Des Moines Oral History Project
Interviewee: Ann Naffier
Interviewer: Laura Claydon
L: Okay. So just to start off with some basics, will you tell me about yourself.
A: Sure. So I am an immigration attorney and I know you mentioned also in your e-mail… well I guess I’m an immigration attorney. I work for a non-profit so I work specifically with low-income immigrants. And in your e-mail you mentioned that you’re also interested in the fact that I’m the mother of a 17 year old with severe autism. So I kind of have both sides of my life. I deal with a lot of very interesting people but with some pretty serious problems at work and then I go home and I deal with very interesting people with some serious problems there.
L: Okay. So where are you from?
A: Sure, so I was born in Maquoketa, Iowa and then when I was about three we moved to Dubuque, Iowa. Then one day, I was about 15, my father decided he wanted to do something totally different and so we moved to South America. So I was in high school when I was in South America. I did not learn Spanish there. We move to a country called Suriname or former Dutch Guiana. So we learned Dutch. And then I came back to Iowa to go to University of Iowa. Then I went out and worked in Washington D.C. for about four years and then I worked in El Paso Texas with undocumented immigrants crossing the border there for about three years. Then Austin for a little while, like less than a year, and then moved back to Iowa. So been around.
L: What were you doing in Washington D.C.?
A: So when I graduated from college I knew that I didn’t have any work experience. I didn’t really know what life was about. I didn’t know like how much is a fulltime job. You know there is so many things I didn’t know. So I actually joined a group called the Lutheran Volunteer Corps which is kind of like the Jesuit Volunteer Corps or the Peace Corps and they send you places and you have a job but it’s a volunteer position. But they give you a room and they give you housing. And for the Lutheran Volunteer Corps, like many it was usually either social justice organizations or charities. Places like that. So I actually worked for an organization there. I lived in a house with four other women, which was great cause I didn’t just want to move to a big city by myself and figure it out, so I had four friends right from the beginning and even though I didn’t know. I worked in an agency called the Interfaith conference which was mostly an office job which was good but I decided that I’d rather do some more direct service like actually meet clients. And so then I spent a year being a nursing assistant at a homeless shelter for homeless ill men, men who were released from the hospital but didn’t have any place to go. There was another one for women but I was at the men’s shelter. And that was really interesting and I thought for a while I wanted to be a nurse. And then after a year of like I was like okay maybe not a nurse [laughs]. Then I went to work for an environmental agency over a couple of years and it was called the Mineral Policy Centre and it was all about mining in the West and that was really great because I get to take several trips. I planned conferences and so we get to have several conferences one in Colorado one in Montana. There was another one maybe in Utah and I get to see the West and I thought oh my gosh this is beautiful. I’d always known because I’d grown up overseas, I knew that I really wanted to work with immigrants. I just couldn’t get a job with immigrants in DC mostly because I didn’t speak Spanish. And so I had gone out west a couple of times, really like it. And then I found this place called Enunciation House which was another volunteer organization but they also give you room and board and it was a homeless shelter for, really it was like a safe house for undocumented immigrants who were crossing the border or needed someplace to stay while they figured out what they were going to do next. And it was a Catholic, it was sort of like a Catholic Worker house. So I mean it was a religious, definitely had a religious bent. It wasn’t like helping people cross the border illegally but it was making itself available to people who had done that. And so I worked there for about three years and learned Spanish and really loved it. And I also met my husband there and then we came back here and started working with immigrants here and eventually decided to go to law school.
A: Hold on just a second. Hey Seth! Are you going to work on the other computer? Hey Seth, first of all can you pick up your coat? And Seth, this is Laura, can you say hi to her?
A: And you can hang up your coat in here.
Paused here so Ann could talk to Seth’s respite worker. We then moved out of her office into the waiting area so that she could keep an eye on Seth as he has engaged in elopement behaviors [term used to refer to running away in individuals with autism] historically.
L: So I think you were telling me about the mineral policy and then moving back…
A: Then we went to El Paso and then worked with people there, learned Spanish, met my husband. Then we actually moved to Austin for a year and I worked at another shelter sort of the same kind of thing. But then we decided we were looking for some place to settle down. All of my husband’s, my husband’s name is Oscar, all of Oscar’s family lived in Miami. All of my family, well not all of my family, my parents in fact, my parents and my sister lived in Iowa. And so we went both places to see. So we had gotten married and we were actually expecting a baby at that point and we were like, well so where do we have the baby. You know it’s like my job in Austin had ended, and it was like okay cool this is fine so where we are we going to go have the baby. So we went to Miami and lived there for about a month, toured the hospitals in Miami. So we toured the hospital in Miami and we walked around and we explained you know that I just left my job and so we didn’t have insurance but we were fine. We were going to pay for it and we said that and the nurse said “oh I am so sorry to hear that honey” and then she showed us. So the hospital we went to, it would have been the hospital that we would have had to go to because we didn’t have insurance and it had, they had been having a fundraising event that day and so they had signs all over the hospital about all the needs the hospital had and so signs like “people are born in rooms with 20 people all going into labor at the same time” or you know “so many people have to share a room for cancer treatment” and all of this kind of stuff as we are walking around. And then we came up and visit my parents in Iowa and we went to Broadlawns which was where we thought was the hospital you had to go to if you didn’t have insurance and we were like so we don’t have insurance but we will pay for it. And the nurses say “oh we don’t care about that at all, all we care about is the health of the baby.” And like they were having private rooms and they were showing us like back then, it was 21 years, but like it had a CD player in the room and you could do a water birth and all this kind of stuff. And we were like I guess we are going to come to Iowa now to have the baby and then we never left. Which I say about Des Moines, it kind of eats you up, once you get here, its really hard to leave.
L: So you had your first…
A: So I had my first son here, who, his name is Etienne and he is now a junior at UNI. Loves Iowa. This is where he looked for colleges, he said he was only going to look in look in state. And then we had Seth who is 17 and he’s at Ruby Van Meter. I also always say that my husband is from Nicaragua. So I often say I married the most exotic man I could find and he fell in love with Iowa so here we are still stuck in Iowa. Which Des Moines is a much better place than it was 21 years ago when we got here. But um it’s a nice place to live, I don’t mind it at all. And I really like the season I like having winter, I like having summer. But I always sort of envisioned myself as like travelling a lot more and moving in other places and that hasn’t happened but its ok! Been an exciting life anyway.
