Carol Nesteikis - We Must See the Gray - Season 2 Episode 3

In this episode, Amber & Jason meet Carol, the mother of an intellectually disabled son and a passionate advocate for reform.

She shares how her family was thrust into the world of courtrooms, plea bargains, ankle monitors and public registration after a situation that occurred in 2012. Their story is one of tragedy and triumph, one that shines a light on the fact that criminal prosecutions of those with intellectual and developmental disabilities often lead to disastrous consequences for individuals and their families without any benefit to the public.

In the episode, Carol shares enthusiastically about  LRIDD - Legal Reform for the Intellectually & Developmentally Disabled. Listeners can learn more about their work here: http://www.LRIDD.org

The story of Carol and her family was also featured in a recent article by Chiara Eisner, When People with Intellectual Disabilities  Are Punished, Parents Pay the Price

Transcript

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Carol Nesteikis 

Pre-Roll  

Amber  

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Deb  00:00 

Everyone has a voice, a story to tell. Some are marginalized and muted. What if there were a way to amplify those stories, to have conversations with real people in real communities; a way to help them step into the power of their lived experience. Welcome to Amplified Voices, a podcast lifting the experiences of people and families impacted by the criminal legal system. Together, we can create positive change for everyone. 

Jason  00:34 

Good morning, and welcome to another episode of Amplified Voices. I'm your host Jason here with my co-host, Amber.    

Amber  00:40 

Good morning, Jason.  

Jason  00:42 

This morning, we have a guest. Her name is Carol. Carol is in Florida. She also has a home in Illinois. But today she's talking to us from Florida. Good morning, Carol.  

Carol  00:51 

Good morning. How are you all?  

Jason  00:53 

Very good. So I first learned of you from an article you wrote recently, and I'm sure we'll be talking about that. I won't give that away at this point. But I would like to start with the first same question that we asked other guests, which is, can you tell us a little bit about your life before you entered the criminal legal system? And then how did you get involved with the criminal legal system?  

Carol  01:15 

Okay, sure. Life was very typical. I lived in the suburbs right outside of Chicago, and I had two children.  Back in 1986, my son was born and everything was going well. About the age of two, he wasn't talking yet. And so we started testing. And that kind of led into all the testing of his development and his intellectual ability. And they did find that he was lagging, and he was behind. So we went right into early education at the age of three. And then he spent his whole school career in special education with aids and tutors.  

Jason  02:00 

Before that, had you had any experience at all with any other family members with those types of needs? Or was this complete learning experience for you?  

Carol  02:10 

This was a complete learning experience, yes. And I had to pretty much delve into learning about all kinds of disabilities. At the time, they had him all kinds of labels, learning disabled, and you know, autistic, and just all kinds of labels before he was actually labeled with an intellectual and developmental disability. So I needed to learn. I started reading and learning and I also had to learn all about his Educational Rights.  

Jason  02:44 

So you've already been through new parenthood?  

Carol  02:47 

Well, you know, when you go through that, and he also had some medical problems too where he was having what they thought were small seizures. So we were not only going through his educational needs, but he had EKGs, electroencephalograms. He had MRIs, he had this, he had that. In the meantime, I also had a daughter to focus on.  Yes.  

Jason  02:48 

And now you come along, and you think everything's gonna be very similar. And then all of a sudden, things are very different. Now, what's going on in your head? What's going on in your husband's head? What's happening at that point?  And were you working outside of the home as well?  

Carol  03:28 

In the beginning, I was. As soon as I realized that he needed special education, I just stopped working. And I went into the schools and volunteered for anything and everything. I was the field trip mom, the art mom, the party mom. I worked in the library. I was on the parent-teachers association, just so I could be in the school and get to know all the teachers and the principal and watch what was in his life.  So everything kind of changes. You also make sacrifices and choices in your life, I realized that because I had an older daughter and son both to focus on, that having another child was probably not in everybody's best interest because we needed to focus on that.  My daughter grew up to be a aerospace engineer.  

Amber  04:21 

Wow.  

Carol  04:22 

She has a beautiful family. We never let that part go. We always focused on her. But you know, life does change and your choices change and you make sacrifices.  There were plenty of kids in the neighborhood. And they all played with him when they're young enough not to see differences. But once they start moving on, and he doesn't...  

Jason  04:46 

Yeah.  

Carol  04:46 

They leave and go do their thing. And most of those boys are all married today with children and families of their own, where my son is still stuck in the world of a 10-year-old. So, you know things do change in your life. Because my hope and dream, of course, was for him to be married with children. 

Amber  05:06 

I want to highlight something that you mentioned a little earlier about having to learn about his Educational Rights. This is something that is really important for people who have particular needs, that really understanding what your child has a right to. And that's a whole area of law. So it's a lot to take in as a parent.  

Carol  05:30 

Yes, a lot of reading a lot of going to different conferences, a lot of learning. I had to learn how to be in an IEP meeting where I took control of it, and not let anything get by me because it can. It's difficult to maneuver because you have to make sure that they get other aides and other tutors and everything that they need. So that was a full-time job in itself, really.  

