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
Living With My Decision to Accept Help From Family
Parenting a child with severe autism often means facing challenges that remain hidden from the outside world. In this deeply personal episode, I take listeners into the harrowing reality of what happened when my nonverbal teenage son began directing aggressive behaviors specifically toward me.
The painful irony of being verbally abused by someone who professionals deemed "nonverbal" created a surreal existence where I developed physical pain responses to his targeting. My body would react with sharp pains in my side the moment I heard his aggressive vocalizations approaching—a visceral reminder of how deeply these interactions affected me. What made this situation uniquely isolating was his remarkable ability to transform into a sweet, compliant child whenever someone who could validate my experience was present.
I share the heartbreaking moment when I found myself telling my husband "he's lying" after our son denied his behavior—a childish outburst that revealed my desperation to be believed. When my father-in-law finally offered help during a particularly brutal episode, I accepted without fully considering what form that help would take. The resulting verbal tirade he unleashed on our son temporarily changed his behavior but left me questioning everything about appropriate boundaries.
Through mysterious new behaviors like stuffing deodorant down drains, flooding bathrooms, and eventually self-harm, we discovered a shocking truth—our son hadn't been sleeping for months. Family members living in our home had witnessed his nighttime activities but never thought to mention this crucial information as we searched desperately for answers.
For parents facing similar hidden battles, this episode offers no easy solutions but something perhaps more valuable—the knowledge that you aren't alone in these complex, rarely-discussed aspects of raising a child with severe autism. Your experiences are valid, even when others can't see or understand them.
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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. Remember that you can support this podcast by sharing the episodes, leaving a tip or the buy me a coffee or anything like that. I also have some pretty decent merchandise designed with my logo and tagline and things like that, and all of these options are available on my hosting site, which is psa, short for Parenting Severe Autism psabuzzsproutcom. And, of course, you're welcome to email me.
Speaker 1:Well, in this episode I am going more into the behaviors. Our life is basically nothing but behaviors and there was a very strange chain of events going on during the years of, let's say, 13 to 16. You know that our son had been torturing me while his dad was away working outside of the home, while I was trying to work at home. You know that the grandfather had witnessed it and all that. So that's kind of where I'm going to pick up, as our son got more aggressive towards me. Although not touching me, his actions and vocalizations were aggressive. Everything he did was aggressive and abusive, even though he wasn't touching me. It was a very strange experience to have someone who's really nonverbal. No professionals considered him verbal and he didn't really have a lot of words. But to actually have someone who is nonverbal verbally abusing you is a very strange sensation.
Speaker 1:The more aggressive he got towards me, I started feeling pain in my left side, in my rib area, and it had gone on for a while and I noticed that it happened every time he would come in and start torturing me. He would sometimes do it, you know, like on a Sunday, when we were trying to relax in the morning. He would start in on it before he was even down the stairs and we were three rooms away and it would happen. Just, it's like a stress response. I guess. I would just get this terrible pain in my side. God, he knows what to do. He knows exactly what he is doing and he is trying to kill me.
Speaker 1:I really believed that he was trying to make me sick or trying to kill me, and he knew exactly how to do it. He was just torturing the hell out of me and I couldn't get a moment's peace and it only happened when I would hear these vocalizations and these aggressions coming out of him. I couldn't eat, I couldn't sit there. I started getting to where I didn't even want him behind me, and that went on for years and it got worse. I got to a point when he was about 17 and 18 where I could not have him behind me because I really believed that he - I would not put it past him to grab a knife and come up behind me and stab me in the neck because he's so conditioned by movies and games to think nothing of that and to think that's normal. I did begin to live in fear of him later, down the road, but during the early and mid-teen years I just thought he was just trying to hurt me, trying to kill me, give me some kind of illness or heart attack or something.
Speaker 1:And my spouse, you know, never got to see this unless it was on a Sunday. But the Sunday and Wednesday behaviors were much different, much more subdued, even though they were really bad. I just could not explain it to him, and by the time he would get home our son would be in bed most of the time. My spouse never saw what I saw and what Tweedledum saw, because he was there for it too. My spouse never saw it.
