Ep. 13: Down in the Dumps

Parenting Severe Autism mom & podcast host Shannon Chamberlin shares a bit of a great idea before detailing her feelings of defeat, devastation, and weakness, followed by a sweet story of her son's reaction to all of this.

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Transcript

Shannon Chamberlin  0:18  
Hello, and welcome to The Parenting Severe Autism podcast. I am your host, Shannon Chamberlin, I'm so happy that you're here with me today.

Shannon Chamberlin  0:25  
 I'm going to do my best to keep my voice from cracking and keep it from being very obvious audibly if I cry. And I know that if any of that does happen, you completely understand because you live this lifestyle as well, and you know it just comes with the territory sometimes. 

Shannon Chamberlin  0:42  
We are healthy, and safe, and together as a family. That has been my mantra for the past couple of weeks. It's the only thing that I have to hang on to right now, because I feel that all of my big ideas and dreams and hopes and everything are dying right in front of me, and it's very difficult for me to deal with. I had this great idea several months ago, that prompted me to start planning to build a nonprofit organization for families like ours. That already sounds cool, right? I have this wonderful idea. You know how people like you and me are always wishing that we had a community of other people like you and me, right? Families like ours only in our community where there are no judgments, there are no weird expectations, and all of this stuff that comes with regular people in the regular world, right? And we just long for community with people like us, exactly like us in the severe autism world, not just autism and not on the spectrum and definitely not neurotypical but families dealing with the problems that we deal with every day, that kind of community. Hey, I had a great idea. I've got the business plans all made up. It's actually, these days, the business plan that you might have heard about years and years ago is much smaller, and it's actually called a lean canvas.  I've got two lean canvases made up, and I could stand to make another three or four because a community like the one that we are thinking of has many different aspects, many different problems that are being addressed, you know, within the community, and many benefits to all of the different aspects of it, you know, so I could stand to make a few more of these lean canvas. But I've also got two commercials planned out that I want to make, and I need to work on a PowerPoint presentation, that's really not my strong suit, but I am a creative problem solver. If I had to say anything to anyone in the world about myself for a job or something, I would say that that's my strong suit. That's probably why most of the therapists have all told me that there's nothing they can do for us, because I've already thought of everything. And that's probably why people only come to me with their problems if they actually want a solution. Because that's all I ever do is try to think of solutions. And you have to think outside the box, you have to be creative with a lot of life's problems to actually come up with a working solution, right? So I have this great idea for our community, it's perfect, and I thought hey, let's start a nonprofit organization and get this ball rolling. So I got I really got excited about that, my spouse did too. And then you know further thoughts about it led me to realize that I really need to put together a good strong board of people for this nonprofit organization, I need financial planners, because I need a financial planning aspect of the community for community members, you know, so I need financial planners, and I need health care planners and I just - I need a specific panel of professionals, well educated professionals to be on this board. And that, I realized is going to take some time to do the networking and the planning and the reaching out and the sales of the whole thing you know? So I thought, Okay, I'm willing to invest the time, that's fine. I'm willing to invest the time on that. But in the meantime, I feel that my family could use the benefits of this idea Now, instead of later down the road. I need this for me, Now. I need this for my kid Now. So maybe I can use my existing LLC and get a small business loan and purchase one of these properties and get the ball rolling on a small scale and maybe that would be the way to go. So I start barking up that tree and I learned that that's probably about three years out minimum for my LLC to be able to qualify for that property purchase. And it's interesting because if I were to just seek out a property for my family and our needs as far as my son's needs, being a young adult and aging and then our needs, having to take care of him and also aging, but being active and having specific things that we need to have a good quality of life - If I were to purchase a property, single home property just for that it could be around $1 million in the market I'm in right now. And if I were to purchase an existing property with many dwellings and plenty of room for expansion - an existing community, basically, it would cost about the same. Just a little bit more, I mean, half a million more, you know? So why not do something on a larger scale and do good for an entire group of people instead of just ourselves? That's what I'm going for. I know what we need. And I know that we need it now. So I wanted to, you know, do this LLC thing, but that's not going to happen for several years, because my LLC has to meet certain criteria, and I, as an individual have to meet certain criteria. And it's just, it's a long way off. And you guys, that news got me really discouraged because I feel that I've, I've run out of creative thoughts. I don't, I don't have any more. I have done all of these years. I've just tried and tried and tried and tried. And I've, you know, put ideas out there and put ideas to work. And yes, most of it was building a business and dealing with my kid on my own with my spouse, you know, but I'm trying to do something on a large scale, but also to benefit my family, of course, and I - you know, I'm just out - I'm out of ideas. 

