As parents, you want your child to be healthy and happy. And you’ll do anything to make that happen.
But that’s not always easy when your child is autistic.
Science and medicine has learned a lot about autism, but there’s still a lot of mystery around it as well. What causes it (if anything), how to treat it… there are lots of questions that are still unanswered. And a successful treatment protocol for one person might not work as well for another one.
My guest today is Sarah. She and her husband, Brian, have a son named Devon, who has severe autism. Devon would have sudden behavior incidents that often turned violent, and he could hurt himself, or his parents, or his siblings. Of course, as his mother, Sarah wanted desperately to help him. But it got to the point where she didn’t know what to do.
Then she found out about a hospital that could possibly help Devon. After years of frustration and exhaustion, there was maybe some hope. And with an adjustment in medication, she saw some progress with Devon.
What horrified her was finding out what was actually happening at that hospital.
This is the organization that Sarah mentioned as a resource:
https://collaborateaba.com
The Little Soul and the Sun:
https://www.amazon.com/Little-Soul-Neale-Donald-Walsch/dp/1571740872/ref=sr_1_1
If you’d like to contact Sarah, she’s in the Facebook group:
https://WhatWasThatLike.com/facebook
Full show notes and pictures for this episode are here:
https://WhatWasThatLike.com/246
Graphics for this episode by Bob Bretz. Transcription was done by James Lai.
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Episode transcript (download transcript PDF):
As parents, you want your child to be healthy and happy. And you’ll do anything to make that happen.
But that’s not always easy when your child is autistic.
Science and medicine has learned a lot about autism, but there’s still a lot of mystery around it as well. What causes it (if anything), how to treat it… there are lots of questions that are still unanswered. And a successful treatment protocol for one person might not work as well for another one.
My guest today is Sarah. She and her husband, Brian, have a son named Devon, who has severe autism. Devon would have sudden behavior incidents that often turned violent, and he could hurt himself, or his parents, or his siblings. Of course, as his mother, Sarah wanted desperately to help him. But it got to the point where she didn’t know what to do.
Then she found out about a hospital that could possibly help Devon. After years of frustration and exhaustion, there was maybe some hope. And with an adjustment in medication, she saw some progress with Devon.
What horrified her was finding out what was actually happening at that hospital.
Scott
When did you first find out about Devon’s autism and his other issues?
Sarah
Devon was about 18 months when he was diagnosed officially. He started probably showing symptoms maybe around 12-13 months. He had some words and he had eye contact when he was younger, and we just kind of started seeing– it wasn’t a huge enough regression to where all of a sudden one day he wasn’t the same person anymore. It was very subtle. I didn’t really notice it. My husband kind of noticed it and Devon’s preschool definitely noticed it. They didn’t want to tell me that they thought he was autistic, so they suggested that I bring him to the pediatrician to have him tested. We did bring him to the pediatrician who told us he was just a boy and he was developing normally for a boy, which is slower than girls.
They brought him back to his preschool, feeling pretty good about myself – that I was right and they were wrong – because I thought, as his mom, I should know. They asked again a little bit later– it’s a hard thing to tell a mom who is sure that her son is typical that there’s something wrong with them. There’s a very defensive piece that comes up, and I don’t think it’s really something that anyone can tell a parent. I think it’s a journey that a parent has to come to the conclusion on their own and learn how to go through.
We did take Devon to a psychologist. She knew within just a few minutes of seeing him that he was autistic and gave him the diagnosis. It was pretty devastating for Brian. I think it was almost a shock and I went into this “I can fix it” mode. Autism wasn’t very well known at that point, so my idea of an autistic person was completely different from what Devon was because, when Devon was a baby, he was– and I think if you look at pictures of children with autism, they almost have like this angelic beauty to them. They’re just beautiful and there wasn’t anything really technically wrong with Devon. It was just he wasn’t developing the same. So I thought if we did enough stuff, we could fix him.
Scott
Yeah, of course. As a parent, that’s your goal. That’s what you want.
Sarah
Yeah.
Scott
What were his actual symptoms? I know you said he was nonverbal. Did he have seizures at that time?
Sarah
He did not develop seizures until he hit puberty, so he had no seizure activity. Everything was fine physically with him. The big thing was he was nonverbal. He couldn’t hold onto information as far as showing it. Now, he could understand everything that we said, but he couldn’t communicate with us. There was a lack of eye contact. He had a lot of really bad GI issues, which we did end up kind of fixing with just changing his diet and then he was a flight risk. He would just run all the time. You could never take your eyes off of him because he just had zero concept of danger. I mean, he would run into a swimming pool. Brian had an incident where he did do that. Brian turned around for a second and turned around and Devon had run into a friend’s swimming pool. So, Brian had to jump in and he was shocked that it could even be something that could ever happen to him because you read about it and you’re like, “Well, why weren’t you watching your kid?” And it was a split second.
Scott
It’s always the public reaction, especially in places like Facebook comments, stuff like that. It’s like, “Wow, weren’t you paying attention? What kind of parents are you?”
Sarah
Yeah.
Scott
But man, those people don’t realize how quickly it can happen.
Sarah
Yeah.
Scott
As he got a little older, was he able to attend school? Could he function as a student?
Sarah
When he was in preschool– the preschool he was in closed. So, we were trying to find a new preschool for him and nobody would take him. They wouldn’t take someone who was autistic because they said they weren’t prepared for it. I lived in Arizona at the time and there’s a place called SARRC. So, I went to classes there with a few other parents on how to be a parent for an autistic child.
For example, I remember taking Devon to Whole Foods. We went to Whole Foods to go grocery shopping, and he started screaming at the top of his lungs and kicking. I had him buckled into the shopping cart and I was holding it far away from me so that way he couldn’t kick me. He was reaching in the back and he was throwing things out and people were staring at me – I don’t know if it was in judgment because I was so focused on getting stuff done because, basically, the way they told me to be a parent is, when you go somewhere and you’re bringing your child and they throw a temper tantrum or they’re what they call a temper tantrum, which really isn’t what it is, but you can’t give in to that. So if you are committed to doing a task like going grocery shopping, you have to complete that task. Otherwise, you’re being trained. It really worked.