L: That’s good! So how did you decide to become an immigration lawyer? I know you kind of mentioned it but…
A: Well yeah so I had worked with immigrants so I knew I wanted to be in, I knew I always wanted to work with immigrants because I had gone to high school overseas and I knew what it was like to be in a foreign country. And so I thought…and I didn’t want to do that. Even though I want to travel I didn’t really want to live in a foreign country again even though I liked it but it wasn’t…but I liked being in my country. But I knew what it was like now to live in another country so I knew that I wanted to work with immigrants. It took me a number of years to figure out how I could even get a job with immigrants at all. Then we came back to Iowa and I got a job, I knew I wanted to work with immigrants, so I just went around to any of the agencies that work with immigrants and I was like can you use me. I ended up at the American Friends Service Committee [AFSC] , which is a Quaker organization and what they need is someone to help fill out paperwork. And we didn’t even know that this was like legal, like we knew was people keep coming in with these forms and they need help and you do it. And at first they said we’ll hire you on contract so you can just you know well you just get paid by the hour as many hours as people need forms filled out. So that’s what I was doing and then eventually that grew into a part time job. And then eventually it grew into a full time job. And then after a while, well it it was apart time job for a long time because I was, I really think people, I wanted to raise my kids I didn’t want to be a stay at home mom. That would have been extremely depressing for me. But it’s really hard to work full time and have kids at the same time so I was half time and my husband was working. He works a pretty flexible job. And then when we found out that Seth has autism, at that point there is this choice of do I quit my job altogether and just devote everything to trying to get all the right treatments and the right therapies for him, or I mean we knew one of the therapies we wanted was something called ABA [Applied Behavioral Analysis] its applied behavior analysis. And we knew it was really expensive. At that time insurance wouldn’t cover it. Not even Medicaid would cover it and it was kind of like Iowa was a little behind the times. Like Iowa didn’t have any ABA providers so we knew we were going to have to fly somebody out from another state. And we were going to have to train people how to do it. So we thought that was going to be really expensive so I was like okay I either quit my job and just devote myself to that or I start working full time so that we have enough money to do all this so that’s what we ended up doing. And so he was, so that’s when I started working full time very, at AFSC, and luckily at that time they needed me full time. And then after probably after about four or five years doing ABA and coming to the conclusion, ABA, at the time there was a lot o thought that ABA would recover you’re child, like you’re child would be cured. And some really high functioning kids do get to that point. They have some autistic traits and then the autistic traits go away although now I’ve been with it long enough that I see them a couple years later and I’m like oh I think the autistic traits are kind of back because it’s part of your personality. So to some extent, like why are you trying to get rid of your own personality. That said with someone like Seth learning to talk is really important and learning to be able to ask for things and learning to be able to understand when people are asking you things. But after about four or five years it when it became clear. That he wasn’t going to be recovered and then it was like well do we keep this up or do we take a new direction and do, again, do I quit my job and just see if I can, there’s tons of treatments out there for autism. And its was like do we move to another state, get a different kind of treatment. And but finally what we decided to do, we decided not to move to another state because we were feeling like, I visited some other state and talked to people there and even though some other states do have better treatment programs you still saw kids with about the same outcome. I mean I’m sure that there are places like I could have spent a hundred thousand dollars a year and gotten really great treatment and that was never an option for us. So anyway we decided not to do that. And it was like well so what do we do next. And then I was like well I think I’m going to go to law school. Because they’ve been doing this legal work, by then I knew it was legal. And so then it was like and now I want to do more like I want to take it to a next step and this gives me more job security if I actually have a law degree and Seth was in school by then and it was like I’ve got time so this is the time to do it. So that’s why I want to law school. I thought, I didn’t know if I was just going to keep doing immigration and then once I got to law school I realized I didn’t like any other kind of law! So I said yeah I am just going to do immigration. I got a job out of law school with a big law firm downtown called Davis Brown. It’s, when I was in law school it was like one of the firms that everybody wanted to go to, like if you could get a job at Davis Brown that was great. So everyone thought I was wonderful because I got a job at Davis Brown. And then I hated it, every second of it. Even though I was working with immigrants so I was learning a lot, but it was just the atmosphere was not right for me. And then a job came open at Justice For Our Neighbors, which I’ve been in Des Moines for 21 years, I knew about Justice For Our Neighbors, I knew about everybody who worked here. So in fact they called me up and they were like well we’ve got an opening and I was like oh will you take me and they were like yeah we’ll take you! So that’s how I ended up here.
L: Wow, that’s really great! What do you think the most challenging parts of this job is?
A: The job? Okay so for me the most challenging part is going to court. It turns out after all these years that I’m probably not a good litigator. A litigator is a person who likes to walk into the court room and argue with the judge, you know…”Objection!”, and all that stuff you see in Law and Order, that’s not me it turns out. Luckily in immigration law there are tons and tons of other things I can do. I have to do that occasionally but I get really nervous when that happens like those are my and then I feel bad because of what my clients are facing is so much more, right? When I go into that courtroom I’m just facing being embarrassed because I called a wrong objection or something where as my client is facing deportation. So it’s a much bigger thing. So I go through those guilty moments of like I am getting all stressed out about going in front of the judge and my poor client you know has much more at stake than I do. So yeah. I mean and that of course is the other thing, is when you can’t win somebody’s case. There’s so many people, who are really good people, who have really terrible stories from why they have come to the United States and the laws here just don’t allow for them to stay. So that’s probably the other really difficult part of it.
L: Yeah I can imagine that would be so hard. I know when you were speaking in Professor Carter’s class you mentioned like second hand trauma and PTSD…
A: Yeah. Sure.
L: Could you tell me a little about that?
A: Sure, because we get lots and lots of clients who especially, well I mean it used to be they were fleeing terrible wars like from Central America, like my husband left Nicaragua because there was a war going on in Nicaragua. He left when he was 14, his mother sent him away when he was 14 so that he wouldn’t be recruited either to the army or to the rebels who were fighting the army. So we’ve got lots of clients like my age, in their 50s but who have been here for, you know 20, 30 years, who fled the wars. And then we have the younger people who came because now in Central America, I think I might have mentioned this in class, you know it’s gangs, it’s criminal gangs who have really taken over. They kidnap young people, they rape young people, they recruit young people, forcibly recruit them to work in their, to be in their gangs. And in these kids, I mean we’re getting lots of kids who are coming who have just seen horrible things happen to them or of had death threats or have lost brothers and sisters already to the gang wars going on there. And then we get a lot of women coming up with their children who have been raped or who have been severely abused by their own spouses or their spouses may have been murdered. And they’re coming and they’re telling us these stories. And I guess I think like for the ones we can help its beautiful. Like I don’t know that I feel their trauma as much because I’m like hey I can fix this you know and that feels really good. But many, many of them just don’t qualify for any programs. And so then you’re listening to these horrible stories and you know there is nothing you can do about it. I think for me it’s that helplessness. I do know we have another office worker, she’s a paralegal, but she does a lot of work with victims of domestic violence and most of those are actually have been victims of domestic violence here in the United States which I’m sure you know is very, there’s a lot of domestic violence that goes on. And she, I’ve never asked, but I’m pretty sure that she herself was a victim of domestic violence at some point in the past, not now but in the past, at least I hope not now. So she actually works in a program called working with VAWA or U visas, those are two programs that can help victims of domestic violence. So she is in a position where she can help them but I think she also just gets re-traumatized herself every time she works with them. And I think working with victims of domestic violence in general whether they be immigrants or non-immigrant, or other people who are not immigrants, because there’s that whole cycle of violence now and it’s often someone has been abused and they leave or they take some action in order not to be abused anymore, and then their spouse talks them into no come back home please it will all be different. And then it just happens all over again. And I just think that’s really, it’s really hard, I’m sure to be in that situation, it’s really hard to keep going through that situation with your clients again and again. So for me I feel worse when I’m helpless, for my work mate, I think it just all is horrible. Even though she loves doing it and she loves working with the people and she can really relate to them. But you know she says I go home and I have nightmares at night. You know those stories that they’re telling me and then it comes back to me at night. So we’re trying to do, we’re starting a book discussion, we’re going to read a book about secondary post-traumatic stress. And talk about it and try to keep it a little, because we’ve talked about it a couple of times over the past couple of years. I will say, you know not to get too political, but honestly everything has become 10 times worse with President Trump’s election. And it was bad before. I mean things were already bad. President Obama was by no means a great immigration president and he was really great about DACA and that was a wonderful program. But otherwise I mean he deported more people than any president ever before him. He was not good with young people who were escaping gang violence. But with Trump it’s like this psychological weight that holds us all down, like just makes it so much worse, like makes it hard to take any action at all. And I think partially because he’s so anti immigrant and also but the thought that so many of our neighbors voted for him. You know they’re, like it’s not just there in Washington it’s like all around us. So that’s been really difficult. And so since then we’ve done a couple of workshops about secondary post-traumatic stress disorder. And then a couple people we can tell, you know are really suffering more than others. I mean all of us feel it but I think a couple of people feel that more than others. But then we have the workshop and then we just go, and like at the workshop its like here’s what you can do and this is what you can do, do something for yourself. We’re all pretty low paid so you know it’s not like we can go have a shopping spree or go to a nice restaurant. I mean we can once in awhile but not very often. And then we’re all super busy. So its not like we, you know, they’re like we’ll take a coffee break at 10:00 and everybody come together and just chat about like you know movies you’ve seen. Well none of us see movies. We don’t have any money or time [laughs] and we don’t have time to take a break. Like if we come together at 10:00 o’clock in the morning, like we have one, super like all she ever wants to do is work. She’s like I don’t want to be here. I don’t want to talk. I just want to work and then the rest of us are like what should we talk about. So anyway we’re not doing anything. We have workshops and then we totally don’t do any of the things that they tell us to do.So we’re going to do this book discussion cause that at least like once a month we’ll get together and we’ll talk about it. And we’ll hopefully stay on the same thing so hopefully it will keep it higher in our mind knowing that we have to do something about it.
