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
My Son Deserves Joy Too: Fighting for Inclusion in a World That Says No To Severe Autism
Shannon shares a pivotal moment when she realized her son's autism was considered "severe" after he was excluded from a Disney on Ice event that his autism therapy group organized without inviting him.
• Communication strategies using Disney movie references help her son understand complex concepts like family members leaving
• Learning that her son requires multiple staff members for support at his therapy program
• The heartbreak of discovering her son wasn't invited to a Disney event because his "needs were too great"
• Fighting for inclusion and eventually attending the Disney on Ice show as a family
• Funny shopping adventures with her son, including his perfect comedic timing saying "I want to be happy because people are stupid"
• The hilarious struggle with a broken shopping cart and learning about boundaries
• Importance of proper nutrition before outings to help manage behaviors
If you'd like to support the podcast, click the support button on your audio player or visit psabuzzsprout.com to access merch and donation options. Small donations make a huge difference in keeping this podcast free for everyone.
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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. I want to make sure you know how to get in touch with me. You can always support the show if any of these episodes have touched you or made you feel seen or made you cry or anything like that, and you want to support what I'm doing, To help keep this podcast free for everyone who is in our boat.
Speaker 1:Small donations make a huge difference and you can always just click the support button on your audio player for this podcast and it should take you to the Buy Me a Coffee page. That's probably the easiest way to do it. You can also check out my merch if you would like to have something that gives you a reminder, a physical reminder of your allies in the world who are listening to this podcast and, of course, me, who's making the podcast. Don't forget, I've got screaming pillows and coffee cups and wine tumblers and all kinds of things like that, with the logo on there and a nice little message for you. You should be able to access that through my Buzzsprout links. I'm working on making it a little easier to access, but right now, if you go to psabuzzsproutcom, you can check my links to support the show and you'll be able to find my store. It's a spring store is what it says. I'm still working on being able to make that a little easier to access, but check it out. If you'd like to support the podcast, we would definitely appreciate it, and the goal is to save up enough from your donations to be able to help another severe autism family in need. So every little bit makes a difference. Thank you so much for always liking and sharing my podcast episodes and my social media posts. It really does help to grow the podcast and that's what we need right now. My goal right now is to get a thousand downloads a month, and it's difficult because I am not allowed to advertise in the severe autism groups on social media. Nobody knows about me in those groups. I can't advertise as my page. There's only one that allows me to be active. Anything you can do to get these episodes out there is greatly appreciated and of course, you'll always get a shout out from me if you make a donation.
Speaker 1:So, I just want to get into this...
Speaker 1:It was obvious to me when I was bringing our son to that non-profit autism therapy place that he may have been one of the most severe in there, but even at the time, you know, I didn't know that there was severe. I didn't realize that there was a category. I just I don't know. We were just functioning and figuring it out, you know. But the more I was exposed to other people who were also considered to have autism, the more I realized that my son had a different kind of autism. I think there were only two in this teen group that he was in that didn't really communicate much at all, but I still thought the non-profit was a safe haven for him.
Speaker 1:The lady always told me when I would pick him up he is a lot. Then she would say a lot for one mom to handle. You know, like I said, I never really knew anything else. I didn't know any better. I didn't know anything different. I just did this day in and day out and I didn't realize he was a lot until someone said something. And then, you know I think I've mentioned before that I kind of wish I never heard that, because it made it a little easier for me to once in a while start feeling a little sorry for myself. You know, like when you start feeling stretched to the max and then you realize you hear that in the back of your mind "he's a lot. That's a lot for you, you know. And the n... it is a lot for me, poor me. But there's really not a lot of room in the lifestyle for that is there? So you just suck it up and you keep going.
Speaker 1:But I always noticed that he had two or three people working with him at one time, sitting at the table with him or tag teaming him. And I don't know, I thought... you know it wasn't very busy there. The kids were in and out at different times and I don't know, I thought that's what they wanted to do. Ignorance is bliss, you know. I didn't realize that he actually required two or three people at one time. All the time I thought that they just liked him, I thought they thought he was fun or they had different things to offer, bring to the table. So they all worked with him at one time to see what was working and what he would respond to. But I don't think that was the case.