It’s funny that, that particular day, I checked out and I was holding back the tears because I wanted to cry because it was hard to stay in the grocery store and do that. I went out to the car and two things happened that I remember so clearly. One, a homeless guy came up and asked me for money and I offered him some chips and then he just walked away, which made me even more sad. And then the other was there was a little old lady who walked up to me as I was unloading my groceries and she– bless her. She came up to me and she just said, “I just want you to know that was the best parenting that you could have done. I just want you to know how much I think you’re such an amazing parent.” And I’ve held onto that. Out of everything that I’ve forgotten in my life and everything else, I just remember it meant the world to me. I told her thank you and then I got in the car and I just cried for, like, an hour.
Scott
Isn’t it amazing? People can say something, and it was just a little thing for her to just come over and tell you that, but wow. And now it’s how many years later? 10-15 years later?
Sarah
20-21 years later.
Scott
Okay. And it still sticks with you?
Sarah
Mm-hmm. And it kind of taught me too that if you have something kind to say, say it. I feel like people always feel comfortable criticizing or saying something that they think is wrong or bad, and they think it’s helpful. I mean, even if you just look at somebody and you think, “Oh man, that person over there walking down the street is really pretty”, you walk by them and be like, “You look really nice today.” Just little kind things to say to people and I think people hold onto that.
Scott
They sure do, yeah. Because you don’t know what kind of day that person is having. They could be smiling on the outside but, maybe, there’s a lot of turmoil, stress or whatever, and that could make all the difference.
Sarah
Yeah.
Scott
Just being a nice person. When Devon hit puberty – this was around age 15 – things changed. What happened at that time?
Sarah
Yeah, we thought things were hard with Devon. We went through a lot of IPs. When he was younger, he was a flight risk. He never really maintained holding onto anything that was taught. We went through ABA therapy. We went through every biomedical treatment that was available and none of it worked. We had a lot of people saying, “Oh, if you take this antiviral, your child isn’t going to be autistic anymore.” And obviously, we had to go through that process. We had gone through a lot of it. We never really had aggressive behaviors. We had some temper tantrums, like I said, in the grocery store where he didn’t want to be there.
It was when he hit puberty and this was before his first seizure– we had moved to Nashville and I didn’t know if it was because of the change that he started having very aggressive behavior towards himself, towards us. He would hit himself. I would be driving and I have two younger children too. He would just start banging his head into the window. I’m surprised it never broke. I remember, one time, I had to pull over. I had my two younger kids in the car. I pulled my car into a parking lot because I was afraid he was going to jump out. I pulled over, let him get out, and I really thought the cops were going to be called on me because he started attacking me. He started smashing his head into the minivan, put a big dent in it, throwing himself on the ground, trying to pull me to the ground.
I feel really lucky, going back, just to– I had to quit my job when Devon was diagnosed to keep up with all of the therapies and everything and the lack of care that we had available to us. I started doing martial arts. I started off with a very traditional Shaolin kung fu, learned Taoism as, like, philosophy of life, which really helped and then went into boxing, Muay Thai. So, I had a background in physical activity, so it didn’t hurt me as much. I guess I could say that, physically, when he would hit me, I didn’t take it personally. I knew how to, I guess, take a hit
Scott
And at age 15, he’s bigger and stronger and you have to be able to do something. That incident in the van– how did that play out?
Sarah
Well, that was one of many. I ended up being able to get him back in the car. At that point, we were so new. This was the very beginning and we’ve learned so much, but we never knew when that was going to happen. He could be happy one minute or content or sitting on the couch and then, all of a sudden, he’s hitting himself trying to put his– I mean, we had so many holes in the drywall through the house, just destroying the house because– I like to say whatever was going on inside of his head hurt more than what he was doing to himself. Even to this day, I never believed that he purposely hurt us. It was just the lack of communication. Whatever was going on, he couldn’t tell us about it.
So I got him in the car, I got him home, but it wasn’t the last time. That wasn’t even the first time. That was just one of the times that I can tell you about specifically. There was a time where my husband was driving and he had to pull over and Devon was trying to smash his head into the concrete on the outside and just trying to– it’s hard because you don’t want your child to hurt themselves but, if you intervene, it feeds into that anger and aggression. So there was always this balance of when do I intervene and when do I not because I can’t let my kid hurt themselves like this, but the intervention escalates the behavior.
Scott
And you’ve got two younger children also.
Sarah
And one older one.
Scott
Okay. When the younger ones were around and Devon would have one of these incidents, was he a danger to them as well or how did they handle that?
Sarah
I think, emotionally, I would have to say, “Hey kids, be quiet. Don’t talk. Devon, I can tell he’s getting upset. Don’t talk. Please don’t talk. They don’t understand that.” Or when he would go into behavior, “Kids, I don’t care what you do. Run, go upstairs, shut the door, lock it,” and it was more preventative. They were extremely worried about me. Watching me or my husband get hit or hurt, they didn’t know what to do with that because they were so young.
Scott
They’re just kids, yeah.
Sarah
Yeah. I think Jack was probably about three years old when this started, and Lauren was four. We did everything we could to keep a normal life for them but they never had sleepovers. They could never have friends over. They couldn’t have sleepovers over here. My daughter danced and I would have to drive with Devon in the car. I think there’s an aspect to them that is very protective of Devon, but also embarrassed. I don’t mean that in a bad way but, if you take the embarrassment and then somebody makes fun of your brother or sees something and doesn’t even say anything, and then there’s that protective piece of you wondering what they’re thinking, but then also like, “I don’t want them to treat my brother this way or look at him this way.” So yeah, it did affect them.
Scott
It’s hard for me to imagine the stress that was on you and your husband all this time because it’s like you never get a break.
Sarah
Even when we had a break, we didn’t have a break. Even with Lauren and Jack– I mean, he would turn around in the car if they were talking and try to hit them, and then they’d have to move all the way to the back of the van. My older son, Taylor, was affected by it in the sense that he was extremely excited to have a brother and Devon wanted nothing to do with him. So I think there’s a sibling aspect to that that I think is something that I won’t understand and really only siblings of special needs children really understand. And so Taylor had that aspect. He saw a lot of it too and he would get angry and upset. I think one of the things with my husband and with my older son was feeling his aggression, like, “Don’t do that. You can’t do that. That’s not right.” which, again, fed into his behavior.
