Embracing Unique Identities in Severe Autism Parenting

Heads Up! This one gets a little emotional!

What if you could transform your understanding of autism and turn challenging moments into opportunities of growth? Join me, Shannon Chamberlin, as I share our family's journey navigating early puberty with our son, who has severe autism. From managing the long transition periods between activities that disrupt his school therapies to ingeniously fostering his independence with themed alarm clocks, we uncover the unique patterns and preferences that shaped this complex phase of his life.

Discover the power of communication in autism through our heartfelt experiences with my son’s profound communication challenges. After a well-intentioned attempt to guide him through articulating his emotions, we turned to a nonprofit autism group for expert guidance. This crucial step uncovered subtle behavioral cues and innovative communication strategies, like using keyboards, that helped us better understand his ever-evol

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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. Remember to check out psa. buzzsprout. com if you would like some links on some of the products that have been working well for me and my family. There are not a lot of them, but when I find something I do try to share it with you guys, and you can also find ways to support the podcast, s hare the podcast me. Also, you can just email me directly at contact. parentingsevereautism@ gmailcom. Most importantly, I hope that you're getting something out of this, even if it's just to feel that you're not alone in this world of severe autism.

Shannon Chamberlin 0:58

Today I wanted to talk about some behaviors that were sprouting up, and I believe that they coincide with early puberty. Our son didn't hit full raging bull puberty for many years, so this was a really long process, I would say from about 12 years old to 19 years old. Please forgive any background noise. He is actually just running around the house having a glory day right now and I'm not going to interrupt him, but he can be very loud when he's happy. I'm sure you understand. One thing we started to notice back when he was about 11. That has carried through all the way up until today. It's still true today is that it started taking him about 40 to 45 minutes to adjust to a new environment. After a transition, even if that's just from one room to the next with a new activity, a 40 to 45 minute adjustment period was needed. That started to really put a damper on his therapies and things, because they don't have that much time at schools to allow him the time to adjust before they therapy him. So they were trying to just therapy him while he was in this adjustment period, because it's kind of like a cattle call or you know in and out kind of thing and it just doesn't suit him because of the transition period. He just needs that time to adjust and there's really nothing that we have found that can help him speed up that process. So it was really to his own detriment. No one was able to accommodate his need for time to adjust. He was not receiving any kind of benefit from his therapies at that point. So the school was getting frustrated with us, you know with him, which means us. There was really nothing anyone could do except give him the time that he needed and that apparently wasn't possible. So that kind of started a snowball of changes that we began to notice while he was still in school.

Shannon Chamberlin 2:54

And while he was in school we were trying to help him be a little more independent. I mean it was nice to kind of have this great idea that he could wake himself up with the alarm. He could just get up, turn the alarm off and start getting dressed, because he did know what to do and he was very good at just getting out of bed and quietly getting dressed and all of that jazz. So we thought, okay, well, here's a step towards independence. Let's give him this cute little Lego Batman alarm clock. And of course it only had the beeping, that classic beeping that all of us hate. And while he thought it was an awesome little Lego Batman, he quickly tired of the sound of the alarm and I don't blame him, but I mean you know there are not a lot of choices in the alarm clock world. At that point you know I don't want to get him one of those $100 or $300 machines that wakes him up nicely with a massage and a hug and a kiss and a sunrise. You know we knew he was tiring of it and I think I feel like he threw it across the room or he did something to try to damage it. He just indicated that he didn't want anything to do with this Lego Batman alarm clock.

Shannon Chamberlin 3:59

We found a Darth Vader lightsaber wielding alarm clock and it was really cool and he loved it. And it did all the Darth Vader lightsaber wielding alarm clock and it was really cool and he loved it. And it did all the Darth Vader noises. It did all the lightsaber noises. It did this whole thing for like almost a full minute. And there was also I think it was a demo button. It would do that same noise, just as a demo. He agreed that that would be something to make him happy, so we put that in his room. It lights up with the red lightsaber. I think a blue one was in there too, and it's a really badass looking Darth Vader, a foot tall. It was awesome, but I had to hide it. I had to take it away from him.

Shannon Chamberlin 4:36

At first he loved it.

Shannon Chamberlin 4:38

Then he started to obsess over it and then he started to hate it. So he loved it because of you know, he loves Darth Vader. He loves all evil things and danger and all that stuff, and then he just would obsess by pressing that demo button all day long. The sound effects that it makes were so loud I could hear them all over the house. Our house was pretty sound. I couldn't hear a lot of stuff going on upstairs, but I could hear that damn thing. So he was always pressing that demo button, listening to that and putting his face right up against it, so he had the lightsabers in his eyes almost and it was just. It was just a little much and I didn't think it was very healthy.