Shannon Chamberlin  6:15  
We came from running our own business, it was an award winning sales business in our region of like six states, we were doing great. We had a four bedroom, two and a half bath, two living room, two fireplace home, and we were leasing the property that it was on, which was 50 acres - five, zero - 50 acres of woods and hiking trails, ATV trails, there was hunting and fishing, and we could go canoeing and have lots of gardens. And it was a dream. So when I was done working, I had to work from home, you may remember that from a couple of my other episodes, when I was done, I could just step outside, and I'm instantly on vacation. And I thought that was great for all of us. Anytime we had some time to breathe, we could go outside and be on vacation. And it was great. And our business started to flounder because the landscape of sales actually started to change because of the developments on the internet. And I also was not able to counter the problems as well as I used to. And I thought that it was just because people were getting more resistant. But as I look back, I start to think that maybe it was because my son was torturing me for years while I was working. And I think it maybe started to get to me, you know? I don't want to go into the details right now, but it was very hard to concentrate, it was very hard to get any work done. And my work was business to business and business to person setting appointments and making contacts and you know, doing things like that constantly on the phone constantly talking to people. And I think I just started to lose my effectiveness because he was always torturing me. But whatever it was, we ended up just - we just had to close our business before we lost everything. While we were there in that big great house with all that great property, my spouse's family would come to "visit", and they would never leave. And as you know, when you have a certain family dynamic with severe autism, any thing new and prolonged causes strife. And this caused a lot of problems for our small family unit when we would have these relatives come and never leave. And not only did it interrupt my son's normal pace of life, it also really stressed me out because I had extra people on the property, extra people in the house eating three times more than I've ever seen them eat before of the food that I bought - organic, gluten free, expensive food that's supposed to last me for two or three days with leftovers and creative snacks and lunches and stuff. And just they would come and they would just eat and eat and eat and never stop. And then if I didn't offer them food, they would cry to my spouse when he got home from work. Oh, she's not being nice to me. And that was stressful. So I had all of that. But I had that great property. And I had that great house. And yes, I could have used more. I mean, the house, we were renting it and it was not...they didn't take care of it very well. It was a great house, but there were things about it, you know, that could have been better, and we would have outgrown it at some point. But the recreational lifestyle was what really kept our family together as far as I guess, mentally together, you know? So we had to close our business and we had to move away from there and we had to move in with the inlaws. The relatives. We're not married but I call them the inlaws. So the same relatives that were living off of us, we now have to move in with them. And when we made the move we were Given the choice of Do you want the upstairs main part of the house? Or do you want the downstairs partially finished basement? At the time, my spouse's mom and dad lived in the main part of the house and the mom was always sick - for all these years, she's just sick all the time. You know, she's always running to the bathroom for one end or the other. And we thought, Oh, well, her room is right next to the bathroom, let's just take the basement out of courtesy, because we don't want her running up and down the stairs in the middle of the night, you know, to get sick. So let's just take the basement and we'll put our son upstairs in one of the bedrooms. And that's how it's been. But we thought that we were going to just come here, regroup, get the another sales business going on, and get in and get out, you know? Get our money saved up and move on and get the house that we need and the land that we need, and just have a great life. That was our plan. 

Shannon Chamberlin  7:07  
And the autism just got worse and worse and worse. And so as I mentioned in my other episodes, that's not how it worked out, I no longer stay home and take care of that side of things, my spouse no longer goes out to do the majority of the breadwinning it's completely reversed. And he's the one with the Mad sales skills. He's the one that can change our lives in a day just by going out and doing a sales job, you know? But now everything's different, we have managed to save only a few 1000 A year, and man, we have been here going on six years!  The mom who we gave the courtes y of staying upstairs so - you know... she has moved out. We have been - we're a family of three plus our dog and we're completely split up because our son lives upstairs, the three of us leftover live in the basement, there is no way for us to hang out together, there's no way for us to - the kitchen is upstairs, the bathroom is upstairs, I have nothing for myself, you know what I mean? And it's just - it's really getting hard for me to deal with. This is more than twice as long as we thought we would be here and nothing has changed except that we now have two old men living upstairs, they live like bachelors. They're the ones that actually could probably do with a smaller space. And then we have a family of three plus a dog who are completely split up living on different levels of the house and not able to function as a family unit. It's completely backwards. And it's very hard to deal with. It's hard to take care of yourself, it's hard to take care of the kid, it's hard to keep track of the kid, you know, I mean, he - his anxiety is through the roof. He's up and down the stairs all day and all night just trying to get a line on us, you know. And we're just sitting here on this tiny little couch and watching this tiny little TV in this tiny little room. It's just so hard. 