Scott
We’ve painted a picture of what your family life is like and it doesn’t sound very nice, but were there happy times too?
Sarah
Oh my gosh. When Devon smiles and laughs, there’s nothing more pure and beautiful than seeing him happy. I mean, the one thing that probably makes me cry is it’s beautiful to watch him smile because it comes from such an innocent place.
Scott
That’s how I think of it too. He’s such an innocent person. He’s not intentionally doing all of this.
Sarah
No.
Scott
But you mentioned that he would often hold his head and bang his head against things. Did you perceive that maybe he was in physical pain himself?
Sarah
Oh, 100%. Going back to when we moved here, he had such severe behaviors at middle school that were District 4 that I got really angry about. This is why my kids don’t go to that middle school, but he would throw those behaviors there. Again, I know it was that pain and frustration of not being able to communicate and squeezing his eyes shut, holding his head. They actually took him out of the room and put him in a room by himself, and they basically just had, like, a security guard sitting there with a tent in the room and said that was his sensory room. I battled with this school. I brought in a consultant to go over the IEP to try and make things accommodating for Devon. They kept him in this room and then they had the audacity to tell me, “Well, the other special needs kids here have grown up together and they’re a very close knit group and they’re scared of him, so they just don’t want him in the room.” And I’m like, “Okay, awesome.” I won’t even go into all the details of that, but we ended up moving Devon. He got to graduate and move into high school early. I mean, that’s just an example of some of the things I’m sure a lot of parents get so frustrated with the school and stuff.
Scott
The thing with schools though– I mean, not all schools have a person on staff who’s trained to deal with this kind of thing. Right? Did you find professionals or did you find teachers that could handle it? Like, some could handle it better than others.
Sarah
Well, when Devon got put into high school, there was the autism teacher that was going to be Devon’s teacher at the high school. We got a letter from Devon’s psychiatrist to pull him out of school early so he wouldn’t get in trouble for not attending school. Then, they moved him up into ninth grade so he wouldn’t have to do eighth grade. This teacher– he was one of the football coaches. He was so incredible. He came to our house with the autism specialist for the district, for the high school, talked to me, met Devon, and told me, “Hey, it’s going to be a new environment. Meet me at the school. We’re going to meet there together so Devon doesn’t go into a brand new environment.” He was so incredible.
I can tell you that Devon’s high school– they get four years of high school and then they get four years of, like, job training. I can’t even begin to tell you how grateful I am for that team of people who worked there. He had the same assistant for the entire time that he was there. There were times where he would call me. He had a little room that he could go to if it was quiet, and then he got to integrate with the other kids. They understood him and they loved him, and they looked at him like I did, like, “We don’t know what’s going on, but let’s figure it out. “
Scott
I think, for a lot of people, it’s easier to just ignore and just kind of detach and, “I don’t want to deal with this. I’m a teacher. I didn’t sign up to deal with this kind of thing.” But man, for someone like that coach to come in– you said it was a coach, right?
Sarah
It was a coach that he had for a little bit, and it changed because they do have a whole different special needs, so he’s not in a regular classroom. The thing is there’s different types of special needs. You have very high functioning autism, you have down syndrome, you have cerebral palsy, and they’re all there together. And the teachers that stick around and do a good job, I can’t even tell you how grateful I am for those people. They’re incredible.
Scott
Age 17. His problems are now pretty much 24/7.
Sarah
Yep. When he was 15, he had the first seizure in which that football coach, who was his teacher, actually got in the ambulance with him and took him to the hospital. Devon’s seizures were– they’re called tonic-clonic seizures. They’re big seizures. My guess is when the behavior started is when he started having seizure activity, which is not the big seizures because it was almost like the behavior would stop when he would have the big seizures. We thought it was one seizure and maybe he would never have one again because, sometimes, they don’t.
I remember, I don’t know, maybe it was a month later– I was in the backyard. And if you’ve never actually seen a seizure – like the one big seizures – I still, to this day, it was trauma. I mean, we were in the backyard – I was actually with the kids and we were on the steps – and I hear just *gasp* And I was like, “What?” I looked over and Devon just collapsed. He quit breathing. They don’t breathe during this. He collapsed full force onto the concrete. I have never seen anything like it. I had never experienced anything like it. He wasn’t breathing and it lasted about two and a half minutes. The sad thing is I got used to seeing it because it started happening so frequently but, every single time, it was just like, “Is he going to be able to breathe? Is he going to wake up from this? Is he going to come out of it? How am I going to get him out of it?”
“Brian, get the timer. We have to time it” because we ended up having emergency meds. So it became a chronic thing for him. Yeah.
Scott
Were there any signs that you could kind of pick up on that, “Oh, he’s about to have a seizure?”
Sarah
No, not at first. Later, yes. After we kind of got under them and we started kind of getting them a little bit controlled, we would see a rise– like, his eyes would change and we would see a rise in the aggressive behavior and then he would have the seizure and it’s almost like it released whatever buildup was there. That’s the closest thing that I can come to explaining it. Then, he would be happy after.
Scott
Did you have to take him to the ER or were there any ER visits during this time?
Sarah
We didn’t have any ER visits then. We got a neurologist. The funny thing too is I went through the same process of when he had autism. I’m like, “I want an answer. Why is this happening? I want a medical answer. I want to know how we’re going to deal with this. Is there a way to fix it? I want a cause and then I want a solution.” And he had an amazing neurologist at Vanderbilt Children’s and he said, “A lot of times, you don’t know, you’re not ever going to have an answer. We still don’t have an answer. A lot of kids with autism, this is something that begins–” Looking back when he was a kid, we were on all the time because we were worried for his safety. Then, after the behaviors and the seizures started, it was different. We were worried about him in a different way and it’s kind of that realization of it’s never going to get better. I don’t mean that, like, in a negative way because, again, we still have those beautiful moments when he’s laughing. I did a video of him singing Happy Birthday and he does a little dance but it was then that we knew how hard it was going to be.
Scott
You brought him to Vanderbilt Children’s Hospital and what prompted you to take him there and how long was he there?
