Parenting Severe Autism
Parenting Severe Autism is a raw, unfiltered podcast for parents and caregivers raising children with Severe Autism. Hosted by Shannon Chamberlin - a parent, not a professional - this show is your emotional lifeline, real-talk resource, and reminder that you're not alone.
From early childhood to adulthood and beyond, Shannon shares honest stories, painful truths, small victories, and survival strategies for the families the world forgets.
Whether you're in crisis mode or just need someone who gets it, this is your space.
No fluff. No sugarcoating. Just truth, hope, and community.
Severe Autism and special needs considerations. This type of autism parenting is lifelong... it becomes adult autism parenting.
Seek caregiver support when possible.
Parenting Severe Autism
When Home Hurts: Moving, Meltdowns, and the Search for Care
We face the change in the story since moving back to Illinois: the first sign of aggression that changed everything between us. We also share GeneSite results, ask about Leucovorin, weigh group homes vs “never,” and find a quiet win by the river.
• impact of the Illinois move on behavior and family strain
• the car attack as a turning point in safety and trust
• losing verbal leverage and rebuilding boundaries
• GeneSite insights, med tweaks, and timelines
• curiosity about Leucovorin and real-world outcomes
• cannabis dosing as a flexible regulation tool
• group homes vs institutions and future-proof care
• building respite networks and care continuity
• a small victory: silent connection and calm outdoors
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Hello and welcome to the Parenting Severe Autism Podcast. I am your host, Shannon Chamberlin. I'm so happy that you're here with me today. Today, I want to start talking about and reliving, unfortunately, the terrible events that unfolded after we moved back into Illinois with our son. Please remember, if you would like to support this podcast, you can click the support the podcast link and buy me a coffee and buy me as many coffees as you like. That would really help me a lot. It helps me keep this show free for those who need it. So if these episodes touch you in any way, make you happy, sad, angry, or otherwise, maybe you could share them or start talking about them somewhere and just spread the word about my podcast. I know that my podcast is a lot different than other podcasts about autism and about parenting. It's just a different perspective and it's a lot different than most people out there. So if you could share it, I would greatly appreciate it. I'd also like to start off by saying that these events that began to take place after we moved here are um they're they were traumatic and it's hard for me to relive them. So I think that I'll probably be able to only cover one or two at a time so that I don't put myself into some deep dark hole. The impact on our son of our move to Illinois from Wisconsin was much harder than we had anticipated. Oh man, I really think it's partly because we did not understand how he was feeling in the first place. And that's not our fault. He doesn't communicate and he's not able. It's not his choice. It's he's just not able. The only thing he ever did communicate to us is that he was miserable constantly and he wanted us to be miserable as well. I guess when you see someone day in and day out acting like that and not paying attention to anything and losing interest in everything he used to love, I don't know. For us, we just didn't really believe that there would be much of an impact except that he would be near more family members and maybe he would be happier because these family members, the grandmother and the grandfather, want to cuddle him and coddle him and love on him 24-7. And obviously his dad and I don't have time for that because we're trying to make a living and support him. So we thought having more family around probably would be great. And if it weren't for the knowledge I have now about the effects on siblings who are neurotypical, I would say that it's best to have siblings for the child as well. Anyway, we tried to condition him, as you know, to get ready to move here and move in with his loving grandparents and all that jazz. And after we got here, you've probably gathered things got much worse just by my story about the grocery store recently and not being allowed to participate in theater. And things got progressively worse in small steps, but also very quickly. As I mentioned before, my spouse and I were kind of in a race to get employed, and he landed several jobs first before I did. They were all in sales, I believe. One of them required him to go out of town for a week for training. And I didn't think much of it at the time because I've been taking care of this child forever. His dad was rarely ever home during the worst parts of his behaviors, and he was there in the morning and then he was there after he was in bed. So, you know, I'm capable of taking care of him for that long. I didn't have any problem with this arrangement at all until he attacked me in the car one day. I had found out about this special needs camp, and it's a I love this camp for him, and I've mentioned it before how we just all felt that he had finally found a place that would understand him and accept him, and he knew he was in the right place. I could just tell by his body language and everything, and I just cried about that. It was so nice when we went and visited that place. I don't know how we found out about it, but it was within the first summer of us being here. It might have been from one of the parents in the group that we decided