Parenting Severe Autism
Parenting Severe Autism
The Unseen Struggles of Parenting a Child with Severe Autism
Understanding the daily battles of parenting a child with severe autism takes center stage, emphasizing emotional toll, struggles, and small triumphs. Shannon shares her journey, revealing insights and experiences that resonate deeply with listeners.
• Importance of online therapy solutions for caregivers
• The critical impact of mismanaged medications
• Strategies for finding joy amid daily struggles
If you're interested in learning more about online therapy options and discounts, reach out to Shannon at contactparentingsevereautism@gmail.com or visit her Buzzsprout page for more information.
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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. Please remember to visit PSA short for Parenting Severe Autism psadotbuzzsproutdotcom to get my show notes and transcripts and all the coupon codes and all that stuff, also to buy me a coffee or support this podcast. If you wish, you can also share this with anyone who you think needs to hear it. I appreciate your support.
Speaker 1:I have been getting a lot of requests from people to be featured as guests on my podcast and most people are shut down immediately, but I'm wondering if you guys would be interested in learning more about online therapy for caregivers. I've been talking to one company who actually does provide discounts for podcast listeners, so if you would be interested in learning about options at a discounted rate, just for us to have someone to talk to when we need, please send me an email contactdotparentingsevereautism@gmail. com, or you can visit my Buzzsprout site and send me a fan mail to express your interest.
Speaker 1:I wanted to talk a little bit more about the non-profit autism organization experience that we had before. We were fortunate enough to find that place and get Jacob involved in some of their therapy and other activities. He was just with us all the time. There were no options. We had not found the autism clinic yet and everything was really bleak for me because I was the one at home most of the time and he was always crazy in the morning and crazy when dad was there, but on my own during the hours that I was working it weighed on me significantly more than it did when I was just trying to be in the kitchen and cook. I mean, he just tortured me and I was at my wits end many times.
Speaker 1:I remember that right around the time I got Jacob into therapy at the CP Center, I had been really going through it. I had made numerous trips to the emergency room. I remember it was summer and I was wearing shorts. Jacob had been torturing me for days. I mean, this was nonstop. He never, ever let up on me. The only time he would let up is if he was full, and it didn't last long, and I'm surprised that his dad was able to go to work for as long as he was, because Jacob wouldn't let me work at all. I really had to sneak it in and pretend that I was doing other things or find a way to keep him occupied.
Speaker 1:And I remember just getting out of the truck after getting him home from wherever I had to take him one day and just falling to my knees in our gravel driveway in my shorts and begging him with tears running down my face to please stop, just stop. He tortured me every chance that he got. He even started trying to bolt through parking lots when I would take him out to the store. It only took one time for him to try that and I had to catch him real quick. He almost got hit by like four cars. I mean you just, he doesn't look, he just starts running and man, you know it's so scary. So with that I ended up making him always sit in the back seat of my pickup truck where there's that little third door. He couldn't get out without me helping him because he couldn't reach the passenger front door. So that was the only way for me to keep him safe is tell him stay right there. I'll be over there in a second. And I had to go all the way around the other side of the truck, open the door and before his second foot hit the ground I had to have a hold of his shirt tight. He learned that he couldn't run when I was holding onto his clothes. So he started trying to learn how to wiggle out of his clothes while I was holding him. I mean, that's the kind of life it was for a long time, and he still does this stuff. Whenever we figure out a quick solution to keep him safe or keep us sane or whatever it is, it won't take him long before he figures out how to counter that with a new move. And it's just like damn man, can't you just let us fix this and then go along with it? You know, I don't know who's going to win in this tic-tac-toe, but it's really not safe and it's driving me insane.
Speaker 1:In the house, I didn't have any other option but to put him in timeout, which - I I learned it from -. they They would put him in some kind of a timeout and it would be for like three minutes and then they would add time on. So I started with two minutes. In the hallway, hallway I would put a dining room chair facing the wall, but he would just turn around and look at me and scream instead. So that didn't work. I would try to just ignore him and say I'm adding on another minute and I would have this little egg timer add another minute, and he didn't like knowing that I was adding time. But he also didn't take the time out to begin with, so it just - It It got all the way up to five minutes and I'm like, okay, this isn't working. So my next move was to tell him to face the wall, lean forward, put his head on the wall and look at the floor and stay in timeout for two minutes, and that actually worked. I don't know if maybe he actually liked the feeling of his head pressing on the wall or the feeling of having no sensory input because there was, I would have no noise and he wasn't allowed to look at anything, but it did work. I would still have to add on time a lot of the time. I would have to add on another minute Every once in a while. We would get up to four or five minutes, but we generally kept it between two and three minutes when he cooperated and put his head on the wall and looked at the floor.