Sarah
We had started an antipsychotic on him from his psychiatrist that they said to use. We did use it. It would calm his behavior temporarily. But what I think started happening is, even though it’ll calm him for a moment, it actually started increasing whatever was happening in his head. We didn’t know it at the time, but it sent him into 24/7– every moment that he was awake, he was either hurting himself, he was hurting us, he was trying to destroy the house, and we couldn’t do it. I mean, we didn’t know what to do to help him. We didn’t know how to stop it. It’s the most helpless feeling that any parent can feel – watching your child deteriorate to such a level and having no idea how to fix it.
So we went to the hospital and they admitted us. They did a slight change in the medication. They sent us home. We ended back the next day – I knew that we would – and drove to the hospital with him like that, one of us trying to control him, one of us driving, trying to figure out if someone can come watch the kids because, obviously, we’re not going to bring the kids in that environment. We ended up being at Vanderbilt Children’s for a month.
Scott
Was any progress made at all? Did they have any ideas about how to treat him?
Sarah
Every medical person who works in this field, even if they want to help, I think there’s such a mystery to this and every kid is so different. It was just a place to hold him until we could figure out what to do. So he would be in that room and he would just destroy it. They would come in and give him medicine. There’s one time where they called the cops to come up to the room because Devon was getting so aggressive and they handcuffed him to the bed and I think there were, like, five of them. Devon doesn’t have a lot of words but he has some, like, “I want toilet” or “Go away, mom.” So he was handcuffed to the bed and he was just saying, “I want help.” And they wouldn’t unhandcuff him.
I just kind of laid across his chest and rubbed his head and told him it was going to be okay. I kept asking them to please take the handcuffs off, I could handle it, and they did after a while. He had some abrasions and they did unhandcuff him. They medicated him first and then, when the nurses said that they could take the handcuffs off, they did after he was medicated. So, yeah. For him saying “I want help”, it was just, “Okay, but I don’t know how to help. I don’t know how.” And he can’t even tell us that.
Scott
That’s got to be the most frustrating thing. He understands what you’re saying, but he can’t respond verbally. Just that one phrase, “I want help.” There’s a lot of weight behind that. So it came down to the option of another hospital in Virginia. What hospital was that? How did you arrive at that conclusion?
Sarah
They looked at several places and this is the thing – there’s not very many options. So there was a place here in Tennessee – it was outside, I think, of Chattanooga – and we looked into it and we saw these reports of things that had been done to patients that had gone there and we’re, like, “We’re absolutely, you’re not going to send him there.” The next option was a place called Cumberland, and it was out in New Kent, Virginia.
Scott
And you’re in Tennessee?
Sarah
Yeah.
Scott
So why Virginia? Just because this was the place that you thought could maybe make some progress with him?
Sarah
It was our best option. And when I say bringing him home wasn’t an option, it was not an option to bring him home. We knew that there was nothing else that we could do. We did not want to bring him there, especially that far away, but we didn’t really read anything terrible and we looked at the stars and I think it was, like, 2.3, but looking them up and doing our research, we didn’t find anything that was a huge red flag about bringing him there. We knew that we needed help and we knew that we needed medication management with his seizures, with his behavior. He was on so many different medications and we didn’t know what was making it better and what was making it worse. We needed somebody who could help us with that and then also have him in a safe environment where they could help him.
Scott
He was actually living away from you then during this time because he’s in Virginia, you’re in Tennessee. I’m wondering how you got him there? Did you drive him there or was he able to fly?
Sarah
No. The ambulance said that they would take him, but they would have to strap him to his bed and they wouldn’t be able to stop for a bathroom break, so they would have to put him in an adult diaper. I think it’s a long drive – I think 15 hours, something like that – so we said, “No, we would figure it out.” We ended up driving him and he was actually pretty good on the drive and maybe it was just because he was happy to be out of the hospital. He wasn’t having as many issues. We arrived at the hospital, we drove in, we just drove straight there, got there early in the morning time to where we would get there when they opened, and that’s when we first met the team there.
Scott
What was your first impression?
Sarah
Honestly, my first impression, it was very clean in the lobby. The guy who I think was the program manager was actually very helpful to us. Everyone seemed very happy, very positive, very encouraging that they could fix his problem, and Devon was happy. He was actually laughing. We didn’t really know what– that was kind of these things where he goes into laughter and then he goes into behavior and then he goes into laughter.
They worked with us with one of his medications. He’s on a seizure medication called Epidiolex. At the time, it was newer. It’s a very strong version of basically CBD, but it’s medical grade and they said they couldn’t give it to him, but then they worked with us. So I felt like we were in a really good place that was going to have a good outcome.
Scott
You weren’t just taking him there for them to be a babysitter. It was actual therapy and treatment, and it sounds like it kind of gave you a little bit of hope.
Sarah
It gave us a lot of hope. I’ve never let Devon be away from me for ever, and I would never leave him with someone because he can’t talk and he can’t communicate. So, to do that was one of the hardest things I’ve ever done. We drove home. Then, between Brian and I, one of us flew out every Friday and would come back every Sunday. So, we were out there every single weekend to visit him. The first time I went out there, he just seemed a little bit withdrawn. I wasn’t seeing behaviors. In fact, the entire time I was there, I didn’t see behaviors except for one time and it got pretty bad that one time, but he had already started losing weight.
I would meet with the entire team and I would also meet with the doctor and I would go to the unit. I think that was something that they weren’t used to as a parent coming in every weekend and going actually onto the unit and being there. So, I got to see the unit and they let me in and it was very eye-opening and it was very hard to see all of the other patients that were in this room. The room is set up almost like a half circle. On each wall, there’s a bedroom, and in the middle is kind of an area where they can all go out to be. There’s two locked doors, and then there’s another door that goes to the outside, and then they have locked bathrooms. So the kids can’t go to the bathroom.
When I went into this unit, they told me that there’s one person for every two patients in this unit. When I went there, there were probably 12 to 15 kids and there were two people. There’s no way that could work. There’s no way that anybody’s safe in that situation. They did have one person with a severe eating disorder that I don’t know if they moved her there as a punishment or why she was even on his unit because it was not the eating disorder unit. They had her in a room, in a gown with a mattress on the floor, and then they had somebody sitting with her at the door all the time. I went to the front and I reported it and I told them, “Hey, you guys aren’t properly staffed.”
