Navigating Parental Identity and Community Misunderstandings in Severe Autism Caregiving

This episode explores the complexities of parenting a child with severe autism, focusing on behavioral observations, shifts in household control, and the impact of communication. Throughout the conversation, the host reflects on personal experiences, shares strategies, and offers insights that encourage connection and understanding among listeners. 
• Observing and interpreting muscle twitching behaviors 
• Discussing the role and effectiveness of pharmaceuticals 
• The positive impacts of structured control in household dynamics 
• Celebrating Jacob's new communicative expressions 
• Addressing the obsession with dad and respect for boundaries 
• Misunderstandings surrounding non-sexual behaviors in therapy 
• Reflecting on identity loss and caregiver challenges

Chapters

• 0:18 Positive Impact of Taking Control
• 10:53 Seeking Attention Through Negative Behavior
• 15:46 Parent's Identity Crisis at Autism Swim
• 22:22 Misunderstandings of Autism Behavior
• 30:49 Connecting Through Shared Experiences

Transcript

Speaker 1: 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. I've got a lot of different things I'm going to cover today. They're just coming to my mind. I've got a little list here and I hope you'll bear with me. Hopefully, we can form this into some kind of meaningful episode. If you would prefer to read the transcript and you can't find the transcript on your hosting platform, you can always head over to psa. buzzsprout. com where you'll find my transcript, show notes, links to recommended products and also some podcast merchandise. I've got some coffee cups, water bottles and stickers and stuff like that available, if you'd like to support the podcast or if you'd like to point someone else in this direction, you can also buy me a coffee. So let's get into this.

Speaker 1: 1:05

I first wanted to mention that I've noticed over the past, I don't know, six to 12 months, that when Jacob sits down to watch a show with us or something, about 80% of the time he will have these really long muscle twitch things going on. It's I don't know. It's almost like he's wringing out a sponge and it's only on his right arm and it will stop if I ask him to stop. But he'll just sit there quietly and it almost makes his whole body twitch just by the rotation of his arm while he's sitting. And it's just. It's really strange. And today, just about an hour ago, he was sitting here in the side chair next to us. We were watching some show on TV and his arm was doing this thing. He all of a sudden just reached out and grabbed onto his dad's foot and said oh, squeeze it. And I kind of think that maybe it's like one of those urges, because he usually would have something in his hand and he doesn't carry anything in his hand lately and he's always tense, he's like a piece of rebar walking around. I think that. I don't know. I feel like it's that maybe that buildup of lactic acid or something related to his stimming and his muscle tension that he's always under. That's why we get him a massage once a month with his disability money, because he's just so tense and I feel like it's got to hurt on some level. But this twitching is strange to me. I don't know what it is, but if you have seen this in your child and you have any insight on that, I'm interested.

Speaker 1: 2:32

I've been wondering lately about pharmaceuticals again, because when we got him on his pharmaceuticals they said you have to give it four to six weeks and we'll see how it is affecting him. It takes four to six weeks to build up in his system and start working. And then recently, when we had one of his prescriptions increased, she said well, you have to wait four to six weeks and we'll see how it's affecting him. It still has to build up in a system for four to six weeks before we see the change. So I'm wondering he's been on this medicine for geez, I think close to three years perhaps, and it takes four to six weeks to build up. But then it doesn't. It just stays at an even keel, is what I think I understand about it. And now he's got even more of one, that's he's never had medication ever in his system, ever. Why is that? It can build up for four to six weeks and you can take it for three years and you can build it up again and increase for another four to six weeks, but during that whole time every morning is a nightmare. How is that possible? How is it that he could just wake up and you wish that he was medicated in his sleep? I don't Get that. That doesn't make any sense to me.

Speaker 1: 3:48

I also have noticed, though, that some days, especially lately, he's been great during wake up, and I'm starting to wonder if my friend is right. I was telling her about all these things that have been happening, and she said I think it's related to the new pattern in the household. I feel like maybe she's correct on that, because the new pattern is. Over the past week, I finally I told my spouse look, you just have to stop doing things for me to take over. The more that you're doing, the less, I'm going to think, needs to be done. I just really need you to stop doing stuff so that I can do the stuff and take control of my household again. So we've come to this decision, and now, over the past four days, I have been in pretty much complete control, and I think that it's affecting Jacob's behavior positively. So woo-woo for that. I'm so excited.