Shannon Chamberlin  12:20  
And I know that some of you are going through the same thing pretty much. And I know that some of you are even single parents, and you're dealing with things like this, and you have no support. And you know, even though we live with family, they don't help us. We have no support for our needs. We don't get respite, we don't get breaks, you know. And now I feel like we're never, we're never going to change. This is never going to change for us. All of my dreams and hopes are deflated. And I don't know what else to do. I know I need a break, but so does my spouse. You know, we're getting married in May in just a few months. We're getting married in May of 2023. And that's it. If we want to take a break, vacation, we have to take - we're gonna have to take separate vacations. How does that work? A separate honeymoon, right? It's just sad. 

Shannon Chamberlin  13:43  
My son doesn't get therapy because the therapists want to come to the house. There is a therapy place... Okay, I want I just want to say this. And I want to say this because when the transcript comes out, these names will be mentioned and I want it out there. My son was kicked out of East Peoria Community High School in East Peoria, Illinois in 2017. And they have failed miserably. He was he was 17 at that time, and he is allowed to go to school until he's 22. And they are supposed to find alternatives for us and they have failed miserably. They haven't given us anything. Nothing. The Autism school says he's too autistic and they don't have room for him. They have failed us miserably. My son has received nothing in place of this so-called education they would have given him over there and all we really need him to have is therapy but the therapists want to come out to the house and we are not set up for that. My dog is barking. We are not set up for that because my spouse's dad lives in his recliner in the living room and the house is not that big. So the therapists would be coming in and trying to work with my son. I have seen my son go through therapy at our house before. It is not Quiet and it's kind of all over the place, he gets upset, he gets happy - either way, it's very loud. And his grandfather loves to sit and lay in his recliner and watch TV on the highest volume. And it's just impossible for my son to receive therapy in this house. And we need him to receive therapy. There is a therapy organization called Bethesda who actually denied us because they were trying to get me to jump through their little hoops to get therapy for him during a time when the child was physically beating me and eloping all the time. And they wanted me to get on their little zoom calls and live video this video that and fill this out, and you know, get back to them on that, while we're dealing with this, you know? The kid tried to kill me several times. He tried to bite my spine out of my neck, he threw a tablesaw across the garage, he threw guitars and amps and everything, he pulled down my neighbor's refrigerator all over the ground. And he of course, is hurting himself all the time, he can leap the six foot privacy fence in a single bound, we're dealing with all of that. And these people at Bethesda want to deny us because we're not cooperating with them. And I have to figure that it must be a blessing in disguise, because if they don't know what it's like to be us, then what the hell are they doing offering therapy to my kid, right? However, I really wish that he could have some therapy. They were going to do zoom therapy, you know, over the video, which is laughable, but it would have been worth a shot, I guess just to show them that it wouldn't work. But at least it's something. You have to take little steps and get some things done so that you can keep moving forward with new things, you know? You need these professionals to make the assessment of what works and what doesn't. And then they have to be the creative thinkers, and you have to allow them to come up with all the bright ideas. So we were just trying to get that ball rolling. And that was a complete joke, but we are just absolutely exhausted. 

Shannon Chamberlin  17:11  
He's almost 22, and we have to do everything for him. He can toilet by himself, and he can get dressed, but he doesn't have access to his clothes, because that's another nightmare. So we have to give him his clothes every day, he can't be responsible for his own medicine, he can't be responsible for his own food. He refuses to run his own bath, even though I've taught him how. You know - there's just so many things that he relies on us to do for him and so many things that he could do for himself. However, he doesn't receive the therapy necessary to instill that in him. And we, my spouse and I, are not therapists. It's not something that is easy for us to do. And in... it - we have our own lives to live and it's very difficult taking care of a forever toddler along with all of our own needs, and the needs of the person who owns the house that we live in with them. You know, it's just it's so much and I just - I really need to change for all of us. My son needs therapy so that we can function. We can't function without him getting therapy and he can't function. You know, he's - he needs independence from us. He's been denied from every program. And I just feel that this community idea was the last one I had. 