Speaker 1:You know, Jacob became the sweet, innocent, cuddly little boy every time that I needed him to prove what he was doing. You know, it was so strange and just Jekyll and Hyde shit and I couldn't stand it and it got really bad. It really messed with my head. One day, the story was bad, I don't know. I just felt like my spouse didn't understand the gravity of the situation because he never saw, you know, and he, he sat us down one time and started asking our son did you do this and why? And you know all these things which we know he's not really going to answer. But I was surprised at myself when my spouse asked him were you being mean to Shannon doll or whatever it was, and our son was like no, and okay. So he picked, he picked the right, perfect response for his situation, which I normally would be proud of. But I really surprised myself when I was so upset that I actually said he's lying! I mean a grown woman talking to this kid, who's mentally four, you know, and telling his dad well, he's lying. I just felt so strange and childish about it and I didn't mean for it to come out.
Speaker 1:I was so tortured and I really needed my spouse to know what was going on and there was no way to prove it. I'm not much for cell phones and stuff, you know I never thought, well, I should record this. But as soon as you do start recording something, he starts acting different anyway. He's very camera aware and even if it's just audio, he somehow knows. If you just hit voice memo and record and set your phone down, he will know that you're. When he comes in the room he'll know. I don't know how, but he just knows that something's not right. I'm not going to give it to them, I'm not going to act the way I was getting ready to, because they are ready for it and I don't like it.
Speaker 1:So it was a constant battle and I really felt all alone. I felt that my spouse's dad, although he witnessed all of it, I don't think he ever. I didn't feel that he was ever telling my spouse what was going on. It was just me fighting for myself and it was hard because I had my spouse's father constantly bitching about me not feeding him enough or whatever and saying you know how mean I was to him and crying about that. And then I have our son torturing the hell out of me. I was fighting both of them. I was just fighting for my right to run my household and run my business, and I never should have had to feel that way. You know, I just felt terrible.
Speaker 1:One day it got really bad and Tweedledum actually asked if I wanted him to give me some help or advice or something like that. I was standing in the doorway of the kitchen, tweedledum was standing in the other doorway of the kitchen and watching Jacob torture me, and just this has been going on for two hours already. And he was just standing there getting ready to go smoke cigarette outside and he was watching all of this happen while he was getting his coat on, and I looked at him just to acknowledge his presence there. And Jacob ran upstairs and Tweedledum kind of whispered to me. He first asked if he could give me some advice and I was just okay, sure what? And he suggested to beat the boy with a belt. I know that that's how he and his wife raised my spouse and his brother, and I know a lot of people from my generation were raised with belt as punishment. I, however, was not. I did get spanks, but I never had a whip or a belt or anything like that in my family.
Speaker 1:And it doesn't really matter, because the way that I felt about it, which I told Tweedledum, I said you know, I just don't feel right about hitting him in any capacity because I feel like belting him or hitting him in any way. To me, hitting a kid as disabled as Jacob is like beating a senior citizen and I don't think that it's okay. I don't feel right about it. I don't think he would understand it and I know that he likes spankings. That's always been a game, a fun thing. You know how the pain tolerance is, so high. Anyway, I just didn't think that that was a good idea, I didn't think it would work and I just didn't. I don't know, man, it just hurt my heart and soul to even think about belting him. I don't care how much he tortures me, he's still disabled, he is I. He doesn't understand life the way we do and I just don't want to bring that into his life. And I told him, I said no, the only you have to talk to his dad about belting him. I don't agree with it. I think it's like belting a senior citizen and I won't do it, I won't condone it, but you should talk to his dad about that. You guys need to work that out, because, I mean, I am well aware that he's not actually my child, so I'm not going to get involved in that at all, but I'm going to say personally no, that's not a good idea. That was where we left that.
Speaker 1:Shortly after that, he offered to help me and I don't remember, honestly, if it was the same night or another night within a few days of that. But he said you want me to help you out, and I mean, this is from a man who does absolutely nothing. He could drive right by an accident and not even call 911. So when you know that level of non-action exists within a person, and then you find that person offering to help you, you know your situation is bad. Right, it had been going on for a couple years already anyway. So he offered to help me one night when things were really, really out of hand. I was ready to pull my hair out, it was bad, I couldn't handle him, I couldn't do anything, and I said, yeah, okay, just don't hit him. You know just what are you going to do. He goes, I'm just going to calm him down, I'm just, you know, I just want to talk to him and tell him to leave you alone. I'm like, okay, yeah, thank you.