Amber  06:01 

Yeah, yeah.  

Carol  06:02 

We did everything we could to make his life normal. When he was still young enough to play with the neighborhood kids, you know, he did soccer and he did all that. But once those boys moved on, then Special Olympics came into play. And he just loved that. And special recreation is where it's supervised activities, with his peers, with his own disabled people, where he made a lot of friends. So he was very happy in that. I mean, he competed a lot. He has a whole wall of gold medals and trophies and things. He was very happy. 

Jason  06:39 

Was there a particular sport or activity that was his favorite? 

Carol  06:44 

He was in everything. I mean, he's a lefty, so he loved softball, baseball, he loved all that. And they kind of liked having him pitch being a lefty. He was in everything swimming, weightlifting, golf, Bacci ball. He did it all, so he was very athletic. At that time, he did really well. And later on, he started scuba diving with Dive Heart, which is an organization who teaches the disabled. 

Jason  07:11 

How old is he about at this point? Are we still in school? Is it...  

Carol  07:15 

Dive Heart came pretty much right after high school when he was a little bit older. High School was mostly Special Olympics and special recreation. They would go to the show where they would go out to dinner. There would be supervised train personnel and they get on a bus and do stuff like that. So he made a lot of friends that way. 

Jason  07:39 

So for you, you get to a point where you're advocating for him in the school, learning how to do the IEP s, you're getting him involved in Special Olympics and all these different activities. So you get to normalcy, right? And you've got your other daughter who's a few years ahead. So she's going on to college. And so your family gets into a group, right? 

Carol  08:03 

Yes, we did all the typical family things. We went on vacations, we went camping, we went fishing, we did all the typical things, while we were trying to make sure he was happy and fulfilled. And you know, when they're in school, it's a lot easier because there are a lot of options with education and things that you can make sure that they get. It's once they get out of school, where they go into the cracks.  We did put him into Transition, where he had little bit of job training. And this was after high school. And Transition will take them on jobs for 90 days at a time and try different things, working in a video store working in a carwash, things like that. But once they get out of that, then it's kind of like, okay, now what do you do. But we wanted them to work, you know, whatever capacity he could work.  So the Department of Human Resources is a government service that takes him and they give you a job administrator and she will go and find jobs for disabled people and kind of open the way for him. And then help him with an application and help him with the interview. And once he gets the job, then he gets a job coach. And the job coach stays with them for a while until she can or he can kind of back off a little bit. So that's where we were. 

Jason  09:34 

And who's doing that, the state of Illinois?  

Carol  09:36 

Yes. 

Jason  09:37 

Okay. 

Amber  09:38 

Okay.  

Carol  09:38 

And so, he did get a job at a restaurant, wiping tables, cleaning the restroom, cleaning the parking lot, things like that. So he had a little job, he had a scuba diving, he had Special Olympics. So he was a pretty happy kid.  

Jason  09:55 

Good.  

Carol  09:57 

The story turns you know back a few years ago. He was 14, a little 10-year-old boy moved in next door to us. And they were fostering him and he came from a very shattered home. So he was a very angry little boy and he did have some disabilities. He's not like my son, he can live on his own and things like that.  So having a child with disabilities, I kind of took him under my wing. And our whole family got really close to him, took him on our camping trips, and he was at all our family parties and things like that. But as this young man got older, he got confused. And he didn't get the therapy that he needed. And we just let him know that we were there for him.  But things went wrong in 2012 and his past came back to haunt all of us, actually. So that's where life took a turn. 

Jason  10:58 

So 2012, how old is your son? 

Carol  11:02 

My son was 26.  

Jason  11:06 

Okay.  

Carol  11:07 

This boy was about four years younger.  

Jason  11:09 

Okay.  

Carol  11:11 

He went through a lot of sexual abuse in his life, he and his brothers and sisters. And they all ended up in foster homes and it was horrible for him. I mean, I can't say that I blame him because he just had a horrible, I mean, talk about a horrible life, the poor thing. And so, he started to abuse my son, sexually. And he had a niece that lived with him and he was also sexually abusing her.  So we had been friends with these neighbors for like 17 years, and my son would be at their house, so I had no reason to worry. But they came over one day and said, our son has been sexually abusing their - they weren't related to the little girl in the house, but she was there with them. Because the mother of this little girl would come and she'd go, and she'd come and she'd go. So they said they were taking their son to the police and they were sorry that my son was involved in this, but they had to do what they had to do.  And that kind of started everything. I mean, we were thrown for a loop. What do you do? I don't know what to do. I don't know how to get a lawyer. I don't know what's going to happen. And actually, nothing happened for six weeks. Everybody kind of thought, well, maybe they realized he was disabled, and it would be okay. But they did come for him. And I didn't want to open the door because I just didn't want to let them take him away. So I called my attorney and I said, we'll bring, you know, you can bring him in. And they brought him in that afternoon. 

Jason  13:01 

So they came to the door and you knew what was going on. How many police officers? 