Shannon Chamberlin  18:38  
It has come to my attention that I will never get to do anything that I want to do. ever again. I mean, I know that I have said that I've already accepted that. It's the three of us all the time we're the Three Musketeers, the three amigos, whatever we do, we have to do together. There's another aspect to that, and that is that if we want to go on vacation, yes, it would be the three of us, but it would actually be four of us. And that's because a vacation for us as parents is not a vacation if we don't have someone else to help us with our kid. So what may be a $4,000 vacation becomes an $8,000 vacation and vacations are hard enough to come by. Can you imagine? I mean, we might get two more vacations in our lifetime. When you look at it that way. There's just  - we don't want to be in debt. We're completely out of debt. And we're not going to start racking up credit card bills just so we can take a vacation every six months as is recommended by mental health professionals. When you have a special needs person to take care of you're supposed to have a break like every three to six months, right? We don't get that. The last time we had a vacation was probably it It was seven years ago, the last time we had a vacation. My spouse wants me to take my taxes that I saved and go on this wellness retreat, which sounds great. But it just makes me so sad because I have, I have to go alone. He needs a break too. And I was alone my whole life before I met him. Even when I was in a relationship, I was alone, because I wasn't with the right person. I finally met my soulmate. And he just happens to have a child with severe autism who I've always referred to as my soul child until he started to try to kill me. I don't really feel that way right now... But really, for the most part, I just feel like he is my soul child. But I finally met him, I finally met my soulmate. And all I ever wanted was to meet my soulmate and enjoy our lives together, I wanted to travel and I wanted to experience wonderful things. And I still want to do that. And it's just so obvious to me now that we'll never be able to do that. I've always, I've always done everything alone, you know? I was extremely isolated when I was a kid. My parents sucked. And my, you know, stepdad grounded me to my room for like two years, and I never had contact with people. So I'm very, I'm okay with being by myself, I, I'm fine with being alone with myself, that's not the problem. The problem is that I want to enjoy things in life with the person I enjoy most in life. And I want to share these experiences with the one person that I connect with. And it's painfully clear to me that these experiences will never be shared between the two of us, if we get a break from his lifestyle, it's one at a time because there's no one who can take care of our kid for us and taking him with us does not give us the break that we need. So that's a really hard pill to swallow. And, you know, when you realize that you need a vacation, and you'll never get another one ever, everything starts to suck a little bit more, you know? 

Shannon Chamberlin  18:42  
We're in our mid 40s. And if I have to wait another three to five years before I even begin to develop a community for people like us, I really just don't know, if I'm gonna have the mental energy to deal with it anymore. I'm physically fine. But as you know, when something weird happens, like an outburst, or a meltdown, or a physical attack, or self injurious behavior or anything like that, or rejection from someone out there in the world that you were really hoping would not reject you, it just - it just exhausts you, it takes the wind out of your sails for at least the whole rest of that day, Right? And the more hits you take, the more air you lose, and we've taken so many hits for so long. You know, I just don't know how much more fight I've got in me for this specific purpose.

Shannon Chamberlin  23:08  
 Oh, so we are healthy, and safe. And together as a family. That's all I've got right now. I hope that you have that too. I know I've got a lot of listeners, and I'm so grateful for everyone who listens to this podcast. I would love to know your thoughts on some of these episodes, or any of these episodes. If you hear one of my episodes and you like it, I would love to hear from you. You can drop by my Facebook page, It is Parenting Severe Autism Podcast. That's the name of the Facebook page. And I'll try to put a link to it in my show notes. I have some... Buzzsprout has beefed up my show notes now. So I can put links in there and stuff. So if you want to visit my Buzzsprout page, it's P S A that short for parenting severe autism. So it's psa.buzzsprout.com 

Shannon Chamberlin  24:06  
You can access all of my episodes there and you can find the transcript and the show notes and any links to products and links to my page and a link to my email. But you know, I'd really love to hear from you guys. I know you're struggling out there. I'm not the only one, obviously. Otherwise I wouldn't have any listeners. This life is very hard. And if you have any good news for me, or anything to say at all, I'd really love to hear from you. I would love to read your comments and I will definitely respond to you. So I just wanted to put that out there. I'm really grateful that you listen to my episodes. I hope that some of this information is helpful to somebody out there. This wasn't a very hopeful episode, but there are some good ideas that I've tried to get across to you today. And if you know other people, investors or well-educated people who may be able to join the board that I'm trying to build for the nonprofit organization that I've talked about today, you could direct them to me or tell me about them, and I will pitch it to them. You know, on a day when, I'm feeling stronger.