not to attend anymore because of our views offending them. But anyway, we did find it. I was always looking for resources and trying to get him set up with as much as I could. So I'm driving him to this camp in the morning after feeding him a wonderful breakfast and doing all the things that I always do for him to make him have a great day. The camp is only about 20 minutes away, and I'm driving down the highway with him in the front seat, and I'm not sure why I put him in the front seat. I always drove my truck and put him in the back seat because he was getting crazy with me, and it was easier to control him back there because he couldn't get out. But for some reason I was in the Jeep, he was in the front seat next to me, and he, for no reason at all that I'm aware of, jumped from his seat with both hands and grabbed me by my neck and started shaking me with a tight grip on my neck. This was the turning point in our relationship. It breaks my heart to think back to this stuff because things are different between us now. I mean, we're still when he's being nice and loving, it's great, but shit just ain't right between us, and I'm sure that's my fault because I remember, you know, and I'm hurt by it, and I feel a little bit unsafe around him, you know. I kind of panicked when he did that. I kind of slammed on the brakes and I started to pull over. It was not as smooth as I would normally have pulled over, but I pulled over and I was just I didn't know what to do. Finally he let go of my neck and I said I was calling his dad because those are the magic words, right? I mean, that's what we've taught everyone that's ever come in contact with him this whole time. Call his dad. Even just say that you're gonna call his dad and he'll straighten right up. So I said, I'm calling your dad right now. That was not nice. You don't do that to me. And the look on his face was one that I hadn't ever seen before. He did not give a fuck if I called his dad or not. And he didn't give a fuck that he had just hurt me. I was speaking to all of the things that I know about this child that cause a reaction in him because he is empathetic about these things and he doesn't want to hurt people, and he doesn't want his dad to be disappointed in him or to have to get on him for any reason at all. And none of these things were having an effect on him, and I didn't know what to do. So I put on my best, strongest, scariest mom voice and scolded him until I was blue in the face the best that I could. I scolded his ass and he didn't care. And the whole time I was trying to ring his dad on the phone, and finally his dad answered the phone, and I told his dad what happened, looking directly at our son and speaking to his dad on speakerphone in the car, and our son didn't care. His expression did not change at all. It was almost like he was just thinking, Oh yeah, just wait till you hang up. I'm gonna do it again. I don't fucking care. That's how he was acting. That's what that was the look on his face and in his eyes. And I was just shocked, and I didn't know how to react to that because I f I realized in that moment that I no longer had an effect on him. I could no longer affect his behavior choices with words, and I don't have anything else. His dad listened and kind of reprimanded him a little, but honestly, his dad didn't scorn him as I had expected. I really expected more backup and more reaction, and I don't know. Maybe he was in a bad situation, you know, maybe he was in a classroom situation or something and he couldn't get on his ass like that on the phone, but I expected something that would penetrate into his brain and register that this was wrong and your dad is mad at you. And if your dad is mad at you, then you know it's wrong because his dad is like, ah, you know, everything he does is perfect at that time. I didn't feel that I was gonna be safe with him alone anymore. So of course, knowing that I was gonna have to be alone with him, I had to shake that off and reprogram myself as soon as possible. You know, it's fine, it was a fluke, whatever. But I mean, there was nothing I could threaten him with. Like, I'm not gonna take you to camp. Why would I do that? I don't want to be around him. I want him to get the fuck away from me right now. I want him to go to camp. So I didn't have anything to threaten him with. I didn't have anything. There was nothing. He was going to make his own choices and be in complete control of whatever he chose to do. And there was just nothing that I could do as a mommy at that point. It's just one adult against another, you know? That really sucked. And that was my first experience with him getting violent and physical with me. I never expected this. Never. And the only thing I could think was that he was angry that we were here. And I thought, I mean, I knew it would suck for me, but what did he care? All he never he didn't like he didn't care about being outside. He just didn't care about anything when we were up in Wisconsin, and now we're we're here, and now he's lashing out, and I'm like, well hell, maybe this indicates that he was happier in Wisconsin. Maybe he's mad. I don't I don't know why. I mean, yeah, it's not as nice or anything in the house, but he's got more family, he's got more love. I I don't know. So this is how it started. I'm gonna move on from that right now into this gene sight test that we had done. So we did this gene sight test because he has been needing more of everything, and the medicines aren't affecting him like they used to, and he's actually backsliding into the dude he was before he became medicated. I mean, he's not even close, but