Speaker 1:And at this point I was doubled over, my knees were buckling and I couldn't support myself and I couldn't work. He had ruined my evening for work. I couldn't concentrate on anything. I had been dealing with his abuse for hours. So I accepted the help. I don't recommend it. I mean, this man had been in our home for years. By this point, everywhere we lived, he spent a lot of time. You would think that someone who spends so much time with you would understand something about how you run your household or how you treat your son, or something. You know rules, a way to live, anything I don't know. I guess I was just so desperate I didn't even think of what could go wrong. You know, I just needed help and no one was there except him and he offered and I accepted.
Speaker 1:I ended up calling my spouse while he was on the road and bawling over the phone. I felt so guilty and helpless because the help that I received was verbal abuse and I've always taught my kid not to tolerate people talking to him the way this man talked to him, and I don't talk to him that way, and up until that point I hadn't anyway. I mean, things got really bad when he became an adult and I can't say that I was always a saint, but during those years that I'm talking about now, I had never spoken to him. The way that he was yelled at by his grandfather that night and all I heard was expletives. All I heard was I don't, I blocked it out. I think I have a tendency to do that, but I remember how he used to talk to his other grandson, the one that we took into our home for a while. We wanted to go rescue him and this is why it's exactly.
Speaker 1:What happened to him is what happened to my son, and I was still doubled over and on my knees. I could not intervene and I don't want to intervene while he's dishing it out like that to him, because that's going to be their dynamic. And I don't want to intervene while he's dishing it out like that to him, because that's going to be their dynamic. I don't want to intervene and say you know, give my son the idea that papa is right or wrong. That's going to be their dynamic. They are going to have to. I can't you know, unless you're actually hurting my child, I'm not going to intervene with that, because I have a different way of dealing with my son than my spouse has, you know, and everyone is going to have their own way of getting through to him. So I didn't want to thwart that at all.
Speaker 1:However, it was terrible. It was, you know, you stupid motherfucker, cocksucker, you know, shut the fuck up. And I mean, it was just terrible. It was terrible and it ripped my heart out and I was so disappointed in myself for allowing this to happen. And it was already done. The damage was done.
Speaker 1:You know, I just sat there and cried and I called my spouse, I think while it was still going on. Yeah, it was still going on. I remember I'm like, do you hear that? I don't want to get in the way? And he understood why I didn't want to intervene, but it was so sad, it was so sad, so fucking sad. I felt like such a failure. I mean I can only take so much, but that was the wrong, wrong person to accept help from, but I at least he didn't beat him.
Speaker 1:You know we had already established that, otherwise he would have, I'm sure he would have taken off his belt and beat his ass. I don't know, I feel terrible about that. Still, I don't know. You know, I don't know how to? What does what? How do you decide what someone deserves? How do you decide? You know, I want him to understand the effect that his behavior has on others. But how, how is one to decide what a kid like him actually deserves? After 20 years of telling him to be careful on the stairs or be careful, you know, outside in this area, and he falls and busts his ass, I kind of feel that he deserves that, after 20 years of not listening, one time he needs to fall on his ass and figure it out. Maybe he'll remember and maybe he'll believe us, because he sure the hell doesn't listen, you know. But as far as the torture, I just I don't know what that deserves. I'm kind of an eye for an eye kind of person and I would prefer to mess with him the same way he messes with me, just to help him understand. Like. This is the context. You are familiar with these actions and I'm going to show you what these actions do.
Speaker 1:I don't know, I don't know what I expected, but anyway, the interesting thing was that Jacob was quote unquote good for about a week and a half. After that, his world didn't make sense to him anymore after what happened between him and his grandfather, and he didn't know how to process. It is what we think. He was really quiet and aware and just kind of watching things and being polite, and he didn't really know his place in the world anymore, because, all of a sudden, he wasn't the baby, he wasn't precious, he was treated just like everybody else. You know what I mean, and it kind of scared him is what we think. He just was really off. I mean, it was nice to have that little break where he was considerate, and I think it wasn't necessarily to help us, it was to, you know, help himself figure out what the hell's going on. Why did I get yelled at like that? Why am I not? You know, I don't know.
