#086: Autism Living Facilities and Out of Home Placement | Interview with Lisa C

autism stories

I’m happy to introduce you to an old friend of mine, Lisa C. We met years ago when my son Lucas went to the same school as Lisa’s oldest son Ethan. Two of Lisa’s three children are on the autism spectrum, but Ethan’s diagnosis is more severe. Lisa’s fall into the autism world happened when Ethan was around 13 months old, and through her job as an elementary school counselor, she was able to recognize some autism behaviors that Ethan had.  Now as an adult, Ethan is living out of the home in a specialized autism placement and Lisa discusses her experiences with autism living facilities and the process she went through for Ethan.

Even as a young child, Ethan exhibited a certain degree of aggression, including biting, hitting, and self-injurious behavior. But as Ethan grew older and bigger, the aggressive behavior went from an occasional event to nearly hourly. Finally, the therapists suggested that a safer environment might help them try different plans or medication to improve Ethan’s quality of life.

Lisa’s calm and thoughtful approach to this issue is one of the reasons I wanted to talk with her today. This decision can be difficult not only because of the legal hoops to jump through but also because of the emotions involved. Lisa wants parents to prepare for how long it takes to find an out of home placement. She’s been waiting since May of 2019 for an admission date for her son, and finally received one in July of 2020.

One of the things that Lisa wants parents to realize is that the kids that have the most behavioral and medical needs will have to wait the longest for space in autism living facilities to open up for them. You can’t give up hope that a bed will open up for them. She encourages you to reach out to other parents in the same circumstances via groups on Facebook and connect with them. This will help you focus on every parent’s goal of making sure their child is safe, happy, and as independent as possible.

TODAY’S GUEST

Lisa is a former elementary school counselor with a M.Ed in Education. She is now a full-time parent of 3 children, two of whom have autism. She has worked as a freelance writer for Central Penn Parent magazine and maintains a blog about the challenges of raising children with autism. Her blog can be found here at crogs5.blogspot.com

YOU’LL LEARN

  • The chances of siblings being diagnosed with autism.
  • Some of the reasons to consider an autism living facility.
  • How an inpatient facility is different from an out of home placement.
  • About Facebook groups that can help you connect with other autism parents.
Want to get started on the right path and start making a difference for your child or client with autism?
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Transcript for Podcast Episode: 086
Autism Living Facilities and Out of Home Placement | Interview with Lisa C
Hosted by: Dr. Mary Barbera

Mary: You're listening to The Turn Autism Around podcast. I'm your host, Dr. Mary Barbera, and I am thrilled to interview Lisa, who is the mom to three children, two of whom have autism. Lisa is a former elementary school counselor and has a master's degree in education. We are going to talk about both of her children with autism, but especially talk about her oldest son's journey with autism and meeting placement outside of the home as he's gotten older and had more severe problem behaviors.

Mary: So we are going to get to all of that in a second. Before we do, I also want to tell you that Lisa is a freelance writer and has a blog called Lightning Strikes, which has detailed some of her journey as well. So Lisa is a friend of mine and a former client's mom for many years. So she really has a very nice way of presenting not only the challenges, but also some of the suggestions that might help even if you don't have a child with severe autism. So let's get to this important interview with Lisa.

Mary: Thanks so much for joining us today, Lisa.

Lisa: Hi. Thank you so much for asking me.

Mary: Yeah, it's been a long time since we actually connected. Many years, actually. So first question. Describe your fall into the autism world. And I know you had a couple falls in there.

Lisa: My first fall into the autism world was that of my first-born son. I was working as an elementary guidance counselor at the time. Ethan was very young and I guess a little bit lucky for me. I had access to like speech therapists and occupational therapists that I was working with and could kind of ask them because he was my first born. You know, this doesn't seem exactly right to me. What would you suggest I do? So luckily for me, I was able to get Ethan into early intervention. By the time he was somewhere between like 13 and 14 months, which is fairly early. And he actually was diagnosed at 22 months of age, which I think back then might have been pretty early as well.

Mary: What year was that?

Lisa: Back in 2002. So, yeah, we started with early intervention, speech therapy, and it was suggested that he get screened by the developmental pediatrician. So he was diagnosed also, luckily for us in the area that we still live in. There was a brand-new private school that was just within a maybe like a year or so of being open, you know, exclusively for kids on the autism spectrum. So luckily, we were able to get Ethan into that school, which helped tremendously.

