambulance came, we’d be going to stay at the hospital with Jesse.
So when he was 14, his lungs burst and all of the air was coming up under his skin. And we called the ambulance and they picked him up and they took off really fast and said they were going to Children’s Hospital. I loaded up the kids in the truck to follow the ambulance. It was gone.
I got to the hospital and it wasn’t there, he wasn’t there and they said, “Oh, he stopped breathing and they stopped at another hospital and they saved his life.”
I said, “Whoa.” Those guys really got a big hug from me when they got there.
So that time he was in the hospital for 21 days. And the one thing about Jesse’s illness is that he did get better. He did have scar tissue on his lungs. But we met a lot of children that didn’t get better and so I always thought about getting an education and doing something to work with sick kids.
And when he was in the hospital this time we met an amazing, amazing woman, a nurse that changed our life.
So I had heard about these amazing places in the States where people could live, where the air was clear, where there was more trees and there wasn’t as much pollution and people with Jesse’s condition did really well. So I told the nurse about this but I said I’m terrified to take him to the States. He gets sick so easy so many times in the ER and almost losing him. And we don’t have medical coverage. We don’t have money.
And she said, “Don’t fear. If you learn of a place where he can live,” she said, “go, before he dies.” So we did.
When he got better, we went home and we had a huge yard sale. I was living in North York in Willowdale and I swear Creator just pushed everybody over there. People bought everything from a turtle to a tobacco can. Holy. Everything was gone. We sold pretty much everything we owned and took our clothes and Jesse’s breathing machines and off we went on our trip.
We went to North Carolina and South Carolina and Georgia, and every town we pulled into there was either a paper mill or a saw mill. Like we’d read about these towns and they were supposed to be great but, really, they weren’t because we’d pull in and his face would turn red. We’d know right away why we’re not living here.
Paulette Steeves shares a story with the Story Collider audience at The Burdock Brewery in Toronto, ON in August 2019. Photo by Stacey McDonald.
So then we headed over to the Ozarks. And if the Ozarks hadn’t been good we were going to head to Arizona. So in the southern Ozarks in northwest Arkansas there's a town called Fayettville. And it’s a good-sized town and they had a university. So we went there and after a month he did really good, so we rented an apartment and a little duplex.
I got a job at the Tyson chicken factory with all the other immigrants from other countries and I worked there at night. So I homeschooled my kids because of Jesse’s illness. So I'd homeschool them in the day, get a few hours sleep and I'd go work the midnight shift and then come home.
After a year, Jesse had not had one hospitalization, so that was the first time in his life that he actually lived without being in a hospital for a year. We were pretty excited. We had a big celebration.
And then he started high school and my other two children started school so I thought, “Well, maybe now I can go to college.”
So I wrote the GED I really only had a grade eight education, and I scored really high on everything except math. Okay, everybody knows that story. But anyways, I got into school and I took a job, I got my GED and I got accepted into the University of Arkansas and I took a job there as a janitor so that for my first year I could get free tuition, because if you were a janitor there you got free tuition.
So I'd go and I walked a couple of miles to get there. I walked at 4:00 in the morning and I started work usually by 4:30 or 5:00. And then I'd take classes, usually the ones after 11:00 until 4:00 and then I'd go gather up my kids. And then I'd go work in a restaurant or a fast-food place and they’d come and sit in the lobby or the back.
So I did that for a year and then I had a pretty much almost 4-point GPA. I was doing really good. Got into the honors program so I got a full-ride scholarship. And I was focused on doing pre-med. I thought, I was still thinking I saw so many kids that weren’t going to get better, that really needed help and maybe I could figure out how to help kids like Jesse.
So I was focused on pre-med but I was led in other directions by a Native American tribe from Oklahoma into genetics and anthropology. And so I was focusing on anthropology pre-med. And then in 1999 I was in my favorite bookstore. It was on the edge of campus, beautiful, old southern campus that sort of melted down into the town. Edge of campus and the beginning of main street, and I would go to this bookstore.
It was just small in the front but in the back it was just caverns of amazing books. So for me, it was a place of relaxation and respite. I'd go in there and get lost for 30 minutes.
And then they had these amazing glassed-in shelves with nickel candies. When I was young they were penny candies. Well, everything changes so they become nickel candies. So I would get three paper sacks and I would fill them up and I would make one for each of my kids. And so the kids would get them. They were just little bags of joy and love and fun and they just loved them. They didn’t cost me a couple bucks each but they loved them.
So I got my bags of candy and I was leaving and Jesse ran up to me, just out of the blue. Like he used to come to campus and wait by my janitor’s door, leave me notes or flowers. It was really sweet. Or come in to find me.
So he ran up and he grabbed his bag of candies and he said, “Oh, thank you, thank you,” and he hugged me. And he said, “I want you to promise me you'll never give up.” He said, “No matter what happens to me, don’t you ever quit.” He said, “You're smart.” He said, “You can do this. Don’t you ever give up.”
He said, “Be a doctor. Be a lawyer. Get your master’s your PhD. Promise me you'll never give up.”
So that day, in February I promised him I'd never give up. And a week later, he was gone. That was the last conversation we ever had.
I learned a lot from Jesse. I learned to love. I learned to question authority, because the doctors here didn’t have it right. I learned to rise above everyone’s assessment of me through my whole life and I grew. I grew from a single parent with three children to a Canada Research Chair Healing and Reconciliation. So I really learned a lot from Jesse.
And he passed away in February 1999 by his own choice. He passed away peacefully in his sleep. It took me a while to figure it out. I was so devastated. It was very, very hard to go back to school but I had made him that promise that I would never give up.
And he came to me in a dream and he showed me how he felt and I understood that he was tired. He was tired of not being able to breathe. He was tired of being sick. He was tired of having to always scramble for medicines. And I know that he loved me very much. But he had lived 19 years beyond what the doctors ever thought he would.
So I loved Jesse so much and I think about him every single day. And I know that I probably wouldn’t be a Canada Research Chair today if I hadn’t made him that promise on that street corner that I would never give up.