Shannon Chamberlin 5:18

So I kept telling him to stop, stop, stop. We had to put it out of his reach, but he hated it. To wake him up in the morning and I don't blame him I mean, no, alarm is great unless it's really gentle, but it was just bad. And after he started to hate it for morning wake-ups, I feel like he started to hate everything at that point. So once we pulled him out of school, we became hyper aware of everything that he was starting to hate, and it was a new thing every day until not long

Shannon Chamberlin 5:51

It didn't take long until everything that he had loved was now something that he hated and he would not do anything, he wouldn't participate in anything, he just hated everything vehemently. A lot of it, I I felt, was directed towards me, which you know, I get it. You know it's me and his dad and it used to be just him and his dad. I understand that; I come from a broken home as well, so I get that, but I always tried to be a good mom to him and not keep him away from his dad. But he just seems to have developed this vision of me just being a problem for him and it really was hurtful to me. It became like, okay, yeah, he started to hate all the little things in life that he always loved, ... - -.....

Shannon Chamberlin 6:36

It what we really started to notice during ... Wednesdays and Sundays, when he started to not allow us to have our days off and enjoy them as family days, during those days we started to notice that if I so much - as smiled, he would throw - a shit fit, even if he saw me from inside the house, if he saw my teeth, he knew I was having a good time and he was not going to allow it. And I didn't realize it for a little while. But his dad pointed it out because his dad loves my smile. I smiled at him. I don't know, we were just having a nice little conversation. Jacob had not yet risen from the bed and come outside to ruin it. And his dad was just enjoying my smile. And he happened to look over to the living room window and there's Jacob scowling at me. He goes, look at the window and I looked and smiled and he just blew up and he's like no, I was like whoa what and we decided right then I think I think it's the smile. He doesn't want you to smile.

Navigating Autism and Communication Challenges

Shannon Chamberlin 7:38

It went from that to my laugh. If he hears me laugh, even now, if he's not in a great mood and . he hears me sobbing, this he will come straight to me and investigate and make sure that I don't have anything to laugh about. He hates my laugh, he hates my smile. It puts a little piss face on him every single time. He just absolutely hates my happiness. And mad, got to the point that, no matter where I was or what I was doing, if he had any inkling that I was enjoying that moment in time, he would instantly interfere and make sure that I no longer had a reason to smile, and it was. It's actually it's very hurtful. So yeah, that's still now that I'm talking about that. I realize it's still a very sensitive pain point for me, so I'm just going to move on away from that. ... .?

Navigating Autism and Communication Challenges

Shannon Chamberlin 8:27

One thing that happened while he was in school! He kept crying and we developed this thing, he and I, where he would come home from school and it wouldn't be very long before he broke down into tears.... So I always it was almost every ? I would lay down on our couch and let him lay down ! right And next to me day, and I would wrong, wrap him up in my arms and legs and hold him while he? sobbed for who knows how long. I didn't care how long it took. I never put work before... him or anything like that. would just lay with him until he felt better. And I mean, my entire shirt was just full of snot every day and he would just lay there on me and just sob.

Shannon Chamberlin 9:10

One day, when he was very upset, he was able to try to use his words and he indicated that he was upset Instead of sobbing. This day he was trying to communicate with me and I was very into that. So I was trying to ask him what's wrong? Why are you feeling this way? What is it? I think he said he was mad and I said why are you mad and it was very disorganized and choppy, like he was speaking a foreign language. But I tried my best to understand what it was and it was just something trivial, something like if it were you or me, maybe you had been working for 20 minutes on making a pile of books and you went to put the second to last book on and the whole pile fell over. It was something like that. You know, that's what I gathered and I honestly can't remember exactly what it was, because this was a long time ago now it was over 10 years ago but I didn't know how I like.

Shannon Chamberlin 10:06

Well, okay, in a regular story it's just something that happens. You just got to deal with it. So I said well, buddy, I'm sorry that happened to you and I'm sorry that you're upset. And he was looking at me as if he expected me to fix it. And so I said you know, we all have things like that in our lives that upset us, and you know it'll be okay. It's just that. Well, buddy, you know sometimes that happens Through crocodile tears. He says sometimes that happens. I said yeah, and I gave him a hug. I said it'll be okay, everything's okay. It's just sometimes that happens. We'll just move past it, let's find something that makes us happy and it'll be okay. And he was like, okay.