Carol  13:07 

I think there was a couple of detectives. They were in like a plane car. But I had seen them pull up from next door so I knew they already had the young man in the car. In my mind, I'm not gonna let him take them. I'm not gonna let them walk him out the door. I'm just not, because he doesn't know what's going on. 

Jason  13:27 

At this point, had you had any conversations with him between when you discovered what was going on and when the police showed up a few weeks later? 

Carol  13:37 

We had a conversation after the neighbors left. And I said, What's going on? And he told me what had transpired that this young man was sexually abusing him. I said, Why didn't you tell? And he said, Well, he told me not to. And they weren't friends that hung out together or anything like that. But because this young man was at our house so much, they knew each other. And Adam being more disabled than this young man and was in Special Olympics and everything where this young man was not. So he had his own friends and things like that.  So he did tell me what was going on. And basically, my husband and I were like, what do we do? I had a friend who was an attorney and who said, Well, let me see if I can find an attorney. I don't know any criminal attorneys. I've never been involved in anything like this at all. Nothing. None of my family, nothing. And so we had two attorneys that took the case, but they were never exposed to anything like this either.  That's why training is so important because throughout the whole system. Because you know, they had no education in what my son's disabilities were. I mean, I have piles and piles of documents. But for them, this was a case of well, what do we do? 

Amber  15:01 

So you're saying even the attorneys that were representing your son had a whole learning curve on this? 

Carol  15:09 

Yes, and I don't think it was enough, even though we gave all the documentation they needed. I don't think it was enough for them to really stress to the court system that this is a victim. This is someone who has the mentality of a 10-year-old. And you know, we need to come at this from a whole other angle. And I don't think that they just knew enough about it.  I took him myself for a, like a sexual evaluation with a psychologist. And he saw that he was very easily taken advantage of and easily manipulated. And he was very naive when it came to any sexual things. You know, they don't teach them in high school. They teach health and things like that, but they don't have anyone who teach them on their level, in simple concrete language, that they can learn. So he was very naive, he didn't know a lot. And I had that done and the attorneys didn't want to use it because my son would not admit to guilt, because he didn't know what he did. He just didn't know what he did wrong, you know.  

Amber  16:27 

So, I mean, you're talking about someone who may have the appearance of being 26 years old. But when you think about a 10-year-old, and their ability to grasp consequences of actions, or even what certain actions are, it's just minimal. So I can't even imagine, from his perspective, or your perspective, what you were going through, when the legal system is basically saying, Okay, this person is 26 years old and should be treated as such. 

Carol  17:02 

Absolutely. If you look at him, you don't really know until you talk for about five minutes, I would say. And then you know. So that's the hard part because in court, he was really never talked to at all, except when the attorneys told him what to say. So he was never asked questions.  

Jason  17:26 

So going back a step, even leading up to what happened. You told us earlier that when you first started off, you had to learn everything. You did as much research as you could. And when you were doing that research, nothing said, Hey, by the way, look out for when your child becomes a certain age that things could start to happen. It just wasn't there. Right?  

Carol  17:47 

Well, I will tell you that never in my wildest dreams did I ever think that this would happen, no. Back in school, his teachers would write reports and say we fear that someday he'll be taken advantage of or manipulated. But never, ever, even after the fact, after it happened and we were going to court, did I ever think for a minute that this would go as far as it did. And you think you're the only one that it's ever happened to. Because you're like, no, this is not real. This can't happen. But it did. And when I found out I was not the only one.  And that's why changes have to be made and training has to be made. Because you know, the autism rate is going up. And there's not only autism, there's fetal alcohol syndrome and Kleinfelder's and Asperger's and, and what my son has is the old terms were mental retardation, but they do call it the intellectual disability now.  And we cannot be compared with mental illness either. There is a lot of mental illness in the courts, and they even have their own court a lot of times. We get confused with that. Mental illness, you know, you can use medication to manage that where there's no cure for any of these disabilities. That is neurological and there's no cure.  So changes have to be made because I never, ever, ever thought that this could be happening to me. Never. I thought I'd be retired and living with my husband, my son, and the rest of my family, and life would be good. 

Amber  19:33 

So Carol, after they came to pick your son up, take us into kind of what happens after that. 

Carol  19:43 

Well, we did go into the police station and my attorneys were very good at making sure that they did all the talking. Because, there again you, have another whole situation where if you put him in there alone, he can be made to say anything and everything. He could admit to anything you want to do, if they were to say, just say this, and you can go or whatever. So my attorneys were very good at making sure he didn't say one single word. And he didn't.  So it was a Friday, which meant that he had been the night there in the jail cell. That was the most horrific night I've ever spent, that's for sure. My husband and I were up all night. He was in the cell with the other young man who he said paced all night. I asked my son, were you afraid and that and he told me, he was not afraid because Jesus was with him. I don't know where you pick that up. But he said Jesus was with them.  So the next day, we had to go to the bank, and empty out an account, because we didn't know how much money we needed. The attorney said have $10,000 with you cash, cash. And we had to go down to 26th and California, which is the Cook County Jail down there, and stand around with $10,000 in cash in our pockets. So the lawyers came right away and went in to make sure he was okay, because he was sitting in this huge jail cell with all kinds of different people. And they watched over him until we were able to bond him out later in the day.  And then we spent the whole next year in court after that, just trying to maneuver through this. And he didn't know what was going on. I mean, he's got sensory issues where he only wears certain clothes, and we would have to get him in his shirt, tie, in his dress pants, which was difficult to say the least. And he would go sit in court. And after every court date, he'd say to the two attorneys, you know, when you'd go out in the hall and talk, he'd say I'm gonna buy you dessert when this is over. So he never ever thought that this was anything big that this was happening. I have to get dressed up and sit here. But you know, it'll be over. And that's it. 