Shannon Chamberlin  25:13  
I want to tell you really quick, my son knew that I was sad on Saturday night, today is Monday. And in his own way, when I say that, he says this, and he says that - it's not perfect English, you would not understand what he said, I'm sure of it. Nobody else understands, sometimes even you know, if he's talking to me, his dad may not understand it. And if he's talking to his dad, I don't understand him. But you know, it's just that you learn to speak your child's language. And that's what I mean when I say he says this, and he says that. So on Saturday, he knew I was down in the dumps, and I was trying to be strong and not cry and everything. And you know, this has been going on for like a week already, at least anyway, In his own way, he said to me, Shannon Doll is so sad. And he kept kissing my head. And I thought that was really sweet. He is very sympathetic and empathetic and every - everything you know, for not understanding social cues and things like that, and for professionals expecting him not to be attached in any way to anyone, he's really, really impressively in tune with us, and I think others around him. But in his own way, after a lot of kisses on my head and stuff, he said to me, let me see your eyes. And I looked him in his eyes, and he studied my eyes for like 15 seconds. And then in his own way, he said to me, your eyes say, people are stupid. I love that kid! He's so awesome. And he's been very attentive to me ever since I started having this dark cloud above me. I know, it'll get better. Especially if I take this little wellness retreat that I'm thinking about, thanks to my spouse. 

Shannon Chamberlin  26:58  
I just thought I'd share that story with you. Because it is super cute. And this episode is super heavy. I know that you know that this is a part of our lives, and that's why I made it into an episode. I don't want to hide it from you and pretend that I am just some kind of Zen mama out here. And that I have all these great stories and great experiences. Because I don't. I'm no different than you. I - this is a very therapeutic thing to do. And I think that if you have the ability, you should do it too, you should start a podcast or start a YouTube channel. That's where I was going with this in the first place. Several years ago, we got another rejection, which I'll tell you about some other time, it hurt bad, I was really looking forward to an acceptance with this organization for my son, and we got rejected. And I was just devastated. He didn't know any better. But I did. And I was devastated. And I told my spouse that you know, I want to start a YouTube channel and just broadcast this because this is bullshit, and I am so tired of him being rejected from everything that says it's for special needs people or for autistic people, and they meet him and all of a sudden, he's too special, or he's too autistic. I'm putting this on YouTube, and I'm gonna call these people out. Well, the reason I didn't do that is because I cry a lot! 

Shannon Chamberlin  28:21  
And I don't think that someone's gonna want to watch me cry about everything. So I do that in private. And then I share stories with you over a microphone, because I think it's a lot better that way. But hey, if you can get through it. And if you're  -maybe you look good crying, then go ahead do a YouTube channel or you know, do tiktok or do something. You could blog or have a Facebook page - I know that there are trolls out there who will tell you that you're exploiting your child's illness and all that. And you know what, screw those people. This is really therapeutic. And I think that if it strikes your fancy, you should do it too. So I'll try to put a link to how to start a podcast on Buzzsprout. I'm sure you know how to create content on YouTube by now.

Shannon Chamberlin  29:06  
I wanted to share this bit of real time real life with you. I know that you understand where I'm coming from. And I wanted you also to know that behind the scenes, I'm always thinking of you. Even though I haven't met most of you. I'm always thinking of you because we're in the same boat. And it's a big world. But this is a very, very targeted niche that we are dealing with here, with parents and caregivers of severe autism. So I'm always thinking of you. I'm always trying to think of how to build this community to serve everyone and to make everyone feel welcome who is in this boat and to make everyone feel safe and secure. If we just had this community we could eventually all get the respite that we need because we could rely on each other and we could rely on the medical professionals that we choose to put in place and we could rely on the therapists that we choose to put in place in our community. And we could rely on the educators and the life guides that we choose to have in place there. And those people that we as a community install into our community to serve our children will give us the respite that we need desperately. So that's the idea behind what I'm doing. I'm trying to write a book on it too. I'm gonna go ahead with the book, even though I'm completely deflated right now on all the rest of it. I just wanted to put it out there that I'm always thinking of you. And I'm always trying to make something for us and our kids to get through this life together better than we are apart. 

Shannon Chamberlin  30:43  
I know we're all out of time. So thank you so much for listening. You hang in there. You're a superhero.