Shannon Chamberlin 10:49

But I soon learned that that was not okay. Something else happened shortly thereafter and I guess I had the same either look on my face or tone in my voice when it happened, because he spun around at me. He said, oh, sometimes that happens. And I said, well, yeah, and he was pissed at me and to this day something goes wrong. He'll look at me and he'll just scream, oh, sometimes that happens. Like, oh, you're brilliant, mom, great, yeah, good job. So I've never used that since he taught me my lesson. I'm. Apparently that was not the answer he was looking for.

Shannon Chamberlin 11:35

Shortly after that we put an end to the schooling. I ended up finding that nonprofit autism group and that was awesome. That was a godsend. Good things happened and messed up things happened, and there's lots of things to talk about with that. But I learned something immediately when I took him over there.

Shannon Chamberlin 11:53

We brought him in to meet the lady. She was completely ready to accept him and she was such a beautiful person, beautiful soul, really into helping these kids and she brought him right over into her administration office and the flooring is different. There's like a one color carpet outside of the office and then it changes to a different color of carpet inside the office. And I've never noticed this before and she really taught me to pay attention just from this little incident. She noticed right away! And as he crossed that doorway, that threshold, he almost looked like he ? was She on goes, boat. He was unsteady on his a lot! I very steady on his feet. But she noticed right away and she said, oh, whoa, and I think that's where he learned whoa, for when he's feeling unsteady. And I never noticed that before at all. But she noticed right away and she told me it's the difference in the threshold, it's the difference between the two flooring colors. It messed with him and it threw him off and he almost lost his balance. I had never noticed anything like that before, but I thought that was very insightful. So hopefully that helps somebody out there.

Shannon Chamberlin 13:07

Just let him start typing away and she would type to him a question and then push the keyboard to him and he would type an answer. And there were very short answers, very simple questions, but it was really cool. They immediately started communicating that way, like she knew him or something, and that she knew that was going to work for him. That never worked for us, which is why we never supported that in school. He was always seeking a different kind of connection. So I don't know, but it was really neat and it didn't happen all the time. I think he may have played the keyboard communication game three times with her, and I mean he was involved with her for a year and a half.

Shannon Chamberlin 13:45

I think Nothing with him is consistent. And just when she thought she had figured him out, he changed. And that is the story of his life with anybody. Just when we think we've got it figured out or we've got it licked, he changes, he adapts, he overcomes and it's causing whoever he's dealing - with to have to change, adapt and overcome and to just to keep up with him. So very interesting.

Discovering the Challenges of Autism

Shannon Chamberlin 14:10

The other thing that stuck with me from that first day with her was, you know, she said, yeah, you can just hang out or go do something. I'll hang out with him and get to know him for a little while. And I came back about 90 minutes later with my spouse. She was trying to see if she could work with him, I guess, and her assessment of him was very simple. She said well, you brought him to the right place. He's a lot, and the expression on her face said it all. But I said, really she goes. Oh yeah, he's a lot, a lot, and I never realized that either.

Shannon Chamberlin 14:45

So I started to realize after she said that and after I started seeing the reactions of others who were there working with him and anyone that he ran into, I started to see life differently. I started to see how other people perceive him and us and our life and our lifestyle and everything. I started to realize that my life was actually so much more difficult than I realized or than I gave myself credit for. I never realized he was a lot. He was the only one I ever knew. He's the only kid I've ever had and I don't know. I didn't know what to expect. I didn't have anyone to compare it to. This was what I knew. I in a laughing way, he was so say,

Shannon Chamberlin 15:32

found out.

Shannon Chamberlin 15:33

Honestly, I was in a state of blissful ignorance, I think, and although my life was difficult and he was becoming more difficult with each passing day, I didn't realize how difficult the whole situation was and once I found out, I ended up feeling or recognizing that I was being victimized by him. It just my whole outlook on our life changed once I received feedback from others. We had been so isolated and just all alone with everything. I never had feedback from someone who knew better, you know. And then I got this feedback from her and her staff and everything changed with that and I did start to realize that I was kind of And a victim at that point and, yeah, I kind of wish that I had never found out the truth, the gravity of the situation.