Speaker 1: 4:36

He has been very nice for three out of the four mornings of this week that I've been in control, and I was wondering if perhaps the change in his attitude can be attributed to the change of who's in control, because my control is orderly and his dad's control is chaotic, and this is just regarding caring for Jacob, basically running the household. So we're talking food, dishes, kitchen and rules. Basically, when his dad's in the kitchen, he is completely allowed to basically do whatever he wants and to disrespect his dad's wishes. If his dad says stop touching my butt, stop saying dad, dad, dad, stop harassing me, don't stand so close to me. He's allowed to break every boundary, he's allowed to ignore every request. He just doesn't do what he's supposed to do when his dad is running the show in the kitchen.

Speaker 1: 5:28

So I've taken back over and he has fallen right in line, meaning he knows oh, she's in the kitchen, I'm not allowed in there. I'm going to go sit down and he can go in the other room see me through the window that's in the wall and he'll just sit on the couch quietly for as long as it takes me to be in and out of the kitchen, and I really just love that for both of us. I think that it's kind of like when you take him to the grocery store or even outside the bigger the space you put him in, the more he feels responsible for filling that space with himself and I feel like the lack of control that his dad has while he's doing the Mr Mom stuff is actually just like a big empty room for Jacob, whereas the level of control that I have when I'm doing the mom stuff is so structured that he feels that he is taking up just enough space. And I don't know why, but he has seemed so happy and just the other day, like when he realized that I was pretty much in control of meals it was the second dinner that I cooked this week he was just like I'm so happy, I love this meals. It was the second dinner that I cooked this week. He was just like I'm so happy, I love this food. It was a little more broken than that, but he did actually pull out full sentences and they were joyful and grateful and he's been that way all week. He had a rough morning yesterday and I don't know why, but we're not the only people in the house, so I have a feeling that perhaps he was influenced by someone, but after he let his medicine kick in and everything, he was cool and he's been good all week. I'm grateful.

Speaker 1: 6:58

I just wanted to share that good news. I am more grateful and I'm functioning better and our household is functioning better, because when his dad was in control of doing the meals and the dishes and keeping the kitchen clean. The dishes weren't done, the kitchen wasn't clean and the meals made him miserable and he would stand up there and take all the abuse from his son and then come down here into our quiet area stomping and moaning and bitching and having a headache and not feeling good and just being completely stressed out, which, yeah, that stresses me out. So it was just absolute unwanted chaos and I am really happy to be back in control. Yes, it means I work harder and I do more. It means his dad gets to play more, but you know I really don't care, because if I have to deal with all of that, I still don't get to play. You know I don't get any time for myself where I can breathe. So I'm happy to report that we're back in control and it seems to be affecting Jacob positively.

Speaker 1: 7:55

I think that he is showing gratitude in his actions. So there's something he had developed a few months ago, a new way of trying to extend interaction between all of us, instead of him just saying da, da, da da, love you, love you, love you, love you. Now he cause he knows we're going to say use new words and I'm done with love you right now. I'm all done with love you. That is our constant answer. When he sees us getting tired of him saying dad, dad, dad, dad. Now he'll say I want to talk to you. Hey, Shandell, I want to talk to you. Hey, dad, can I talk to you? And we're like, oh wow, this is good. What's going on? Yes, yes, you can talk to me. Talk, go ahead. Yes, I am listening, I'm here for you. And we'll give him full eye contact, full attention, and he'll say hi or love you. But he's just.

Speaker 1: 8:43

I can see that he's just trying to extend the interaction before he gets shut down for using the same words. So we're now trying to teach him that when you ask for the floor and you're given the floor, you have to produce something of substance to keep the floor. Otherwise we're going back to what we were doing. That's an ongoing process, but his newest stuff, since I've started cooking the majority of the meals and everything, is hey, look, watch this, watch, look at me, hey, look at me, watch me, I'm dancing. And then he'll do this weird little dance and face and he'll say ooh, ooh. I don't know. I don't know if this is just him being grateful or it's cute, though I wish he had an outlet, because he's always saying that he's dancing and I still am searching for some kind of theater group that would allow him to be his weirdest self and provide him the space for that and for the loudness that goes with it. I would really love to find something more geared towards that, but I think it's really cute that he's now more concerned with showing us his new dance moves than he is with breaking the walls or whatever destructive stuff he was doing before.

