What if compassion—not credentials—keeps our severe autism kids safest?

We share a raw stretch of our severe autism journey: the camp that finally said yes, why patient volunteers sometimes trump credentials, and what it costs to hold your home together when your child unravels. Along the way, we ask for community help and outline what support should look like.

• subscriber‑only truth‑telling episodes and why we lock some content
• GoFundMe for Safer Lifestyles Respite communities and how sharing helps
• the “word accident” memory and self‑awareness moments
• finding safety at a special needs day camp after rejection
• why untrained, compassionate volunteers often succeed where pros don’t
• survival routines, timed “cookies,” and car‑ride de‑escalation
• violent escalations at home, property protection, and caregiver safety
• the grandparents’ intervention and the need for real training for parents
• the arcade story, limits, and humor as coping
• self‑injury patterns, deterrent ideas, and community requests
• interview policy, fees for self‑promoters, and listener‑driven topics
• preview of shifting family support and next stories

Please keep an eye out for my link to the GoFundMe that I started for the Safer Lifestyles Respite communities. I would love it if you would just share that link. You can always reach me at contact.parentingsevereautism@gmail.com. Send me a fan mail on BuzzSprout at PSA.buzzsprout.com.

S.A.F.E.R. Lifestyles Respite GoFundMe
Please share this GoFundMe to help raise funds for building our DREAM, Outlined in Episode 57

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Transcript

GoFundMe For Respite Community

“Word Accident” And Self‑Awareness

Shannon Chamberlin 0:18

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. You may have noticed that there is a locked episode, and it's for subscribers only. And it's just dealing with that one time when I recommended a wellness program, and I no longer recommend or support it, but I didn't want it to just be out there for free and possibly get retaliation. So that's why it's under like a paywall. And I might do other truth-telling episodes on here. It doesn't have anything to do with parenting, um, but we're more than that, aren't we? So any experiences I have that affect me negatively or positively, I may end up including in here under a subscription lock. For those of you who are interested in knowing more about me or my situation at home or the relationships that we have in the family and stuff like that that don't really have to do with the parenting severe autism per se. That helps me save money from starting a second podcast, and I might eventually start one. So that's what that's all about. If you do decide to subscribe, I thank you profusely in advance. It means a great deal to me. Thank you so much. And you can always send me emails if you have questions, comments, or stories that you would like to share with me. You can always reach me at contact.parentingsevereautism at gmail.com. And please keep an eye out for my link to the GoFundMe that I started for the Safer Lifestyles Respite communities. I would love it if you would just share that link. I don't expect you, the parents of children with severe autism, to donate because I know firsthand that funds are limited. But if you could share it, I really think it would benefit us to at least have one respite community flagship built where a number of us could get together as a parenting severe autism community and really feel what it's like to have the village that we so desperately need. I think it would improve the health of all involved.

The Camp That Finally Said Yes

Shannon Chamberlin 2:27

I was thinking back the other day about how much and how often things have changed in our lives with this severe autism. And one thing I remembered that I thought was super cute back when we lived in Wisconsin, it was before he turned 15, because at 15 he lost his words. So I know it was before that. He started using a term that I just thought was super cute, and we are still trying to bring it back to present day, but he would actually when he had words, he would screw them up and either say the completely wrong response, which is very typical for autism, or he would just say something really jumbled, and he, all by himself, would he he just decided. I don't know if he learned it at school or what, but it was so cute. He would put his hand up to his mouth and raise his eyebrows and go, oh, word accident. I thought that was the cutest way to say that I misspoke is I had a word accident. Oh, Jacob word accident. Have any of you had any cute things like that? Even if your child is nonverbal, any kind of physical body language, or if you use sign language, any kind of cuteness in relation to being self-aware. I'm interested to find that out. He's not always self-aware, but when he is, it's amazing.