Mary: But that school wasn't for when he was younger than kindergarten?

Lisa: He actually started at that school when he was three.

Mary: So they had a preschool program.

Lisa: Yeah. And I'm not even sure if they called it a preschool program back then. I think now they have more of an actual program. But he was in the school age program, which is all ABA based. So he was able to get 30 some hours of ABA therapy per week through school. And they also had like a home component where I think it was five hours per week back then where one of the individuals that worked in his classroom would come to the home, which was great, too.

Mary: We met briefly because Lucas and Ethan actually were at the same school. It's only a couple minutes from your house, but it was more than an hour away from my house. Now, when he was halfway through kindergarten, Lucas, for all of first grade, he was bus to the private ABA school. And that's where I met Lisa very casually, because Ethan is now 19 and Lucas is twenty-four, he just turned 24. So quite a few years younger. But we did meet briefly. OK. So then fast forward and your next fall into the autism world was with your daughter.

Lisa: Yes, and I have to say that with my daughter, autism was not even on my radar. And it should have been, but it wasn't. I had had a typical son in between, you know, my first born in my daughter and she was a girl. So I thought, you know, what are the chances? And she was in speech therapy as well. My little guy who is neurotypical was in speech therapy, too. And it was actually the speech therapist that said to me then one day, I think you should have me screened for autism and. I mean, I'm telling you, I just wasn't. I just really I don't think maybe I could consider it. And sure enough, yes, she was diagnosed. I think about like twenty-five months. And obviously I contacted, you were one of the first people I contacted and I was so completely shell shocked when I contacted you and you were so very helpful. And I think you came out to my house like within weeks you set up a time to come out and you started her on a program right away.

Mary: Yeah, well, I remember you contacting me. I think I was actually in an airport on the way back from an ABA-I conference back in 2010, and I had just resigned or said I wasn't going to renew my contract for the Pennsylvania Verbal Behavior Project because I was trying to finish up my PhD. And my real passion was going to be to try to get these school age procedures, which I had spent seven years working with teachers and speech therapists and OTs. I was going to try to get that and flip that into the early intervention world. And so your call came at a very opportune time for both of us. I was had more time. You didn't have any funding, though. So I said to you that my real goal was to try to spread the word and that I would actually come and take a look at her and give you some preliminary thoughts if you would, let me put her videos on YouTube. And so the first time or two or three I came.

Mary: We did videos. I assessed her using my one-page form, which is now adapted to expand. It's still one page. Now I have a one-page plan. And then as soon as you saw like this could really be effective for Mia, you advocated hard and got me funded. And so then I would come, I think, weekly to kind of program for her to teach you. I still have in my online courses. I still have videos. I remember I just was looking for another video and I found a video with you and me and I was like, saying, OK, use a zero second prompt. And now transfer that. And you're like, What?

Mary: Clearly Lisa doesn't know what I'm talking about. That's not Lisa's fault. That's my fault because I didn't explain it right. And so anyway, so those we have four videos on YouTube. They have thousands of views. We're going to link those four videos in the show notes. And so why don't we, before we get into, I really wanted to have you on because you have a wealth of information, Lisa, and I want it focused mostly on Ethan though because the severity of his autism, he's 19. He's out of the home in another place. But I want to talk about those issues because we've covered a lot of topics of early intervention, early diagnosis, my approach.

Mary: You know, and I really want to focus on Ethan more so than Mia, at least in this episode. Maybe we'll have you back some time and talk about more about MIA. But I do want to kind of catch up, catch me up and also catch listeners up that have followed me out or taking my online courses and see Mia when she was two and three when I worked with her. But Mia is now 12 years old. She was diagnosed at twenty-five months. Did they give you a severity level then? Has the severity level changed?

Lisa: You know. No, they really never gave us severity level, but because of Ethan, I always classified her as being moderately autistic. So no, I don't think that's kind of written or diagnosed anywhere. But just, you know, you know, having so many years of experience with Ethan, I knew she wasn't severe, but I also knew she wasn't mild. So moderate.

Mary: Yeah. And you said like, you weren't really watching so closely for autism. And I'm writing a second book now, and it's just about ready to be turned in the manuscript. It won't be published until April of 2021 for Autism Awareness Month. But you know, the latest research I mean, research several years ago said one in five siblings have will get a diagnosis of autism and then an additional subset like more kids will need speech variety and that sort of thing. So your middle son, Nick and Mia both had speech delays. And now the research, I think, I don't want to quote the wrong percentage, but I think it's like twenty to thirty-five or thirty six percent of siblings could get a diagnosis of autism. So the sibling connection is very strong. And just to kind of wrap up this talk about siblings.