“Oh, okay, we’ll take care of it.”
The next time I went out, I noticed that it started taking longer for them to let me go back to the unit because I would walk back there, I would get Devon, we would walk from the unit back to the front. I would usually go to the store and get him all of his favorite snacks and his food and we would sit in the lobby and he would have the food that he wanted because I noticed he started losing a significant amount of weight while he was there, and I didn’t know if he was depressed. I didn’t know it was happening. He started getting very withdrawn. I noticed bruises on his head and abrasions on his head, which they said was from him hitting his head. We were probably into maybe the second month when I started noticing there were some bruises on his arms. I reported all of this to them and there was always a reason and that wasn’t totally uncommon because his head kind of looked like that here, but not permanently. It would heal a little bit and then he would do it again.
Scott
So their explanations were sort of reasonable based on what you had observed about his behavior in the past, but it sounds like you weren’t happy with conditions there at all.
Sarah
I work at a boxing gym and there was a guy who came in – he’s a preacher or a pastor. He went to New Mexico State University. He grew up in Las Cruces. It’s funny. He actually baptized Devon because nobody would baptize Devon because Devon couldn’t give his verbal consent, but he did. He also ended up marrying my oldest son. I mean, he became a very good friend. I remember meeting with him during this because I’m not a very religious person, but I feel like I have a lot of faith in just life in general and what we’re here for. There’s a book called “The Little Soul in the Sun” that can– I was going to tell you that can explain a lot on how I handle stuff. It’s a great book. I don’t think it’s religious. I think it’s just a great way to look at life.
So I met with him and I just said, “How can these things happen?” Obviously, there’s horrible things that happen all over the world, but watching the conditions of these kids who have been given up by their families or the state put them in here and I never saw one parent or one family on these units with these patients, these kids that were there. And just seeing the condition that they were in, I just had so many questions and lack of faith in anything that could happen to these kids. Like, why are their brains– like, what happened to them that now they’re abandoned? They were too hard to take care of and now there’s nobody taking care of them. It was really eye opening.
Scott
What does happen– like, in your case, you were committed to Devon. You guys were there for him to do whatever he needed. For some parents, I would imagine some come to the decision that we just can’t do this anymore. Do they just surrender their child to state custody then or what happens?
Sarah
I’m extremely lucky. Brian and I almost got a divorce because I actually asked for a divorce because I didn’t think I could do it. I said the only way I’m ever going to get a break is if Brian and I split up and he has Devon sometimes, and I have Devon sometimes. This is before our two younger kids were born. Thank God that he just waited until I went through what I had to go through and we got to the point of mediation. But he’s in healthcare administration, so he knows how to do all of the admin administrative stuff. I know how to do all of the medical stuff. I know how to do all the school stuff, all the food stuff.
You have so many parents and I can’t tell you, this is a very quiet population that is forgotten. I think you see things that are big in the news and this happens, but you have these parents, 80% at least, are doing it by themselves, and they end up getting trapped in this cycle of not abuse, but they have to quit their jobs. They have to have the means to be able to stay home with their kid all of the time. Financially, emotionally– I’ve seen one parent and they’re like, “Oh my gosh, that mom’s so crazy.” I’m like, “Well, wouldn’t you be crazy too if this is what you’re doing 24/7? You never know when your kid is going to be okay and when they’re not, and you’ve had to leave every friend behind. You don’t have a family that’s helping you. You’re by yourself. The only thing you can do is try to keep your kid from hurting himself and hurting you all the time.” I don’t think a lot of people have the resources for that.
Unfortunately, our system is so broken that, to even get services to help, they have to give them up to the state because they apply for them and there’s a wait list and then there’s this burden and there’s all these hoops to jump through. I never in my life thought that I would ever understand someone giving up their child to the state. Maybe people will judge me for saying this, but I understand if you know that there’s nothing that you can do to help and it’s going to be worse for your kid and there might be a tiny sliver of hope over here if the state can help them, and they have to take that chance. Then, the state puts them in these institutions like Cumberland where there’s nobody looking after them. Now you don’t have a conservator, you don’t have a parent.
You might have a social worker, but how many kids is that social worker looking out for? And how often are they visiting them and making sure that they’re okay other than whatever paperwork has to be filled out? I did see a social worker come pick up one of the little girls that was on the unit with Devon and just watching the whole thing happen was just so sad because it was just a social worker saying, “Get your stuff. All right, come on.” And I’m thinking, “Where’s this little girl going? And who’s watching out for her and the social workers doing their job?” But there was no emotional investment in what she was doing – no kindness, but not any meanness either. It was just going through the motions of moving this kid from this place to another place.
Scott
It’s just a job, yeah. And it’s sad to think that kids like that– the only interaction they have with adults are people who are paid to take care of them. It’s not like a parent who has that basis or that foundation of love.
Sarah
Yeah.
Scott
Devon was there for three months and you had a conversation with that program manager. What did he tell you?
Sarah
He said he was quitting and he was going to be leaving very soon, and I asked him, “What should I do with Devon?” Because there was never any discussion on Deon getting released or any discharge plans. I asked him, “What should I do with Devon?” He said, “I would take him out.” And I said, “Oh, okay.” He said, “Yeah, you probably need to get him out of here.” So, that week, we got him discharged and brought him home.
Scott
Did you get the impression that he was trying to tell you something without really telling you everything?
Sarah
There were two times that I came across that. Once was when one of the workers on the unit followed me outside and he started talking, but I could tell he had a bit of a stutter. I think he was worried there were cameras. I don’t even remember the interaction of what he said, but I remember thinking that was odd. I think he knows that I’m onto something here as far as the understaffing and Devon losing so much weight and the bruises. I know people are probably going to say, “Well, why didn’t you take him out when you first saw this?” The thing was we were invested this one time. I was not going to be able to do this again. I wanted to bring Devon home and I wanted it to be better. There was no proof of anything happening and you want to believe the best. I mean, this is a hospital. These are doctors and nurses, and they have to be in this for the right reason. Right? Like, why would they go work with these people if they didn’t want to? So there was that incident.