I'm seeing the behaviors leading backwards the way they were leading up to his behaviors before. So I'm a little uneasy, and I did mention that to the doctor, as you know, and she had us do this gene site test. I had them send me the full report, and I have not yet called the company, but I might today because I'm I'm really curious. But what I do understand at this time is that the Resperidone that he has been on is listed as it says uh the serum may be too concentrated and may have to be reduced. And the sertraline that he's on has increased because the test shows that it is less effective than usual because of his genes. And the trazodone also is listed with a number, but it hasn't changed. So the only one that changed is the doctor increased the surtraline. Then of course, that's gonna take what six weeks before it evens out and we see any differences, I guess. This test also says that many of the ADHD medicines are going to be ineffective for him. He's not on any, thankfully. But I thought that was interesting and I wanted to mention that to you. In case your child is being treated for ADHD and you're not experiencing results or you're experiencing adverse effects, maybe check for this gene site. Now, the thing about this gene site test, my spouse said this to the doctor in the office. He said, Well, it's weird that he has had to be on this medicine for several years and now you're doing the test. Wouldn't you do the test early and not make him deal with things he can't deal with if it's not right for him? And she said, insurance won't always cover the test until you have a long track record of usage. That's how this test works. It's called a gene site test. And if your child has been taking a specific medicine for any amount of time, it may qualify your child to receive the gene site test covered by insurance. And then you might get to the bottom of some of the stuff. So, speaking of these meds, what do we think about this Leucovorin that is now approved for autism treatment? I was looking into it. I'm sure you guys already know this. I guess some parents are saying that within months their children are speaking when they were nonverbal before and they're putting together multi-sentences into paragraphs and stuff. I was just wondering if any of you guys are using this for your children. What are the effects that you've been noticing if you are using it? And also, what have you been told by your doctors or your child's doctor if you have asked about getting the prescription? I'm very interested in what's going on out there with all of you with this new availability. I know there's the thing about Tylenol. I still, I mean, okay, you know, I know that our son received a shot, I think, in his butt. It bruised him for many months. Shortly after that shot is when he started getting noticed by the family with autistic traits. I was not around, obviously. I'm I'm not the mommy, so I wasn't here yet, but that's the story that this family experienced. Um, but Jacob has been absolutely terrible, apparently, for a month or two, according to his dad. I'm still out here at the camper, um, just working on myself. His dad's having a really hard time. I didn't think that he would because the kid is on drugs now. I mean, he's on so many drugs. And the cannabis liquid, if he starts, you know, getting more agitated than he should, we can alter that with a little drop of cannabis liquid and just change his mood. Sometimes he's stronger than the cannabis, sometimes he will change his mood to be more angry, which is really hard to do on cannabis. I really think it's a choice at that point. But guess what? If that happens, you can give him more and it won't hurt him. And you might knock him out. He might take a nap and wake up feeling better in a little while. My spouse has been having a really hard time dealing with our son. So when I get back, I'm not sure what's going to transpire with our son. I don't understand why he's so bad. The other thing I want to mention right now that's always on my mind because our child is older and we're older and you're always kind of thinking about the future. How do you guys feel about group homes and are they different from institutions? Every several months we get a visit at home from a woman with the insurance company for our child. They're always asking the same questions because he's now on that what they call a puns list here in Illinois. They're always asking if he wants to take advantage of things that will become available when his name is pulled from the list, which could be five years or more. I don't know. For a while, I had been there with my spouse during the meetings, but I mean, obviously, I'm not there this summer, and I'm a little bit worried because my spouse always declines the offers. And I keep trying to tell him it's you don't have to take it, but I mean, you want to be open to it. You'll never find anything that's available to help him if you don't say that you're open. If you shut it down, they're gonna mark the box that says no, and then you'll never learn anything that's in that category that becomes available for him. The lady used to ask, Are you interested in group home placement? And my spouse would always say no. And I would always pull her aside later and say, He's just being emotional. Yes, we are interested in group home information. As long as that means we don't have to use it, we don't have to take it. She says, No, you don't have to. I said, Then yes, we're always going to be interested. But just the other day, my spouse and I were talking about something. Every once in a while, he gets really down, and I can't blame