SUMMARY KEYWORDS
happy, child, happiness, episode, dad, realized, talk, arrange, parenting, face, unsustainable, servitude, guest, spouse, podcast, severe autism, run, therapy, energy, constant
Shannon Chamberlin
0:17
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.
0:24
If you'd like to view the transcript for this or any other episode, please visit the hosting site, which is p s a short for parenting severe autism psa.buzzsprout.com. There you can find the transcript show notes, recommended products that help our family get through these tough times. You can also find different ways of supporting the show, I think there's a subscription available. Now there's also the buy me a coffee program. And you can see the podcast merch that we've created, including tote bags, and coffee mugs and water bottles and pillows and stuff like that just different ways for you to get some fanfare. If you'd like don't forget about the Facebook page you can like and follow that as well. I've been trying to be more active on that page by posting videos of our family and pictures and some memes and stuff like that. Also some information about mothers with PTSD and how they're using micro dosing to help them through and you know, just some different things that I feel relate to our lifestyle in one way or another. So that is the parenting severe autism podcast Facebook page. And of course, you can always drop me a line at contact dot parenting severe autism@gmail.com.
1:43
So we got married Saturday, May 20. And while we were preparing for the wedding, a couple of weeks ahead of time, I had to send my spouse out to handle some things. And he had to leave our son at home with me. And as you know, this is something that used to happen all the time, but doesn't happen anymore, because of the violence and the running and all of the things that we're afraid of. And all of those things don't happen when dad's home. So I put on a brave face, and I always do - I always am like, yeah, it'll - everything will be fine. Just go, you know, we've got it. And most of the time, it's okay. During this time, I realized that I do understand how to make this child happy. I also realized that his happiness is... in a word... unsustainable. I worry about his happiness. I, of course, understand that my spouse and I don't have the level of happiness that we deserve. But realizing that I actually basically hold this kid's happiness in my hand makes me fearful, for a lot of different reasons.
2:53
As soon as his dad left the first day - this... Okay, so he had to go out on one errand. And that started a snowball effect of four days between me and our son. And it just - I was just depleted of everything I had, and I, you know, barely recovered energy wise, in time to have a good wedding. When my spouse left the house, I started instantly making sure that our son was happy. And in order to do that - and I think he knows, you know, he's not dumb, he knows - he picks up on vibes all the time. And I think that he knows that I, inside I'm on pins and needles, hoping that I can keep him happy enough that I don't lose him. And I think I feel like he is testing me all the time. But basically, the key to his happiness is constant, high energy attention, and it's exhausting. So I think that's why I say it's unsustainable, I can't do it. No one can do it on that level all the time. It's just impossible, but he just insists upon me being his clown and I have to you know, be very high energy and he - I have to let him basically control me and I have to keep a bravehappy face on and I can't ever let my true emotions and feelings show through. Even though I think he knows what those emotions and feelings are.
4:24
In the beginning of course I don't mind being very happy with him and getting him jovial and excited and laughing and using all my silly voices and letting him put his face right in my face and constantly you know tickling the top of my head - that's a new move that he has and I- it's fine you know, and always making me kiss his head and kiss his neck and putting his face right on top of me and... When you're first starting the 'dad's absent' routine, you're okay with that. At least I was you know, but dad was gone for about four hours, I think... three or four hours and it didn't stop. After that he kept on with me for four days, even though I broke character and let him know that I was tired and worn down. He insisted on dragging it on and on and on. And here's the thing, if I don't do what he wants me to do, it all goes downhill immediately. And that's why I had to keep it up the whole time. His dad was gone. I had to talk to him as silly as possible and high energy as possible, and he just doesn't stop. It's just constant. It's like rapid fire bullshit the whole time. You know? And if I don't respond, then we have a problem. So you know, it's Shannondoll, Shannondoll, Shannondoll, Shannondoll, and in between those I have to be like, yes, Jacob. Yes. Jacob. Yes. Jacob. Yes, Jacob. And then he'll be like, I love you. Do you love me? I love you. Do you love me? And