Speaker 1: 9:53

As I've mentioned through all of these episodes, pretty much he is very obsessed with his dad. His newest thing it's getting more and more invasive each time, and it has been going on for several months as well is he will get pretty much face-to-face with his dad. He knows to try to stay an arm's length away from me. He's still trying to break that boundary a little bit, but I will straight up put my arm out and if it hits him, it hits him and he knows to get back. But he won't give his dad that space. So he's been getting nose-to-nose with his dad first thing in the morning, not brushing his teeth, just coming straight up to him while we're sitting there having coffee and hey dad, and then he'll hang his mouth open and loll his tongue out the you know, and he'll just breathe. He'll slurp breathe, like with his tongue hanging out, and he'll breathe through the sides of his mouth and make a slurping sound. It's really disgusting. And he'll just do that right in his dad's face and his dad allows it and the other day we decided that we're going to not allow that anymore and he would not stop.

Speaker 1: 10:53

He was like just really pursuing the breaking of that boundary, just totally disrespecting his dad's wishes for personal space. And the more that we stood our ground, the more he stood his ground and tried to push through and it was just awful. I don't know what his problem was that day, but that was the day I said he had a rough morning. It was just dumb. I don't understand why he's doing that, but we're trying right now to get him to understand that dad deserves the same amount of respect that I do. I don't know. I don't know what it is with him, but this obsession with his dad is so bad and so deep and long running that way, back when he first started therapy the therapy I just told you about recently.

Speaker 1: 11:34

Their primary focus after the first 30 days of getting to know him was to get him less obsessed with his dad. That was actually their focus. They would therapy him for a little while and say now in 10 minutes, we want dad to walk through the room as he's getting ready for work. We just want dad to walk through the room as he's getting ready for work, we just want dad to walk through the kitchen into the other room. And the goal is to make Jacob continue eye contact with the therapists and continue the therapy that he's in the middle of and get used to his dad being around and stop obsessing. They were working on that and it was really hard. Things got really rough on that in regular life around therapy. It was so hard. But yeah, this has been going on for a really long time and it just it's very, very strange that he's so obsessed with his dad and he needs his dad to be kind of like the disciplinarian and the playmate, but he doesn't respect his boundaries and he doesn't respect anything that he says. Unless he thinks he's getting his dad angry, then it's different. But you know, just like up there in the kitchen, he will not respect anything. But I just don't know. I don't understand it at all.

Speaker 1: 12:41

Before all that therapy started we were lucky enough to find that one non-profit for autism when I started bringing him there. That's where we learned that he had trouble with changing of thresholds and the lady that was running that she's really great. She observed him for a while and she was educating us more than we had ever been educated on autism before and she said that what he's doing right there that is not autism. And we were very confused because she said that he's a lot, he's super autistic. We hadn't had the evaluations yet. We were surprised to learn the separation between things we I don't know. We just felt like this is him.

Speaker 1: 13:18

When we got accepted into this therapy group, we were very grateful for her observation and her techniques and her advice and assessments of our son, because he hadn't been assessed by any psychologist in a very long time. We hadn't gone through the autism scales yet or anything like that for therapy. We were not able to do that yet because of the waiting list and this lady taught us so many things about his autism. She observed a lot of his behaviors that he was having that were negative and very unwelcomed, and she told us what he's doing right now, right here in this part of life, is not autism. We were shocked. We're like what? And she says this is behavior and, more specifically, this is attention seeking behavior. And we had not had any education on any of this. So we were very interested in learning more and we kept bringing him in for her therapy. It was really great to be able to go there.