him. And he said to me, You know, there's nothing but hell in life with me, right? And I said, Why would you say that? You create your own reality. He said, Yeah, but there's no family to help us take care of Jacob, vehemently starts saying, I will not put him in an institution. He's never gonna go in an institution. I'm gonna take care of him until the day I die, unless there is something that comes up that's awesome for him and would really benefit him and make him very happy. I said, Well, of course, that's the idea. I don't want to put him in an institution either, but I do want to be notified about group homes that may be able to take better care of him. Maybe they can provide him with peers, peer groups, friends, conversations, education, things of interest. Maybe he can develop hobbies or learn some skills or get some fucking speech therapy, you know? We can't provide any of that for him. I think it's a very emotional, not well thought out plan to say that you're going to take care of your child until the day that you die. Because then what? Then what? There's no answer for that, is there? No. You need to get him established in that type of community before you die. Otherwise, what are you gonna do? What are you gonna What's gonna happen to him if you don't start planning now? That is a kind of an ongoing argument between us. If any of you have information about planning elder care for your disabled child with severe autism, I would like you to reach out to me if possible. There are one or two groups that I follow on Facebook about this, and believe it or not, I haven't had time to look into it. It's hard when there's only one research head in the family. There's so much to research. So I'm trying, I'm really trying hard to get this all figured out, but it's not really a team effort right now. And if you have any information that you can help me with and maybe I can help spread it around to other families in need, I would love that. And you can reach out to me at contact.parentingsevereautism at gmail.com. You can also drop me a fan mail message at PSA. That's short for parenting severe autism, psa.buzzsprout.com. And you can also leave me notes when you buy me coffees. Anything that you can share with me would be greatly appreciated because I do fret about this a lot. He's getting ready to be 25 this year. I just don't think it's a healthy mindset to say that I don't want to put my kid anywhere except with me because the kid's going to outlive you. And if you don't have something in place, then all of the things that you did while you were alive are for nothing because he'll be flapping in the wind. He might be homeless, he might be unloved, he might be untaken care of, he might have no one looking out for him, he might be taken advantage of by a living family member who doesn't care about him and just wants his money and to make him do what they want to do. He might be abused. You don't know. You have to start now planning for this stuff. It's not a good practice to just shut everything out. You know, obviously I am trying to build my respite community, and I think it's a great model, and I think it should be replicated everywhere to help families like ours. And I think that these communities should have group homes near the property or on the property so that when the time comes, the child can go into a place where every single provider has been trained by the parents to take care of these children. There are speech therapists, OT therapists, anyone and everyone that could possibly help these children. I think that that would be great. But I don't know if it'll happen in this lifetime, you know. I'm I'm I'm trying like hell, but I'm only one person and I have no support in it. So we have to think of other ways to take care of our kids. So to anyone listening out there whose children are older than mine in their 30s or 40s, obviously you are older, and I would like to know what you're doing, how you're feeling about it. Do you have your child in a placement? Are you satisfied with that placement? Are you nervous about your child's welfare in that placement? Or do you feel that it's helping your child to live their best life right now? I would really like to know because we're kind of lost with this. My spouse and our son came out here just the other day to spend the day with me. I love it when they come. I offer them to come out here and enjoy the weather, but it actually isn't fall yet, and neither of them enjoy being super hot, and I don't either. So we're waiting for the fall to come so we can all enjoy each other outside and have fires and just do fun stuff. Jacob doesn't sit at the fire for very long, but it still would be a nice family thing. When the weather comes, it'll be great. So anyway, they were here, and I noticed that his dad's getting a little bit more overprotective, which is I thought impossible. I mean, he's pretty freaking overprotective of him. I'll remind you of the stories of when we lived in Rockford and my spouse would wake up and say, Oh, I'm not letting him go to school today. And I would say, Why? And he would say, Because it's windy. And I would just always accept that, like, uh, okay, you know, because I'm not a mom. I it was not my kid. We were new to each other, and I thought, okay, that's his dad's rule, whatever. Fine. But after many years of him doing that, I finally said, you know, the school has walls and a roof, right? And he said, Yeah, I'm like, you know, the bus is enclosed. He says, Yeah. So then why don't you want him to go to school when it's windy? He said, Because the bus might tip over from the wind. My mom loved me to