Speaker 1:I did always - his dad and I always tell everyone when we introduce him to new people that the best way to relate to him is through Disney movies, marvel characters, things like that. He really doesn't understand much unless you can put it in context of a movie that he loves, and most of it is Disney, but some of it's like Marvel and you know comics and stuff like that. They have a huge impact on him. The impact is so great with him that when we needed to tell him about when his grandmother wasn't coming back after she moved out of the house, we couldn't get it through to him until his dad put it in the context of the Lion King movies. So my spouse had to tell him that she left the pack and that she's not coming back, and had to do the same thing with anyone else who has ever left him behind.
Speaker 1:I'm going to take a quick detour here because I want to say that just the other day Jacob expressed to his dad on one of their walks that he missed me. He said I miss mommy or I miss Shannon doll, one of the two and that's really impressive. I mean for him to be able to put all of that feeling together into words and get it out of his head through his mouth in a way that another person can understand. That's a huge, huge thing. It's also very sad. I did condition him, let him know that I was coming out to the campground and I just need some time to get back to normal, but of course it's hard to make him understand that. So I've gone a few weeks, but I do see them periodically.
Speaker 1:We think that maybe it was more than just missing me. Maybe he was starting to wonder if I had left left like everyone else, because his real mother hasn't been in the picture for many years. His grandmother walked out after saying she was going to spend the rest of her life hanging out with him after she retired, and his half-siblings are both out of his life. So my spouse took the opportunity at that point to have a discussion with him and talk to him about his real mother and his grandmother and his two siblings, and they are not coming back. The half-sister lives in a different state and has made some decisions that are not in Jacob's best interest, and so she has left the pack. And the half-brother has definitely made decisions that are not in Jacob's best interest and not in anyone's best interest. So he is gone and he has left the pack, and, of course, the grandmother. Then he circled back to me and my place in the family and reassured him that I have not left the pack, I am on a mission and I will be back. So that was nice.
Speaker 1:But if we didn't have movie references it would be a lot harder to get him to understand things. You know, you can take any Disney movie maybe even Nemo, Finding Nemo and find a character who's on a mission and is not with their family at this moment but will return. So that type of thing is a huge, huge help for communicating ideas and facts to our son and we let everyone know that in therapy and in school and anyone who comes in contact with him. That's the best way.
Speaker 1:So back to my original story. I found out somehow maybe it was a Facebook post or something, that that non-profit with the Autism Whisperer Lady that my son went to several times a week for the teen group and went to the swim night and stuff like that, was going to a Disney on ice, like ice capades type thing. My child, more than any other teen in that group, more than any other kid I've seen in that building, loves his Disney characters. I mean, LOVES his Disney characters.
Speaker 1:We took him to Disney in Florida and Universal Studios and he was the happiest - also the most stressed out, but the happiest kid, because all of the characters were there and he just he got hugs from them and pictures. He got to meet so many of them. It was so awesome for him and I have never seen any other kid that excited about Disney characters, ever, ever. And they didn't invite my kid to the Disney on Ice. So I immediately contacted her and said you know, hey, what the fuck? Right? She said his needs are too great. We don't have enough staff to watch over him while we're tending to all the other teens. This is a teen group and they function at a certain level and he doesn't function at that level. It's just not a good idea for us to include him on this trip. And I was heartbroken. This is huge, you know, this is the time when, you know, I thought, I thought they cared about him, I thought they liked him and that they cared about his happiness. And I thought that, because they chose this career path on purpose, they didn't get stuck in "surprise! You're a mom and the kid has autism." No, they chose this career path, All of the people involved in this non-profit, and for some reason I was always under the impression, with anyone who ever met him, that they loved him. They just adored him. He was so fun and so cute and just such a great kid, and I thought that everyone in the world wanted to see my son happy. So this was a devastating blow for us as his parents. There's nothing he loves more, and he was in a stage where he hated everything and the one thing that could have given him a small bit of joy wasn't even offered to him because he doesn't function at the level of the other people who were going.