Jason  22:14 

That's the worst of it is putting on the clothes and going in. Right?  

Carol  22:18 

Exactly. I had to take off work, of course, and my husband did. And I was pretty open. I let my boss and my close co-workers know what was going on. And everybody knows my son. They were all just do what you need to do. All our neighbors around us, family, friends, they all support us. They wrote letters to the court and wanted to know why this was happening to him because he was actually a victim and he doesn't understand. So I did get the support of everyone.  I did get a letter saying you know, we don't want pedophiles in the neighborhood, which the police said, just save it, you can't really do anything about it. But I never, ever heard from anybody again. So we were very fortunate, you know, you hear a lot of things. And you know, my son is in danger being on the registry, because his name is out there. And he's vulnerable to any kind of attacks or anything by people that think he's this horrible person. 

Amber  23:25 

So before we go into that piece of it, just talk a little bit about how the case resolved. 

Carol  23:32 

Okay. Well, we did go to court for a year. A lot of it was just menial things. They never came for anything from us. Like the young man next door, his phone, his clothes, they took all that stuff. They never questioned us, my husband and I they never came and took anything from the house. Nothing. So a lot of court was just either continuances or waiting on Discovery, which I don't even know what discovery there was. And it went on for a year though.  They had 19 felonies on him. And believe me, I looked at them page after page after page and I was astounded. I'm like, where are they getting this. But I did have a friend who was a retired attorney who said, you know, they'll just pile on charges, pile on charges, and see what they can do with it. So there were 19 felonies which could have put him easily in prison. So when it came right down to it, the attorneys had said to us, the prosecutor was going to offer a plea. And if we took the plea, they would drop the 19 felonies. And the plea was one misdemeanor charge.  So the catch was, if you don't accept the plea, then we will go to trial with those 19 felonies. And you know, my attorneys basically said he could either go to prison or be institutionalized. I mean, being an institution, there's all kinds of abuse and things going on there as well as the prisons.  I mean, can you imagine him in a prison. He doesn't eat a lot of things. He's got sensory issues, as far as lights and sounds, and material that he wears. And he doesn't understand a lot of rules. So, I mean, a lot of people say, Oh, you don't take a plea if you're not guilty. Yes, you do. I needed to save his life because I don't think he'd be here with us today if he went to prison or in an institution. He just wouldn't have been able to do it. 

Amber  25:45 

Carol, I think it's really important that you share that because a lot of people who have never encountered the criminal legal system do have that view. 

Carol  25:54 

Yes. 

Amber  25:54 

Myself included, before my life was impacted by it. I would never have thought, Oh, if somebody's not guilty, they didn't do something, you know, they're gonna fight to the death because our system is fair. And if you didn't do it, then you just have to fight for yourself and your rights and your innocence. But it's a very standard tactic for prosecutors to bring many, many, many charges, anything that they can find that's even remotely relevant, and use that as a negotiation tactic to have people pleading, rather than going to trial.  And when we talk about cases that have to do with this particular topic, it becomes even more complicated because some of the evidentiary rules are a little bit different. And so I appreciate you highlighting what kind of choice as a family do you actually have when you have someone like your son, who just would not be able to survive a period of incarceration. So you know, I really want our listeners to hear that and understand that, and I thank you for sharing that.  

Carol  27:09 

Yeah. 

Jason  27:10 

And typically, the person making the decision is the person who's going to be facing the consequences. This decision is falling on the family members, right? I mean, he's not going to be able to make that choice.  

Amber  27:22 

Yeah.  

Jason  27:23 

How does that all work in this situation? 

Carol  27:26 

It's very hard. That's very hard because I am actually directing where his life is going now. So yeah, it's hard, because we had to make that decision. He had no idea what was going on and, yeah. 

Jason  27:42 

Was there much conversation between you and your husband? Did your daughter get involved? Or was it just, this is what we're doing, this is it? 

Carol  27:48 

You know, I did not tell my daughter, probably until after my son left our house, and they were coming for a visit. And the reason was, my son-in-law was in the Air Force then, he was a fighter pilot. He was in the Middle East. I could not burden my daughter with that, you know, when she's worrying about her husband, and she was overseas also. So she was in England when he was deployed. She was not here. So I was able to keep it from her.  And I kept it from her until court was done, the plea was taken, and my son had to leave our home and she and her husband were coming for a visit. And I'm like, well, oh, she's gonna say, Where's Adam? I had to come forward with it. And she took it really, really hard. Very hard. That was very difficult for her to understand. I had to really walk her through everything. You know, she blamed me a little bit. And I've heard this before, but you know, why wasn't I watching him more closely, and. But she got over that and is one of my biggest supporters now, of course. 

