Parenting Severe Autism
Parenting Severe Autism
EP.43. Transformative Moments in Autism Education
This episode features a heartfelt conversation with my spouse Jason as he describes being a single father of a child newly diagnosed with autism, sharing insights about the journey through diagnosis, therapy, and the advocacy needed within education. The emotional rollercoaster of birthday reflections and the importance of understanding energy dynamics in their relationship forms a compelling narrative.
• Jason's experience and journey through Jacob's diagnosis
• The critical role of play-based therapy in early communication
• Insights on advocating for quality education tailored to individual needs
• Importance of emotional energy in interactions with children on the spectrum
• Reflections on milestones and gratitude in the context of family experiences
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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.
Shannon Chamberlin:For more information about each of these episodes, you can head on over to psabuzzsproutcom where you'll find the transcript, show notes, contact email, social media page, coupon codes and merch, as well as a link to support the show, where you can just buy me a coffee for as little as $1, and a portion of the proceeds from that program and from any merch sold will go towards helping other severe autism families in need who may not be able to afford the sensory items, therapy items or specialty foods for their loved one.
Shannon Chamberlin:Today we have an interview with Dad. My spouse, my husband Jason, is here with us and we get all of our questions answered about his first experiences and just his point of view, because it's going to be a little bit different from mine. One thing I never told you is that music on the intro and outro of this podcast was written by my husband, Jason. I wanted to have some nice music, but I didn't want to deal with copyright infringements and I just wanted to know that we were all a part of this as a family, so I thought I would ask Jason to create something, because he does play guitar and he's into music and that music that you hear is original, original created by him. Welcome, husband, how are you?
Jason:Hi, hello, so nice to be here.
Shannon Chamberlin:Did you have anything you wanted to say about the music?
Jason:Well, there is more to it. There is a bridge and a chorus. That's kind of an intro thing. There are lyrics to a song that I'm putting together, but it's a difficult song to finish. It's a hard song to face, you know with the lyrics and the emotion behind that.
Shannon Chamberlin:I feel that too. I've noticed every time I try to listen to it. Any more than what I've got on just my intro and outro, it does actually make me tear up. So it is a very emotional song and, as I understand it, you actually wrote this specifically for the podcast and, more importantly, specifically about and for Jacob right.
Jason:Yes, I started on the song before you asked me to come up with something for the podcast. So as soon as you asked me to come up with something, I already knew what. I already had it and I knew.
Shannon Chamberlin:Oh, I don't think I knew that detail.
Jason:Sure, I just it's been, it's been a kind of a secret project. You know, I have to be in a very specific frame of mind to approach that song.
Shannon Chamberlin:Yeah, that makes sense. I'm sure everyone listening can understand that it's an emotional roller coaster every day for us, especially when we tap into our emotions to pay tribute. Husband and I wanted to start kind of from the beginning, from the times when I was not here and I have no idea how things were happening. So my first question for you is what made you test him? Was it a specific behavior or a string of behaviors or a string of milestones not being met? Or was it maybe someone that you knew said something to you? I would like you to just tell your version of that.
Jason:Okay, so Jake was born in 2000. When 2003 came and went, he still wasn't speaking anywhere near the level of actually just wasn't at all at that point, because it was late 2004 before I heard him try to speak words on purpose and his first words were to infinity and beyond. So yeah, that was in August of 2004. But leading up to what got him diagnosed, that was interesting because I had never met anyone who had a child with autism. I had never met someone who had autism. I can't really remember too specific, but I think perhaps I was aware that there was a movie, rain man, about someone with autism.
Jason:The epidemic of autism was just beginning. At that time there was some milestones not getting reached. Yes, there was some physical characteristics that were happening. He always had eye contact and things like that. But he sensory wise, he had to have something in his hand at all times and he liked to shake things and kind of look at not directly at what he was shaking, but it was always at a like he was looking at it out of the corner of his eye and he would do that with no matter anything that he was holding. So he was always flapping and it was usually a Beanie Baby because Beanie Babies were everywhere back then. Every store you went in had bins and bins of Beanie Babies and his grandma, who suggested at first that we get him tested because she suspected that he had this autism thing I'd never really heard of, she had Beanie Babies everywhere. So he started, you know, very young, with flapping Beanie Babies and they make a sound.