L: I know you mentioned in class that there’s not a lot of mental health [service provides] that speak Spanish available for your clients. Are there any kind of counselors that are available for the staff as well?
A: No, I mean that really probably I mean honestly our insurance doesn’t cover counseling and what we’ve had is so we have a good relationship with victim services, and so they’ve come out and done a couple of these workshops but its not like a regular one on one kind of counseling thing. So and again we could probably bring them out more often. But yeah I mean there are people who are willing to help but right there’s no, not that I’m aware of is, is there anyone who comes in or would be willing to do a lot of counseling for a low price.
L: Do you think the experiences of second hand PTSD affect you outside of work? I know you mentioned that your one work mate has nightmares sometimes…
A: Right. Yeah. I don’t think so. I mean maybe because, I think of a couple of things. I think one my husband went through all this. And so I feel like from pretty, I mean we didn’t get married until I was 30, but I feel like it’s something like a lot of people are very very resilient. My husband is very very resilient. And so I hear these terrible stories but I also see these people, like my husband loves to joke. Like he is the biggest jokester [laughs]. You know so it’s sort of like for me it’s become, I see the terrible things and I hear about the terrible things, but I also see the people that they just keep moving and they just keep doing great things and being happy personality and so I think I feel like you can do both. I also am very lucky that I have never suffered any of this trauma at all. I just hear other people so it doesn’t bring up any bad memories for me. And then I think Seth has been a big help because I feel like he brings me down to earth. Like as bad as things get in the world, you just have to deal with it. And that’s sort of like, I mean because of Seth, we’ve had some bad experiences of him attacking us. We had to take him to hospital once. But we put up with all that. But it’s sort of, and of course we love him and he’s wonderful, but it does it just keeps you on the earth. It keeps you like no matter how good things are bad things can happen and then you just keep going. Which isn’t to say, like if something horrible happened to me, if someone came and murdered my husband or you know, I’m not saying that I wouldn’t be a complete basket case. But I think that those are sort of the reasons why they haven’t touched me as, I don’t have nightmares about that, I do have nightmares about him and other things but I haven’t hard nightmares about client’s stories.
L: So kind of circling over towards Seth, how did you feel or what was your reaction when you found out that he did have autism?
A: So my brother and his wife had a son a year before Seth, his name is Matthew, and Matthew when he was about 2 he was diagnosed with probably autism. And oh they just went crazy and they were so worried and they were getting all these different interventions and all of this. And I was like, Seth was a year at the time and no clue that anything was wrong with him at all. And I was like oh my gosh I would never be like that if my child were disabled. I would just accept it, it’s totally fine you know. And so then when Seth was 3 he got diagnosed and I was like [gasps]. Which I always, it’s a good experience. I always think about it like whenever I look at someone else I’m like oh I wouldn’t be that way but I’m like maybe I would be. You know I really, we really had no clue. We really didn’t. We knew he was quiet. We knew he didn’t talk much but it just never occurred to us like he seems social to us, he loved playing with his big brother. We knew that sometimes we would call him and he wouldn’t come but if his brother called him he came immediately so. And he was happy with us. So I mean there were so many things like it was just such a shock to us when he was diagnosed. It was, when he was two and a half I wasn’t worried about him at all. Then when he was, maybe when he was two I wasn’t worried, when he was two and a half and still wasn’t talking, the doctor said you really need to take him to a speech therapist and I was like okay fine whatever I don’t care. So I called the school, the school had a free speech therapist and so they came out to the house and they did, and they said we’re just going to be here for a month we’re going to come once a week and we’re just going to observe. And so they came and I thought it was really stupid, everything they were doing was really dumb, like he’s fine, its ok [laughs]. And then at the end of the month they said well we think he’s got some mental deficits. And I was like no he doesn’t, like I understand he isn’t talking very much but they saw other things you know, like he wasn’t playing with the toys appropriately. He wasn’t, I don’t know. I mean he read, but he didn’t read books but, he sat and listened to books and to me he seemed fine anyway. So after that month I was still kind of fighting it like no he’s perfectly fine. But by then was two and a half, or like two and nine months maybe. And then and then I started reading, like we had noticed some weird things about him like certain songs would make him cry and we didn’t know why, like really, really cry. And he would listen to some songs over and over again. And he would look at things out of the sides of his eyes. So then I started reading about it a little bit. They didn’t call it autism, they called it pervasive development disorder. And so I was reading about pervasive development disorder and I started reading all these things and I was like okay this is sounding more and more like Seth. And then finally we took him to Iowa City to be diagnosed and they said “Oh yeah absolutely autism.” So by the time we get to Iowa City I was already, like I was out of denial. At that point I was like oh my gosh he really has autism and Oscar was more like oh no he’s fine. He’s fine. He’ll totally be fine. We’re not going to do anything until he turns five. If he’s not talking when he’s five we’re not going to, you know then we’ll be worried about it but for now we are going to let it be. And I was like no early intervention, we’ve got to start doing something right away so that’s when we did the ABA. We actually flew someone out from Maryland who came once a month, we got a bunch of Drake students to come and learn how to do ABA in our house, we live really close to Drake, and really started working on it. And the first thing that was wonderful is that he learned to use the toilet. So we hadn’t done a lot of toilet training. His older brother hadn’t really learned to use the toilet much until he was 3 so we weren’t really worried about it. And then suddenly we, were really worried that he had autism, or I was really worried that he had autism so I was concentrating on toilet training so that was on of the first things we did with ABA. He learned really quick. It was wonderful. He started learning words but then it kind of stopped. Like it should have, if he was going to benefit a lot, actually that’s not true, he benefited a lot, but if he was going to get better it should have, we should have started seeing things within about six months and we didn’t. But we kept going for four or five years. So I think it’s really hard, the other way I described it is, its like so there’s this movie called Bounce, its an old movie, Gwyneth Paltrow and Ben Affleck and like I don’t like either of them now but I liked them at the time. In the movie she has something terrible that happens to her and she talks about bounce that’s why the movie is named Bounce. And she said that being about a disaster or the thing about tragedy is when, and people will say you’ll bounce back, right? But the thing is yes you do bounce back and then the ball goes down again and you bounce down again and then back and then down and then back. And that’s how I felt autism was. It was like oh my god he has autism and then it’s but there’s ABA, ABA is wonderful, let’s get ABA, that’s great. And then six months later it’s like oh this might not be the solution that we thought it was. And so then you bounce again. And then in the world of autism there’s so many different kinds of treatments you know so it was ABA and then it was well lets do floor time and lets do speech therapy and OT, occupational therapy. And then there’s this other program called RDI, relationship development intervention, and you know every time, and we spent tons of money, and it’s okay, I mean we know we did everything we could but every time something didn’t work you just felt like you were falling all over again. So I think that’s for a long time how we felt. And then five, it’s a big thing in the literature, in the autism literature, like if your child hasn’t recovered by five they’re probably not going to. So that was like his fifth birthday was like a really depressing time.And you know it’s taken along time. Well then so then it was like okay, fine you know we’re gone except this is fine we’re just going to get him the best school possible, the best activities as possible, we’re going to make the best life for him. And then in third grade, he started, in fourth grade, in fourth grade he started getting really violent. I was like okay I don’t have enough already, with you know he’s got severe autism and we’re having a really hard time communicating. And then he has to get aggressive on us, like what is happening [laughs]. And I mean my husband is so not aggressive and I am not aggressive. Like we are pacifists, but we’re natural pacifists you know like it would never have occurred to us to hit someone. And he was like attacking us and attacking people at school. And so again then it was new interventions. It was like you know it used to be like I wanted everything the best like I wanted him to be included in regular classrooms and I wanted him to have the best academic support and like I knew he was, he is very smart. I mean he’s very good at computers. He can read really well. By then he could read really well. He can’t answer questions so