Shannon Chamberlin 16:26

You know, it's better for him that we did, and it's better for us too, because we started realizing that we had to be more deliberate about drawing lines and setting boundaries and making things happen the way they needed to happen and not letting him just run our lives for us, which we didn't even realize we were doing. We just were trying to make him comfortable, you know, because if he's happy, then we're happy is what we thought. The damn thing of it is. If he's happy, he's not being challenged, he's not being pushed, he's not growing, he's not evolving and all of that stuff is uncomfortable for someone like him. So while it is uncomfortable and him,, it is necessary and we were kind of in a weird state Jacob there, you know, but yeah, I look back on that frequently. We were kind of in a weird state there, you know, but yeah, I look back on that frequently, honestly, and I wish that I never found out how difficult it really was and how we were viewed by others, because it did affect me and I think it started to affect just every aspect of the autism life. And, mind you, this was before his evaluations at 16 years old. This was before we knew he was in the severe category. We didn't know. So this was just the beginning and I felt so much heavier after that I started to really pick it apart and realize some things. But it is healthier in the long run to know I'm a little short on time today, unfortunately. I know my last few episodes have been pretty long, so you'll probably be happy with my time constraints this time too.

Shannon Chamberlin 17:55

I have one story I'd like to share with you before I go today, and this was probably one of my best memories with him. You know how I'm always trying to be honest with him and not hide things from him and make him understand how other people feel and all that kind of stuff. Well, while he was still in school and once he got out of school he always had this thing and most of the time he was joking. So, you know, if he was in a good mood or whatever, he would be laughing and he would say it, he would do something goofy and then shake his head and kind of put his palm on his forehead and in a laughing way he would say whoa, whoa wee, whoa, whoa wee. And that is actually saying what is wrong with me? But he was laughing, so I would just laugh with him. And then, when he would make eye contact with me and say it with still a smile and a laugh in his voice, I would say well, nothing's wrong with you, you goofball, you're just a goofball. And he Jacob would say oh, goofball, you know.

Shannon Chamberlin 18:54

But a couple of times during those couch crying sessions that we had, he would use that phrase, that question, and he was not laughing and I thought he was pretty serious. So he would say through tears wow, wow? You wow? wow we. And that was Aaaww Shazayum! I said,, we. He said Aaaww Shazayum, say nothing. I would just say nothing and just hug him, and sometimes I would finish that and say there's nothing wrong with you, buddy, you're okay. But one day I just felt . he was seeking something more. You know, oh, man, you know, it's funny how I can recount this story to my spouse or to my dear friend and I can say everything, just fine. But when I'm trying to recount this story for the entire world that listens to my podcast, it's really hard. It's really hard to relive it and not cry. Okay, anyway, so, god, okay, okay, all right. So here we go.

Shannon Chamberlin 20:10

One day I thought that he wanted more than what I had been giving him as an answer for the wall while we, he looked very serious and very much in pain or sad, and he looked like he was searching and seeking and needing more from me. He needed substance in my answer. It just was all over his face. So he wasn't crying at the time, but he wasn't laughing either. He was serious. It was a very different Jacob and a very different interaction than we normally would have. So he looked at me At first he was shaking his head and not looking at me and he said whoa, whoa, whoa, whoa, and I didn't answer him.

Shannon Chamberlin 21:07

And then he said it again and I said there's nothing wrong with you, buddy, everything's fine. And he spun around and he looked me in the eye with a dead serious look on his face and that seeking, searching for something substantial look in his eyes and he said what is wrong with me? The best that he could it was not wah-wah-wee, he just said what is wrong with me and it just hit me differently. And I stopped in my tracks and we just stared at each other for a couple seconds and I said okay. So I brought him in for a hug, I gave him a squeeze, I petted his head and I said, while I was hugging him in his ear, I said there is nothing wrong with you, jacob, you're just different. And we pulled away from each other and he was still looking me in the eye. So I just stood right there in between the kitchen and dining room with him and I said Jacob, do you think something's wrong with you? And he just looked at me. I said there is nothing wrong with you. You're different, jacob. You have something called autism. And he didn't say a word. He just kept looking at me.

Shazam

Shannon Chamberlin 22:20

So I explained to him a little bit about autism and I told him you understand things differently than other people. You hear things differently than other people. Everything feels different to you than it does to a lot of other people and your brain works differently than other people's brains work. And I just went on to tell him some of the specifics about him that were different. The more detail I went into, the more content he looked. He started to soften his expression. He started to form a very kind and soft and grateful little smile on his face. So I just kept talking and I was just pulling things out of my brain that I could show him is specific to him, and the more I did that, I guess he maybe just realized that I understand him more than he thinks I do. That's the feeling I got, anyway. So I explained these things to him.

Shannon Chamberlin 23:31

It didn't take very long, it was less than five minutes, for sure and when he had a really big grin on his face, I stopped and I said so there's nothing wrong with you, you just have autism. Okay, you understand. And he smiled really big. He said oh shazam, and I said autism. He said oh shazam, and I said okay, I like your version better. So you have aw shazam. What a good boy. Thank you for listening to that. If you have any stories to share, please do? I would love to hear from you. You hang in there, you're a superhero.