Mary: But there are institutions and hospitals like Children's Hospital of Philadelphia, Kennedy Krieger Hospital. Both are fairly close to our houses in Pennsylvania. They both have sibling research studies. And if even if you're pregnant with a sibling. And even if you're in Texas or California or somewhere else, if you want to have your baby, your newborn baby or your four-month-old or your twelve-month-old, or they'd like to enroll them, but as soon as possible. But if you'd like your baby to be monitored and participate in research to help other families as well, you can contact one of those hospitals. So I'm thinking that you never did one of those.

Lisa: Yes. Nick was a part of that. Yes, it was. Yes, he was.

Mary: Nick was a part of the sibling study. But then by the time you had Mia, you're like, I don't have time. She's a girl, so she'll be fine.

Lisa: She's a girl, she's fine. Yeah. Little did I know. But they were great. I'm definitely recommend getting in contact with Kennedy Krieger. It was a really great experience. And he was only assessed twice, I think by the time we did the six month. And I think it was the 12 month and they really didn't even think he needed to come back for like the third assessment. They said that he was. And so for me, getting him in speech therapy, he was actually discharged after a few months because he was he was clearly not needing it. But for me, having him hooked up with both early intervention and Kennedy Krieger was such a great piece of mind to know that I was doing everything I needed to. And so when I didn't need anything for any therapy for Nick anymore, I felt confident that I had done what I needed to do. So, yes, if you contact Kennedy Krieger, they're great.

Mary: Yeah. If you're within driving, I don't know, maybe wait. Maybe they do virtual now. Who knows? Maybe the way of the world is changing. Speaking of virtual in the way of the world. So now you have 19-year-old Ethan and you haven't even seen him since February. You told me before we started recording because of Covid pandemic. And he is out of the home, placed somewhere and awaiting another placement. So I kind of told the punch line there. But at what point or what happened with Ethan that his needs became so severe that you were seeking out of home placement?

Lisa: So with Ethan, he's always, always, even as younger kiddo had a certain degree of aggression. Self-injurious behavior, you know, property destruction. A certain degree. But it was very manageable for a very long time. By the time he was about, I would say, like 17 and a half years old. It went from Ethan being aggressive, maybe biting, scratching, grabbing. Maybe this was happening maybe once or twice a week. And it was a gradual progression of it being, you know, a few times a week to daily. And then from progressing to happening daily, it progressed to happening multiple times a day.

Lisa: And Ethan was in full blown crisis. You know, a few times a week to two daily and sometimes even hourly. So along the way, we were doing a lot of things like medication management, change in meds, all kinds of things, behavioral approach at his school. But those things were somewhat effective, but not long term effective. So we kind of struggled with that. I would say for almost a full year before inpatient started getting suggested for Ethan to go spend some time inpatient where he could have more of a safe environment for them to try different meds. Different plans.

Mary: When you say inpatient. Is that a hospital, is that a hospital for kids with autism or what is it?

Lisa: So an inpatient facility would be it can be a part of a hospital. And it's I guess you could say like a psychiatric hospital unit, but just for kids on the autism spectrum. And predominantly filled with kids that are moderately to severely affected by autism. Some you know, there's some higher functioning kids where Ethan is right now. But by and large, it's kids made up just like Ethan, who are struggling greatly in their school environment as well as their home environment.

Mary: And how long has Ethan been away from home?

Lisa: Just under a year. It's been a full year. It wasn't supposed to be that long. He was supposed to be transferred to a less restrictive environment. And actually, it's called a residential treatment facility. But there are a whole host of things that go along with that placement. You know, first of all, you have to make sure you have insurance coverage, which Ethan actually has a great primary and secondary. But another thing is there you have to wait for an opening.

Lisa: So, you know, there are many you know, it's hard to imagine, but there are actually many kids like Ethan who are at the same time like waiting for a placement or they call it waiting for a bed to open within the facility. The other issue with that is the facilities themselves. So they're taking a look at all the different individual kids that are seeking admission to the facility and they in-house are determining whether they can meet that individual's needs. And I think the thing that I wanted to stress the most today is the children that have the most intense behavioral and medical needs actually will wait the longest.