Jason:You know that I thought that he likes, but really it was everything he picked up he liked to shake. I agreed that he definitely should have been talking, you know by now, and there might be a few things you know, like the shaking things, that I thought was strange. So, ok, let's get him tested. That was a three-day process. There were five, six different professionals that met with him. It was five to six hours a day for three days at Easterseals, so quite extensive. I'm not even sure everything that they did, but they concluded at the end that he was autistic. That's when I first realized that, yeah, things might just be a little bit different, you know, for this father and son journey than what I had in mind.
Shannon Chamberlin:Wow, so it was a grandmother. Was that your mom?
Jason:Yes.
Shannon Chamberlin:And she worked in health care, so she had some sort of knowledge or something.
Jason:She had some sort of knowledge of autism that I didn't. Maybe that was, she was just guessing at that point, you know. But with him being so speech delayed and everything, and maybe it was some of the fact that he did have peculiar mannerisms, you know that she was the first to say, hey, I think he's autistic.
Shannon Chamberlin:Well, thank you for telling that story. I do have a question about the testing. You said it was really long, with five hours a day or so and over a several-day period. Were you aware of the types of tests that were going on? Did you know what they were doing and what the results were supposed to be? I guess what I'm really wondering is how obvious was it to you or to the professionals during the testing? Did they give you any inkling during the testing, or did they just have poker faces and wait until the very end and then lay it on you?
Jason:I honestly don't recall too much of the detail on that. To be honest with you, I just I don't remember.
Shannon Chamberlin:Well, that's fair enough. I don't remember a lot of stuff. So I know that you went through like this play therapy thing once he did get diagnosed and it was all on video and stuff, just kind of trying to learn, I think, how to interact and how to communicate with each other. That's how I understand it. I never was really there and even when I watched the videos that you had available, I still did not know a thing about autism, because this was very early on, so I didn't really know what I was even watching. To be honest, about that, I learned later on that it was therapy for learning how to communicate with each other. Your most memorable experience or the biggest thing that you learned during those therapy sessions Because autism was so new to you at the time was there anything that stood out that we might be able to pass on to new parents who are just getting this diagnosis?
Jason:Right, yeah, so the idea of the play project it was the first therapeutic thing that Jacob experienced where a professional came out and set scenarios with different toys and just observed. Some of the mysteries of autism with these individuals is you have to observe their mannerisms and observe them to see what makes them happy or to see what disturbs them. You know, it's just a lot of observation. That was 90% of the play project. Through that she would basically watch the video with me and be like see how he is going with this. He likes the feeling of this, these wheels of the semi running over the carpet back and forth, like that, or he likes the sound that this toy is making. He doesn't like the sound this toy is making. One of the interesting things about Jacob when it came to playing was that he would never play with anyone. He would play near them but he would never actually play with them. That was something very, very interesting Until actually Mason little Mason Jacob would actually play with a big punch clown with one kid. I remember that very specifically.
Jason:But most of that was just you're building communication. You're building new ways of using your bells and whistles of a toy to set the stage for communication. Basically, at that point, that's all you're trying to do. You're giving words to things to help the language. This is a speech therapy. You know the truck is red, it's making an alarm sound. You know this is a fire truck. The lights are red and blue, it's got six or eight wheels. It's just really communicating on purpose through playing.
Shannon Chamberlin:Yeah, yeah, that's really awesome.
Shannon Chamberlin:I really feel like that points to what I've come up with just raising Jacob with you as far as the way that he learns and I know every one of these kids is different but I think that they all may have some things in common regarding how they perceive things or how they feel about things, or you know, there's just there's got to be some common threads there.
Shannon Chamberlin:And just what you were saying about the play project I feel that for our son, play as therapy does help him learn a lot.
Shannon Chamberlin:And that just takes me back to the idea that I'm working on with this blueprint that I've been hyping up a lot. I've been really excited about it and it's just because I think it's really important to remember how each one of these children is able to learn and absorb, and you know you can teach him that in the classroom or you can teach him that through play, and one of those methods is going to sit well and one of them will not. So I really think that just listening to that story and picturing him playing, he's always done well with play therapy of any sort, and I guess I kind of wanted to throw that in there for everybody listening, just to keep an open mind about the way that your child communicates, the way that they will learn, because you're going to learn the same way. That's my experience anyway. But what I do know is that anything where you try to put him in a box and make him conform to the way that things have to be done, he doesn't learn anything and it's a nightmare.