death, but I never, never heard her be that paranoid. But I mean, I get it. And and I don't argue with it. And he doesn't go to school anymore, anyways. Anyhow, he was over here and he was seeming a little overprotective because the kid he fed him like two dairy-free ice cream bars in a row after having fed him donuts before that. And I was like, oh yay, this is this is great. He also forgot to bring the child's leftover pizza from the night before. This is a routine, and you know how that goes. He's been having this routine for years. He has pizza on Saturday night, he has leftover pizza on Sunday afternoon. So I was pretty nervous, you know, all this sugar in him and gluten-free donuts, of course. And no access to his routine pizza for lunch. Yikes. I didn't know how that was gonna go over, but I gave him a little extra cannabis medicine when I could see that he was getting a little bit weird, and then he evened out again and he was getting pretty hyper. And this is a small camper, it doesn't have a pop-out or anything, it's very small. So I said, Would you like to go outside? And then he said yes. And his dad looked at him and said, No. I said, No. Why? He's like, it's hot. Like it's September and it's like 84 and there's no humidity. It's fine. There's shade on my patio. He he could sit in the shade. He likes that. And he's like, Well, do you want to go outside? He's like, Yeah, I want to go outside. And so he says, Okay. So I let him know I can see you through all the windows. I'm gonna leave this door open so I can see you through the screen. You'll be safe. And of course, we're always afraid that he's gonna run. And he was not wearing his GPS. But if he runs out here, I can I mean, I'm not afraid of losing him like I am in the neighborhood. I wasn't too nervous, but I couldn't fully relax either. But he sat outside and he just, you could tell he just wanted to be by himself. He's 24. He needs man space. He can't be up his dad's ass all day. I mean, he wants to be, but really does he? Because when you give him the freedom to just go and be by himself, he just sits there. He was sitting there, looking at the river, watching the birds, commenting, oh, look at that, when he would see a fast jet ski go by, and we gave him the binoculars. It was really cute. And eventually he wanted to come back in. I think his dad maybe purposely sabotaged. This is kind of funny. Um, I had been checking on him through the windows, and I could see him just fine. And his dad jumps up, he's like, I want to check on him. Said, Well, look through the windows so you don't disturb him. And he pretended he couldn't see him through the windows. But he's bigger than me and I could see him. So he goes over by the door. And of course, now he's gonna get weird. Now that he knows we're paying attention to him and we kind of jarred him out of his little days that he was in. So yeah, within about five minutes after he sees his dad check on him and ask him if he's okay and all that shit, he says, Oh, I'll come inside. He I think he said the bugs, bugs are eating him. I got him inside, I set him up on the pullout couch here and let him lay down. And then after a while, he was still up and I had to have some lunch, and he had already had a bunch of food. So he was just staring at the ceiling and with a fake smile on his face. He reminds me of like a dog at the kennel inside the cage waiting to get chosen. He just sits there and pastes this really weird smile on his face and stares up at the top of the wall. He did that the whole time I was eating. So when I was done eating, I asked him, You want to look out the window with me? So I raised up the big blind on the back of it here, and I showed him that you could see all the trees and the blue sky and the birds, and he loved it. And we sat here together while his dad took a little nap on the bed behind us, and we just sat here for about 45 minutes silently watching the trees. It was awesome. It was so cool. That's my only story about him this week, but I thought it was a good one. He was really nice. He didn't get crazy about not having his pizza. He was just super cool, and we really enjoyed each other's company, just sitting next to each other in separate areas in silence. That's something that he never would have been able to do before. But with the help of the pharmaceuticals and the cannabis, I think every once in a while we can enjoy some peace together. In my next episode, I will tell you another story about our summer, our first summer back here in Illinois. And if any of you have any stories for me to share about the Lucavorin or group homes or anything like that, even if you don't want me to share it, if you can just share with me so I can have the information and begin my search for help for the future, I would really appreciate it. And if your child has been crazy for the last four weeks or so, that was again, we went through eclipse season during September. And it should be winding down within the next couple of days. So during that time this year, I instructed his dad to increase his cannabis dosage by one more time a day and another half a dose. So a dose and a half three times a day instead of one dose two times a day, because I remember how he was last year and it was a nightmare. So um, I don't know if it helped or not. His dad says that he's just been awful forever, and I don't I don't know. I I don't know. Thank you again for sharing my episodes and talking me up out there. I really appreciate it. I have been getting more people coming to download my episodes, and I'm so grateful. And I'm out of time for today. Hang in there. You're a superhero.