Compassionate Volunteers vs Trained Pros

Daily Routine, Cookies, And Calming

Shannon Chamberlin 3:45

So in my most recent episode, I mentioned the trip to camp. I wanted to just kind of go back to that story of how we found that camp and how that happened in case any of you missed it. I'll keep it super short. When we got rejected from the theater group, I was also looking for other things that might help for him to have an outlet, and we found this special needs day camp. We were optimistic and apprehensive all at once because of all the rejection we had already experienced since we moved here. It was just a short amount of time. The three of us went inside of this little building for the camp and instantly felt very safe. And our son, you could just see it in his body language. Now, at this point, he doesn't really have words, and he was being very violent, as you may recall, with some of my stories. So he was, you know, pretty negative and pretty unhappy and pretty unwanted in every situation we tried to introduce him to. And his body language was just he it's like his whole body took a sigh of relief, and we just knew right away, all three of us knew that he belonged at this special needs camp. And I was fighting tears because I finally found a place for my boy to be accepted. He could let his whole self just, you know, weird out, and they were fine with it. It's quite a blessing. He did not always behave the way he should have, but it was the only place that he was allowed to go in a special needs space and actually spend some time without parents. They did a great job with him. He still goes there to this day. And, you know, you know what's funny is that they also have like volunteers, as I understand it, who are like high school age. And they're not trained in anything, really. They just are compassionate people. I'm not really sure of the background of them, but the girl that I mentioned who helped him in the theater while we were, you know, kind of auditioning him, she was also active at the special needs day camp. She was just a young kid just like him. But my point is that I think that the people who are not trained professionally to deal with quote unquote autism are actually more tolerant of our son than the people who are professionally trained and then they come into the special needs space and then they meet our kid and they're like, nope, nope, he's too autistic. I think, I don't know, I think there's something to that because these people are just good people. They're just compassionate people, they're patient people, and they get along with him so much easier. They accept him more than the professionals. That's just my take on it. It just really seems that he's safer with regular folks than he is with people who think they are trained in how to deal with our kids because they're used to the marketable autism. And then the ones who are not are just like, oh, okay, this is how he is. Okay, fine. Let's handle that, you know? I don't know. Interesting to me though. So while he's going to the day camp, his dad was employed doing some sales.

Escalations At Home And Safety

Shannon Chamberlin 6:56

I would drive him to camp and then drive back home, do a bunch of dishes, and then go to the gym, and then come back, change my clothes and go pick him up. It was basically that was my day. As you know, I started making special cookies. I would take him to camp and he would instantly sit down and eat a brunch. So I made him early breakfast and I would, of course, pop a cookie in his mouth at that point. And then I learned that I should probably just bring one with me when I picked him up around 3 or 3.30 in the afternoon. Because by the time we got home, it was only a 15-minute drive home, but by the time we got home, he was unbearable again. It can take up to three hours for these types of food items to begin working in the system. But he does have a super fast metabolism, so it never really took three hours. But I think he also got a little bit of a placebo effect in the car just because he knew that whatever it was I was giving him was going to make him feel better. It was kind of an instant calming routine because otherwise, by the time I was halfway home, I just couldn't wait to get him away from me. And I, you know, you'd just dream of just parking the car and walking away and just leave it all behind you, you know.

Shannon Chamberlin 8:09

The thing that really pushed me to begin just bringing an extra piece of cookie to pick him up was that he started attacking me shortly after we would get home. And it wasn't just me, my physical person. He was attacking everything. Now, see, his dad wasn't home from work yet. I was downstairs in the living area that we had, and I was alone. And like I said, it's not just my physical person. He was attacking everything around me. He wanted to destroy my computer and my printer. He wanted to destroy all of my breakable dishes, my television, my curtains. He would try to tear up my bed, he would try to tear up the walls downstairs. I didn't know what to do. It was a very reactive thing for me. I never, I don't know, I never expected this, and I didn't want to hurt him because, like I said a few episodes ago, when his grandfather wanted to use the belt on him, you know, I just like, man, I feel like if I were to hurt him, I would feel like I was hurting an invalid or a senior citizen or a a child, even though he's bigger than me and he's almost an adult. Mentally he's not. And I just didn't feel right. And I didn't know any, I don't know. I was never taught how to deal with someone like that. I did take self-defense and stuff when I was a kid, but I don't know.