Then when he said that, it was definitely– I mean, why would a program manager say, “I would take him out. I would get him out of here”? So after we got home, Devon has never cried in his life. I mean, he could cry in frustration while he’s hitting himself and screaming, but it’s not sad. There were two times and he was sitting there and– I mean, he was really crying. It was like he started *whimpering* and the tears were coming down, and I have never seen anything like that from him. He doesn’t show emotions like that at all. Watching him do that the two times– I couldn’t even ask him what happened. Like, what happened to you there? What happened?
There’s actually two incidents that stand out a lot also. I went into his room and, in his cubicle, there was wet clothes. His clothes were always disappearing. I would try to go through their laundry, fold his clothes, put it back, clean his room up, and they had the bathrooms locked. Devon is very particular about using the bathroom. I took the wet clothes out and I said, “Hey, why do the damp clothes in his room smell like urine?” They’re like, “Oh, well, he started going to the bathroom on his floor and he wiped it up with his clothes.” I was shocked that they knew he was doing this with his clothes and putting it back in there and they weren’t cleaning it up. That was one issue.
The other time, I remember they put a kid in Devon’s room and he was sitting– so Devon was sharing a room with this kid who was completely nonverbal, had only underwear on, no blanket, sitting on a mattress with a sheet and just rocking back and forth. And I asked them, “Hey, is anyone taking care of this kid? Does he have sheets, a blanket?” They’re like, “Oh, no, we’ll get that for him later.” I had brought Devon lots of blankets, so I took one of the blankets and I put it over the kid. I don’t even know what happened to that kid, why he was sitting on that mattress with nothing. I know that they were understaffed but–
Scott
After you got him back home, you found out some things about the hospital.
Sarah
I found out that, when Devon went there, they were under criminal investigation for sexual abuse towards girls. There were also instances of malnutrition, which Devon– I mean he had lost a ton of weight. I found out that Vanderbilt had sent another person just like Devon there. They had discovered one of the staff members there had been going into the break room, boiling water and coming and pouring it onto that kid. The parents took him out. I think it took them, like, three or four days to even tell her that it was a staff member, and then they put the staff member on leave. I found all of that out after he had already been there and I had no idea that they were under criminal investigation.
I ended up reaching out to the investigative journalist and she told me all of this and she said, “If there’s anything that you have, you need to report it.” And she said she was extremely grateful to her news station for even letting her cover the story because, a lot of times stories like that, the news stations won’t let them. They won’t approve them to cover a story of that nature because I’m not even sure why, but she just was extremely grateful that her news station let her cover that.
Scott
And were there any particular people under investigation there? Like you said, the investigation was for sexual abuse. Did they know who was doing this?
Sarah
So that was the main doctor and he was the one who honestly got Devon’s medications under control, but we had no idea the extent of all of it. He actually was convicted. Sexual abuse allegations– numerous former patients had alleged that they were sexually abused. Widespread neglect– uncovered a hundred plus allegations of abuse and neglect. Reports of physical harm, including a child suffering a seizure after a staff member restricted their airway, staffing and safety issues, unnecessary confinement. They received a $360 million verdict last year in 2024 in September, which is kind of unheard of for something like that. They had another behavioral technician who was accused of burning a nonverbal patient with hot water, and then one of the psychotherapists died by suicide before his plea hearing for sex crimes against a patient. So these were all the things that were actually uncovered, that there was proof of in a period of time, and I can’t even imagine how many happened.
Scott
How many things actually happened that didn’t come out and now you’re thinking, “We sent our child to this place.” Of course you didn’t know anything about that stuff.
Sarah
We sent our child there and we were also parents who came every weekend to see him. So there were lots of other patients who were there who’d never had anybody come check on them. So I think they were probably the most vulnerable. I don’t know what happened with Devon. Again, he’s never cried, so I know some bad stuff happened and the fact that he’ll never be able to tell us. You hear about how everybody needs therapy, and I think therapy is great. I’ve had to go to therapy. I can go talk and say, “Hey, this is how I’m feeling. This is what happened.” And for Devon to have to keep all of that trauma inside of him, I can’t imagine what that would be like. At the same time, I would do anything and everything for him for the rest of his life to do whatever I can to even provide him a moment of happiness.
Scott
How did you learn to handle him when he came back home? Did anything change?
Sarah
Things were better. We got him off the antipsychotic, which I think was what helped temporarily but actually made things worse for him. Every kid is different. You ask any parent and they’re going to say all these things are different. He did have behaviors. He did have seizures still. We had about a year of what’s called the ECF Waiver Program here in Tennessee, and it’s basically Medicaid for disability, and he was eligible for that.
So when he turned 18, we put him on that program. We had people come from different agencies and, basically, what they do is they staff homes and they put– it’s like a residential living program. We had different agencies come in. We had an amazing worker through his blue care, which is his Medicaid, and we would have these agencies– I remember one agency came in and they said, “Oh, well, yeah, it’s hard to staff. There’s turnover. Sometimes we’ll just go to neighbors in the neighborhood and see if they want to become an employee since they’re already in the neighborhood.” And I thought, “Okay, we’re not using you.” It was very surprising to hear that. Then we had other agencies where it was just too far away and, with Devon’s behaviors, I don’t trust anyone. My biggest fear is of him getting hurt or abused physically, emotionally, mentally, again, because he can never tell us, especially after our experience at Cumberland.
They had a place in Clarksville, Antioch. It took us a year and we finally realized the only way that we’re going to do this is we’re going to have to figure out how to get a house. We found one of the agencies that– the agency that had him the entire time, they’re incredible. We’ve had a high turnover rate, but we bought a house and we rent it back through his disability and he lives in that house and it’s staffed and that was really the only way that we were going to be able to get him situated. So it takes me about 30 minutes to get to his house.
Scott
So he lives there and he has staff around the clock that are taking care of him.
Sarah
In the beginning, we thought there would be maybe a little bit of a sense of relief, but Brian and I both went through probably just the worst crash you could ever imagine. Having him away and wondering– he can’t call us on the phone, we don’t have those options. It was extremely hard trusting anybody with him. The company bio said they were really good about letting us know, we can approve or disapprove anybody, we can bring him home whenever we want. He was still having seizures and behavior. In the beginning, we were there a couple times a week because we have a PRN medication that we can use for Devon that we would have to administer, which has really kind of saved our lives. And out of everything, we now know that if he goes into behavior, we give him a PRN medication – it’s just Xanax – and that will calm him down enough for him to get ahold of himself.
