The Fight for Inclusion in a World of Exclusion Severe Autism

Moving to Illinois with our severely autistic son brought unexpected challenges, including his increasingly violent behavior and our struggle to find appropriate medical and community support. Rejection has become an abnormally normal occurrence, but this is where it started.
• Our son developed concerning rage behaviors in public
• Housing search
• Parent support group silence
• Theatre program
• Despite rejections, our son continues to show creativity and new skills
• We're exploring disc golf as a new family activity
• Looking for positive recreational activities remains an ongoing challenge

If you'd like to share your own experiences or what activities your child enjoys, email me at contactparentingsevereautism@gmail.com. Support the podcast through the "buy me a coffee" link on your player or check out merchandise at psabuzzsprout.com.

Chapters

• 0:18 Welcome and Podcast Introduction
• 1:32 Tennis Courts and Rage Episodes
• 4:28 Housing Challenges and Job Hunt
• 8:26 Rejection from Parent Support Group
• 10:59 The Penguin Project Theater Rejection
• 18:34 Positive Moments and New Activities

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. This podcast is gaining traction and I want to thank you so much for sharing my episodes and sharing the information contained within my episodes. And if you're a new listener, please remember you can always support the podcast to help me keep it free for those who need it. If you click the support the show icon on your player, you should be able to go right to the buy me a coffee section, and that would be greatly appreciated. You can also check out my merchandise it's just little fanfare things that I have available and you can follow my links on my main hosting page, which is PSA short for Parenting Severe Autism psa. buzzsprout. com And at the end of every show you should be able to find my show notes and links to all the different ways that you can support the podcast. Most importantly, just keep listening and keep sharing and keep hoping for solutions and options for better lifestyles for all of us. I'm just being very random in this episode about little things that have come to my mind while thinking about what I want to tell you next, so bear with me.

Shannon Chamberlin: 1:32

When we moved to Illinois, We were looking for recreation, you know, just some way to burn off energy, because we had an outdoor lifestyle in Wisconsin and that really doesn't exist here, and we wanted to stay active. We were at Goodwill and my spouse found some tennis rackets. So that became our new hobby and we picked up a basketball for our son, because at the tennis courts right by our house there are also a handful of basketball courts. So we thought, yeah, there we go, he can just play with that. It's right next to the tennis courts and we'll all have a good time. We thought it would be great. So we're at the tennis courts, and this was before the medical cannabis came into the picture. We had never played tennis before, so we were learning and this became the norm. We persevered, we kept doing it, no matter what, and we did it for like two years and we tortured ourselves with this all the time. I mean, tennis was like a daily thing for us and we always dragged our son along because we didn't want anyone else to have to deal with him, but also we wanted to make sure that he was getting treated the way that we wanted him to be treated, and I'll get into that another time. But we're at the tennis courts and we're trying to play and he's right behind us in the basketball court and it's a chain link fence.

Shannon Chamberlin: 2:50

We can see each other, hear each other, everything, and all he would do was scream like a big, bellow, deep scream, and just go and he would have the basketball way above his head and then slam it down on the ground. I mean, he was like Hulk or something. It was really insane. And these were the fits of rage that first started coming out. They're different than what I saw in Wisconsin. He would still scream, but it was more blood curdling or more from a horror movie. This was more I don't know, it was just more base. It was scarier. He was very, very angry and violent sounding. This was what he would do all the time. This is you know, of course.

Shannon Chamberlin: 3:38

Yes, we started going to doctors right away, as soon as we got here as well, and that was hell. As you know, I mentioned the hell we had with doctors around here saying that they wouldn't help us with meds or anything. I mean, this was you know. We wanted to wait until he was 18 or so before we got him on meds, but this behavior actually moved that timeline up a little bit for us as far as starting to seek meds. So, yes, we weren't allowing him to just be this way and not try to get him treated, you know, especially when we realized that cannabis was not an option. And then we're like, well, what are we supposed to do, Right? Well, you know what I did. We were still trying to figure it all out and we would take him to the tennis courts and he would never, ever let us enjoy a game, but we brought him all the time anyway, unless he was actually asleep at the house or something, and there was someone to make sure he was okay Around.