Jason  29:03 

But again, it's not... I mean, that's....phew. 

Carol  29:07 

Yeah.  

Amber  29:08 

That's a lot to carry. 

Carol  29:09 

Yep.  

Jason  29:10 

You know, you're trying to protect her. So now you have to carry this extra big, big news that you know is just life-altering for your family. You have to shield her from that. And then finally, you make this decision to tell her and her reaction is, is a natural one, is to try to find someone to blame and lash out at you because you're right in front of her. But that's hurtful for you. And it's hurtful for her in the end. So everybody's just hurting. 

Carol  29:40 

Yes, exactly.  Right after this happened in 2012, in March, my mother went into hospice. So I was maneuvering the court system while I was sitting every day with my mother. Plus I had in-laws in their 90s also starting to fail and we were keeping this, of course, from everybody in the beginning. You know, I was trying to take care of my mother. And then she passed in April, about a week before they came for my son.  So even though I have four other brothers and sisters, they were all out of state. I was pretty much in charge of taking care of everything there. So I was taking care of that, and getting her remains taken care of, and things like that, while I was trying to maneuver this. So I was a mess.  The day that we did take the plea is the day my son and my husband had to leave our home. And I think I had a breakdown that night. I woke up and I was on my back porch deck, just I don't know what, what it happened evening. I just, I think I just broke down because, you know, they left and there I was alone in my house.  And yeah, a lot went on during that year, like I said, I was trying to take care of my mother and I was keeping things from my daughter. And at first I backed away from friends and things until they finally came and said, Hey, listen, you know, you're not going to do that. We're going to help you support you. So... 

Jason  31:14 

You know, you're losing your mother who would have otherwise been a support system. At one point your daughter's mad at you. You feel like you're losing your son and you're terrified. Can't imagine the stress that you were under.  So you took the misdemeanor, and that was in what year? 

Carol  31:30 

That was in June of 2013. We had pretty much been in court from probably May of 2012 to June of 2013. 

Jason  31:43 

So then in 2013, the cases over. Is there a probation? 

Carol  31:49 

There was two years probation. They also put an ankle bracelet on him, which for someone with sensory issues, he was scared to death of it. For two years, he slept with his leg on piles of blankets because he was sure it would go off and they were going to come and get him. For two years we all had to live that curfew because he went everywhere with us. If we went out to dinner, he was with us. Or if we went somewhere he was usually with us. 

Jason  32:20 

So you're in Illinois, right?  

Carol  32:22 

Right.  

Jason  32:22 

And they have restrictions about where people who have committed sex offenses can go. So he can't be near a school. So if you drive by a school, do you have to call in and say we're just driving by we're not stopping? Or is that not really an issue? 

Carol  32:35 

No, we had to make sure when we bought the place for my son and my husband to live, the probation officer came out and approved it. So we had to make sure that he wasn't living near a school, or a church with a daycare, or a park. 

Jason  32:52 

You already had a home there. So why do you have to buy another home? 

Carol  32:55 

He had to move out because the victim was next door. So he had to move out. And that young man who lived next door, he had to move out of his house also. So since my son cannot live on his own, my husband had to move out with him. 

Jason  33:12 

So you remained in that house? 

Carol  33:14 

I did for five years after. 

Jason  33:17 

your husband and your son got another house?  

Carol  33:20 

Mm-hmm.  

Jason  33:21 

Okay. 

Carol  33:22 

Just a small one-bedroom condominium. I mean, we just spent hundreds of thousands of dollars on court fees and attorneys and all kinds of different things. We had to pay for psych evaluations and that. So when my mother passed, there was a small inheritance that we were able to use to buy a one-bedroom condominium. It's a safe place. And they moved in there. 

Amber  33:48 

I do want to talk a little bit about those types of proximity and residency restrictions.  So he already had a home, he was on an ankle bracelet, and the person who was affected is living next door. So there was the need for him to move out. We have had lots of conversations and interacted with a lot of people who, the person was not living next door however, because of the zones and different things, had to move out of their homes. And it seems like while extremely difficult, you had the means to hobble together to buy a condominium.  Not everybody tends to be in that situation, in terms of being able to buy somewhere else. It's difficult for people who fall in this category to even get somebody to rent to them. It can change at any time if somebody opens a daycare in their home next door, so what is a safe place now that is okay and approved, next week could not be. Am I characterizing that correctly? 

Carol  34:59 

That is exactly true. We were very blessed. I mean, I think that was my mother's last gift to me because the inheritance that she left all her children, my share just about paid for this condominium. So I always say that was her last gift to me. I mean, she never knew what was going on, but... 

Amber  35:20 

Wow.  

Carol  35:21 

Otherwise, we would have had to take out a mortgage or I don't know what we would have done. You know, like I said, all my brothers and sisters lived out of state. I had no word for him to go. 