Speaker 1:So I told her well, what about his parents? What about us? Can't we go and watch over him? I mean, how much is it? Why don't we even have opportunity to buy the tickets? What is going on? Can we go? Do you have extra tickets? How does this work? Because we got grants to pay for his involvement in this program. So what about that? Can't you use some of that money? We will pay for it. I mean, if it's not super high price, of course we'll pay for it. Can we just take him with you guys? Can we just go? And somehow we got it worked out to where all three of us were able to go as part of the group, but we did drive separately.
Speaker 1:When we got there he was the happiest person in the whole building. Everyone was having a ball watching how happy our son was to watch these Disney on Ice characters coming out. He got to see all of his favorite princesses. He got to see them come right by him later in the evening. He knew every song, he knew everything. You know, he just was definitely in his element. He was so happy. And our group was not very big. It was maybe 20 people at the most, maybe 30. I don't know, not that big. I mean, in a place where you know it's this, I don't know if it was like a civic center, I don't actually know where we were, but it was a place where you would go if they had a circus in town and stuff like that. It was big, you know, and a lot of the people that we were surrounded by were not with the group. They were just regular people trying to enjoy some family time at the ice capades.
Speaker 1:And at one point Jacob got so excited that he jumped up in the air and almost fell over all of the theater seats in front of us. He, I mean because it only comes up to your ankles, the back of the chair in front of you and there was really no nothing to brace yourself on. But he jumped up and he almost fell. But thank God I have been conditioned already by this point to reach out and grab him because of his running into traffic all the time. So I just instinctively reached out, go-go gadget arm, grabbed the back of his coat and yanked him backwards and held him up. The people behind us were so excited about the whole thing and I really couldn't get him to sit down either and I apologized to them and they're like well, that was really awesome - Good save, but we don't mind. It's more fun watching his happiness than watching the actual show.
Speaker 1:And see, that positive reception is what I am used to. That's how I thought everybody viewed my child, even when I didn't. Everyone else seems to think that he is the bee's knees and I was so shocked at how he was treated as an outcast, not even invited to this life-changing, if only for a moment, activity. That's when I realized that that whole event, everything... That's when I realized that his autism was no longer cute, he was no longer welcome in certain spaces and it was time for us, as his parents, to really start fighting for him to have a life. It was different than the school disrespecting him or hurting him or forcing him into certain classroom situations or certain pep rally situations. That was a form of just plain disrespect for his needs. This was different. This was exclusion, purposeful, premeditated exclusion from a group that was named for his exact condition - Autism Teen Group. He was a teen with autism and this was the first time I ever experienced him being shunned by his own people, basically, you know what I mean?
Speaker 1:But his utter happiness, amidst hating everything in life, was so awesome. I just I wanted him to have more of this. I thought it would make everything better for everyone, to be honest. So what I thought was you know what he needs? An outlet. What he really loves is to act out the parts of anybody in a movie - Anybody.
Speaker 1:So I started looking for special needs - considerate theater groups. I didn't know what else to do, but I thought you know he's a ham and he's always loved to act stuff out. So what he doesn't talk right, it's fine. Just give him an outlet. I think that there should be something like that. I mean, you know, what the hell, right? So I just started looking and I kept my search going for like three years, never did really find a whole lot. I found a couple things, which I'll tell you about in a different episode, but I was really disappointed to learn the truth about his high needs and to start learning that there were no extracurricular groups that catered to anyone like him. I mean, I wasn't able to find anything. No one wants to work with thespians who are special needs, it seems. Maybe I'm wrong... this was, you know, 10 years ago, I guess, or Nine years ago anyway, but it doesn't seem that there's a lot out there for these kids.
Speaker 1:To me, his behavior and his needs are just normal. It's just what we deal with. I've never really known anything else. He just never improved from what he was when I met him.