Long story is we got him settled in this house and I think this is something that a lot of people don’t understand because he’s had two different roommates and when we put Devon into this living situation – and a lot of parents or people do this, or even the state – we work with his staff as a team. So we have had– I think one of his roommates’ parents were saying that the staff isn’t trained. They need to be trained. They shouldn’t be calling us to come over. You can’t just give your kid over into these living situations and step back and have the expectation that everybody else is going to take care of them. You can’t do that. There’s some things that parents can do. And these staff members, their turnover is so high. They get paid, I think, like, $15 an hour to take care of very vulnerable people. They have a very high risk of just liability in general.
So, when we got the setup, we worked with them as a team. I take Devon to all of his medical appointments. I do all of his grocery shopping. I prep his food for him every week and we bring him home at least once a week, so he knows that he’s still part of our lives and we’re not abandoning him.
Scott
And how old is Devon today?
Sarah
He’s 24.
Scott
Have you met other parents who were or are in a similar situation as yours?
Sarah
There’s a lady that calls me because I really feel like I want to help and I don’t even know how to help because, again, you’re trapped in the situation. She’ll call me probably once or twice a year and just ask me how everything’s going, and she’s been doing this for about three years and I think her son is in his thirties and I think she is by herself dealing with this. I think she has an older son that wants to help, but she can’t take that first step forward. I think it’s so scary too to move forward and trust that anyone else can ever do what you do because nobody else would choose to do what you do. So I talk to her a couple times a year. She still has them at home.
There’s another lady I know whose son is at home. I don’t think he’s as aggressive, but has some other issues with– and I think she just doesn’t– she has a husband. I think they do a good job, but the toll it takes on you is you really don’t realize that your body and your mind is on all the time. It still is. Even though Devon has his house, I’m always thinking of him. He’s always just sitting right there with me. And whenever I feel super stressed, I’m wondering, “Is something happening to him? Is he stressed?” And that’s his, like, psychic call to me to come get him. Or that he misses me since he can’t make a phone call because I’ve always said– we joke around about how Devon has, like, this psychic ability. So I always wonder, like, “Is he sending me just emotional signals? Or if that’s just your mom-parent piece that is always active and ready for your kid.”
Scott
Sure. That doesn’t stop. To me, I just keep thinking the mental and physical exhaustion that just has to be overwhelming because you can’t call a babysitter. Like, when he was younger, his needs were so specialized. Did you ever think, “Wow, this is our life for years into the future. This is what it’s going to be like.”?
Sarah
It’s overwhelming to think about it that way. I still feel like I have been developed by my circumstances with Devon. It’s really hard for me to commit to anything time-wise. I never know what’s going to happen. So if I make plans to do something, I don’t know if it’s actually going to happen. So everything that I do, it’s moment by moment. This was actually from a passage from a book that I read by my favorite author, and it was actually part of the book and part of the story. One of the characters said it, but it resonated and this is that piece, and I actually put it in my notes and it says, “Some may call it a simple platitude, but it is far more. A journey will have pain and failure. It is not only the steps forward that we must accept. It is the stumbles, the trials, the knowledge that we will fail, that will hurt those around us. But if we stop, if we accept the person we are when we fall, the journey ends. That failure becomes our destination. To love the journey is to accept no such end. The most important step a person can take is always the next one.” There’s that. And then the poem “If” by Rudyard Kipling – I don’t know if you’re familiar with that, but it’s called “If” and it’s a great one. One of the things said,
If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breathe a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on although there’s nothing left within you
Except that voice that says, “Hold on!”
So that’s like one piece of it. Actually, my mom wrote that for me when I was 17 and left it in the bathroom or something, like, taped to the mirror, and it’s just kind of been something I’ve lived by.
Scott
You told me that you feel like you’re a better person because of Devon.
Sarah
Yes. Again, going back to The Little Soul in the Sun, that made a huge difference for me and it made me feel better about Devon’s life and his soul– not his soul life, but his situation. The whole point in that book was just a little soul saying, “I want to experience forgiveness.” And then another soul had to come in and say, “Well, to experience forgiveness, you have to have somebody that you can forgive.” So the whole story was talking about, “Okay, we’re going to do this and we’re doing this as a team, but you must remember who I am.” So I tried to apply everything that Devon has sacrificed as something for us to learn from. I really have to keep it in that perspective because every single one of us is a better person because of Devon. I don’t think I would have the compassion, the empathy, the patience, just my outlook in life and just enjoying moments to moments without Devon. His sacrifice has made us better. And it’s hard.
I don’t think you get something so wonderful– what we’ve been able to become without having that pain that we’ve also gone through every moment– like, even right now, I can feel him and I’m like, “Does he miss me? Do I need to go get him today? And how am I going to figure out my schedule this week to make sure he comes home?” So, yeah, he made us better and he made Brian and I– getting through everything that we went through, I don’t think I could ever ask for a better marriage or partner in life just because of what we’ve had to go through together. Nobody will ever understand the way that we do. And so if people can get through that together, it’s–
Scott
You’re bonded for sure.
Sarah
Because I look at how much he’s sacrificed and we definitely go– there’s been times where I don’t have anything left to give and I don’t even have to ask, and he knows to step in to give the 80% when I have 20% and then the reverse. I can tell when he has nothing left to give and that’s when I have to step in and give that part of myself too, and it’s kept a good balance for us.
Scott
I asked you about resources and you had mentioned collaborateABA.com. What is that?
Sarah
This is based out of Austin. Every state is going to have different resources and ABA looks a lot different when they’re young than when they’re older kids. I think one of the really hard things is finding any sort of resource when they’re older because, again, they change from moment to moment. The behavior changes moment to moment. But a friend of my husband’s had referred– like, one of his old fraternity brothers, I guess, had started this company based out of Austin, and it’s called Collaborate ABA and Ben actually flew out here. He is an amazing guy. He loves what he does. To love the behaviors and all the crazy ups and downs that come with these kids, it is either you’re made for it or you’re not.