Speaker 1:We tried to reason with him for years. We tried and tried and tried, and this is what happened, and it changed him for almost a full two weeks. Shortly after that, though, weird stuff started happening, like he started eating chicken bones. I went to clear his plate and he didn't have any bones and I'm like where's the bones? And he couldn't say anything, but he indicated that he ate them. He just he's such an aggressive eater and drinker and he's he lives in fast forward all the time, even back then, and he fast forwarded himself into eating the entire piece of chicken, including the bones. There was nothing left. I was terrified, you know.
Speaker 1:He did that twice and both times we had to just yell at him. The only way that things get through to him is if you yell at him and really mean it and we don't like to yell, you know, but we had to yell at him and try to scare him into not eating the bones. Don't eat the bones. You've never eaten the bones, he's 14. He doesn't need me to take the meat off the bone. Just eat it and don't eat the bones. You've never eaten the bones, he's 14. He doesn't need me to take the meat off the bone. Just eat it and don't eat the bone. He knows this.
Speaker 1:This is not a new process for him, you know, but he started eating chicken bones and he started eating out of the garbage and he started eating out of the sink after the plates were rinsed and whatever was in the sink, he would go over there and he would eat it. And we caught him and that's how we know. He also started taking my fresh filtered water, filling up a big glass and going straight over to the sink and dumping it out, not even drinking it. And he's kind of a neurotic water drinker because, you know, he doesn't know what to do with himself, so he just drinks and drinks and drinks. And then he just skipped the drinking and he just fills it up and dumps it down the drain. And he kept doing that Every single step of the way.
Speaker 1:We had to yell at him, you know, don't eat out of the garbage, don't eat out of the sink. Years later I found out that there's something called PICA, I think, right, P-I-C-A that you should look into if your kid is eating out of the garbage. But he only did it twice and it wasn't like a constant thing. As soon as we caught him doing it, we yelled at him until he stopped, you know. So he did it two or three times and then he didn't do it. But during that same time he was eating garbage out of the sink. Even the scraps that like were rinsed and cut and left in there. For, you know, after dinner cleanup, I mean it was just gross. What are you doing? Ugh. So all of that was going on.
Speaker 1:And then he starts talking like he's in a video game and like moving like he's in a video game, and it was getting really creepy. We didn't know what to do. We were just like wide-eyed staring at each other like what the hell is going on with this boy? He sounds and looks like he thinks he's in a video game. It got worse. He used to act like he thought he was in a video game, you know, jumping and then trying to look. Jump on my head. He would just look at the top of my head. But now I mean, it was just. It was worse.
Speaker 1:We got really freaked out and we decided no more video games, no more movies, no more YouTube, nothing. We are going on a camping detox. We're going to go camping and we're going to detox from electronics. We had a little site set up where I told you that everything went down with the family and the gluten and all that. We went back there and we went back there for a week. Now, it was on our property so we could go home anytime. We went home to go to the bathroom and clean him up, give him a bath and all that, but we spent an entire week in the wilderness, no electronics at all. It seemed to help.
Speaker 1:He was really pissed off. He was still hating everything. All the food that I made, he didn't want to eat it. He would just throw a fit and it was good food. He loved it. I would make the same stuff at home and he would eat it. But all of a sudden now he just no, I don't want it, just pissed off about everything. And we just had to deal with it. We were trying to teach him about the birds and you know, just get him to focus on things farther than two feet from his face and no screen time at all. And we took it really seriously. And then we took a few days off and we went back out for another week After that.
Speaker 1:We did not allow him to have electronics at all. You know, if he went to his therapy and stuff, whatever they needed to do, is fine, but he wasn't going to school and all of that and he was just at home all the time, unless he went to therapy, and we just no. No more video games, no more iPad, no more YouTube. I would let him watch little kind of educational cartoons on the big TV. But when they were over, they were over. You know it was like a 20 minute thing and that's it and you can like it or not like it, but that's what you get to do. It did break him temporarily of talking and acting like he was in a video game. It really freaked us out and it scared us straight.