Speaker 1:Also, after about a year and a half of the non-schooling and homeschooling mixture that we were cooking up, he finally agreed to go back to school. So, yay! We would ask him every other week, you know are you ready to go back to school? Do you want to go back to school? We tried to do it in an upbeat fashion, not as, like... you know, 'you suck today. Do you think you should go to school?'"
Speaker 1:It was just always we tried to treat him with the utmost respect, to consider his feelings and his desires. Do you want to go? Because I don't want to keep you home. If you would rather go to school, I'm not in the business of making you unhappy. The reason that you're home from school is because you were not happy. We always gave him a chance to see if he's happy. Are you ready to go? You know, and eventually one day he said yes, he's ready to go back to school. So details of his return will be coming up in the next episode. I do have a cute little story, two cute little stories, for you.
Speaker 1:We just went to the shopping thing the other day. On Wednesdays, a local grocery store here puts their health food stuff on sale for like 30% off. So that's the day that we go and get our family's healthy groceries. You know the gluten-free jazz and all that stuff. So he was being a bit of a pill to begin with when they came here to pick me up and it turned out that he had slept too late and had decided that he didn't want breakfast. He just wanted to go to the store, and I think we need to work on that. I'm not agreeing with that process at all because it does affect him. I mean, can anyone go to the store? And I think we need to work on that. I'm not agreeing with that process at all because it does affect him. I mean, can anyone go to the grocery store with an empty stomach? Anyway, we'll work on that. But he was acting out of pocket and I think it was because he was hungry. But we got to the first health food store that we go to and he was just like.
Speaker 1:I had to work with him the whole time, while his dad was trying to pick stuff up for himself too, you know. And I was telling him it's not Jacob's turn right now, it's daddy's turn. Daddy has to think it's daddy's turn and he's not. He might not talk, but it's still his turn. It's not our turn. And then his dad would make one noise and that would give Jacob the idea that now it's his turn. So no, now just because dad made a noise does not mean it's Jacob's turn, it's still daddy's turn, you know. And then so Jacob will go oh, be quiet, just be quiet, hunting voices, you know, and he'll just keep that going.
Speaker 1:If you keep responding, then that monotone way that just pierces through everything that you're trying to do in your head and stops you from being able to think, because it's just a constant drone. He knows what he's doing, this is, he knows. So then you have to stop responding. And he knows what we're, he knows the exercise, he knows that we're supposed to be quiet, he understands all of the cues and all of the words that I am giving him and he's making his choices as we go. So then it's time to go up to the cash register and he knows the path. He sees us going up towards the cash register and he runs in a diagonal line from the front of the store all the way to the back corner of the eating area with his big self, you know. And he says I want to be happy, because that's what he associates with us, trying to get him off of the negative train. We just ignored him.
Speaker 1:But then he runs all the way back in the same exact path up to the front of the store and he says because people are stupid, stupid, stupid. I lost it, I was doubled over. I couldn't even stand up. I was laughing so hard and because he never can say because, and then give a reason, you know. So I was thrilled but also thought it was hilarious that he's happy because people are stupid and it was just just funny. But no one else understood him and there was only the cashier and my spouse. But my spouse was pretty frazzled already and pretty negative and not hearing, not really processing what was coming out of the boy's mouth. So I'm the only one there laughing my ass off. And Jacob knew, he knew that I got it and I touched his arm and you know, let him know that was funny, that was really smart. I'm not laughing at you, I'm laughing with you kind of thing, you know, let him know that was funny, that was really smart. I'm not laughing at you, I'm laughing with you kind of thing, you know.
Speaker 1:And we have our own method of communication. He can read my expressions pretty well, so I wasn't too worried about him taking it the wrong way. But people are stupid is something I taught him and it was because somebody, somewhere, disrespected him. And you know how I am. I'll just call him out. And I call him out by educating my son in front of them and I remember telling him you don't have to take that, you don't have to let people treat you like that. You didn't deserve that and people are stupid. I'm sorry that you had to deal with that. Some people are just stupid and he has hung on to that, just like a lot of other stuff that I have told him, and so he just pulls it out of his pocket whenever he wants and it's just hilarious.