Speaker 1: 14:15

So we learned that all the negative stuff he was doing that would heighten a response from one of us or from anyone was not autism and it was completely voluntary and it was attention-seeking behavior for negative attention. And I said well, why? Why does he want negative attention? He always wants love, he loves to cuddle. He's just a weird cuddly person Like. He loves affection and positive attention. Why would he want to go and make us angry and seek negative attention when he gets all kinds of attention at home? He gets anything that he wants. Why does he want to get negative attention? He gets all kinds of attention at home. He gets anything that he wants. Why does he want to get negative attention? And she said it's the high. It's like an adrenaline rush for him, the closer he can get to the edge of what he perceives as the cliff of anger with you guys, the happier he is, and that's where he wants to live. He wants to live on the edge of disaster, and this is his way of doing it. So you have to stop giving it to him, and that's when I just started educating everyone in our life If he's acting like this or he's trying to get you mad, don't even look at him. Don't give it to him. Don't give him what he wants. All he wants is for you to get mad. He wants to think that you're mad and that you're going to yell at him or do something that is negative. He's feeding on that. Don't give it to him. That was a huge lesson for us, and it's when we started to understand that behaviors are not autism that changed our approach to a lot of different things, which I'm sure will come out in many of my future episodes.

Speaker 1: 15:46

We were eventually invited to this autism group's swim therapy, which was really nice. She kept it close to her vest. We didn't even know that they did this, but she had a swim therapy class that met once a week at a local hotel. After seeing him for a while, I drove 40 minutes a day to give him a couple hours of her therapy and attention each day. She finally invited us to this therapeutic swim and during swim she found that most of the kids with autism that were in this group were very receptive to her therapies while they were in water, which makes a lot of sense to me because our boy loves water. So we were really happy to get this invitation and I took him. It's possible that all three of us went to the first one, but I took him once a week, every week.

Speaker 1: 16:37

The first thing I noticed was that I think this is when I noticed that I had lost my identity a bit. I don't carry a purse and I would buy clothing to make up for it. So I showed up to the swim, just like I showed up everywhere at that point, wearing cargo pants stuffed to the brim with supplies for Jacob, my hair in a you know, a low ponytail in the back, no makeup, not even wearing my contacts. I just had my glasses on, which were old, and I walked into the hotel and got him into the swim area and I saw other parents that looked exactly like me. We all look the same. We all look like zookeepers is what my spouse said and I really felt that when he said that because I came home and I said you know, all the moms dress just like me, we're all wearing khakis, we all look like dirty and we all just look like shit and we all look miserable. Do I look that unhappy? Because they looked really unhappy and they had the same pants. Their pockets are stuffed just like mine. And he says well, yeah, you all look like zookeepers and it makes sense, you kind of are and it was really funny.

Speaker 1: 17:46

But the more I went, the more I started to realize that this isn't me. What has happened to me. One of the biggest things was that I sat in the far, far back because he was so obsessed with us at the time that he wouldn't enjoy anything if he knew we were there. So I had to pretend to leave and I would come back in a different door and sit way, way in the back behind a bunch of plants, or I would just go upstairs and look over the balcony because I wanted him to get therapy and enjoy himself and not pay attention to what I was doing.

Speaker 1: 18:17

So when I was sitting in the way way back, I noticed that I couldn't see anybody's faces with my glasses on and I noticed that, no matter how much I cleaned my lenses, all the lights had halos around them and they were blurry. Everything was blurry and I I realized I'm like, oh my gosh, I have been so busy taking care of him. I haven't been to the eye doctor in like three years. I can't see. I started realizing, you know, wow, yeah, I have my own health issue going on, but, holy crap, this is not me. I look so miserable and dirty and I can't even see. I'm not even taking care of my own health because he's got me so busy and depressed I can't do any more than I'm doing. It was a hard thing for me and it took weeks for me to come full circle on that whole thing, but I realized, wow, this is hard. I'm not doing nearly as well as I thought because I can't take care of me. So that was a weird thing for me to face.

Speaker 1: 19:18

But all the parents matched, except for one lady. She was really dressed richly all the time and I think that I found out she was the girlfriend of a lawmaker there in that area or something like that. So that made sense and I was hoping she would I don't know, help get some things pushed through for autism, but I don't think she was involved at all. A lot of interesting things happened during this swim therapy and outside of it with the same organization, but the thing I wanted to tell you about this week is that when he got into that group, I think that when he got into that group, I think he was 14. I'm pretty sure he was 14. He could have been 13. I'm sorry I don't know, but I know he wasn't 15, and I will tell you how later.