we don’t know how much he comprehends. I think he comprehends more than we think. But I don’t know, maybe he comprehends it in a different way. So but then once the aggression started it was like okay now all I want is him to stop hitting. Like I don’t care if he talks, I don’t care if he reads, like I don’t care if anything else happens, I just want him to stop hitting. And so then he goes through a lot of different interventions for that. And we went through every thing and I remember sitting down with, and we took him to make this special occupational therapist, who was suppose to be so good with people with autism, and we told her about, that he attacks. And he didn’t attack her, he attacked Oscar in front of her. And after that, I mean she’d been working with us like this is why we were seeing her but she’d never seen one of those attacks and afterwards she was like I cant see him anymore. And she said that wasn’t aggression that was assault. And I was like well yeah that’s what we’ve been telling you! But she hadn’t known, and she said yeah I know you told me I just didn’t understand until I saw it. So you know we would have that like agencies would be like, the very agency we were going to for help, would then say “no I’m sorry we can’t we can’t take this child it’s too dangerous.” Well now what do we do? And amazingly I mean the schools take him and they him took him, I mean now he’s at Ruby Van Meter, which is a special school for kids with disabilities, but up until 8th grade he was in normal school, often in the classroom that was just for kids with disabilities but at least he was in a normal school. So I mean they really supported us through the way. So that’s been really hard. Then finally when he was in 10th grade….well the other thing is he elopes [runs away]. So he would leave the house and he would just start running and running and we’ve lost him, a couple of times we called the police. We have what now is like sort of a funny memory but of course it was terrifying at the time. We went to New York City and we went to Central Park and he loves this movie called The Troll in Central Park. So we, so he really wanted to see Central Park and my other son really wanted to see Central Park too so we went there. We stayed with friends in New Jersey and we took the train in to New York and we went to the museum, the natural museum, the Natural History Museum, and then we went to…well I don’t know what kind of museum it is, it’s the one where Night in the Museum, and then we went walking around Central Park. He had seen a half a bottle coke. He really likes Coca-Cola. So he had seen half a bottle of coke and he really wanted it. And it was just on a park bench in Central Park. And I was like no Seth, you are not drinking that. We went and got him another coke but he was really agitated and we were walking around, walking around and then suddenly like we were probably like a mile away and he said coke and he pointed to where the park bench had been, like that direction. And he just broke away from me and took of running. And he was already like maybe 12 years old. So he could run way faster than any of us. And we were running after him but I fell down and my knee was bleeding and so I called the police because we had called the police a couple of times here [in Des Moines] I called the police, no I called 911, and I was like my son is escaping, like my son has autism and he’s running through Central Park and we need help. And she was like “are you kidding me.” I mean literally she said “this is not the reason, you’re telling me your 12 year old son”, he was actually 14, “you’re telling me your 14 year old son is running through Central Park and that we’re supposed to send the New York Police Department out to help you. Don’t you think you should help your son?” And I was like yes but he got away from us and he runs really fast and we don’t know where he is! He’s in Central Park, he has autism, and she’s like “this is not an emergency”, and I said well it will be an emergency if he gets hit by a car. And she said “if he gets hit by a car you call back.” [laughs]. Like oh my gosh…
L: oh my gosh!
A: …but its another one of those things that she couldn’t see like she was just hearing about it. The police luckily, Central Park is full of police, and they saw what was happening and they stopped him. So they did but they actually, he was really agitated. And so they had to hand cuff him, and they called me, like Oscar caught up to them, but Oscar doesn’t speak, well Oscar does speak English fine but he was really nervous and he didn’t know what to say so he just called me on my cell phone and he gave the cell phone to the police and he was like Ann talk to the police. And so I was like saying, and I had gone the wrong direction at that point. Like I thought I was going back towards the park and I was somewhere totally, like back towards the bench, but I was somewhere totally different. And then I saw a police car. So I ran to the police car and I was like, are you, because they told me they had Seth and I was like “Do you have Seth?” And he’s like I don’t know what you’re talking about. But he ended up giving me a ride over to where Seth was and they were like we’re going have to arrest him if you don’t come here soon. So it was a really tough time. And with him eloping, which is what they call it when autistic people run, and with him attacking people, we were like when he was, so two years ago we were like thinking that we couldn’t keep him at home anymore, that we would have to send him to like a boarding school or some sort of place. Which of course we didn’t really want to do. But then the Homestead, so there’s this agency, the Homestead, which does ABA now, they didn’t do ABA when Seth was little but now they do, do ABA. We had tried at the Homestead earlier like when he was about eight we had wanted to because, or you know maybe when he was in fourth grade when things started we were like well this is behavioral and this is something we can work on a behavioral way. So we, they have a clinic that they had started when he was too old to go to it. But it was a behavioral clinic and we applied to that we were like Okay I know he’s 10. This was back when he was 10 I know he’s 10, but to give it a try. We think this could be really helpful. And Medicaid said no way they wouldn’t pay for it and we didn’t have enough money to pay for it privately. Cause it’s like thirty six thousand dollars they estimated a year. And I was working at a non-profit at that point, that was before I went to law school. I think it was before I went to law school, but even when I was in law school I wasn’t earning anything at all. Right. So we didn’t get in then. So we tried lots of other ways. So then he was a sophomore in high school and he sent one poor substitute teacher to the hospital. She had to get like 17 stiches. And he hadn’t really meant to hurt her but he just pushed her into a door really hard. And so all this time we had really thought well if things get absolutely impossible there’s this mental health ward at Mercy hospital and we can take him to Mercy Hospital. So that day he sent the substitute, he had hit the substitute teacher. The school called me. I came, we gave him a medication but that didn’t calm him down. The school social worker said let’s try going to Mercy. And I was like well I’ve always known that that was a back up let’s do it I mean maybe this is what we need to teach him that you can’t do this. So we went to Mercy and we got there, and I mean it was kind of amazing. The social worker came with me, which was really nice. The doctor came in with like six armed guards. Like they were really, I mean maybe they’ve had other bad experiences and I mean he did just send someone to the hospital for 17 stiches. But it was also like oh my god. I mean he comes home with me by myself every night. You know like yes he has hurt me before but I don’t need six armed guards with me [laughs]. And then the doctor was like after like well we can do is give him medicine and you’ve already given him medicine. We can keep him here but we’re just going to medicate him more. And that’s all we do. And I was like Oh okay well then I’ll just take him home. So then, so that was like well that was our last resort right like if anything got really bad we were taking him to Mercy. So we finally get to their point we took him to Mercy and it was like okay they can’t do anything either. But right around that time, in fact the woman who brought him here today, Kate, she worked at the Homestead. She had worked with him a little bit. And then what happened with the Homestead, so they have a clinic but they also sent us SCL [Supported Community Living] workers are like respite workers. So they would come to the house. But he got even to be too much for them so the Homestead said we can’t send you the SCL workers anymore because it’s too dangerous for them. But we’re going to look for something else to do. But that was like a year before and I hadn’t heard from them any year and I didn’t expect anything to happen. And finally Kate called me up and she said you know what, I’ve talked to the clinic we’re going to have him apply to the clinic now even though he’s like 15 years old, we’ve never had a 15 year old before but we know what’s happening. We’re going to try it. And if Medicaid says no this time we’re going to appeal it. We’re going to keep appealing and keep appealing until we get something. So we got together with them and we went to an evaluation, Seth went in for an evaluation at Homestead and he loved it. Like every day after that we went to school he was like “Homestead”. I want to go to the homestead. And the evaluation was over 4 weeks, so we went 4 weeks in a row. And so the end of the four weeks came and I was like oh man he’s going to be so sad because we’re not going to go back to the Homestead anymore. Cause you know we didn’t know what was going to happen but we put together this great application and I helped and we got letters of recommendation from a lot of different people and all the reasons why we needed it and Medicaid approved it right away.
L: That’s amazing!