Lisa: So these are the kiddos that are at the highest degree of crisis. But the heartbreaking reality is that they will wait the longest. So you can't give up hope. You have to keep plugging away. And I mean accessing whatever is suggested that you can, but it will come. We are just now at the point where Ethan has finally been approved. We actually have a date. We have been waiting for a date since May of 2019. And so here we are. And July of 2020. And we just now got a bed admission date.

Mary: Is that within the next weeks or months?

Lisa: Within the next two weeks.

Mary: Within the next two weeks. OK. So he'll get transferred from his current inpatient hospitalization, which is only meant to be short term. But it's turned out long-term placement to a residential treatment facility. And that is in a neighboring state, not in Pennsylvania. And I know from experience as a professional. Lucas, thank goodness, never had an inpatient hospitalization or anything like that. But I know from experience as a professional that when you are seeking placement, whether it is hospital placement or a longer-term residential treatment facility, placement, crossing county lines and state, especially state lines is a huge obstacle. Is that true?

Lisa: Yes, it was. And also at the very end stage before we actually got the admission day. It was a lot of issues with the facility and the rate acceptance by the insurance company. So they were at the very end. So he was accepted at the facility. But there was a lot of issues with the contracting piece. There's a lot of things that are kind of behind the scenes as a parent that you have virtually no control over. So that was that was actually a few months of just that.

Mary: Yeah. Haggling over how much they're going to get paid. Then when you said about kids with the most severe behavioral and medical issues waiting the longest. A lot of that is because it's just not doable. It's not doable to take care of a child with these needs that needs one to one staff or two to one staff or a room with certain precautions in place that's gonna cost money to renovate the room or whatever. It's not possible to do that for X dollars per day. It's just not feasible. So then it's all this haggling.

Mary: And in the meantime, another quote unquote, easier kid gets the bed. They have capped out on the intense needs. So that is it is something that I see as a professional, like I said, and it is very much a part of the behind the scenes than most parents and professionals would have no idea. You know, and we talk all I talk about as I'm finishing up my manuscript, I'm talking a lot about the waitlists for diagnosis. The waitlist for speech therapy to start with the little child, the waitlist for ABA therapy, for school. I think you would probably agree that the weightless as kids get older, especially those with significant leads and needs, are horrendous.

Lisa: Right. Absolutely. There are families that I've just become aware of, you know, through this journey that I've been on this past year. They have kids three to four states away. They have to take a plane to go visit their children. So, you know, while this has been, you know, a real harrowing thing that I've gone on, I actually feel kind of lucky that Ethan is only going to be one state away because I know other families that so many states away. These families have had multiple denials, like twenty-six. So that means twenty-six different facilities denied care. So, you know, these are the families that have to just continue, OK? That's another denial. OK. Where else can we look? Where else can we look?

Lisa: And then the insurance company is then kind of going back to the, you know, some of the other providers that say, No. Well, how about now? So it's really it's hard to say this, but, you know, my experience is typical. So you kind of want it to be atypical, but it's not. It's typical. So, yeah, if there are other families out there that are going through it, you know, there is an end in sight, but it's going to take a lot of effort.

Mary: Now, one of the ways, even though we haven't been in touch for years, one of the ways I do know a little bit about your journey is because you have over the years written some blogs and you are an excellent writer. And, you know, I remember reading one blog and we can post some of your blogs or at least the link to your Web site where people can look at your blogs from over the years. I remember this one blog talking about your experience in emergency room situation, because my husband's an emergency medicine physician and he's now, you know, a vice president of a health system that, you know, overseeing ERs and urgent centers and that sort of thing. So I have a special place in my heart for the challenges of emergency rooms and the challenges of hospitals.

Mary: And, you know, when Lucas had some issues in the way past, I was just like at night time, he's aggressive or self-injurious and out of control. It was actually before we found Dr. Murray, a psychiatrist that we both know. He's on episode number twenty-eight, MaryBarbera.com/Twenty-eight. We found him. Lucas was diagnosed with an autonomic nervous system dysfunction. He was a medicine that's actually a cardiac medicine, like literally changed Lucas's life. So if you have it, the listeners out there, if you haven't listened to episode number twenty eight, but this beta blocker, which is a cardiac med, literally saved Lucas's life. But anyway, and we talk about that in that episode. But prior to that. So he was between the ages of 14 and 18. He would have these aggressive outbursts or self-injurious behavior. And a lot of times that would happen at nighttime. And I remember the one night.