Speaker 1:We had heard about all the stuff you know about too much energy and electricity being in the house or in the room where the autistic child is sleeping and you should shut off all electricity to the child's room while they're asleep so that they don't get interrupted and all that jazz. And you know that's kind of impossible. You know he gets hot. You got to have power in the room so we just started making sure nothing else was plugged in but what needed to be plugged in for air circulation. But we did try. We tried to eliminate the toxic load of energy from his area and we detoxed him from electronics. It seemed to help a little bit, but he was still an asshole, to be honest.
Speaker 1:Later, after all of that, he starts even more stuff. So one day we wake up, step out of our bedroom and the house smells like soap, very fragrant. I'm like. What is this? Because we had cut out all toxic ingredients from our lives. We didn't have any toxic household cleaners, nothing, laundry dishes, all that kind of stuff. I am suffering from toxic overload so I had to get rid of all of that.
Speaker 1:So I couldn't figure out why it smelled so damn fragrant upstairs in the hallway of bedrooms and went over to check on Jacob's bathroom and found that his sink was full. He had stuffed an entire hard stick of deodorant. He got it out of the container and stuffed it down the drain and filled the sink up with water. It was completely gone, except for a little bit, and it was way, way down in there. You know, if you put on enough degree deodorant it's going to foam up under your arms and look like soap, and that's what happened in the actual sink. There's just big, big foamy suds on top of all this water. The water's flowing out onto the floor.
Speaker 1:It was a disaster and nobody said anything. The grandfather wasn't there at the time, but Tweedledee was the uncle. He was in the same hallway. Our hallway was like a U-shape and we were on one side and they were on the other. Never heard anything about it. Nobody said anything right, and that would just be. Either Jacob or Tweedledee could have given us some kind of indication that something was wrong. But that's how we got to wake up one day and from there it just got worse. He's stuffing deodorant and now he's stuffing bars of soap down the drain. He's emptying any kind of liquid shower soap all over the place and he's now he's flushing toys. We had to remove the toilet several times to fix it because he kept flushing hard toys down the toilet. And we wake up early Like when are you doing this? You know he was nowhere to be found around the scene of the crime and it just didn't make any sense. He was, you know, nowhere near the scene of the crime. Anytime we found him, and it was just it was. Oh man, it was so aggravating.
Speaker 1:One time it was around Christmas again and I had just hung a bunch of really pretty glittery snowflakes and stuff on my chandelier in my foyer and I had just received a guest and we were standing there in the foyer getting the coats and shoes off and stuff my chandelier starts leaking brown water right on top of us, and this had been. You know this was like the seventh or eighth time that this had happened. But this one was really brown water and it just, you know, it's coming right down a light fixture. It scared me and also I was pissed because I had just cleaned the whole house. It was sparkly clean and here comes this brown water just running out of my chandelier. So I run upstairs to find out and there's Jacob at the top of the stairs laughing his ass off, shaking his hands and jumping. I was so pissed off. I went down, you know I had to move out of the way and I went down around the corner to his bathroom and, yep, he had everything overflowing at once, everything. And I hadn't left him alone very long at all, I had been watching him like a hawk. So the whole damn room of liquid is overflowing, falling through my chandelier downstairs. And I was so pissed off I actually grabbed his wrist and it was so weird because, again, touch for him is affection, he loves being touched.
Speaker 1:And when I grabbed his wrist and it was so weird because, again, touch for him is affection, he loves being touched and when I grabbed his wrist, it instantly softened his demeanor. I saw it right on him, but I was already in motion. I didn't stop what I was doing. But while I was in motion I saw that it softened his face. It softened his demeanor and he instantly attached affection and caring and love to me, touching his wrist. But here comes my right hand and I smack the top of his hand so hard I had. The reason I grabbed his wrist is so he would get the full brunt of it and not fall away from my smack on his hand. I wanted to hit him and I hit him in the hand. I never did feel bad about it, but I did see the shock on his face. He thought I was giving him a loving gesture. Well, why the hell would I do that? You're ruining my whole house. No, this is not a hug and a kiss, honey. He knew. He knew that was not a love tap, and that's what I wanted him to know. That's why I steadied his hand first. But I was so mad.