in between that, I have to say I love you. Yes, I do. Oh, yes, I love you. Yes, I do... stuff like that - very loud, very high energy, just constant. And then in between that is the Oh, give me hug. Oh, Give me kiss kiss my neck, you know, and all this stuff. And it's fine. You know, but we're on a loop here. It doesn't evolve, it doesn't go anywhere. It's just, it's just a loop of all of those things I just said, and maybe a couple other things thrown in. But you have to keep it constant. And I just I, it's a, it's exhausting. I can't do it. I cannot do it. And I broke character shortly before dad got home. And I knew that I had made a mistake. And I had to hurry up and make up ground. Because when I finally have had enough, if I break character and let it come through, it's like, <sigh> Yes, I love you. And just that - a big sigh or a sideways glance at him, like please leave me alone, or a little testy tone in my voice, he picks up on it, he knows that's my limit. He knows I'm tired. He knows I don't want to do it anymore. And he instantly starts to what I call 'dick out'. So he instantly changes his face. And you can just see it on him like this big dark cloud comes over him. And he's like, oh, there it is. There's the line, you know. And in fact, the line was long before but I finally accidentally let it come through that I was very exhausted from this banter. When I do that I'm instantly at risk of losing him, he will run and you know, he'll he'll throw things he'll destroy everything in his path, he'll slam his head a couple 100 times on his way out the door, he'll scale that privacy fence and he will run and I can't catch him. There's no way. So yeah, I had the tracker on him, of course, because there's always that fear that he's going to run away from me again.
5:45
So that was a long four hours, you know? But then it went on for four whole days. And he just wouldn't let up. And I just wanted to make a quick episode about that. The key to his happiness is letting him be in control of me and letting him have me as his puppet. And if he can be in control of my reactions and how our interactions are going and just constantly get what he's looking for, he'll just keep it going. And he doesn't know when to stop.
8:24
And I think every time we go through this, he loves to push it. I mean, he'll push it right to the edge. And he'll do everything he can to find my breaking point. And he's so much more intelligent than I think people think he may be because he knows what he's doing. I can see it in his eyes. And in his face. He's not dumb. He knows what he's doing. He's testing me and testing me and testing me. Honestly, I'm so tired of it. You know, I - right before I pushed record on this, I was out for a walk with my family. And I realized just by the conversation between me and my spouse, I realized that you know, we're not happy, not not the two of us, not between us as a couple, just as individuals, we're not happy, we're not fulfilled. We're slaves. And we're constantly in servitude to our kid. And I just, I don't know, I had this realization walking down the street because no matter what we're doing, his dad always wishes we could be doing something, you know, I don't know what to say. But I just realized that I don't get to do what makes me happy. He doesn't get to do what makes him happy. It's all just living in servitude. From the time we wake up until the time our child falls asleep. And I just, I don't know, I just realized that we're never going to be happy. We're never going to be fulfilled. We'll never be able to do the things that we want to do. And I think normally I just suck it up and accept it. But when I'm faced with the reality that my spouse right next to me is not content taking a family walk up and down the street for the last time of the day or whatever. And all he wants to do, I wish I could, I wish we could all go fishing, I wish we could go, you know, do something else. And it makes me realize that I'm burying all of my desires. I'm burying all of that, that I know, would make me happy so that I don't have to deal with it. You know, I can only make one person happy. And it has to be my kid until I find other people to make him happy, I guess.
10:29
So obviously, that's not sustainable. It's not realistic. And I am trying, I found out through his insurance lady that there should be some kind of counseling therapy available for him. And I was like, Well, how do you expect that to work? He doesn't really talk, he doesn't have the capacity for a conversation. How do you - How is therapy like that supposed to work out? And she said, there's ways. So we're trying to get him into that. And also, as you know, I mentioned a couple times ago that I'm still waiting to get him into the behavioral therapy, I can't seem to reach anybody. And of course, the ball seems to always be in my court, because those people get paid to do nothing. So I'm hoping that when we get these therapies lined up, maybe we can get to a place where I don't know maybe he can learn to, what self soothe or make himself happier.