A: Yeah it was amazing! He was like the first 15 year old. Now they have a couple of them. He was like first one to go to Homestead. And that’s changed everything. I mean he loved it there. I think he was treated really respectfully. I mean I think that’s one of the problems he was having at, like he was being treated like a child. I mean, unfortunately a lot of people working with people with disabilities and some people with disabilities, maybe they like it like I don’t know about Down’s Syndrome people, I don’t know about cerebral palsy or other kinds of other kinds of disability that people have. But he didn’t like being talked to like a 3 year old. You know he wanted…That said he couldn’t really talk like a 15 year old that so you know it’s like how do you deal with it. So at the Homestead they were super respectful. They treated him like a 15 year old. And they do this ABA which is very predictable and it’s very much you learn a skill, you learn something and then it always happens the same way every time. So he felt like he was on solid ground, which of course is what people with autism, many people with Autism like, in the first place. They like that predictability. So he’s been there for two years. So of course Medicaid has now said two years is enough you have to stop now. So we’re right at the end of Homestead. In fact he went yesterday, next Wednesday will be his last time going there. So we’re a little concerned. We don’t know what’s going to happen next. But thank God for these two years and hopefully and also he’s 17 and hopefully he’s grown up a little bit more. Hopefully it’s going to stick. So long story for you!
L: No that’s great! How do you think your experience as a parent of a child with a disability impacted your outlook on life?
A: Well I said a little bit before, I mean it in many ways it really grounds me. So like it always brings me back to reality. It always brings me back to you know no matter how successful you are, no matter how good my grades were in law school, no matter how great a job I got at Davis Brown, no matter how much money I was paid, it didn’t matter because people still have their problems that they have. So that’s been good and it’s been bad. I think I’m better now than I was when he was when he was younger, and it still seemed like there was so much pressure to do whatever I could to make sure he did as well as he could. I think that was really stressful. And I think unfortunately I’m sure it was really stressful for him. I’m sure it’s not great to have your mother always trying to make you better you know and I tried not to be that way of course, I tried not to be that way at all. But at the same time what are you going to think if you are constantly going to new doctors and you’re constantly having new therapists and all of this kind of stuff. So I don’t know if I would have done that differently but I think it was very stressful. I think my hair is so grey because its a lot of stress. And they say that mothers, I read lots of studies, they say that mothers of children with disabilities actually age faster than other people. Like I don’t feel old at all but I blame my hair on that. There is this, I was reading a book about happiness and there have been lots of different studies about people learning to be happy. Er, not learning to be happy, who are happy and what makes people happy, what makes people not happy. And a lot of the studies, when they choose a group of people who they know are not going to be happy, they choose mothers of children with disabilities. Which I think I am happy. So I actually like I would read these studies and I would be like, yes there have been some really rocky times along the way but overall I do bounce back like even though I don’t like the bouncing part where you’re like actually hitting the floor, I do bounce back. It’s going to be really interesting to see what happens now. You know how long can we keep Seth at home. Is it good to keep Seth at home? What happens to him when he gets out of school? There’s a lot of challenges still ahead of us. There are definitely times, I’m an introvert, even though I’m talking constantly, and I remember when I found that he had autism one of the big things that really affected me was… First of all I didn’t know enough to know whether he was ever going to go to school. I didn’t know that schools had to accept kids with disabilities. I don’t think I was a very happy young mother. I think it was really hard for me to have young children because they are just so demanding. And I don’t think we do it right in our culture. Like I think, like when I would go to Nicaragua with my two little kids it would be so fine because there were cousins, Oscar’s sisters and all the kids. I mean they didn’t run wild. They were really well behaved but they didn’t mind like touching each other. Like my kids are really touchy, they touch other kids and I think, at least when they were little here, like I would take them to a park here and if they got too close to another kid other mothers would be like really nervous like why is your child so close to my child. Like there’s a real like…and I didn’t notice that when I was here until we went to Nicaragua. We went to Nicaragua and we went to this park in the downtown of his little village and all the kids, I mean they’re just like tons of kids, and there are running into each other and like wrestling with each other. And my kids were so happy! They had never been so happy in my life just playing in a park in Nicaragua. So I didn’t really notice those kind of things until we came back it was like oh yeah I forgot its like that here. But like I just felt like there’s so much responsibility placed on young mothers and they don’t really have anyone to reach out to. Like I didn’t. My sister lived in Ames but she wasn’t very good, like she wasn’t very good at taking care of kids. I did have my mother thank God. So I always wanted to like I just wanted to go read a book. I just like I was one of those mothers like, my kids were really high maintenance so like taking a shower was my only time being alone all day long. And I’m an introvert and I really really wanted to be alone and so thank God when my older son went to pre-school, like I love him, but it was three hours that he was at pre-school were so beautiful. And so then when I found out that Seth had autism I was like oh my god I’m never going to have any time by myself again. And of course that didn’t happen. But it kind of does because the kids go to school but I’ve had to work so like any time that I would have by myself…So then and then it’s like oh my God what if he lives with us for the rest of our lives like I’m never going to have any time alone the rest of my entire life. And that’s hard. And also I feel really egotistical about it. Like he’s got a lot more to deal with than I do like I shouldn’t be feeling that. But you cant help but I want to do that. So it will be interesting to see how it goes I think. I mean overall I think I’ve been happy. I think it’s been a good experience. I think we’ve been good parents for him. He’s been a great son for us but it is really really hard. And there have been times that it’s has been more hard than now.
L: What do you, or how do you, envision Seth’s future? Like what do you hope?
A: I do not know. I do not know. I hope he can find a place. Well first of I hope the aggression doesn’t come back because that’s going to make it impossible for him to live the kind of life that I think he wants to live. I hope he can find a place where he can feel productive, where he can feel confident. I think honestly, at the very least, a place like living with us or living somewhere else. Obviously where he’s treated with respect and where he has people who care about him, but also where he can leave everyday, where he can go do something and then come back home. And it doesn’t have to be eight hours a day and it doesn’t even have to be what other people is productive. Like I don’t really care whether he’s productive by societal standards. I just want him to be productive by his own standards. Like feel like he’s doing something that’s important to him or that gives him some satisfaction. Gets him out of the house and has a place to go back that he’s taken care of him, that he’s loved. So I mean I think it’s pretty simple at this point. So there’s one more treatment that we’ve tried, its not really a treatment, its something called facilitated communication. And it has, like I know there are some people with autism who. Well what happens is they will have a facilitator who will just touch their arm or touch their shoulder and then they can type. But they type these incredible things. And honestly I don’t know if it’s real or not. I know people who can type really well. There have been facilitators that have come with Seth and they’ve touched his arm and he types all this stuff. But its weird stuff like “oh mom I really love and thank you so much for everything that you’ve ever done”. And I mean they’re not moving his hand. And so he really is taping it. Like I don’t know if its hypnotism, like I have no idea what it is. But it doesn’t even sound like Seth. Like when it happens, like I ‘ve taken him to some workshops and when it happens like “oh mom I love you so much” everyone looks at me like “oh aren’t you going to cry, like isn’t it wonderful?” And I’m like well first of all I knew he loved me, like that was never in any doubt, and secondly I’m not quite sure what’s going on here cause it just doesn’t sound like a thing that he would say. But so there’s part of me that like still thinks that maybe there’s something there and like would that ever happen, will he ever get to the point where he really can communicate? Is there ever going to be a cure for autism? Like that he would actually be able to start talking or if not talking would he be able to communicate by writing? He can write really well. He just he usually, left to his own devices he writes about planets or he writes about I don’t know like movies. He likes movie logos, not movies so much but the logos. Like he can tell you all about Paramount 20th Century Fox or like those kinds of things. And maybe that’s really what’s important to him. So I don’t know. I mean I do feel like. I feel like miracles could happen, like really good things could happen or just being the way he is, is a really good thing too. So I don’t know what’s going to happen in the future. I probably haven’t planned enough, there’s probably things I should have done but we’ll see!
L: I know you mentioned before that there were some rough spots where you felt like that ball hit the ground, so if you don’t mind would you share one of them with me?