Speaker 1:I was married to that because that was the only thing that was working for indoor behavior at that time. Down the road, when we finally got involved in the Caravel Autism Health home therapies, the therapist learned that that's what I do when I complained about them allowing him to act out the way that they were and the way that he was, and they said, well, what do you do? And I showed them. They said, wow, that's actually a really good idea. That is working for you, isn't it? And I said, yeah. And they said, well, that's probably because you're cutting off all sensory stimulation when you do that, and that's exactly what we were going to recommend to you. So, in the middle of all the bullshit, that was a nice thing to hear that I still had enough rational mind to make good decisions when I had to discipline our son.
Speaker 1:Every once in a while I would get through the day with very little incident from Jacob, only to find that when my spouse got home from work, his dad caught him outside in the garage and cried to him about how unfair I was, because when I made my spouse's dinner at three o'clock in the afternoon so he could go to work because he had to drive an hour, I didn't offer, I didn't call Tweedledum into my kitchen to eat the food that I didn't make for him, and then he would complain about when I made Jacob's snack. I mean, Jacob ate every couple hours and I'm supposed to feed this man Jacob's wellness snacks, right? Oh, she made food for Jacob and she didn't give any to me. I want to go home because she's mean. And then my spouse has to come in the house and tell me that his dad said I'm being a bitch because I'm not taking care of his grown ass while I'm taking care of this psycho son that he doesn't help me with. I mean, you know, I just couldn't win and I wanted to kick that motherfucker out so bad because he just, you know... really? That? That's your concern, you really, of all the stuff that's going on, all the torture that I go through on a daily basis, right under your nose, and you're pissed off because I didn't offer you some leftover rice and chicken that belongs to my son? I didn't offer you a special tiny little meal that I special made just for my spouse so he could go to work? Every time I make food, you have to get offered some food or you're going to cry and go home? Go the fuck home. I don't care, man. I mean I don't know how these people can see what I go through on an hourly basis and think that they have any right to add to my burden like that. That is not - you... You can cook for yourself. What the hell are you telling my - You're telling on me for no reason. I'm trying to live my life and if you weren't here I would be doing these same things. I didn't say, hey, come to my house so I can take care of you. But this is what I have to deal with on the side of taking care of this psycho that I'm dealing with. I'm very offended by this man's behavior in my home, watching every day how tortured I am by his grandchild, never stepping in... he did at one point and I'll get to that another time but otherwise never stepping in, just standing there and staring at me and watching from afar. I really resent all of that and I'm glad I won't have to bring it up again.
Speaker 1:While I was taking him to the non-profit autism therapy with the swimming therapy class every week, I was starting to learn more about the kids, as I mentioned in my last episode. So when I go to the therapy place itself, I know all the kids. I understand who they are and what their deals are, and you know how different each one of them is. There was this one boy who was really sweet. He was just cute and just sweet, but he was the runner that caused them to have to lock the door all the time. Well, one day I went in there with Jacob and this little boy was in a kind of a big medical looking seat and he was seat belted in and I tried to look at him and his eyes were so heartbreaking. All I could see in his eyes was that he looked like he wanted to crawl out of his skin. He looked like he couldn't wait to get out of his own body. He looked so uncomfortable and a little bit scared and just - it was a terrible, terrible look that I saw on this kid's face and in his eyes, most importantly, and I thought, oh my gosh, what is going on?
Speaker 1:And then the lady explained in another room a couple minutes later that he had a prescription change initiated by his doctor. He was having a strange reaction to it and it was causing him to run and be a little more self-harmful and destructive. They were just trying to work through it. Well, a week or two later he wasn't there at all and hadn't been there for several days. I found out that not only did the doctor change the prescription. The pharmacist actually screwed up the entire prescription and he compounded it and it was the wrong mix and the wrong dosage. So the dosage was much higher than it was supposed to have been. He got so bad they had to put him in the hospital to detox. There was no other way, and I didn't see him for two or three months. Finally he did make it back and he was doing much better. But that was very scary and that was one of the things that helped us feel more solid in our decision not to get involved in pharmaceuticals until he was more developed.