When Grandparents Had To Step In

Shannon Chamberlin 9:33

I just I really feel that that's a service that needs to be offered to new parents who have been informed that they have a child with autism. I don't think like with us, we didn't know for many years that his autism was severe. So I just think as soon as you find out that your child has autism, you should be given complimentary classes on these are things that might come up physically, and here's how you can safely deal with them. Because again, it's not just bodily harm, it's harm to everything in your path, everything that you own. And I felt that I had to sacrifice my physical body and put it in between him and my belongings just to protect what little we still owned. Remember, we sold everything. So what we kept was necessities, dishes and my computer and curtains, and the walls and the doors were already there, but I had to protect that too, and I just sacrificed my physical body to put it in between him and everything he was trying to destroy. We didn't have money to replace any of this stuff, and the computer was an absolute necessity. It happened several times in a short period, but one time I was stuck. I - we were locked up together physically in a pretzel, and this scuffle had been going on for a good ten minutes. As I have mentioned in previous episodes, there's not a lot of privacy in this house, meaning there's no real insulation between the levels and stuff. So if you are in the bathroom or one of the bedrooms upstairs, you can hear what's going on in my living area. And I believe that's how the grandparents figured out what was going on because the scuffle had been going on for quite some time between me and him, and we were all wrapped up together. I was just trying to keep him still because he was reaching out for everything and trying to destroy everything in my area, namely my computer and my dishes and my walls and my curtains and shit. Like everything. So I'm just in the hallway, kind of stuck in the doorway of my office and the hallway, and it took both grandparents. They knocked on the door and asked if I needed help. And I said yeah, and they came in and it took both grandparents to pull him away from me and like off of me. But I was on him and he was on me, and we were just, you know, locked up because I didn't want him to go anywhere, but -I I couldn't move. I didn't know what to do in this very small space because I also didn't want to get hurt on, you know, this unfinished drywall and this unfinished trim work. And I mean it's just it's a fucking dangerous place down there. Man, I just I hate it so much. I'm grateful for the roof over our heads, but damn it's dangerous, you k

The Arcade Story And Boundaries

Shannon Chamberlin 12:21

now? It was weird. Like it wasn't exactly shame or embarrassment, but I guess it was defeat, you know? These people are retirement age. And I was what, right around 40 at that time. I should have been able to do more. And I couldn't believe that I had to have grandparents pull this monster off of me. And I can't - I can't even describe the emotions that I had. I was disgusted, I was defeated, I was hopeless. We were still waiting for a doctor's appointment, maybe even still waiting for insurance. Everything was taking forever, and these things were happening quickly, daily. It wasn't a long stretch in between, and I'm sure that it was something to do with our moving there, you know, but hey, I was upset too, and I tried to help him deal with it, and I understand that it must be hard when you can't communicate. But damn man, why does it have to go straight to violence and destruction? Isn't there anything in between? I just - it just really sucked.

Shannon Chamberlin 13:37

And again, I can't go into more right now. I have to relive these little stories, but I want to share them because I there's a progression. The effects of this behavior on everyone in the family, it's important, and I want to get it out there, you know. Um I'm gonna try my best to recap and share these things, not only from my perspective, but I want to give you a well-rounded view of the activities. Um of them are kind of entertaining, even though they're fucked up. Um, so I'm looking forward to sharing some of these with you, but it will only be like one story per episode because I kind of have to like therapy myself afterwards.