Speaker 1:Another thing he started, like he one day. We're sitting downstairs and we're having a you know, family discussion about whatever's getting ready to happen, and here comes Jacob down the stairs with his entire nightstand table carrying it, the whole thing. He had trashed his room and then picked up his nightstand and walked it down the stairs and he paraded it around the entire house. It down the stairs and he paraded it around the entire house. We're just watching him like okay, we didn't say anything, but I mean it's just weird. I don't know, I have no idea what he was doing, but he was just and he carries it. Really weird because he doesn't understand like body mechanics or anything. So it was just really funny. I don't know why he had it like under his forearms and his wrists were super hyper, bent over carrying it from underneath the top of it. It was just, he doesn't know how to do stuff, so it was just really funny. I still don't know why he did that, but you know, just weird stuff.
Speaker 1:All of this keeps going on and going on and I actually think that these are the events that led up to him beating his head on stuff. Yes, actually I remember now because, like I said, it was winter when he did that flooding of the bathroom really badly and it was also winter when he began smashing his head on the snow and the ice and eventually the snow that's right on top of the sidewalk and you know emergency rooms constantly and all that. So sidewalk, and you know emergency rooms constantly and all that. So he starts, you know, banging his head on icebergs outside. And finally, during our freakout, we finally learn from Tweedledee, because Tweedledee had come and he lived in the woods on our property for, I think, over a year, but when the weather got too harsh, he moved into the house and there was a bedroom that he and his brother shared when they were there. So he was in that bedroom because it was the dead of winter and it was very cold and he had been there for months already. This was probably February when all of this is going on and he finally says something. Months and months and months.
Speaker 1:And we were spinning our wheels trying to figure it out. You know, doctors and constantly what is going on? I don't know. I don't understand what's going on. I'm watching him like a hawk and when, as soon as I blink, everything's destroyed. I don't know what's going on. So finally, tweedledee tells us that Jacob hasn't been sleeping for months. Tweedledee tells us that Jacob hasn't been sleeping for months.
Speaker 1:I was so pissed. I was like what, how long has this been going on? And now my spouse is grilling him about it and he's like oh yeah, I can hear him all the time. Even when Tweedledum was there. He had left and you know he had been gone for a while, and so Tweedledee was the only one there. Even when both of them were there, it comes out. Oh yeah, even when my brother was here, we could hear him flipping the light on and off, on and off, on and off all night. I'm like all night. I thought that was just in the morning, oh no, it was all the time and it's all the time now. I didn't get any sleep. He's up at 2 30 in the morning. Every time I get up to go pee I gotta ask him to get out of the bathroom and then when I go back to go to bed, he's in his room flipping the light switch on and off, on and off, on and off. I can hear everything that he does, and he's been doing this for months.
Speaker 1:We were like didn't you ever think to tell us, don't you think that's a problem, that he is not sleeping at night and he's acting like a psycho during the day? You didn't think that we needed that information. I was so pissed Like what? You're in my house, you're using my heat, you're using my food, my water, dude, what the fuck? You can't help me out. Why is it so hard for these people to help? All you have to do is say I have witnessed this and I don't think you're aware. I think it would help you with what you're trying to figure out.
Speaker 1:Here's some information. I'm not asking you to step in and discipline my kid. I'm not asking you to go tell him to go to sleep. I'm not asking you to deal with him at all. I'm asking you to report what you see and hear, and I shouldn't have to ask. This should just be a thing. You see me being tortured. You see him hurting himself. You see him destroying the house and you see something that I don't see, which is that he's not sleeping. I am sleeping because I'm exhausted, so I don't know. I didn't have any idea.
Speaker 1:Neither did my spouse, because when we would go to bed, he was silent and he was asleep as far as we could tell. We didn't go in there because we didn't want to wake him up. You know, ugh, I mean months and months of hell. No more naps during the day, because I used to make him take a nap. It used to be a nice thing, and then it was like a necessary like. I need you to go the fuck to bed, leave me alone, you know. So I would make sure he would get a nice big lunch and go to sleep in the daytime. Well, no more naps. So that really screwed up a lot more stuff, because now he's bitchy during the day even more and I had to get him some melatonin.
Speaker 1:We still weren't on any meds, couldn't even really get a doctor, as I mentioned before. We kept seeing a nurse practitioner who kept saying the doctor was out or the doctor was sick or whatever. We couldn't really get any good care. So we were just, you know, doing what we could. I didn't have any cannabis and it wasn't legal yet and all that stuff. So I was just starting out with melatonin and no naps during the day.