Jason  35:33 

I don't know how close you are to Chicago, but we're familiar with an organization called the Chicago 400. And that helps a lot of people who are on the registry who have been forced into homelessness. And those individuals have to register on a weekly basis.  At the beginning of this year, we saw some of their artwork, where they drew pictures of where they have to stay and how far they have to travel each week to go to register. And inhumane is the only word I can come up with. 

Carol  35:59 

It is, I know. Laurie Jo Reynolds is working hard on that.  

Jason  36:02 

Absolutely. 

Amber  36:03 

It's a wonderful initiative. 

Carol  36:05 

Yes. We've worked together, Laurie Jo and I, many times. 

Amber  36:09 

So how long was it, and I think you may have mentioned that it's kind of still going on, that your husband and your son, and you are not necessarily living in the same place. 

Carol  36:23 

We kept our family home for five years, but it just got too difficult. I was going back and forth between the condo and the house. You know, we still had to maintain the house. And I would go over there and spend time. Fortunately, it was only a few minutes away. So it was good. But for two years when he was on probation, we had to live that probation with him as far as curfews and that, not that I couldn't go out after six, but if we did go out, we always took him somewhere. So we pretty much made sure that we were always with him after six o'clock. 

Jason  37:01 

And for probation, he had to check in how often? 

Carol  37:04 

You know, it starts out where it's weekly, and then after a while, it goes further and further. And we were very fortunate, again, the probation officer and his partner, they knew right away Adam was no threat and that he was disabled. They would come to the house and they were always friendly. And they understood that I had to be with him in the room for check-in for probation because they usually don't allow that. But I needed to be with him in there all the time. 

Jason  37:35 

Did they make him go to any treatment? 

Carol  37:37 

That was part of the plea. He would go be in a sex therapy group. So right after probation started, we were given an appointment with the therapist, and I took my son there. And he spent 10 minutes with him and then he called me in. And he said no.  

Jason  37:57 

Good.  

Carol  37:57 

It would be a detriment. It would harm him. He would hear things that he never heard before.  

Amber  38:04 

Yes.  

Carol  38:05 

And it wouldn't be good for him. So he did write a letter to the judge and said, No, his disabilities are too severe for him to be in any kind of group therapy. And so he did not have to go. 

Amber  38:18 

Well, thank goodness. Again, going back to where he is intellectually, that would be putting someone who is basically 10 years old, in an adult group having to deal with some very serious issues. 

Jason  38:33 

We hear so many horror stories, and your story is certainly up there, to have them say he doesn't have to go through this treatment. That was something that went right. And, you know, I just wonder how many people are out there who don't have an advocate like you in their corner, who end up in that sort of treatment. I don't know. I mean, I don't know if anybody's collected those statistics. But I'm glad that you didn't have to. 

Carol  38:55 

I have heard from some of our members whose sons ended up in that therapy and it is harmed them. It is done a lot more harm than any good that it could have done. So yeah, we were fortunate in that way to have a probation officer that realized that he's disabled and he's of no threat. So they were always kind and didn't have to go to therapy.  And the police department is also very good. They were trained and they know he's disabled. They always let me in when we go to register. They let me sit with them. They let me look at anything he signing. I go back when they're taking pictures and fingerprints and all that and sit with him. So I've been fortunate in that area. A lot of people that I know have not. 

Jason  39:47 

So we talked about probation. We talked a little bit about the registry. What prompted you to become more vocal, become an advocate, tell your story, write an article, all these types of things? How did you end up going from concerned mom to I'm going to help others? 

Carol  40:04 

Well, like I said, when this all happened, I felt like I was the only person in the in the world that this could ever happen to. And I just started contacting everybody I could think of: ARC of the United States, the ARC of Illinois, this person, that person, and the ARC of the United States reached out because they have the National Center for Criminal Justice and Disability. And they were starting to work on this issue with people with disabilities in the system.  So they were going to do a webinar in 2015, about this issue. And they asked me to speak on it. And they asked another parent in Virginia, who was also in the same situation, to speak. And they had 1000 people sign up for this webinar before they had to close it down.  So I got to talking with this other parent. We realized we're not alone. This is big and there are a lot of other families. So we picked up another parent on the way in Virginia, who contacted us. And we kind of went from there, just the three of us, trying to build.  And the ARC of the United States would refer people to us, that would call them, that got in the situation. And then we started to grow. And more people kept calling and calling, we're in this situation. And you know, we have people in our group that the majority is sex offenses, because, you know, our kids may be 10 years old, but they're grown body with hormones and things. They're curious. 

Jason  41:45 

Mm-hmm. 

Carol  41:46 

So they get caught up in these things, you know. They click a computer, and all of a sudden, they're looking at things they shouldn't be. Or like my son being taken advantage of. He's a grown man with hormones. So they just get caught up in this.  So we kept getting more and more members. And finally, we gave it a name and we just worked with other organizations and started growing. And so we are nationwide and we do have some international contacts also. The acronym is LRIDD and it's Legal Reform for People With Intellectual and Developmental Disabilities. We're everywhere, and we form liaisons with the Florida Action Committee, Illinois Voices, and WAR and... 