Speaker 1:But I told his dad. I'm like did you hear what he said? He says no, no, I didn't. So I had to say it because I didn't. I don't know. Like he's over here booming, being negative my son, and then the cashier doesn't know what to think and my spouse is all pissed off. So I had to tell him exactly what happened. My spouse didn't laugh, but the cashier understood finally what was going on and she giggled. So there, my mission was accomplished. So then we get to the next store.
Speaker 1:In between this store and that store, jacob got a snack, so he should have been feeling a little better. I could tell that it was the food that was making him upset, or the lack of food, because as soon as he got a little bit of snack in his hand and put it in his mouth, everything stopped. All the noises stopped. And I know this boy I have raised him mainly by myself a lot of the time for so long that when he is acting up and doing all the noises and all the migraine-inducing behaviors and you put a piece of food in his hand and he stops all the noise, that means that the food is what was missing in that equation. If it was something else that was bothering him, then he would continue with the behaviors, he would continue with the stupid noises and everything to give you a headache and he would be eating at behaviors. He would continue with the stupid noises and everything to give you a headache and he would be eating at the same time.
Speaker 1:So I knew right away and that sparked a discussion that I'm not going to get into here but the bottom line was I didn't feel he was given a chance to behave properly that day, because he does not decide when he eats. That's a problem that we're working with right now. He will never be that person. You know what I mean. Like I can tell if he's not hungry. He's allowed to say he's not hungry, but he no, you don't. You're not allowed to go to a grocery store two grocery stores with no fuel in your tank, with severe autism. Sorry, not happening. I would be more inclined to take him later in the day if it meant that he got to eat first.
Speaker 1:Anyway, separate issue altogether. So we get to this next store and he usually goes and grabs a cart. So he goes on his little path to grab a cart and there is a toddler right there about knee high to Jacob, and Jacob didn't even care. He just walked his knees right into this boy's head. And I'm like Jacob and the mom is right there. I couldn't even look at any of them. I just stared at the floor. I couldn't look at her. The kid was okay, he didn't really know what had happened. I couldn't look at Jacob. I couldn't look at my spouse. My spouse tells her sorry, so that at least happened. And she didn't seem to care. She was still walking away, like looking for her kid, like are you coming or what. So I don't know, I'm maybe I'm more protective of other people's babies than they are, I don't know. But I felt terrible. And he has been doing that. He has walked right into truck mirrors, parked trucks, just walking into them, you know, just not not paying attention, and that is just very dangerous, you know what the hell.
Speaker 1:So he grabs a cart Thankfully he didn't mow the kid over with the cart and I supervised his trajectory with that. And then we get out to the aisle and at one point he had left the cart behind and gone and like did his zooming around and then he came back. Well, in the middle of all that I was pushing the cart a little bit and I noticed that it wasn't exactly right and like the wheel, you know how the wheel will stick and you can pick the cart up and kind of bounce it on the ground and jar it loose and it'll function fine. Well, that wasn't happening. It wasn't that kind of wheel issue, it was just screwed up and you really kind of had to drag the cart sometimes instead of slamming the cart. So I had forgotten I knew it, but then it was so quick and we were so busy, I just forgot and I let Jacob have the cart when he came back and then he left it again on his path to go get his special foods. He just left.
Speaker 1:I'm like son, why are you leaving your cart in the middle of everything and his dad's like, yeah, jacob, don't you want your cart? He says no, and I still had forgotten about the wheel. We're like, well, come and get your cart, come on, get your cart. And so he, reluctantly, comes back and gets the cart and he was acting really strange. And we get those frozen items.
Speaker 1:We start going up and down the aisles that we need to shop through and he's lagging behind. He's acting really weird, not keeping up with us, and every time I look back he's like he almost looks drunk. Finally, I said to his dad he was like way far, he was two aisles behind us and I'm looking for him and here he comes. I still can't tell the story without laughing. So here he comes, here he comes around the corner and I just caught a side glimpse of him as I was turning my head, you know, and his body is like up against the wall. He's got this expression on his face, like whoa, and the cart is being pushed. And I said I didn't.