Speaker 1:Shortly after that, the state program finally got fully funded and we started getting things that we desperately needed. So the first thing I asked for after talking to the lady that runs the therapy, the nonprofit there I talked to her and she said you should ask for a video baby monitor. Now, remember, I've never had kids, I've never had babies, I've never I've nannied, but I've never had any of the baby stuff. Okay, and I didn't have any idea that this was a thing. So we ended up getting a free video baby monitor to put in his room and boy oh boy was that eye-opening. I cannot wait. Next episode, I will tell you what we saw and I'm going to post the videos with it on my Facebook and social media, just so you can see this, in case you ever wonder and you don't have a video baby monitor.
Speaker 1:I'm actually out of time. I can hear him freaking out running around right now and his dad is home, but it's not a one-person job. I want to tell you real quick. The past two to four weeks actually have actually the past six weeks have been really absolute hell with his behaviors. I have not been very impressed with anything, but just the other day he came down here to get me and he was in a big hurry and he looked happier than I have seen him in a while.
Speaker 1:He has a way of saying grandpa and grandma without the P or the M, so it's like growl, growl is coming, growl is coming. And I'm like what, what are you saying? Growl is coming. So now he pinches out his lip. When I say what he does that still, and now he'll pinch his lip. He's managed to adapt to now, just looking stupid and still saying the words that you know, still not being able to be understood. He says girl's coming, girl's coming. I'm like what he says come here, come here, I will show you the best that he could. And so I said, okay, I start to follow him. He goes. I'm so excited, I'm so excited and I got up there and I'm like what is it? There's no one in the house, right, and he's like grandpa's talking to grandma, like what he says outside. I'm like, oh. So I look outside and the grandmother is parked in the driveway with someone in the passenger seat and the grandfather is standing in the driveway talking to her through the window of the van. And Jacob is excited and he kept saying grandma's coming, grandma's coming, grandpa is talking to Grandma. That's what he was saying.
Speaker 1:Kept spying because I wanted to make sure it wasn't one of the other two kids in the van with her, because they're both coming around lately in this town. It wasn't, it was the woman's sister. So I felt safe about that. But it was very sad because, as much as she has neglected him, when he sees her he thinks she's coming in, he thinks it's exciting and I'm believing that he thinks she's there to see him. And then she pulled away. They saw us looking through the window. They didn't wave, they didn't do anything, they drove away.
Speaker 1:The next day Jacob was being crazy again and he ran by me out of his room. I was in the hall and he rushed by me and I noticed that his arm was discolored. I was like whoa, whoa, whoa, and you know we were both trying to rein him in at the time. He was being psycho. So his dad was downstairs, I was upstairs and we were kind of cattle ranching him, I guess. So I said whoa, whoa, whoa, something's wrong with his arm. His arm's discolored, let's look at it. So my spouse grabs his arm. He's like what is that? And I got to look at it and the place where it was, and that's exactly where the other goose egg and bruise was when I saw it. And then the next day I saw him bite his arm and so he was like did you hurt your arm? He's like yes, and he's like where? What happened, you know? And of course he's just going to stare at you.
Speaker 1:Once that little conversation was over and Jacob's back was to me, his dad was still talking to him and I motioned to my spouse with my own arm and my own teeth that that was a bite. And he was like, oh no, I don't think so. I'm like no, I'm telling you it's a bite. I'm pretty sure that's a bite. Look at where it's at. So he asked him he's freaking out enough that we couldn't control him. He was stripping all his clothes off, stomping around, hulk voicing, and then he goes and bites his arm again. And I was like hey, hey, hey, no, no, no, I didn't want to freak out like that, but I don't know, it just came out.
Speaker 1:I try not to give his negative behaviors that loud negative attention, because I'm pretty sure that's what he wants. That's what he wants, that's what professionals have told me and I kind of believe it. So I really try not to react like that. But I just couldn't help it because I don't want him biting himself. It's horrific to see. I felt dumb and disappointed in myself for reacting that way and not taking a breath first and trying to, you know, figure out a different way to react. But it did get his dad's attention and then he got in trouble for trying to bite himself.