Speaker 1: 20:01

But he loved getting in the hot tub. He loves baths, so it made sense to me and this one day, I don't know, the kids in the group were all different ages, but it was a teen autism group, so I'm pretty sure I think he was 14. Anyway, they were all teenagers. A couple of them were in their 20s and there was this one girl there and I'm pretty sure she was in her 20s. I'll tell you about her another time, but she was developed and she was in the hot tub with everyone and my son was in there and we got a talking to about him being there because they said that he was looking at her breasts and touching himself in his swimming trunks and I was so insulted by that because my child is nowhere near sexual. He's not a sexual being at all At all. I know he thinks redheaded girls are pretty and I can tell because he loves all the redheaded princesses on Disney. That's it. Anytime he sees a redheaded cartoon he really loves them. He also loved Mary-Kate and Ashley. So I don't know, they're not redheads, but I'm just saying like that was the extent of it for him.

Speaker 1: 21:14

And at 14 years old my son was not sexualized in any way and I was insulted that a woman who is an expert on autism pinned that on my son when he knows nothing. It's like you take your own ideas and corruption and whatever exposure that you've had in your life and you put it on my kid and now you have labeled him with a sexual misconduct of sorts and he didn't mean any of it. And I know that because I well, first of all, I was there and I saw him over there and he did nothing different than he would do to anyone else. It's just that she was sitting down and he's taller and he was squatting in the water. You know how you do it to get in the water, but you're not sitting yet, and he just he would go up to everyone and say hi, hi, hi, hi, hi, hi. That was all he did back then and he would jump. And one of the things that he did when he jumped was flop his junk around with his hand. And it's not sexual at all.

Speaker 1: 22:22

It started at our house. He had a huge, huge mirror in his bathroom and he would spend hours up there entertaining himself naked in front of the mirror and I could hear him laughing all day long and I just, you know, whatever go ahead, whatever makes you happy. But I did see what he was doing one time and it was hilarious. He was cracking himself up. He would just stand there naked and it was the big mirror on the wall, huge. You could see almost your whole self in the mirror, but it was a big wall mirror and then there was the sink and countertop in front of it. So in order to see your whole self, you had to jump up a little bit. So he would jump up a little bit to see his whole self, because he's a peacock like that. He noticed that his junk flopped when he did it and then he noticed that he could give it a bigger flop if he just flicked it a little bit with his hand. That was his bathroom activity. It wasn't sexual, it wasn't anything. He just was playing with his reflection and laughing. And I don't blame him, I don't know. I just I get it. I think that's funny too, you know.

Speaker 1: 23:29

So he got accused of staring at her chest and jumping up and down and saying hi, hi, hi and fondling himself at the same time. And I was like he doesn't know boobs, he doesn't know breasts, he doesn't know sex at all. We tried to have the talk with him. He doesn't get it, he's not there. The school tried to make us sign paperwork for him to take sex ed or whatever, and he doesn't know anything. I couldn't put him in sex ed because he didn't fit, you know it. Just it wasn't age appropriate, honestly, because he's not 14 at that time, he's still five, you know it just doesn't, it didn't fit. So I never did put him through sex ed.

Speaker 1: 24:11

He never saw women get sexualized. He's never shown any kind of interest in a woman, whether on the silver screen or in real life. He only is attracted to people's eyes because if he gets close enough to your eyes he can see himself. He is in love with his own reflection. He doesn't care about you or your tits, he just wants to see himself everywhere he can. So I was really insulted and I was just shocked that that's where this lady took it, without even knowing him very well at all. You just assume that my son is sexualizing another person. He never did Never. And he has since been accused of that a couple other times and it's never been the thing.

Speaker 1: 25:01

One time, when he went back to school, he was working with an aide, and I don't know if it's before we pulled him out or after, but I remember he has to have a one-on-one aide and it got to where he needed two one-on-one aids. But during school, working with his aid, put his hand on her heart, her chest, as they said. I think they said it was on her breast. But he knows where the heart is and if you touch his heart, he will touch your heart. And also, if he thinks that you're sad or that you can't breathe or that you're out of breath or something like that, he will touch your heart or he'll do his best, because he touches his own heart when he has too much activity and his heart is beating rapidly. He also knows that feelings live there and if he senses that you're sad or if he's trying to communicate to you that he is having feelings, he will touch your heart, not your breasts. He will touch your upper portion of your chest, where he believes your heart is.