Speaker 1:I just caution everyone out there, especially if you're having meds compounded specifically for your child. But always, always, check the prescription. I mean, like for me... I have a desiccated thyroid that I have to take. Every once in a while They'll try to give me a different brand and that brand gives me a terrible swollen stomach. I can't use it. It's one ingredient off and I can't use it. So even stuff like that, you've just got to be so careful. It's just so scary when the kid can't talk anyway, you know.
Speaker 1:So Jacob was so bad that we couldn't even eat together at the same table anymore. My spouse and I had to take our food away from the dinner table one night and go sit in a different room because Jacob wouldn't leave us alone. And that actually became the standard and to this day we don't eat with him unless it's a special occasion. Sometimes he'll be nice and sometimes he won't, and we'll have to leave again. You know, it's just sad because I've always believed in family meals and he just wouldn't stop harassing us and throwing fits at the table and not letting us eat and just crying and screaming and you know all this terrible stuff.
Speaker 1:And I learned that that girl that talks with beeping, she actually had a job. I was very impressed. She worked at a cafeteria in the kitchen. I heard that she was doing really well at her job and a few weeks later I found out during swim that she was doing so well at her job that two other people got canned and she took their jobs. So now she has three kitchen positions and she runs that whole show by herself and I was just really impressed and it gave me a little bit of hope because she was not a communicator except with her own language and I just thought you know, hey, you never know what my kid can come up with.
Speaker 1:And then, shortly after that, my spouse and I are talking with the lady that runs the nonprofit and she says yeah, well, you want to get all these therapies in before he turns 16. Because you know, when he's 16, he's not going to develop anymore, he's not going to learn anymore and he won't benefit from any of this anymore. We were floored. We were like what? That girl is over 16 and you know, she seems to be learning just fine. What are you talking about that? My son's just going to go dumb on his 16th birthday? What is that? He's not going to benefit from therapy anymore? Why would they let him stay in school till he's 21, if everyone thinks that their brain stops at 16? That was the weirdest and probably one of the most irresponsible things to say when you're supposed to be some kind of autism whisperer. You know, I just thought, why are you saying this to us? That can't be right. That can't be true, because that means it's almost over. And what? He's a vegetable after that? What do you mean?
Speaker 1:Communication update...
Speaker 1:Jacob now pulls on his bottom lip every time he wants to address me in any way, anytime he has something to say and he knows I'm listening he'll start pulling on his bottom lip, even if he doesn't know what to say. He knows it's getting my attention and I think it's cool because he's showing me that he's trying to talk. So this is our new way of talking we have to look at each other and hold onto our lip, and it's working, though, you know. So that's cute. I definitely didn't expect it to stick the way that it has, but it's only been a week, so we'll see. And I think, to close off this episode, I want to tell you something cute.
Speaker 1:When we - the very first time I remember us actually bonding he was about eight years old we were in our townhouse. He had dumped something on the floor in the kitchen. It wasn't bad, I don't know. I don't think it was messy, but it could have been. But I, you know, I don't care when kids are small and they're learning, and I know that they don't know what's going on. I'm not going to get mad about any of that.
Speaker 1:He had a very fun childhood with me because I just let him do whatever, just so he could experience it and make decisions. You know, I never felt that he was unable to correct his course, so I would just let him do stuff. So he dumped something on the floor and I just was watching and I said, oh, and he's like oh, and he, he's trying to pick it up and I, you know, I don't remember what it is and I don't remember how it was going, but I know that I was very amused watching him and just thinking, wow, this is really hard for him to do. Oh, my goodness, he is not, he's not going to get this, is he? And I would just stand there and watch him for the whole time and he kept looking at me and I kept looking at him with my eyebrows up and smiling, you know, like, go ahead, give it a shot. Finally he made one final move and it didn't work. It actually backfired on him.
Speaker 1:Whatever it was, I wish I could remember, but I remember he looked up at me and I went, Duh! And he goes, Duh? What's funny is that that was really cute, but we still do that to this day and when he does something, or if he sees someone else do something that he recognizes is a little dumb, he'll just look at me and have a very amused look on his face and sound in his voice and his eyes will smile and he'll say DUH. So I know that he understood that entire interaction when he was younger. He must have understood that what he did was like duh really. And he understood my reaction and we've always said that to each other ever since and that's probably one of my fondest memories of us bonding. So I leave you with that. I can't really say what my next episode's about, because there's so much going on right now, but I promise it'll be about parenting severe autism. So I hope you'll come back and download the next one next week. Hang in there, you're a superhero.