Mary: I said to my husband, and Lucas was like out of control and he was aggressive towards me and Spencer was, you know, a couple of years younger. So he was maybe 12 or 13. And I was just like, what would happen if I brought him to the emergency room? Like what do families do? Like, I'm a behavioral analyst. I'm a registered nurse. My husband's an E.R. physician, like. We're not typical.

Mary: And physically Lucas's is not six foot four and we're five foot two. I mean, I'm like, what do people do? What would happen if I brought Lucas to the E.R.? He's like, we're not bringing Lucas to the E.R.. And I'm like, well, what would happen if I did it? And, you know, he's like, we're not bringing him. So I really don't know what happens. But then you wrote a blog that said what happened. I know this isn't an experience for everybody, but just give me a glimpse of like what happened when you brought Ethan to the E.R. or was it different every time?

Lisa: Yeah, I don't throw the word traumatized around lightly, but that is a complete, traumatizing, experience for both the parent and much more so for the child. The system is broken completely when it comes to having to take your child with severe autism into an E.R. facility. There are wonderful individuals that work there, nurses and doctors that care greatly. But the E.R. is not set up for a severely autistic child in full crisis. They go in to a room where they can be monitored. The door is locked. There is somebody in our case, like a staff person in between the two psych unit beds, I guess they call them. So you can kind of see them at all times.

Lisa: So basically what you're doing as a parent is you're waiting. So they'll hook you up with a social worker when you get there. And the social worker's job is then to go find a bed for your child. There are families that wait in the E.R. for weeks. I think our longest stay was four days. It's just something that really needs we need as a country, as a society to change that practice. Ethan has medical needs. The last time he went inpatient, I tried to kind of bypass that whole system and just contacted the inpatient unit directly. But because he needed medical screening, he needed to have some scans done before the facility would take them. We couldn't, so we ended up back in the E.R. yet again. Once you've been in the E.R. one time, you do not ever want to go back. And again, I stress there are wonderful people that work there caring. It's just not set up.

Mary: And I'm sure every E.R. is different too in terms of what they do have. And in terms of psychiatric, like I know the hospital nearby us a new like psych part of the E.R. It's like separate, more state of the art. So we don't want to, like, throw every E.R. across the United States under the bus. It's no one's fault. Like you say, it's a systems issue. And even for psychiatric patients who are fully comprehend everything who are in crisis, it's one set of issues. And then to have a child and then a severely autistic child who is in crisis, with a parent that's accompanied them, it just makes it all the more complicated.

Mary: Yeah. We didn't really cover Ethan's medical issue. And it's kind of like a whole nother episode. But Ethan was diagnosed with brain cancer. And how old was he then?

Lisa: He was nine years old when he was diagnosed.

Mary: Nine years old. And so he had severe autism. And then he fell off the counter.

Lisa: Ethan was really unbalanced for a few days. He had some reflux in the morning. So we had taken him to the gastroenterologist. Come to find out later, you know, the balance issues, the throwing up in the morning were actually signs of a brain tumor. If you can believe that. The day he was actually diagnosed, he was so unsteady. And Ethan liked to walk on the counters, he just fell. And at first I thought, because he didn't get back up. And the fact that he fell to the ground was odd. But, yeah, he went to the E.R.. And I thought they were gonna tell me he had a concussion.

Lisa: And the entire team of doctors came in to tell me he had brain cancer. They found a golf ball sized tumor in his left ventricle. So Ethan is a trooper. And he went through two brain surgeries, one to resect the tumor, another to have his shunt implanted. He went through two months of radiation, another 10 months of chemotherapy. Wow. Yep. So he's got, you know, an extensive medical history.

Mary: Well, that was probably another reason why you were not watching Mia like a hawk for autism because of cancer. Yes. And Mia was a baby when that was all happening, right? Wow. So how much do you think the radiation and chemo and his brain cancer have affected the behaviors that are happening now?

Lisa: I absolutely think it's a huge factor. I wish I had some professionals kind of, you know, guiding me. And I have to say that Ethan was a really unique case for his, you know, oncologist like. So kiddos that are cancer survivors typically, you know, follow up with a neuropsychologist. They'll have cognitive abilities, tests for Ethan who couldn't participate in those tests. So we haven't really had that kind of follow up care, but I absolutely think it's a factor. I mean, how can you go through two brain surgeries, chemo and radiation to an already severely autistic brain and have no issues? I have been able to find some research on my own online that is highly suggestive of Modulo in particular, which is the type of brain cancer that he had and aggression. And these are kids that had no autism. These are typically developing kids.