Speaker 1: 26:06

He doesn't mean anything sexual by this at all. He's just, I don't know, being compassionate. And everyone seems to think that people with autism have no compassion, I guess, and that if they touch you in an area where most of us believe is related to love, well they must be molesting you because they don't have feelings. And I really resent that outlook towards my child Because, as I said, even now, at 24, I've never seen him ever get gazunga eyes at any woman ever.

Speaker 1: 26:41

And I mean, when you get past a certain age, your parents start to wish that you would show a little bit of interest in something or someone, even though he's obviously he's not going to have a relationship. I mean, yeah, I have people say, oh, you never know. Yes, I pretty much know he'll never do certain things and I'm tired of people telling me that I don't know this. I know what it takes to function in society and he ain't got it, but you just kind of wish that you knew whether he was attracted to people or not. You know, because it's a, it's part of the human experience and there's so much of the human experience that he's missing out on because of his severe autism. And sometimes you just wonder does he think any of those girls are attractive? Is he going to have a tell when he thinks that someone's pretty? Or does he feel attraction? Is he affected by beauty or what he perceives to be beautiful? Does any of this register with him or what's going on in there? So you do wonder, and as closely as we have watched him, we have never, ever seen him change from a five-year-old to a horny 18 or 20 year old, never, never. I have another story about that for you another time, but I was pretty pissed off about that.

Speaker 1: 28:03

In my next episode I've got a couple other misjudgments and misinformation bits that came from this experience at the nonprofit autism place, but I was pretty sad about that. That that's where it went for my kid. I don't know what it is with him shaking his junk all around without his clothes on, though I mean, I know that he thinks it's funny, but yesterday he was having such a bad morning and he I don't know who he got mad at. It might have been that his grandpa was in the house. He likes to have the house to himself for a while when he wakes up and he doesn't get that all the time, and I think that's a lot of it. But he was just having a bad time.

Speaker 1: 28:40

All of a sudden we hear we usually can hear it if he's slamming his head on the wall, but we didn't hear that. All we heard was in his bedroom. So my spouse goes up to his room and as he's walking in his room and trying to get him to settle down, I hear Jake just do a huge roar, just like the one that he did when he dropped to his knees in the front yard. After I put him outside, he just roared this hellacious roar and his dad's like what the fuck? And I mean it just came from nowhere. I asked Tweedledum what happened. He said well, he was over there and he was hitting his head. So I yelled at him and I don't know, because I usually can hear him slamming his head on the door, jam right there. And I didn't hear it. So I don't know. I think maybe things got blown out of proportion or something. But after his dad got him to stop screaming and he got him to get in his bed, we were in the living room trying to hash things out and we were only down there for 30 seconds.

Speaker 1: 29:44

Jacob comes running out of his room and I had my back to the hall and I didn't want to turn around and give him more attention. So I just stood there watching my spouse, who was in front of me, facing Jacob's room, and my spouse looks up and he, with a straight face, he's like Jacob, if you want to jump and flap in the hallway, can you at least put your underwear back on? I instantly got the image in my head of what was going on, because his flapping is very violent. It's not the cute stuff that you see where you can play it off like he's dancing or something. I mean, it is a violent cardio workout. So when I tell you that we flap to him, if he flaps in our face, we flap back. It is hard. We have tried it. It's exhausting and very violent. It's head to toe like you're twang in a rubber band. It's just ridiculous and very violent. So I can see that and I know that he's got his underwear off and he's just putting on quite a show. I never turned around, but I was laughing so hard even without seeing it, because I just knew.

Speaker 1: 30:49

Well, imagine that I am out of time again. I am looking forward to making another episode next week and I would love to hear from you if you have any similar experiences or if this episode or any other episode has triggered a memory or a thought or some kind of an idea with you. I would love to know. So feel free to send me an email at contactparentingsevereautism at gmailcom, or you can send me a fan mail text message at psabuzzsproutcom. You hang in there, you're a superhero.