Shannon Chamberlin: 4:27

That same time, I think, is when he started to try to destroy the baby monitor. He was so out of hand and so dark and beginning to become abusive to everything, and I wanted to know what was going on. I wanted to know he was safe, because he wasn't just down the hall from my room anymore and I think he started trying to figure out how to destroy it because we had a lot of problems with it. Things got so bad with him that when we started looking at houses shortly after we got here, I didn't want any house that would not allow him to be in a separate area from me. So my dream home actually has separate living quarters attached, but like, if you see, like two of the like round structure rooms, one on each end of the house and then the main house in the middle. That's what I imagine Like. He needs his own man area where he has maybe even a kitchenette a safe one for him that he can't burn himself, catch himself on fire or anything like that but a kitchenette of just a bachelor pad kind of thing in the same house, because I just I couldn't deal with him. I couldn't stand to be around him and he clearly couldn't stand to be around us and we need to take care of him and there's no other option. So he has to have a separate wing of the house and that would actually make my nervous system calm down a little bit. I seriously cannot live with this child, you know, and he's a grown-ass man. It's always got me up in arms.

Shannon Chamberlin: 5:58

Another thing about when we moved here is we were kind of racing to find jobs and our son was not yet of the age where we could get paid to take care of him. You have to wait until he's 18 for that. It was kind of like whoever gets a job first is going to be the working parent and then the other will stay home. So my spouse was looking for full-time work in sales management or executive position, which he is completely qualified for at the time, and I was just looking for part-time work because I could barely handle life. I was really struggling.

Shannon Chamberlin: 6:32

Hashimoto's and the depression of the move and the way that I had had to deal with our son for those years before we moved and the way that he was being. It just took a lot out of me and I just wanted something without a lot of responsibility. I just wanted to be a lackey and just do a job, earn the money, come home and not put a lot of thought into what was going on. And he was looking for something bigger because he stands to make a lot more money in that position. So he ended up getting some jobs where he had to go away for training a couple times and I'll probably fill you in on some of that in a different episode. But that was another struggle and another little race we were in, not competing against each other, but just trying to make sure we had some income. He did end up getting jobs first, and several of them. So I again was home with our son and also the grandparents were here. It was a new set of struggles. I thought it was going to be better, but it actually was just new struggles.

Shannon Chamberlin: 7:32

So in between all of that, we did go check out that parent support group that I mentioned in my last episode and they met at night, which was not great for us. But we went and we brought our son, because they said that it was a kid and parent group so the kids could all hang out and the parents could meet and commiserate, I guess. So we also didn't like that because we kind of wanted to get away from him. We didn't want to be in a room full of them, you know, but we also didn't really want to leave him with his grandparents, for other reasons that I'll mention later. But we would have been happy if we could have maybe tucked him into bed and then gone. We didn't like bringing him out at night. He doesn't have much left at night and it makes everything harder, it seems.

Shannon Chamberlin: 8:17

Anyway, we went and we didn't see any kids that were like ours, and I know that if you've met one you've only met one. But these kids were higher functioning and highly medicated and highly sugared up Lots of Mountain Dew, lots of chocolate, lots of junk food, just shoveling it in. We were appalled, honestly, at the amount of bullshit that these kids were being pumped with and their parents were not attending to them at all, whereas we have to constantly keep an eye out for our son. He's higher needs. He's much higher needs than these other kids were, and they were completely content just eating junk food, laying around watching movies in the other room. We attended probably eight or 10 of these meetings and it wasn't informative or anything. It was just a support group and it was nice to try to connect with other parents. You know, the struggles are different way, different, and we didn't really identify with a lot and they didn't identify with us either. They didn't. They just they have it better than we do.

Shannon Chamberlin: 9:28

And during the time that we went to these weekly meetings, my spouse actually brought it up that our lives have been a lot easier since we started experimenting with the medical cannabis, with the medical cannabis, and the lady, the mom who runs it, actually told us not to talk about that. She doesn't want to hear about it, she doesn't want us to mention it, she doesn't do it for her kid and basically we're not welcome to speak our minds, we're not welcome to share about what we're doing in our household to cope with not having medications and not having any services and being new and being stressed out and having this abusive child. We got rejected from the autism parent support group. That was our first taste in Illinois of your kid is different, your lifestyle is too different and we don't want you to speak. Basically it was kind of messed up. So that was the last time that we went. Obviously, I mean, it made me really sad. It made both of us very disappointed in people.

Shannon Chamberlin: 10:37

I thought we both thought that we would be understood, that we would not be censored, thought that we would be understood, that we would not be censored, because this kind of autism doesn't really allow for censoring, does it? I mentioned to you also about that project the theater group for special needs and it was called the Penguin Project. I found that it was like basically a countrywide thing all through the US and I had never found it in Wisconsin, so we got pretty excited about that. That was during the same summer. I made the contact and I got the invitation to go and the first two or three meetings were basically just acclimation meetings let the kids get acclimated, and they were being observed by the staff, the people who put the shows together.