Jason:Yeah, so that's right. You're looking basically for clues. You pick something, anything and you interact with it. You're looking for a way to become a more effective communicator. It's a way to gain insight into that mind. It's got a lot of potential to help build skills and be able to identify things if you make them. The whole learning process becomes fun if it's intentional.
Shannon Chamberlin:When you were going through the early days of getting him diagnosed and then learning how to communicate and learning the things that the experts you were working with were able to pass on to you, did anyone that you were working with tell you that anything would always or never happen with him? You know what I mean. This is never going to work. This will never happen in his lifetime. You can never expect to see this from him, or this is always going to be a constant with him for the rest of his life. Was there any of that?
Jason:No, I don't believe. So. I really don't recall anyone putting any limits, you know, on what he was going to be able to accomplish or anything like that.
Shannon Chamberlin:The reason I asked is because when we first met, one of the things that we talked about was that you felt that he knows who you are, but if you just disappeared, he wouldn't really know the difference. And I was just wondering if that was something that, as a father dealing with this, if that's just something that was deep in your heart and soul, that you felt an absence of it, or if that was something that a professional maybe planted in your brain and said that.
Jason:Yes, that was something that I thought about at times. I think that there were a couple of factors that kind of made me wonder about that, one of which you know how some of these individuals on the spectrum they not only was he able to look everyone in the eye, but he would jump up on your lap and give you a hug and a kiss if he just met you. He displayed the same affection for absolute strangers. He treated them just like he treated me. So that was one of the things that probably made me wonder about that.
Jason:Also, there were things that I thought were interesting, like his first day of school. I was just terrified and a complete mess, and I know this is normal and everyone can relate to this. But yes, it's like he didn't even realize that I left. When I got there to pick him up, he never really cared. He didn't show that he cared if I was there or not. So it kind of made me wonder and, as you know, he was eight years old before he said daddy's home. Was he seven or eight, six? Yeah, daddy's home, you know, six years old. You know, I always kind of fantasized about hearing that.
Jason:And you guys worked all day on it one day and brought me to tears when I came home one day.
Shannon Chamberlin:So yeah, I remember that. Yeah, I just couldn't let that sadness go on for very long. Once I learned that that was the consensus, like no, no, I can't accept that. And he did. He allowed me to teach him that. That was really cool. I wonder if they knew back then how prominent OCD is with autism, because while you were telling that story, I was thinking about how absolutely obsessed with you and your presence he is now, and that of course, got me thinking about how obsessed he can be with a lot of different things. But it didn't show up for a long time and you know we can't go back and ask those people now, but it just it did cross my mind. I wonder if they knew that this autism is compounded by all these other isms in the psyche. I guess it is. Did they mention anything to you about stuff like that?
Jason:No, I don't think there was too much on that, you know, such as OCD or insomnia. I think part of that is because the epidemic of autism was still in its infancy Then. I think that the people today are a lot more educated than they were in the late 90s. I'm going to say this I might be off a few, but it was like one out of 96 kids were diagnosed Within a few short years. It was one out of 50. So, and it all happened very, very quickly, so they probably are a lot more aware today than they were back then. Basically, it was a learn as you go thing. When it came time for him to go to school, they had no idea what to do for him. What are we supposed to do as educators, as parents?
Shannon Chamberlin:That actually leads me into my next question. You mentioned that the first day of school you were really freaked out, but he didn't really know the difference of anything. When did you first realize that you were going to have to advocate for a?
Jason:special type of education for your son. Right off the bat they didn't know what to do. They told me they never acted like they had experience with autism. This was at the Homewood Heights School in Creve Coeur in Illinois and that's where the program was. So they're basically their hands are up there like I don't know and I'm like, ok, well, he has autism. I made some calls around to other districts and asked them hey, do you have any kids with autism? What do you do? They were very friendly and I told them my situation and they said well, come by, take a look, ask any of the questions that you want to. You know they were kind of great about that.