L: And you don’t have to!
A: Yeah, no, I’m just trying to think of the roughest time. Well I mean the worst time was the time that he was at school. I mean he was at home and he…there’s lots of little times. I mean the big time, so this was like November 4th of 2015 and he had already for like months he had been like scratching us and we would go to work every day and we would have scratches around our eyes. But Oscar and I both wear glasses so like I don’t think anyone noticed. And like he would go for our eyes, like he would try to gauge out our eyes. Or he would have these huge fits and we would have to lock ourselves in a bedroom, like all the bedrooms have locks on it. And the house had interlocks so he couldn’t get out of the house because we knew he would run away. But if he, like he would attack us and we would run into the bedroom and we would lock the door and he would bang at the door and bang at the door and was like “mommy, mommy, mommy”. And I would open the door and he would attack us again. Like and then I would close the door and we would get him out and he would bang on the door and he was like “I want mommy, I want mommy” and I was like are you going to hit me and he would say yes. And I was like what do we do. But then the day he did it at school and he had hit a lot of people at school. He had a lot of problems at school. And he was on, and for a long time we didn’t give him medicine, but then he was on really strong medicine and we were on the strongest dosage we could get and he was still attacking people. So the day that he went to, the day he hit his substitute teacher, and she ended up having to go to the hospital and they called me and I had to go to the school. And then we took him to Mercy. I mean that was…Another day was maybe a few months before that. It’s really funny, it was a couple of months before that. We took him at that time same mental clinic was at Franklin. Oh no. It was actually a couple of years before that! We knew that it was getting so bad that we were like okay we’re going to have to try medication. We tried for so long not to do medication but his medical doctor had given us a medication called risperidone and risperidone, risperadol, its got a couple names. And so we tried that a little bit and it seemed to calm him down at little bit. And so he gave us a little bit higher dosage but then it wasn’t working. It wasn’t working enough like things were still really bad. So I called the doctor and I was like well what do we do now. And he said well I’m just a primary care physician and you know you’re moving beyond my realm. You should go see a psychiatrist. So we made an appointment with a psychiatrist but it was like in five months. And in the meantime he attacked us a couple of times and like really injured Oscar’s eye once and so we called up and were like we don’t have this appointment for 5 months, what do we do? We need to do something. And my medical doctor said take him to Franklin which is where the clinic was at that point and just say you need something right now. That’s the only way you are going to get to see a psychiatrist immediately. So we took him to Franklin and we didn’t know what was going to happen. Were they going to take him, were they going…and that was maybe 10 or 12, he was not that old. So we met with the psychiatrist and the psychiatrist said like well do you fee like you’re going to be in danger tonight. And were like we are in danger every night but we don’t feel like we are in anymore danger tonight. And she was like well we can keep him here or you can take him home and we’ll get him and appointment with a psychiatrist tomorrow. And we were like we’ll take him home then. And we went and saw the psychiatrist and the psychiatrist started giving us medication. In the end I don’t think it was a very good psychiatrist, like he just kept giving us more and more of the same medication and it wasn’t really working. But we kept him on it for years and risperdone has like some really bad side effects, which never affected him. So he was fine that way. But the aggression just kept getting worse and worse. And so the funny think about that day in Franklin, they wouldn’t let his older brother in the room with us, so we were with him and his older brother Etienne had to stay outside of the room and I don’t know why its just little things occur. He was there and he was watching, there’s this show on TV called the Agents of Shield and my kids are big, they both love superheroes movies and stuff and so Etienne was there and he’s watching Agents of Shield for the first time. And he told me all about it like, and Etienne has some sort of autistic traits himself like he can talk on and on. Can you imagine [pointing at herself]! And so he told me this whole story about Agents of Shield. And it’s just funny because now in the last year Oscar has started watching Agents of Shield and Etienne, when he comes home from college, they watch Agents of Shield together and I’m like oh my gosh like I remember you talking about this from the day we were at Franklin So you really remember those moments. But there just really scary moments like what is going to happen. So I think, I mean, the aggression has been the worst, before that, like and I told you already, like when he turned five that was like a really hard time too because that was the, I mean when it was three it was like yes he has autism but there’s all things we can do. When he was five it was like okay now we really have to think about this or somehow come up with how we’re going to do this. So those are kind of some of the deep times.
L: What are some of the experiences you’ve had with other people’s reactions to Seth. Or how did his brother handle finding out?
A: So his brother handled him completely fine. I told you his brother has a little bit of autistic traits. So we went to there’s a monastery school, it’s a public school. That’s where his older brother went to school and that’s where… so I told you I was afraid he was never going to go to school. And then I was afraid he was going to have to go to a school that was just all special education and I was really worried about that. Like I really wanted him to be with other kids. And um and so we went to this school its called Cowles Montessori Its in Des Moines. And so Etienne was there already and when Seth was, this is one of my high moments, when Seth was in pre-school and he was in Special Ed in pre-school and I really wanted to try by putting him in a regular classroom. And the principal at Cowles knew about Seth and said well have you thought about sending him here to kindergarten. And I said well yeah I had but I didn’t think you would take him. She said you know we really think Montessori is for everybody. And we think you should give it a try. So Seth did go to Montessori for kindergarten and first grade. And then after first grade that was a whole other story. It was a horrible story. He had a Special Ed teacher who worked with him, she actually died at the end of the year. She was a terrible alcoholic. She was wonderful with people with autism. But she was an awful alcoholic. She use to call me at night and tell me all these cute things that Seth had done during the day but she was so drunk. And she got liver disease half way through the year and at the end of the year she died. And that was in first grade Seth had some problems to like he had been doing. He had hit some people there too and it was like oh my god that just topped the year. And it was like ok I think its time to go to a new school. But when he was still at that school I would be walking in with him and he would have these temper tantrums and he would just be crying and screaming or kicking and Etienne would be on the other side, like Etienne was only 2 years older, so I’d be holding both their hands. So Seth would be having this huge temper tantrum and Etienne would be telling me this completely off the wall story like about superheroes or about Batman or about Star Wars and I would be like Etienne do you not notice that Seth is having a huge temper tantrum and I need to pay attention to him? And Etienne would be like yeah but I just need to finish my story! [laughs] And to this day Etienne, he’s 21, well he’s 20 is going to be 21, and he has his first girlfriend and he brought his girlfriend home last weekend. And Seth is in the house, and like Seth is pretty calm right now but usually Seth, like at some point he’ll get up and he’ll start running around and yelling. So his girlfriend got to the house, her name is Lisa. She got to the house and Seth is like running back and forth and back and forth and yelling at the top of his lungs and Lisa is just like watching him. And I said Lisa, Etienne told you that Seth had autism right? And she’s like no…[laughs]. So I said to Etienne, how could you not have told her that Seth has autism, and he said well I don’t think its really anything big, that’s just what Seth is like, I don’t have to make excuses for him. So Etienne, he’s like a wonderful brother and he totally accepts him and they truly love each other but he doesn’t entirely understand how other people would take it. Overall I think its been okay. Like when he was five when Seth was five I would still carry him a lot because he ran away. And I remember watching at Jordan Creek Mall and this woman, she was like either the pretzel place or the cookie place, like I don’t know, but I was walking by carrying my 5 year old son and she yelled out to me “are you going to carry him until he’s in college?” [laughs]. I mean I didn’t say anything, I was like bye [waves]. But actually the only other time I felt really judged was, I took him, he loves planets and astronomy, and there’s this classical piece of music called The Planets, which he use to listen to all the time, and we had a video we would watch and it would show the planets and play the music. And so the Des Moines Symphony Orchestra played The Planets. They were going to do The Planets and they were going to show a movie while they were playing The Planets and so I took him. And I was so excited, like ok we are going to go see The Planets. And I took both boys, but Seth, he sways [starts swaying back and forth to demonstrate] so he was swaying back and forth and swaying back and forth. And I thought I was keeping him so nice and quiet and he was really enjoying it. And there was this woman behind me who said “um excuse me can your son please stop swaying?” And I was like all he’s doing is swaying, like he’s not that tall and like its not that…so I said well he has autism and that’s how he controls himself. And she was like “he has autism” and I said yes and so that’s what he does, he sways. And she was like “well what why did you bring him here if you knew he was going to do that?” And I said to her he loves The Planets, he loves this piece of music, I bet more than you possible could, why would I not bring him here. But that was, well honestly in life those are the only two times I know of that anyone has been really judgmental or telling me that I was doing something wrong. Otherwise I mean definitely you get looks and like and you get…but overall on one hand I’m kind of lucky that he is as effected as he is because for most people it doesn’t take long to realize that, like at first he might do something sort of weird and people are like Why are you doing that. But then after they watch him for a minute it’s like oh I see. Like maybe this isn’t weird for him. So, so far people have been okay. I do you think that it gets very lonely. It gets, like especially other mothers who are friends of mine, like who have been my friends since college, and its hard to listen to them tell their stories. You know their stories like “oh my son is doing this”, especially when he was younger. Like oh my son built at Lego castle and all these kind of things, and my older son could do that, but its like oh well no Seth isn’t doing that. But you know what was worse actually is other mothers of other kids with autism because there would be support groups, and you would go to the support groups. But every kid with autism is so incredibly different and every mother, including me I’m sure, was so like, especially when they were young, was so sure that they had found the cure. Like oh yes ABA is going to do, this is going to make my kid better, or then it was special diets. Like if you put them on a special diet, gluten free, casein free, he’s going to get completely better. And you know I would go to those groups and I would feel like…and then they would compare kids. I mean they were the worst! They were like oh my son is speaking in complete sentences now and how about Seth, and no like Seth is not speaking in complete sentences now. And then it would be like well its because you didn’t do the diet and I was like ok I did a gluten free and casein free diet for a year and it didn’t make any difference at all. And then they would be like well its that you didn’t believe, if you had believed [laughs]. But you know these are all mothers who are hurting too right?