Shannon Chamberlin: 11:27

We were just enjoying letting our child kind of be with other special needs people, but he wasn't enjoying it and so we didn't enjoy it as much as we would have if he was having a good time. But he was just going through this thing where he just wanted to high-pitch whine all the time, no matter what. It was a step down from the constant crying and wailing that he was doing in Wisconsin for those years, but it was still constant, no matter what was going on around him. Even if he was being directly communicated with, he was not having it, he was not engaging, he was only doing the whining. I don't know, it was just awful, to be honest, Everything that we did was to the soundtrack of him whining, making himself cry and just being in this bowl of depression and trying to torture the rest of us as well. That was what really pissed me off about the whole thing is that, you know, I would have felt bad for him if he wasn't trying to make it our business he was doing. It seemed like he was doing it for our benefit.

Shannon Chamberlin: 12:35

And again, that goes back to the attention-seeking behaviors that they taught me about in Wisconsin and it just seemed like that's what he was doing. He was doing it as a form of torture to everyone else around him. He didn't think that any of us deserved to have a good time. That's how it seemed to me by about the I don't know maybe five or six visits in. I guess at one point there was like an audition and they have all the kids and the parents in this. It's just a room with folding chairs arranged like an auditorium seating and they had to do these moves, you know, singing and arm movements and leg movements and you know, kind of like a hokey pokey kind of shit. But it wasn't. And I, of course, you know I'm trying to be a proud mama, I'm trying. His dad and I are both trying to help him have a good time and help him understand what's going on and understand what's being asked of him. You know, and monkey, see monkey do kind of stuff.

Shannon Chamberlin: 13:37

There were, I don't know, one or two times where it seemed like he was having fun. There was a girl in there who knew him from when he was a child, and she instantly was kind of glomming onto him and supporting him and offering him her friendship. She was kind of on the staff part. She wasn't special needs, she was just a kid that worked with the other kids and it was pretty cool and I thought it was so sweet that she remembered our boy and wanted to work with him and she was so compassionate and caring and kind and she was his age, you know, maybe even a year younger, but he accepted her kindness and it calmed him down a little bit and he kind of would do monkey see monkey do with her. He had a decent reaction to her and I was optimistic and his dad was optimistic. And then we got a notification via email that he is not going to be part of the Penguin Project because his needs are too great. Again.

Shannon Chamberlin: 14:40

Now, at this point we had already been left out of the ice capades thing in Wisconsin and I toughened up for that. I put my armor on and I went to war for that. And then the thing with the parent group and everything in between, family rejection starts happening and all this stuff. I had my armor on, you know, and I was fighting for my kid and fighting for our rights and then this theater group thing, which you know, I had been researching for years and it meant a lot to me because our child is a ham. If he would just straighten up and be cool, he would have a good time. I really, really believed this was the outlet that was going to make him happy. And then we got rejected from a special needs theater group for being too fucking special. That one broke me. That is the one the parenting group is. Once that happened, I said to my spouse I think I need to start a YouTube channel because this is bullshit. Then this Penguin Project thing happened and I lost it. I got home and I tried to talk about it and I just started sobbing. I was so tired of my child getting rejected from things and not being able to fix it and not being able to convince them that he needs this and he deserves this.

Shannon Chamberlin: 16:01

And if someone would just give him a chance he would be really fun. He loves this stuff more than any kid I've ever seen. He loves acting. He loves okay, so he can't talk right. He's very entertaining and he's very loving and fun loving, and he's just going through a bad time.

Shannon Chamberlin: 16:23

But if you would give him a chance? But they didn't want to give him a chance, and it's okay that they were going to do such an adult themed play for the special needs kids group I just I. He didn't identify with any. He has no idea what, he's never seen that movie. But we tried to get a copy of Hairspray and have him watch it because, as you know, he responds well once he has seen something and he understands what he's getting into. But he wasn't the least bit interested. I mean, no, he was not going to sit down and watch it and I mean to tell you the truth, we didn't want to watch it either.