11:21
Or, you know, the only way he makes himself happy right now is sneaking into the garage and getting a hold of his dad's YouTube remote and watching YouTube. And you know what happens when he watches too much YouTube. So I have to go hide the remote all the time. And he has no other thing that he likes anymore. And I'm going to talk about that and how that decline came about in another episode. But this is mainly just about my immediate realizations that I know how to keep him happy. I realize it's unsustainable. And it's always at the cost of my own happiness, which I think... you know, we're supposed to sacrifice for our children - for a while. But I don't think that it's supposed to go on forever. But obviously, he's not a regular guy. So there's not a way for him to be an adult, he's always going to be this child. And I guess the we're always going to be sacrificing for him. What worries me is that we're sacrificing him in the long run.
12:22
You can only spend your energy one way and your time, you know, and I'm either keeping him happy and safe, or I'm making moves out in the world to try to arrange something better for him. I don't have what it takes to do all of that. So that's pretty depressing for me and knowing that he's only happy if we're unhappy, it really makes me sad. But that's truly the way we have been feeling for the last nine or 10 years. And I just at this point, there's no end in sight. But I am trying to be optimistic about the possibility of new therapies becoming available for him now because he's an adult. So maybe things change, I don't know. But I'm just going to keep following these leads as best I can and try to get him some help because helping him is helping us and we need help.
13:17
I wanted to see if anyone listening would be interested in another guest. The guest I had for speech was not well received, and I can understand it for sure. So that's why I thought maybe I would pose this question during one of these episodes. I just received an email about four or five days ago, there is a lady who is a mother of nine and mother and grandmother to neurodivergent children on the autism spectrum who has embarked on a mission to create meaningful and inclusive children's books that celebrate diversity and empower non verbal children. She has a book that is a celebration of every nonverbal child's ability to communicate and be understood in their own remarkable ways. It sheds light on the power of art, music and dance as channels for self expression fostering inclusivity and promoting acceptance among children of all abilities. She believes that the book would resonate deeply with my audience because it captures the imagination of young readers but also delivers a profound message of empathy, understanding and celebrating the unique gifts that each child possesses. So this person would like to provide copies or additional information and it looks like she provides it free on Kindle Unlimited and free PDFs to parents with nonverbal children. So I would like to know what you think the only review i i see in the email is from a speech language pathologist. And that doesn't really mean a whole lot to me.
15:14
My first thought was, well, my child never expressed himself with art, music or dance. He expresses himself through yelling, and yelling movie quotes, and scripting and making noises, like baby noises and baby animal noises and stuff. But he has never been interested in the arts, which is a weird thing to say, because I actually have an episode upcoming that I'm talking about getting him into the arts into theater. But the fact is that he doesn't... He's a ham, and that's why but it's not that I think that he ever tried or had an interest in expressing himself in any way. So for me, it's a hard concept to grasp. Because he's never, he's never done that we've never had that experience with him.
16:10
But if you out there think that what I read to you from that email sounds like it would help you, please email me or drop a comment on my Facebook page underneath this episode, where it's posted. And let me know if you would like her to be a guest, and I will arrange that. Just because it doesn't hold any weight with me, that doesn't mean it won't hold some weight with somebody else, you know, our kids are all different. And maybe that's something that would be good for you guys. So I'm willing to explore that for you, if you're interested.
16:47
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If I don't receive any feedback about this, I will not arrange it. Because I didn't have a good experience having a guest before. It was a lot of work, and it didn't really... it didn't get a bad response, it just didn't get even close to the downloads that I thought it would, You know, all of my other episodes without a guest are better received. So I just wanted to put that out there for you. I have another episode coming up in just a few days. This is just kind of a mini episode real quick about happiness. I hope that you will catch my next episode where I am expanding basically on his needs. I'm going to talk a little bit about the effect that his needs have on our lives. And then then I've already got my third my next episode after that ready for you too. So they're just... they're coming at ya!
17:33
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It's Memorial Day weekend when this is being released, and I am thinking of you. I know it's gonna suck. We were just licking our wounds while we were walking the street in the neighborhood today, you know, talking about how everybody else is out doing all the fun stuff. And here we are walking to the end of the road and back again, as we do every day with our son and that is the extent of our adventure. You hang in there. You're a superhero