Jason  42:34 

Restorative Action Alliance. 

Carol  42:39 

Anybody who wants to come along with us for the ride we take with us. We offer a lot of support for our families because they feel like they're alone too. You know, with our members who have children in prison, they're having a very, very difficult time. And we've got some, where they're being manipulated by other inmates. Money taken away that's given to them and things like that. So we offer as much support as we can.  We're trying to make change. There's been some bills passed in Virginia. I am on the Illinois Governor's task force for people with disabilities in the criminal justice system. And we have a group of 30. It's very hard to zoom 30 people.  

Amber  43:26 

Right.  

Carol  43:27 

So we are going to start our meetings actually next week but we are in smaller committees to see if we can get something done. But I'm going to try and piggyback on a lot of Virginia's bills in regard to diversion and training. And second chances is another bill that's being worked on for our kids that are already in the system. So we're kind of working on things like that. And I've always been one where the public has a view of those of us on the registry. We wear that scarlet letter for the rest of our life. And the minute you say sex offender, and I don't like the word at all - it connotates that they're out there, offending - you know, you wear that forever. And things have to change.  And that's how, you know, I kind of got on the bandwagon because I have to keep fighting until my last breath. You know, my burden will become my daughter's because she has to take care of him when I'm gone. And in Florida, no less.  

Amber  44:29 

Right.  

Carol  44:30 

The laws in Florida are horrible, because even though my son will come off the registry in Illinois in 2023, if something happens to my husband and I and he has to come down here, or whenever he has to come down here, they will put him on the registry for life. No matter what. Just because. 

Jason  44:51 

If you could go back and design a system, is there something that could be developed, that doesn't exist? And then, are there changes that could be made so that he doesn't end up in this situation that we're talking about now? 

Carol  45:04 

We are trying to pass bills in regard to specially trained personnel in the school system. Again, like I had mentioned, where it's trained towards that particular disability. And you know, autism, and that can run a whole spectrum. So it has to be trained towards the child in a way that they understand what's right and what's wrong, and so on. So I think that, that has to be first and foremost.  And the parents have to be involved in that too. I think sometimes when we have kids with disabilities going through school, you kind of shut your eyes to the fact that, you know, they want girlfriends. And they see people getting married, their brothers and sisters, and having children. They want that, even though they don't know how, or they're not capable. But they do want it. And sometimes we shut our eyes to that fact and just think, Well, you know, I gotta do the best and keep them happy and things like that. But they really do want it when they get older. And so we have to teach them specialized training in sex education and things like that. 

Jason  46:20 

Is that happening anywhere? 

Carol  46:23 

Yes. We passed a bill in Virginia. They passed a bill in Illinois, but it's more for group homes and institutions and things. They haven't really put it in the school system yet. But Virginia did, they just passed that law there. I would imagine there are some states that do. But Virginia specifically, you know, our members wrote up this law to make sure that it is in the curriculum, in the IEPs, for specially trained people to come in.  And then Aside from that, we need training all through the court system in regard to disabilities. Like I was told, it's black and white, there is no gray.  

Amber  47:01 

Right.  

Carol  47:01 

So if there was gray, then you could take individual cases, instead of just lumping everyone into that same area. And that way, there would be change. You have to have gray, I think throughout the system as a whole. 

Jason  47:21 

It's so clear that taking your son and putting him into prison would not have benefited anyone. And it would not have made anyone safer. So that's clear. Number two is the fact that he's labeled with this shame label for the rest of his life. We're causing more harm rather than protecting and doing good. But the general public still believes that we're doing something really good by slapping this label on your son and doing all this additional harm to him because he deserves and has it coming to him because he is the worst of the worst. And so that's what you're trying to get changed. And hopefully, we see a change, soon. 

Amber  48:02 

I think it's important to note that education is key. And I'm really glad that you brought up the idea of people in the system. So when you think about your case and others, you think about the prosecutor. So the prosecutor made a choice, that rather than handling the case, in a different way, and focusing on the harm that was done and how to repair the harm, it was, who broke a law? and how do we punish that person?  

Jason  48:33 

Sure. 

Amber  48:33 

Regardless of who that person is. So if there were mechanisms available, and different prosecutors in different areas have different tools available to them, in terms of diversion programs, or restorative justice, or none of that in some places. So I think that policies that focus on the harm that was caused and how to repair it, rather than causing more harm all the way around to your son, to your family, to society at large, because now you have a situation where we have to rectify all of this harm caused by the state. It's really important that prosecutors, who have the most power in the system...  

Carol  49:16 

Right.  

Amber  49:16 

Have a bit of training on this as well. 

Carol  49:18 

Absolutely, absolutely. And you know, I hate to say it, but even though we took the plea and all 19 felonies were knocked down to one misdemeanor, it was still a win for her. And that's what they strive for is a win. 

Amber  49:35 

And did you fully understand at the time what registration was going to mean for your family? 