Jason:I went to three different schools. I saw things like PECS, the pictorial schedule curriculum thingy. You know that they let kids on the spectrum have a picture of the next activity. It was very good. It eases the anxiety by the kids always know what's coming next. They have a visual cue this is what's next. They're never in limbo and you know whether they're looking forward to it or not. They know it's coming and that's comforting. That's one example. There were light issues, audio issues. You know different things that they do out of regard for the autistic and special needs programs. So I basically took what I learned from these three schools. I brought him back to his school and said, okay, this is what they're doing and why, and they incorporated it. Yeah, jacob was the first one, and when Jacob left that program, they had a fully functional program that was appropriate for kids on the spectrum that were sensitive to you know, the lights, the noises, everything.
Shannon Chamberlin:Just a quick curiosity question how would you compare the reception of school faculty back then to your request to incorporate these things that your child needs? Compared to the reception of school faculty in more recent years, do you think that there was more of a willingness to work with you and your son on his needs back then? Or do you know what I'm saying, because we've experienced a lot of roadblocks and walls up and things like that in the recent past as he has gotten older and the rules for educating him have stayed the same. So was there resistance back then, or how do you? How would you gauge that?
Jason:I would say in the very beginning there wasn't any resistance at all. I think that there is something very valuable in understanding that you know nothing. That way, you are very, very open to learning what did happen. Let's fast forward to 2010, 2012. Now you have so many people they over and misdiagnosed autism that too many educators come to the table with they've already made up their minds. They think they understand autism.
Jason:Make, when you are dealing with an individual, is you think, because you met someone else with autism, that you understand autism? That's the biggest folly. From the beginning, you always have to understand that every individual is different. There are some common threads, but they are so different from each other that you at least have to empty your cup of what you're prejudging and everything else like that, so that you can accurately observe what is in front of you, unbiased by your previous experience, because your previous experience is going to serve you very little.
Jason:As human beings, we try to compress things into boxes so that we can understand them and we can relate to them, and you cannot do that with autism, because it is a spectrum and too many people think too much of their abilities to be able to relate to them and that closes their minds off to, you know, important cues and lessons that the individual with autism is actually is sharing or displaying. So I think that's probably one of the biggest things is back then it was new, no one had a clue. Everyone knew they were clueless. Fast forward, many educators thought because they went to a seminar and learned what the definition of autism was and shoved it into this very generic term. And this is what we do. They think they have a handle on it. Explain it so well, but it's true.
Shannon Chamberlin:It's my opinion that the biggest pain point is that it is an individual. It is the autonomy and the individuality that is still existing and is very much alive, and it's just, it's bundled up inside of this severe autism. It's covered, but that individual is still trying to get out. And then these people they think well, I learned the definition and I learned how everyone thinks that most of these kids learn and that's what I'm going to do. And then they stifle the individual and now they're not helping anything at all. These poor kids. They're just, they're not being considered as humans anymore.
Jason:Yeah, the biggest thing with the education system is the fact that it is a cattle call. They heard the kids and teach them all the same things and when you have class with five, six different autistic kids in it, you have five, six different ways you have to approach and communicate. That's what happens later on. Probably where educators are overall at now is they may think that they have a grasp on what they need to do, but how counterproductive that can be. I mean we went from I went in my personal experience to educators who were very interested, they were very engaged to learn about this that they had no idea about it 12, 13, 15 years later. Not only do you not have that advantage, now you have teachers that don't even listen to the parents. Okay, because they're educators and they've been educated on autism and they know exactly what they're doing. You remember the notebook? They stopped following directions and then they start to wonder why they're having so many problems because they stopped listening to me on how to get the best behavior out of Jacob.
Shannon Chamberlin:Right, yeah, In my podcast here I call that parent law. And they don't. Even when you point out the mistake and tell them the reasons, they think they know better and it really is maddening.
Shannon Chamberlin:So if any of you are going through that out there, you're not alone. As you mentioned, it is a spectrum. It is widely overdiagnosed, possibly misdiagnosed, and, as I've mentioned in many of my episodes, we never knew that our son had severe autism until many, many years later. How far do you think they've come at the schools for this type of autism, or is there even an answer for that?
Jason:I'm really not sure, to be honest with you, if there's any difference at all. Now it's been a few years since Jake's even been a student, but I can tell you that overall I saw no progress for the last 10 years. He actually was at school. Yeah, I saw very little. That you know. Jake needed a personal assistant basically at all times, you know, and that's, you know, really a stretch for these schools, you know, to be able to to do that for every single kid. I didn't see a lot of kids like Jacob in any program at any school. I mean, it's almost like even for being autistic he's exceptionally autistic.