Mary: It's got to be a factor, too, in your inability to get a bed at a residential treatment facility because, you know, then you're like, oh my gosh, you get self-injurious and hits his head. Is that more at risk or he still has a shot. Right. That's the thing that's long term so that people don't know what to do with a shunt. And it makes things super complicated.

Lisa: Yes. Unfortunately, if your kiddo has some more extreme medical needs. Yes. We had two denials just straight because of the shunt by two facilities. They don't want to touch the shunt. So, yes, you're right.

Mary: Yeah. I had a client many years ago who had autism. He also had cerebral palsy and he was in a wheelchair and he'd have aggression. And, you know, it makes it so complicated because, you know, like you said, it's a unique case. And then they're just like, they're already kind of like he's not going to fit in.

Mary: And then you add that. Wow. All right. That was a lot. So let's talk about things you learned, like if you were going through this same thing that you were. You had a child. Maybe there's a listener out there who's listening or professionals. You have a child that people are starting to talk about. I think he needs out-of-home placement. Family members are getting hurt, you know, families in crisis. Now, you know what are what are just three to five things that you'd be like. I wish somebody would have told me this.

Lisa: I wish somebody would have told me. It would probably be the most difficult aspect of autism for Ethan. It was probably the most difficult aspect. And I think it was because I was so used to attacking it. OK. Well, this is what we're gonna do. And I was so used to having even if we had to wait weeks to months, but there was progress. In this respect, there was no progress. And I got to tell you, I didn't know what to do with that. I thought, what am I doing wrong? It has to be my fault. Because as a parent, you think, well, there's just got to be something I can do to solve it. So I guess the biggest thing I can tell parents is this is when your patience has to be at an all-time high and your hope has to be at an all-time high and you have to reach out to other parents in similar situations.

Lisa: Facebook is always such a great thing. I typed in support groups for families that had children that were going to be placed. So I found something that's called autism away from home. And I was connected with other families that the kiddos are in the group homes, a residential treatment facility and inpatient care. And they've been a wealth of knowledge. They know a lot about....

Mary: Is that a Facebook group, Autism Away From Home?

Lisa: It's a Facebook group that's called Autism Away From Home. And it has families from all over the country, from West Coast to East Coast. So it's been great to hear their stories and see. And it's I think it's especially been helpful to then see some of the kids that are in the facilities that are doing well and they're having great visits and they're able to bring their kids home for a week or weekend. It takes a while to get there. Yes. Reach out. You know, just like when you're when your kiddo was little. Just reach out to other families that are experiencing something similar.

Mary: And what will happen now that Ethan's 19 and he's moving to an RTF. Is that a long-term kind of solution? What happens when he turns 21? Does that matter? What happens when he's 21? I mean, is he classified as an adult now? Right, at eighteen. But in terms of school? He could still go to school until he's twenty-one. So I know that eighteen to twenty two year old range is really tricky.

Lisa: Right. And you know, like everything else it's about getting funding, which that part was actually kind of easy for us to get a waiver funding for when he was post-18. But no, he will be able to stay where he is now headed until he's 21. So I am actually unsure of whether that means throughout, you know, until he turns 22 or at age 21, do we then need to start finding...

Mary: When's his birthday?

Lisa: November.

Mary: The way school age systems work is if he turns 21 in November, he would be able to finish all the way through June. Yep. That's the way, at least it works in Pennsylvania. Lucas is a July birthday. So he was done in the summer.

Lisa: OK. All right. Yes. So that. That will be the next thing that we'll have to address. And first, we'll have to, you know, make sure he's doing well where he is. And then we'll have to begin to look for another place. The plan would be for Ethan to be in a group home and very close to me right now. He's gonna be about an hour, so actually closer to two hours away. I would like him in my backyard if possible. But at least, you know, under 30 minutes. So then we can be involved in, you know, medical issues and doctor's appointments. And just having them come to the home to visit.