Speaker 1:I still didn't think about the wheel, I just turned back around. I said, man, something is wrong with Jacob, he's being really weird. And then I looked again weird. And then I looked again. I looked again and he kind of gave me a smile and I realized that he was trying to steer the cart with the fucked up wheel. And he doesn't understand how anything works, ever, ever, ever in life. Okay, so he didn't know anything, he just knew that this is not right. And so his arms are extended all the way out towards the center of the aisle, his torso is snaked all the way over to the inside of the other aisle. He's almost leaning against the wall and he's got this expression on his face, like he's walking a tightrope.
Speaker 1:And I finally realized what was happening and I told his dad oh, it's the cart, it's not Jacob, it's the cart. His dad's like well, I don't understand what the hell could be wrong with the cart. I'm like, no, you need to find out, because it's. The wheel is really bad. And he goes to grab the cart and I said it's not the kind that you can slam out of it, there's something wrong with it. So he tries slamming it out of it anyway and he's like oh, and he's like, yeah, this is wrong. So he pushed it for a minute and then he gave up and then Jacob's pushing the cart and then we finally get to go check out his dad takes the cart.
Speaker 1:We were both so entertained Jacob, just you could. You could tell that Jacob was like I want to see how he does this. You know, we both just stopped and stood there and watched his dad wrestle this cart down the aisle and again, I was laughing so hard I could not stand up. I had to grab a hold of Jacob's arm for support and he was appreciating the entire thing. He wasn't laughing like I was, but he did see the humor or at least the revenge or something. You know what I mean, and he was enjoying watching his dad push the cart. So that was hilarious. We also had a teachable moment during that, because he was in between, like before. He knew that I understood the problem with the cart and why Jacob was being weird about the cart.
Speaker 1:Jacob was being really negative and at one point I tried to reach out and just give his arm a squeeze, but he did not want to be touched that day apparently. So he, you know he flipped away from me and wouldn't let me touch him and I was like, oh, you don't want to be touched right now. That's okay. That's okay. I understand. Sometimes I feel like that too, and, to be honest, I feel like that all the time. He comes down every two minutes and squeezes my arms and I am so tired of not having a wall around my body because I don't want to be touched all the time. You know it's, I'm so tired of it. So, anyway, I was like okay, well, I understand, I don't always want to be touched either.
Speaker 1:Two minutes later, this boy comes and tries to squeeze my arm and I snaked away from him and I said no, I also do not want to be touched. And he kept trying and I said didn't you just tell me you don't want to be touched? And he, you know, looks at me. I'm like I don't want to be touched either. I, if I don't touch you, you don't touch me. It's okay. We don't have to touch each other all the time. I'm not going to touch you because you don't want to be touched, and I want you to not touch me because I also don't want to be touched. So we had a teachable moment. Hopefully it worked. I at least got to say my piece about it. So I'm curious if you have any funny stories about taking your child out on excursions, whether it's shopping or something else that you guys do together on a regular basis, or anything that has not been done on a regular basis, and any kind of strange or funny reactions or interactions. I would love to hear from you on that. So you can always email me at contactparentingsevereautism at gmailcom.
Speaker 1:And since summer is here, don't forget, I do have my shopping cart on my affiliate links on psabuzzsproutcom. It's usually attached right at the bottom of every episode but it's got the organic and healthy bug repellent and sunscreen and tinctures and supplements for nervous system health and for sleep. And you know, with the seasons changing and stuff, the kiddos start to have trouble with their sleep. So if you're not doing magnesium and stuff, you might look into that. I do have some on my shopping list that has worked well for us, and also melatonin and lavender tea and stuff like that can be really helpful Chamomile tea and you can do some adaptogenic herbs for yourself to help you get through, because that's what we need as the caregivers and the parents. We need adaptogenic support for our nervous system. So I have a bunch of links for stuff like that that works for our family.
Speaker 1:Hopefully that helps you. And in my next episode I will start detailing his return to school. I hope you guys are having a decent start to your summer. I hope it only gets better from here. Hang in there, you're a superhero.