Shannon Chamberlin: 17:12

How lame of a choice can you make for kids special needs kids to do a play about what? Where's the Lion King? You know where is the Emperor's New Groove? What is going on? Why hairspray? You said this is for special needs children. I don't understand. It's fine, it wasn't meant to be. He would not have been interested in it anyway. But it hurt to have him rejected from the one thing that I thought was going to be good for him and that that is why this podcast was born, Because I realized, in the pain of having my child constantly rejected from everything we tried to do for him, everything that would have been good for him. I'm too emotionally invested and, like I said early on, I don't want to be ugly crying on YouTube, so that's why you get my voice. Instead, I do have a cute little story I want to share with you, and in my next episode I'm just going to go into more details. About every day after New activities going on. There's all kinds of stuff that I need to share with you. Things got really messy. I'm not going to lie. They got messy, and he was 16. So if this is you, if you're coming up on this, if you've had to deal with a move or anything at all, or if you're just curious, make sure to come back and listen to my next one.

Shannon Chamberlin: 18:34

Last time he was here was a couple weeks ago, here at the camper. I think he learned a new trick. He was being so cute. He was sitting here in this little booth. I was making him a can of soup for lunch while his dad was doing some maintenance on the camper. So he made a cute little sound and I looked over and he had his head resting in his hands on the table, with his elbows on the table and his head in his hands. Now he knows the home alone, look. So it's not new that he puts his hands on his face, but I think that the new trick is that he learned to put his elbows on the table and rest his face in his hands, and he looked like, oh wow, look at this, this is cool, Look what I can do, you know. And he looked like he was feeling super cute too. So that makes me think that maybe he saw himself do it in a reflection recently and he was showing it to me.

Shannon Chamberlin: 19:24

So I marveled at how cute he was and how smart he was at figuring that out and I entertained the whole thing the whole time. And he continued to do it without asking me to look and without trying to get my attention. And he began to entertain himself while I was dealing with his food and everything and I found him humming his own tune. I had to go outside for a minute and come back in and he's sitting here with his head resting in his little hands and his elbows up on the table, and he was just not even watching the door, just looking down and around on the table and humming his own little tune, something that he just was making up. I didn't recognize it at all and it was just so cute. I mean, you know, that's a level of creativity that they say our kids don't have, and I am constantly being pleasantly surprised with his level of creativity. It's not constant, like daily, but all throughout his life I have been pleasantly surprised with his creativity. So don't lose hope. I don't think everything they say about our kids is right. Our kid constantly proves me right, because what they say about him and what he does, what he shows, is completely different, and I don't think he's the only kid that's not fitting the mold. I want to thank you guys for reaching out to me with your stories and your comments. I really appreciate the love that you're sending me and, of course, if you have anything to say or if you'd like to tell me how you're learning to parent, you can email me at contactparentingsevereautism at gmailcom.

Shannon Chamberlin: 20:54

His little summer camp thing has ended, his little day camp, and I'm now trying to figure out if there's anything else that we can find for him to do. But I think we recently found a disc golf course. I guess there was a big tournament like a national tournament for disc golf and a lot of the golfers stayed here at the campground and one of them gifted my spouse with a handful of the discs or the Frisbees or whatever they are. He and our son have been going out to the local disc golf course recently, have been going out to the local disc golf course recently. Our son does need a lot of redirection but he can get, I guess, two or three throws in before he gets all giggly and goofy and forgets what he's doing and has to be retrained again how to hold it, how to release it, Because otherwise he'll just throw it like a plate, you know, just straight up in the air and whatever. But he really likes it. So I think that might be our new autumn family thing and as long as it doesn't snow we can do it into the winter as well.

Shannon Chamberlin: 21:56

Have you guys tried that? Do your kids like that kind of stuff? Does your kid enjoy any kind of physical sport Volleyball, badminton, tennis, basketball, pickleball, kickball, baseball, wiffleball or frisbee golf? Our son always loved kickball and he's getting okay at the wiffleball when it's available to him. He hates all the other stuff. Oh, he's actually. No, he's getting really good at basketball, at not playing the game but shooting the baskets.

Shannon Chamberlin: 22:28

I'll have to get one of those videos up on my social media as well. I know I keep saying I'm going to put all this cool stuff on my socials and I haven't done it yet, and I apologize. But since you are parents just like I, you understand and eventually they'll get out there. That's the lifestyle that we live. You know, one day maybe I'll just flood everything all at once. I know that's not the greatest way to do it, but that's the way our lives work, isn't it? Well, let me know. Let me know what your kids enjoy, and you can do that by emailing me or drop me a fan mail. My next episode will be out in two weeks. You hang in there, You're a superhero.