L: Yeah, yeah.
A: But it still, like after he was five I don’t think I ever went to a support group again. Like I don’t need to hear these stories anymore so its hard. There were some hard times.
L: I can imagine. What do you think has been your best experience?
A: With autism?
A: Um we went to this conference once, its called AutCon and I don’t know exactly how it works but supposedly it bills itself as a conference planned by people with autism. If it is planned by people with autism, they are very very high functioning people with autism. Most of the people who went to the conference were not high functioning. They were like a lot of people like Seth. Mostly there was adults. Seth was the youngest one there, no there was one other young kid there. But it was, like it was super accepting. Like Seth would get up and walk around. The other kid, there was another kid a little younger than Seth, and he spent the whole conference…like it was workshops, like it was a conference, there were plannery sessions and different workshops you could go to, but the plannery sessions were everybody was in the room together. This other kid would just lay down and make noises and roll around the whole time and nobody paid any mind at all. And his parents were there, and they were just like yep that’s just what he does. And Seth would get up and run around in the back, and no body paid any attention to it. And like other people were there, like adults were there, and they were more mature but they would make noises and they would talk in the middle of things and they would just start yelling. But there was this sense that they kind of all did understand why they were there and what they were talking about and Seth loved it! Like he, and this is sort of an autistic thing you know that you can kind of keep track of dates, like 3 years later I remember him coming to me and saying [Seth runs into room yelling, she talked about this behavior earlier on in interview, so Ann pauses] October 18th, 2005 and I was like what was October 18th, 2005 and I had to like dig through the calendar and I looked it up and was like oh it was that conference. [Seth comes running in again] So this [referring to Seth running in and out yelling] is typical and this is what Etienne’s girlfriend was watching. Oh he won’t trip [response to me moving my backpack out of Seth’s path]. But anyway it was the most accepting place and that felt really good and unfortunately they haven’t had an AutCon close to us. That’s were some of the facilitated communication came in so now I’m a little worried about going back because some of the people did communicate with a facilitated communication [FC]. And we tried that several times with Seth and then the last time we tried it, and he like, well we maybe tried it about 8 or 9 months ago and he had been doing so well at the Homestead clinic and then after he was there, and I don’t know if he’s stressed out by it, who knows, or if he doesn’t like it, but he had an aggressive episode, like he attacked us pretty bad, and that was the first time in so long. So now I’m like [Seth runs in yelling]…like when he would do that [referring to FC] the people who would, the facilitators, the facilitated communication people were with him would say oh its because this is so important to him that he communicate and that’s why he has these attacks. And that could be, I mean its possible, but it’s also possible that he really just doesn’t like it and he’s attacking people because he doesn’t want to do it anymore. So I’m a little concerned about going back to that conference because so many people do it and I don’t know if that’s going to stress him out or if that’s what he doesn’t like. I also went, we went to a conference, there was a conference here in Des Moines actually last year that was a facilitated communication conference. It wasn’t AutCon. But I thought it would be the same way like I thought it would be all these people who would be super excepting and again they were super not accepting at all. Seth didn’t, so other people were typing, well Seth didn’t want to type and everyone was like well why wouldn’t he want to type. And then Seth was making his noises and everyone was like gawking and like can he be quiet and I was like I though this was a conference for people with autism! But I don’t know I mean maybe they’re better autism than him, like I don’t know. But anyway that was the good time that one AutCon conference. That was a really great time because, so one other thing we tried, something called Healing Touch, its kind of like Reiki. Have you, do you know anything about Reiki?
A: So Reiki is like this, like I don’t know they say its like this ancient Indian practice, but um healing touching was…Its this woman who like she feels his, its like auras, like you feel your aura. So she would feel, and when the kids were little I took both kids because Etienne was super stressed out all the time. And so she could feel their auras and she could feel where like the stress parts were. Like she knew and I mean she did say like Etienne would keep all his stress in his jaw. He would always come to me and say my jaw hurts. And she was like she was like doing whatever she does like she runs he hands over the body, like over, like not even touching it. And she was like you have a lot of stress in your jaw and we were like yeah that’s true. And then she did Seth and she was like he doesn’t have any stress anywhere. It’s like oh like realizing that autism, like the aggression you can’t have the aggression and the running off is really dangerous, but the autism itself is not a disease. So that’s like sort of this sense of like if I could live in a world where it was acceptable the way he behaved and people appreciated it, it would be a better world.
L: Yeah! So I know there’s a couple of new shows, or whatever, that have characters with autism, and like they are very high functioning…
L: Of course, but do you think shows like that or media coverage of people with autism is helpful in kind of starting to address the stigma around it?
A: Yes and no. Yeah I think so. I mean I do think there is a lot, well I think the attention that has been paid to autism in the past 15 years has been wonderful if only because there’s tons of money out there for autism treatment now. I don’t know if you’ve ever heard of Autism Speaks but it was it’s an agency that was actually started because right around, probably just a year or two after Seth was diagnosed with autism, the head of NBC had a daughter who had a child, so his grandchild was diagnosed with autism, severe autism. And so these very very wealthy people said we’re going to start Autism Speaks. Now there’s a lot of fighting in the community because there already was Autism Society of America, ASA I guess and Autism Speaks just came along and said like okay we’re going to cure Autism now. You know like every mother who is going to cure autism for her child right. There’s just these really wealth people that were going to cure autism for everybody and it was like well do you think it hasn’t been tried. But it was fine. They got tons and tons of publicity. There’s lots of you know, there are all these different methods, like I don’t like it when we’re told that this is going to work and then it doesn’t or that you’re not a good mom if you don’t do all these things. But the fact that there are all those options out there is really helpful. So yes I do think that part is really good. I think it’s hard you know like Big Bang Theory. I think it’s hard when people watch autism and then they think they know what autism is. I don’t mind it so much but I knew that a lot of mothers with kids with low functioning autism will say, you know like the first question you hear when you tell someone that your child has autism is oh does he have a special skill. Like is there something he does really well? And I mean Seth actually does do some things really well so like that doesn’t bother me. But there are some kids that I bet they do have a special skill but we don’t know what it is because you know they don’t talk at all, or communicate at all. And for those mothers its really hard to have somebody ask that and say no.You know not everybody is, people like not even in Rain Main, I remember reading an article where it said that Rain Man had a particular severe case of autism. Have you ever seen the movie Rain Man?