Jason:So that was very challenging for educators, you know, because they they have to have this feeling like they know what they're doing. They have to have a feeling of some direction to take with quote, educating this person and not enough of just observation and being around. I think that the most overlooked thing that kind of I would call it an elephant in the room, but I don't even know if most people even understand that there's an elephant in the room but that elephant is energy, that there's an elephant in the room but that elephant is energy, the most important thing for educators or anybody to understand when you are dealing with someone who has severe autism is that they are very sensitive to energy. They are going to pick up on your energy. You can't BS them the way that you can other people, because they communicate on a different level. You know they really do.
Jason:We've seen this with Jake time and time again how sensitive he is to energies. So if a teacher is going to have a smile on her face but nothing but funkiness on the inside like I can't wait for the bell to ring, you know, or she's already thinking about something else or whatever, and this, and that no matter what she's saying, how it's being received, you can't hide that they're very sensitive to energies and it takes a very special person to deal with them in an academic environment and people to realize that you know 90% of that is going to be just to be present and observed, because they're all enigmas, they're all, they're all mysterious, they all have a code and you have to crack that. That's the idea. That was the idea with the play project and everything else is you're looking for clues, clues to help you communicate.
Shannon Chamberlin:Yeah, I agree, and I thought that we shouldered a lot of the responsibility of helping them understand. We never wanted them to go through. You know, like you're just driving along on dry pavement and then all of a sudden you get stuck in the mud and now you can't get out of it. You're spinning your wheels and the kid's on the other side of the big mudslide and you can't get through it. And we didn't want education to stop for our kid or the other kids around him.
Shannon Chamberlin:So we, I feel, shouldered a lot of that burden and went to each educator and gave them the playbook. We gave them the playbook, and not only that, but we advocated for more therapy time in school. They were unable to provide that, but the reason that I think that therapy was going to be important is because they're still observing the child. The teacher doesn't have time to observe. They need to rely on the people who observe the child and provide therapy and learn how to communicate and sometimes that communication has to change day by day. But they can at least add to the playbook and then give that back to the regular teacher and say this is how you work with this kid. But I really did feel that we tried to eliminate the getting stuck in the mud. We tried to eliminate a lot of the problems that we foresaw and they were very non-responsive, not interested in receiving that information.
Jason:Patience is the biggest thing that they lack. Not patience today, but the long view of patience, patience to build a rapport over six months or a year, of just being next to a nonverbal or very speech delayed, autistic person. That's what's missing. Everyone's in a hurry. You know everyone wants to have an IEP and we want to meet these benchmarks and we want to meet these goals. They're obsessed with progress and while I agree that it's important to be able to maybe draw some lines like you know okay, we expanded our vocabulary from five words to 20 words that progress is great, you can't force it and if you do, you're going to bring forth an energy and a behavior that is counterproductive. I always started every IEP.
Jason:Every time I sat down with someone new that was dealing with Jacob and I always told him the story, the same story, and it was the story of when we were swimming in the pool. One year, for the longest time, he loved me to put a life jacket on him and pick him up and throw him in the water. He loved it. He loved it. He loved going under the water and popping out like a bobber or a cork the next year, instead of us getting into the pool and swimming around and having fun and working up to that. I tried to pick up right where we left off. Well, he kind of forgot about how much fun that was. And I kind of freaked him out because when the pool was open I put the life jacket on him and I picked him up and I threw him in the water and I was expecting him to come up and to be laughing and cheering the way that he was, you know, five months, six months ago, whatever you know and he didn't appreciate it at all. He got very upset. It was like what the hell are you trying to do to me? And it was two and a half years before he would let me get in the pool with him again. If I sat down on the opposite end of the pool and put a toe in the water, he would get out of the water and wait for me to get away from the pool until he got back in.
Jason:And it was two and a half years later when we finally was able to swim together. I about cried. I didn't know if I was ever going to be able to go swimming with him again. Two and a half years went by. We together. I about cried. I didn't know if I was ever going to be able to go swimming with him again. Two and a half years went by. We were at a hotel. You remember that day? Yeah, I try to explain that to these educators. If you upset him, if you betray him in any way and he knows and he will not come here, he will not. No one will hold a grudge like these kids, and they don't even know the meaning of the word. But if you burn them, you have burnt them forever.