So Ben has come out and it’s hard because we’ve had such a turnover in Devon’s house. We’re really lucky that we have an amazing team in his house right now, but to train the staff, “Hey, this is how we do it. I know you’re scared to go out in public because you don’t know what’s going to happen and this is how we’re going to figure it out.” Just writing communication methods. He just knows how to work with adults and he will come to you and I think they do take some insurances and so– I mean, that’s the only resource that we have found for adults. They have a couple, I think, out here but everything has a wait list and that’s something that I think people who are in our situation really need to be aware of and start thinking about as early as even, like, 12 years old. Even with the ECF program that Devon’s in right now, there’s a huge years-long wait list to even get those resources.
Scott
So get on wait lists early.
Sarah
Yes.
Scott
I think Devon is very fortunate to have you and Brian as his parents, especially compared to those kids that you mentioned. Some of them don’t have anyone. It’s not an easy thing, but you’re just taking it day by day.
Sarah
I think one thing I wanted to also mention that has helped incredibly for Devon that I think people have a very probably misinterpreted view on is the ECT treatments that Devon has gone. That was the final, I think, piece that has helped Devon.
Scott
What does that stand for?
Sarah
It’s electric shock therapy. They do it through Vanderbilt. We had to do it differently for Devon because– basically, they tell you, “You have to get 12 treatments under your belt before it actually starts working.” And you go in, they put an IV in, they give you muscle relaxers, they put you under very light general anesthesia so you’re not awake during it and they trigger a seizure. It’s supposed to help severe depression, catatonia, things like that. It’s helped tremendously with Devon. I think, for him, it just kind of releases that pressure buildup that we were talking about how he holds his head or he starts banging his head. It just resets him, if that makes sense. And I think a lot of people have very bad ideas of what that is or they don’t want to put their kid through that because maybe they’re grasping at something that doesn’t work. But for us, it’s been amazing.
Scott
Good, yeah. So that’s something else that people can look into. I can understand how that would be controversial for people that know everything about it.
Sarah
Yeah. That might be another resource for parents to look into, get comfortable, and then talk to your doctor.
Scott
Thanks for sharing your story.
Sarah
Thank you so much, Scott. I appreciate it.
Scott
There was something else that Sarah told me, that was a positive aspect to her story. When Devon was around 18, for roughly four years every winter he would have these cycles where he would throw up, which would cause a seizure, which made him throw up, then he’d have another seizure, and so on.
So during this time, every January or February, Devon would be in the hospital for 3 or 4 days. So they got to know the ICU nurses. And one of those nurses became a mentor to Taylor, Sarah’s oldest child. And Taylor is now a pediatric nurse in that same place, on the same floor, where Devon was cared for so many times.
The book that Sarah mentioned is The Little Soul and the Sun. There’s a link to it in the episode notes at WhatWasThatLike.com/246. One of the themes in the book is forgiveness, but Sarah wanted to be clear that there’s nothing about Devon that needs forgiveness. It’s just a book that helped her look at hardships as a way for us to learn valuable lessons.
And if you want to ask Sarah a question or comment on her story, come over to the Facebook group and the post about this episode. Sarah is in that group and she wants to help if she can. WhatWasThatLike.com/facebook
And I wanted to let you know about a podcast you might be interested in. Amelia is a long time listener of What Was That Like. In fact, she sent in a Listener Story that you might remember – it was about gorilla trekking in Rwanda, in episode 142 titled Traci’s Husband was Arrested. Well, telling that short story planted a little seed – and she has now started her own podcast which is titled The Other Side Of the Call. Amelia is a former 911 dispatcher, and her show covers all aspects of first responder mental health.
Amelia
Hey “What Was That Like” listeners! You already know one moment can change a life, but what if that moment was your job where you loved someone who carried it home every day? I’m Amelia Thornton, a former 911 dispatcher and co-host of a new Canada based podcast about the realities first responders carry and how those in need can reach out for confidential support. Join us as we speak with first responders, clinicians, researchers, and peer support change makers about what helps and what doesn’t. “The Other Side of the call” – now available wherever you get your podcasts,
Scott
Graphics for this episode were created by Bob Bretz. Full episode transcription was created by James Lai.
And once again, we’re about to hear this week’s Listener Story. If you have a story that you can tell in 5-10 minutes, record it on your phone and email it to Scott@WhatWasThatLike.com. Everyone wants to hear your story, so don’t make us keep waiting!
Some listener stories are funny or informational. This one just made me mad, about how some people can just say something without even realizing how it comes across. I’d like to hear what your reaction is after you hear it.
Stay safe, and I’ll see you next week.
(Listener Story)
It was 1988, the day before my wedding. My two sisters were at the mall getting their nails done for the wedding with my nephew in a stroller. My nephew has Down Syndrome, and the woman who was doing their nails noticed and kept looking over at the baby in the stroller, which is my nephew. When my one sister, Susie, was done with her nails, she left and took the baby in the stroller. The woman turned to my other sister, Terry, and said, “Don’t you people believe in abortion?” Terry was so taken back by that. I mean, how do you respond to that? She didn’t know what to say. All she could think of was how she felt and she just said, “We love him.”
Well, when they came home that evening and told me what happened, of course, I became enraged. I just could not believe that. I wanted to go down there and– I wanted to run to the mall, which is probably a good 20 minutes away or so. I just wanted to get this woman fired. I wanted to speak to the manager, the owner, anybody, and just say, like, “Do you have any idea how precious this little boy is to our family? How do you not know how hurtful that comment is?” If that’s your opinion and what you would do and that’s your prerogative, keep your mouth shut. Who do you think you are saying something like that to somebody about a precious baby? It was just unbelievable.
My father talked me out of it because, again, it was the day before my wedding – had lots to do. He didn’t want to see me getting upset and he talked me out of it. So I am so sorry to this day that I did not go down there and get her fired or at least just to let them know that it is unacceptable to say something like that. And just so you know, my nephew Johnny, he’s now 37 years old. Anybody who has had a down syndrome person in their family can attest to this. He has been a blessing to this family. He has been nothing but a blessing. Everybody adores him – all of his aunts, uncles, cousins, even strangers. Everybody just adores him.