Mary: I imagine when you were talking about you don't know how long this was gonna take. Well, I. I feel like some of it too is, at least for Lucas, I have controlled everything. And I have seen him every day unless I was away or something. But I think that in your case, you had no choice. For the safety of him and his family. And you had no choice. But I think when you are talking about placement, there's a lot of people that want placement. It's not as urgent or in crisis as Ethan's situation. And it's hard to imagine Lucas living even 30 minutes away from me or me not being well gone to pop in or well or involved in the day to day or the overall. I imagine that's hard for you.

Lisa: That is the strangest thing. You know, the first night that they spend away from you and you're on the phone calling to ask if they've eaten today. And I do that daily, to this day, this whole past year. So you have to rely on other people to care for your child. And it's a very difficult thing to do. And you have to just respect the professionals there. Trust that they're taking care. I suggest you can develop good relationships with them. Ethan's primary therapist, where he is right now, I absolutely love her. I text with her and she'll say, he's having a great day. You know, this is what he did. And she facilitates Zoom sessions for us with Ethan. So we're able to stay connected to him. Even though he pushes the camera away often, but at least I can physically see him. So that's been especially helpful right now when we can't physically go there. Yeah.

Mary: And it's really hard. I know Lucas doesn't I mean, he doesn't understand what COVID is or why things are closed, but he knows things are closed so all of these things just add another layer of complexity. But I think you're a good example of, life threw you some curveballs, to put it mildly. And I said I think I say this in my new book, you only have one life. And so you still have to, even though you have all these challenges with Ethan, you have your typically developing son. You have Mia. You have your own life.

Mary: I'm not sure if you're working or what you're doing, too, but it's like you have to focus on living a happy life yourself. So part of my podcast goals are for parents and professionals to be less stressed, lead happier lives, even if the world around you seems to be in turmoil. So what do you do for stress relief, for self-care and to manage to have coped with so many issues?

Lisa: I think it was interesting when Ethan, the first few months after he was in an inpatient, I had to kind of learn not to be in constant crisis mode. I was still functioning. So that's kind of part of the process I've been undergoing this past year, too. I started counseling for myself for the first time. I started yoga classes, meditation. I got into being more creative. Like, I let go of some of the writing piece. And I got more into kind of physical work. I do furniture rehab, which I absolutely love, projects to keep me focused and to have a sense of accomplishment. So it's just a different creative side. And I still write occasionally, but I do more for myself instead of publishing that. So, yes, it's really important to take care of yourself so you can take care of your kids.

Lisa: But I definitely think that when you're functioning the way that we had for so long, you really lose sight of that, because when you're in a survival mode, you're not thinking about should I do yoga tomorrow morning? How about if I hop on and write a little blog post? You're in such survival mode? So it took a few months for me to kind of come out of that and to be more thoughtful and creative about what I'm doing. Mia still requires a decent amount of care. So even though Ethan is not in the home right now, I'm still doing quite a bit with my daughter. So, yeah, I think it's important to take care of yourself however you can. And counseling is a great thing.

Mary: Yeah. I like that that tip. I do think that everyone could benefit from counseling and I love the fact that you're doing yoga and you've gotten into to redoing furniture. I think all those things really help. And I think you also, maybe it's some of your background as a counselor and you're just very calm and thoughtful. And I like the fact that you, you know, have a good relationship with the caregivers at Ethan's current place. I'm sure you're going to be really trying hard as he transitions to the new place to develop good relationships. But that's a strain. Now you have to get into pairing yourself with reinforcement with those people not being too overbearing. They are going to have a different system. They might not allow tacts then.

Mary: But if you get into this, What if? What if? That's going to be so stressful. You just have to let the process happen. You're going to go through it. You're going to survive. You're gonna be happy in the end. Ethan's gonna be as safe as possible, as independent as possible and as happy as possible. And both of your kids, actually, all three of your kids are you know, you are you're going to strive to help them each reach their full potential. Continue to reach your fullest potential and just go on with your life. And it's you know, I think in the beginning, I don't know about you, but I was very much like, I want to fix this. I want to get to the finish line. Have a normal life. There's no such thing as a normal life. And I think your life, you know, has been filled with lots of challenges and just making it like I'm going to not only survive, but I'm going to thrive.

Mary: And I think that is a great message to end with.

Lisa: Absolutely. Thank you.

Mary: Yeah. No, thank you for your time. It's been great to catch up. And I think this discussion about inpatient and out-of-home placement will really help a lot of people around the country and around the world and begin to have the discussion about some of the challenges that are involved. So thanks so much for your time. And I will say a prayer that Ethan's transitioning goes well, and I hope to catch up with you again soon.