Self‑Injury, Deterrents, And Consequences

Shannon Chamberlin 14:25

So I'm gonna close this out with a cute little story. It's not really cute. It's just it's a story that I did think was funny, even though it was stressful at the time. When we were still in Wisconsin, you might remember the story where I had him help me make a savings jar for the arcade. I printed off a bunch of pictures of the games and stuff that I knew he liked there. I had him decide where they would go. I always have let him do the decorating of anything ever, just to get that part of his brain going. We made this nice little savings jar, and then when he was good, we would put quarters in it, and that would get saved up to go to the arcade. On his 16th birthday, we took him to that arcade. He had a gluten-free pizza and did all the games, and he had a love-hate relationship with these games, and we already knew that he couldn't take much. He would try to go longer than he actually could, but if you let him go more than, I don't know, 20 minutes at the arcade, it would go from love to hate really quickly, and everything would go downhill. I mean, we're crying, we're kicking, we're, you know, melting down and obsessing about Batman or Star Wars or Darth Vader or something by the end of it, and it would go on for days. It was not healthy. So we had to really monitor his time there and interrupt it with a lot of breaks for drinks or food, walk around and just kind of make it an event. He can't go from game to game. It's just uh he couldn't back then. It was really unhealthy. So anyway, at the end of it, his dad and I would play that tiny little bowling game that's at most arcades these days. It was nice and dark over there, and it would give him time to decompress while we were having a little fun of our own. And this one day we were getting situated to go over there and finish out with the bowling, and he was over there already getting ready to sit in the dark, and this was a routine, so we figured everything would be fine, and of course it's on his 16th birthday, and we look up and he was going through a thing where he would take people's stuff, food. You know, he would you had to watch him like a hawk, but we didn't see anyone around, so we weren't really watching him. We just thought he'll go over there and sit down. But if there were people around, he would go over there and take their food off their table and eat it. And so, you know, with his special diet and everything like that, and plus manners and being gross and all that, it was quite a job just to have him out in public. So anyway, there's no one over there, he's over there. We look up, and just too late we saw that there was an extra large size drink left over there and there were no people. And right when we noticed is like right when he noticed, and he was already picking it up. And this is when I realized that the two of us had the same style of interruption. I it was like slow motion. The two of us are saying the exact same things at the exact same time for the exact amount of time. It was hilarious. He is in slow motion picking up this thing and bringing the straw to his mouth, and we're saying, no, no, no, no, no, no, no, please put that down, please put that down, don't do that, don't drink it, no, put that down, put that down, stop it, stop it, please stop, please stop. And he is just sucking the life out of this drink the whole time that we're saying these things. We're too far away to knock it out of his hand or take it away from him or anything like that. So please put it down, please put it down, stop, stop, stop, no, no, no, please stop it, please stop it, don't drink it, don't drink it, stop it. Oh, dude, what the fuck? That's that is our parenting completely encompassed. This is what happens when he goes off script and I started realizing that that's what we do everywhere. Every single attempt that is thwarted and doesn't work out is it ends in, oh dude, what the fuck? So super effective.

Listener Feedback And Guest Policy

Shannon Chamberlin 18:31

I don't really have any cute stories right now, other than that. That's why I had to go in the Wayback Machine and pick that one out. He's been biting his arm a lot. And, you know, I was thinking, you remember how when we were kids you would have friends that were nail biters, and they would put something on there, and it tasted like uh maybe like earwax or something, you know? I heard that it was really gross and bitter. I wonder if there's something I should be putting on his skin. He has one specific area of his arm that he likes to bite. Now I don't want it to be able to sting his eyes. I want it to discourage him from continuing to bite himself. He does it so quickly and usually in private, and every time I see him, he's got a new bruise in the same spot. And I even asked his doctor to look at it to make a big deal out of it and kind of shame him because he keeps doing it and there's like a knot in his arm. And he gets in a lot of trouble and he'll do this stuff. Like he had a massage scheduled the other day. So what does he do? An hour before his massage, he starts slamming his head on the wall and biting his arm. That behavior, usually, if he was going to day camp, no daycamp, and maybe even no lunch because of that. You know, you're grounded to your room, which what he doesn't really care, but we don't know what else to do. But you're definitely not getting a reward of going and having fun at camp if you're gonna bang your head on the wall and eat yourself. If anyone out there has um a deterrent, something that you know works to keep them from biting themselves, please let me know.

Shannon Chamberlin 20:03

Send me a fan mail on BuzzSprout or an email. So it's PSA.buzzsprout.com or contact.parenting severe autism at gmail.com. I'd also like to know if you guys would like to hear from any professionals in the field. I get a lot of requests for me to interview other people who are promoting themselves and their services, and I turn most of them away. As you can tell, I don't interview people. I interviewed that one lady from Better Speech, but you know, she didn't even put my episode on her page with all the other interviews that she has done. So I was a little insulted by that.

Shannon Chamberlin 20:43

If you are out there listening to this and you want me to interview you, there is a fee. Just so you know, this is not free. I am not interviewing you for free.

Shannon Chamberlin 20:52

And if you are listening as a parent or a caregiver and you would like me to interview people, please email me and let me know what subjects you're interested in, and I can probably tailor that to you because I get offers from just all different areas of life. Otherwise, I'll just keep story time with me and keep it simple.

What’s Next And Final Encouragement

Shannon Chamberlin 21:11

So, in my next episode, I am going to divulge more information. Things started getting really interesting, and the support from family started to change as well. So, we'll talk about that in my next episode. Hang in there. You're a superhero.