Speaker 1:But I need to look through my podcast notes and figure out whether the first biting episode was anywhere around a time when she was here, because I kind of feel like it was and I kind of feel like this is what happens now when she comes and ignores him. She just flat out ignored him. She didn't even try to come in and see him. You know why does she have to pull up in sight of my son and get him excited? He's excited. He's saying the best that he can to me. He is excited that she is here, that she is coming. He thinks she's here to see him and she's coming in and she just fucking left just like everyone else does.
Speaker 1:So I don't have a happy little anecdote or anything like that. That is the most communication that we've had in the past two weeks with him and it's just heartbreaking and sad. And I'm pretty sure that, even though I've asked him are you okay, are you mad? And I you know I try my best when it's just me and him upstairs and I'm cooking and I, hey, are you okay? Did it make you happy, sad or mad about grandma being outside? You know, I'm just, I'm trying.
Speaker 1:I don't want to put words in his mouth and just make him say yes, I'm trying to help him pick something and I just want to know, so that I know, so that I can say, hey, you are doing this to my child. I want you to stop. You know, I'm just trying to make a connection, or have him help me make a connection, and just tell me, why are you biting yourself? What brought this on? He doesn't just bite himself every day, and the stuff that he does do every day is just every day. As soon as he gets up, he starts it.
Speaker 1:But I hate not knowing. I hate that he can't say it, because I can't help him. If he can't say it, I don't have any. I just come off as a crazy parent, and my spouse does too. If we just, you know, equate it, well, hey, you know you were here and then he did this, you know, I mean, I need man, I need some proof, I need something. I wish that he could just say it. You know he wasn't. Sometimes he'll say I'm sad, or whatever. And he was. He was sad, he bawled, for I think it might've been that morning. He might've sobbed all over his dad for like 20 minutes and I just, man, I swear to God it's because of her, and I.
Speaker 1:Just how do you get someone to respect your kid when they're supposed to love him unconditionally and instead all they do is trigger him and not even acknowledge him, like he doesn't even deserve high? It's just so sad. We really we need more. He deserves more, we deserve more. It's just so much and there's nothing positive about it. You know, we need to create something where we can just give him access to things that he needs, access to therapies and different activities, and, you know, just let him explore life a little bit in a safe environment and allow us a safe environment to man to figure out how to get some respite, you know? I mean, how can we be expected to continue on like this forever, can you? What are we going to do? I'm getting ready to record my presentation for my little blueprint that I've created here and I'm going to probably post it as a podcast episode as well. You won't get the visuals, but I'm just going to try everything I can to get this out there, because I think it's a little bit of a start to an answer for what I was just asking.
Speaker 1:Oh, wait, wait, yes, I do have something good. I just got a Palo Santo stick recently. It's kind of like a sage smudge stick, but it's Palo Santo and I decided to smudge the house with it just to clear it of energies and stuff. So I smudged myself first, then I smudged my spouse and then I did Jacob and Jacob watched me do his dad. So I had him stand there and he loves to put his arms out like we used to do when we were kids. You have to stick your arms out to get bug spray all over you. He loves that position.
Speaker 1:And then he heard what I said and I swirled the smoking stick around him. And so I'm swirling the stick around his top of his head and his eyes closed and I said something like I cleanse you of any negative energies. And you know, and I did around his heart and I said I cleanse your heart space of any negative and stagnant energies. And I did that all around all of his limbs and he just loved that. When I got to his heart and belly area he just it wasn't even looking at me, he just totally relaxed and threw his head back and took a big deep breath and he goes ah. So I thought that was really cool.
Speaker 1:But we do feel that the energy in our house is a little bit lighter now and I had noticed that he always throws his head over his right shoulder and looks to the back of the room, to this one particular corner of the house, and he's been doing it for years in this house. So I cleansed all the corners and invited love, light and positive energy to fill every corner of the house. I did that all the way through. I doubled down on his bedroom and over his bed, all around underneath his bed. You know, I just did everything.
Speaker 1:We left the house and came back and we really feel that it's a little bit lighter in here, just the energy alone. And I haven't noticed him throwing his head back over to that corner. He's done it, but not with the intensity and it looks like he's just not even interested in the corner anymore. He doesn't hold the gaze nearly as long. So I don't know, I don't know, but that's about the coolest story I have for this past couple of weeks, so I hope you enjoyed it. You hang in there, you're a superhero.