Carol  49:41 

Pretty much everyone told us do your 10 years, and you're done. I was told that I was fortunate that it got knocked down to this one misdemeanor and do your probation, don't get any violations, do your 10 years and you're done. And it seems like Nobody knows that once you put that conviction on you, it doesn't matter, after it's 10 years or up, the only thing that's gonna change is I won't have to take them to register anymore. And I'm going to have to work my butt off to get him off all those registries and names on the patch and everything like that. That'll be another thing I'm going to have to do. But even after those 10 years, he's still got that label and conviction, and all the rules and restrictions, they go on. They don't change.  

Amber  50:32 

Right.  

Carol  50:32 

Nothing will change for us at all. That's why my only thing is to try and get him, if I can get him a pardon, if I can get him an expungement. I mean, I'm working on that now on my own without an attorney, because, frankly, I don't have any more money for attorneys. We went for a post-conviction petition. I had to spend thousands more for that, and the judge wouldn't even entertain that. So I don't have any more money. So I'm doing it on my own. 

Jason  51:05 

If none of this had happened, would you and your husband and your son be living in Florida right now? 

Carol  51:10 

We would. We're both retired now. That was the goal to move down to Florida here. My daughter's here. Like I said, she will be his caretaker someday. So I do have to get services that I get in Illinois transferred to Florida. And that in itself is a very big and long deal to do. Because it was hard enough to get his services in Illinois. Now I have to restart getting his services for my daughter to take care of him in Florida.  So that was the goal to retire here in Florida. She's here. Her in-laws are here. That way, you know, I could prepare her for taking care of him. And so really, yeah, that all kind of got shattered. 

Jason  52:01 

Our society has so failed your son and your family. 

Amber  52:06 

It failed everybody all the way around. 

Jason  52:08 

Right. And he's one of our most vulnerable members of society and we just really botched it. For a culture that's supposed to be one of the leading examples in the world in 2020, we just botched it. And I don't know how anybody can listen to your story and not just have their heart go out to you and your family. So, boy. Amber, you have anything you want to add before we?  

Amber  52:34 

Yeah, you know I do. Because when we think about this story, and Carol's been so amazing to share so openly. And I loved your article and I love the work that you do. I really - and I say this quite often, but I can't say it enough - I stand in awe of the families, and the resilience, and the spirit of reconciliation and love that we all still exude into the world. Because what we want for everyone is safety and healing. And I'm really in awe of all of the work that you're doing. Everything that you've been through. Sharing your story, if we just have that one person who's sitting at home, who's on that back porch like you were, having that nervous breakdown. I'm sorry, I'm gonna cry. And hearing you and saying, I can do this. I can get up tomorrow and I can say, There's another day for us and there's people that care what I'm going through.  

Jason  53:38 

Right.  

Amber  53:39 

And sharing their stories, and working with legislators, and working with other families providing that support. So I'm really proud to have had you as a guest and I'm really excited to put the information about your organization in the podcast notes so people can access that. And look forward to working with you in the future to really make some changes that are sorely needed. 

Jason  54:05 

So this is your opportunity to tell us first, if there's anything that we missed in your story, let us know. But also, you mentioned your organization, say the organization's name again how people can reach out to you, and any other thing you want people to know about. You've mentioned Laurie Jo Reynolds. Anybody else that you want to acknowledge, this is your opportunity to do that. 

Carol  54:25 

Oh, thanks. Okay. Well, my organization is Legal Reform for People With Intellectual and Developmental Disabilities, LRIDD. And you can find us on lridd.org. We just revamped our website, so that should be up soon. We're on Facebook and Twitter. And join us, if one of your children are out there with a disability in the system, we're there as a family to support everybody. And I think because of this situation, we're all going to fight to our death.  

Amber  55:02 

Yeah.  

Carol  55:02 

And beyond, I hope. Where it will go on and on and on. Because change is slow. And I hope that my family is free in my lifetime. I really do. I'd like to be a family again and live our life as a normal family. But we'll fight until we have no more fight left in us and just keep going. I mean, I, I have to. I have no choice, I have to. 

Jason  55:30 

All right. Thank you, again, so much for sharing your story and being here. And you're an inspiration to many, many families. And you use the term family for your organization. I got that sense. I think you're on a good path. So thank you for joining us today.  

Carol  55:45 

Thank you.  

Jason  55:46 

Until next time, Amber. 

Amber  55:48 

We'll see you next time. Thank you so much, Carol.  

Carol  55:51 

Thank you. You've been listening to Amplified Voices; a podcast listening the experiences of people and families impacted by the criminal legal system.  

Lilly  56:10 

For more information, episodes, and podcast notes, visit: amplifiedvoices.show. 

Post-Roll 

Tim 

Amplified Voices is produced by Whole Human Productions. Executive Producers include Chris Vlangas, and our hosts, Jason and Amber. The intro is voiced by Deborah Vlangas, the outro is voiced by Lilliana Vlangas, and the music is composed and produced by me, Timothy Vlangas. If you'd like to support the production of the show, please subscribe at patreon.com/amplifiedvoices. 

Thank you.