L: I feel like I have. But it’s been awhile.
A: It’s the first time anyone ever heard about autism and it was way way before Seth was even born. It was Dustin Hoffman. And he’s, I mean he’s, I mean I guess it’s kind of severe but he can talk. Like and he talks in a strange way, like he has a hard time talking but he can talk. And so I remember reading Bad Light the magazine said it was a severe form of autism and I was like if that’s severe what are we? [laughs] So it’s hard. And it’s all the comparisons. So that part’s hard but in the end I think yes I think its great that people know about autism.
L: Good! I know you mentioned that you have had pretty positive school experiences.
L: Do you, have you worked with IEPs and all that stuff?
A: Mmm hmm [nods yes]
L: Has that process also been good?
A: Okay, so I went into to as a tiger mom, not a tiger mom like trying to affect my children, but trying to…so when he turned 3 the first thing we tried before we tried ABA, the first thing we said was Special Ed, we are going to get him into a Special Ed preschool. And so he was like 3 months from being 3 and I called up the school and said I want him in a preschool class the day he turns 3. And it was in February and the school is like no we are not putting him in preschool until next September. And I said no you have to and I knew, like I studied and I had my law books, and I wasn’t a lawyer at that point, but like I had read everything and I was like no you have to and I can sue you if you don’t. [Laughs] So I was pretty mean, I was probably a terrible mother and I’m sure the poor teachers hated me. But they did, they put him in to preschool the day he turned 3, and of course it didn’t work, I mean I thought at that point that this would wake him up, and it didn’t. So then when he went into kindergarten we put him in to Montessori and at that point this principal had been so helpful, so I was really happy about that. And then after two years of that, the first year, kindergarten, was wonderful. First grade got a lot harder. At that point you know he had this Special Ed teacher who was dying and the school was starting to be like we’re kind of worried about the safety of the kids around him, and I didn’t want him to be the kid who hurt another kid so we moved him to a school that had more of a specialized program, which for me that was a defeat like I felt really bad about that, but it turned out to be a good school. Then we got him into junior high and at that point they wanted to move him over to, so there’s a school Smouse, which is a school just for kids with disabilities and I really didn’t want that so in junior high I was like no I want him to go to Callahan. And he did and had a wonderful teacher who was really, really defended him, because he got away from Callahan a couple of times, running down the street. One time he was running down the highway. Callahan is right next to I-235. And then he was hitting people too. And so I remember we had a meeting at which the principal was like I understand that you’re son needs an education but you need to understand that I need to keep the rest of the students safe. And I did, I was like I do, I completely understand that, so how are we going to work on this so that we get two things. So I felt like that was good that we had gotten to that point. Going to Ruby Van Meter was a bit of a, like I felt like it was a setback. IEPs. What I found early on, so I started out really fighting for IEPs, again doing my research like I’m going to write the best IEP ever and what became really apparent to me is that its not about the IEP, I mean its good to go through the exercise of writing the IEP because it gives you the chance to figure out what you really want to work on, what you want to see progress in, but its all about the teacher. And you have good teachers who don’t follow the IEP at all and it doesn’t matter cause they do a wonderful job and then you have bad teachers who follow the IEP to the letter and nothing happens because, and I don’t mean to say they are bad teachers, cause I mean I don’t know that he’s ever really had a bad teacher but definitely had teachers that didn’t understand autism or didn’t want to take the time to understand it, or just didn’t mix with him, like it wasn’t a good fit. So I mean its stressful the whole IEP thing, its really stressful when you feel like the school is sort of out to get you. Like this principal at Callahan, like nice person, I liked him, but I definitely felt like…so when he graduated from Callahan, or when he was in 8th grade, it was like well where is he going to go next, is he going to go to Roosevelt or is he going to go to Ruby Van Meter. And I was sort of, because he had run away so many times then and I knew Roosevelt I knew he would elope and I knew I would get called to the school all the time and so part of me was like I’m ok with Ruby Van Meter, like there are a lot of people there who are going know how to work with him I hoped. But I walked in to the meeting in which we were going to make a decision and the school had like 10 people there. And they were like, everyone, like you could just see like it felt like it was an army against me. And they were like “This is why he has to go to Ruby Van Meter”. And it was fine, like okay he’ll go to Ruby Van Meter but it was also like you just felt like the school had their mind made up before we even discussed it. And I sometimes feel like that still like this year what we were fighting for, because we knew we were losing Homestead services, but what we fought for is getting his homestead staff to come into the school and work with the school staff to learn why is it going so well in Homestead. Because even last year he was still hitting at school but not at the Homestead and not at home thank God. And um except for the one time. But the school was like the schools really skittish like they don’t want people to come in. They really don’t want people to come in and criticize how they work with people with disabilities and so on. But at the same time, so as I say I’ve had these good experiences with school and then I’ve had to fight for things and there have been times when I felt like I didn’t get quite what I wanted. But mostly the school tends to like they get their army together and like they’re going to convince me of something but mostly every time I’ve asked for something they’ve given it to me. And so we went in at the beginning of this year and I was like This is what I want. I want the Homestead staff to come in every single day in the afternoon and train his associates, train the teacher, work with him.
And this school was like “oh well we don’t know if we can do that, liability.” And then they came back a week later and they’re like “yeah we can do it.” So I mean on the one hand I always feel like I’m going to have to really fight for something and then it always seems to just happen fine. So I don’t know like if I have a bad reputation. Like if people are like she’s going to sue us! I’ve never sued anyone! But sometimes I think because they do always give me what I want and it’s good. And in the end looking back, as we were going through school there were definitely times that I thought that I should move somewhere else, that we could have found better schools elsewhere. But looking back on it I think we actually had a pretty good deal in Iowa. Like I think the schools were good schools and they were willing to be flexible and were willing to let us try all sorts of different things that other schools might not have. I do think also though because I have this there’s this group of mothers and most of them are Hispanic and most of them are immigrants. And we all have our children with disabilities. I do think I got a better deal than some of them got with their kids. Because I think that if you’re the mother who speaks up if you’re the mother that goes to every IEP and the like have my plans in order you know and this is what I want and this is what we’re going to do. I think other mothers especially if they didn’t speak English or they didn’t understand the system. I feel like they were railroaded a little more in to schools that didn’t give them the same level of service that Seth got.
L: Do you ever feel like as a mother of a child with a disability you’ve been forced into an advocacy role in any way?
A: I have a feeling I was always an advocate. So I think that came pretty naturally. Yeah. Have there been…no I don’t think I was ever forced. I think that’s just what I would do. And I probably would have advocated… [phone buzzes] I think I was not the most popular girl in high school. I was the smart nerdy person all through school and I think that I remembered what that was like and I think I always knew that I was going to have to make sure that my kids had a better school experience than I did. So even if he hadn’t had autism I think I would have been there advocating for him along the way.
L: Ok! Well I don’t know what time it is and I don’t know if you…
A: Its pretty late…
L: Yeah we can…
A: Can I ask you? You seem like you know, like are you just nodding knowingly, or do you have experience with autism?
L: I actually did an internship at the Homestead this summer so I’m actually very familiar with the Homestead and their services.
A: Oh ok! Where at? Not at Altoona?
L: I was actually in Altoona!
A: Did you see me?!
L: I don’t think I ever did. I was typically in the mornings.
A: Oh and he was afternoons. So you didn’t really….
L: Yeah so I had heard the name Seth but I never met him
A: Well there you go!
L: Yeah! I actually know Kate a little. She was kind of leaving as I was doing my internship but when she came in I was like oh my gosh that’s Kate! So yes I am familiar with some of their services!
A: Ok! Good! That’s great! Did you like it?
L: I loved it! I really really enjoyed me time there.
L: I’m sure you have places to be so I can shoot you an email if you would be willing to do a second interview.
A: Oh sure, if you want me to!