Shannon Chamberlin:Yeah, absolutely, and that's a great story to tell to anyone who has never met him and who has to plan on working with him for, you know, four to seven months. It's a shame that no one wanted to listen. I have told that story a couple times, not to the detail, but I was just thinking. I think we were at Chula Vista when he finally warmed up to you. We were traveling for work and we were there for a couple of days and we were down at that pool for hours and he would not.
Shannon Chamberlin:It took almost the entire stay at that hotel before he allowed you to be in the pool and I do remember you got your toe in there and then you got your bottom of your leg in there and he had big eyes looking over his shoulder while he was trying to run away and get as much water between you and him as possible and he was going for the ladder in the deep end while you were getting in the shallow end and it was an ongoing process and finally he allowed you to come up and give him a hug in the water and pick him up, and that seemed like more than two and a half years to me, but yeah, it was forever, and that process of watching him warm back up to the idea of the person in the world that he trusts the most with his life and with everything in his life could not get close to him in his favorite part of life, which is the pool.
Shannon Chamberlin:That was really hard for me to process and I wonder if the grudge holding that you mentioned is maybe because he is also very aware of his sensory processing issues and he felt perhaps let down by the people who he has put in place to guard him against these sensory processing issues and so he had to throw up a wall. And maybe that's what it really is and we think that he's holding a grudge, but he's just trying his best, the only way he can think of, to regulate what got shattered a little bit for him and I'm really glad he got over that. You can run his whole life by that story, absolutely.
Jason:Yes, I think it offers a clue, it offers an insight and a glimpse into the way that he thinks. And it's important for us to do two things at the same time. And it's challenging because you're not always going to be perfect, you're not always going to have inexhaustible energy, you're going to hit exhaustion, you're going to hit every kind of emotion and you're just not going to have time for the bullshit. At the same time, you have to check your energy. You have to try to not project a funky, funky energy that they can feel. You know it's a very, very tough thing to accomplish sometimes, because we're not perfect. They're all different and none of them come with an owner's manual. It's important to learn about the energies that they thrive on or that upsets them, so that you can kind of curve yours to.
Jason:You know, have a productive day. You know, sometimes it's important. Just okay, this is where I'm at today. I need to recognize it. I don't have it today. I'm not going to be able to do this. I'm not going to be able to dance for you all day. I can't sing and dance for you all day. Today I can't do it.
Shannon Chamberlin:And then you can take some sort of appropriate measures to safeguard your own sanity me and I was not growing up with autism, but it always irritated me when I was a kid and I was insulted by it.
Shannon Chamberlin:But it's the absolute truth that it's not my job to entertain you and he actually he feels the same way I used to when she would tell me that you know, a little insulted and like, well, yeah, it is your job.
Shannon Chamberlin:I mean, takeaway on that is that he will absolutely exploit the energy that you're trying to hide.
Shannon Chamberlin:You mentioned earlier about if someone is, you know, trying to hide everything and wearing a smile on their face, but in their heart they're feeling angry or pessimistic in any way, it's not going to work and I truly believe, especially with Jacob, that he will exploit that. I told the story a long time ago about us being at the state park and the old ladies coming into the water with their done up hair and not wanting to get wet, and as pretty as they looked and as nice as they looked on the outside, he could read their energy that they were pissy about him splashing around in the water in a perfectly public lake where he has every right to splash, in a perfectly public lake where he has every right to splash, and that is one example of him exploiting that negative energy that he's feeling from someone he doesn't even know, and hopefully you guys can pass that on to anyone who will be dealing with your children, if you haven't thought of it already.
Jason:Right. I don't think it's wise to set your expectations too high for compassion from these individuals. They will club you like a baby seal and you know, not think anything of it until you are absolutely shattered, and then they'll receive that energy and then they will sincerely apologize at times. But I mean, you know, you got to be broken to a million pieces all over the floor and then all of a sudden they'll get happy. Yeah.
Shannon Chamberlin:Or he'll apologize sincerely and go upstairs and create another hell mess for you, that he'll just keep it quiet until he thinks you're ready to know about it. The next couple of questions are a little more heavy and maybe a little more triggering for people. So I'd like to close this episode with a recent birthday story and a message of gratitude, and we'll move the remainder of this interview with Dad into my next episode that comes out next Wednesday. If you are in the United States, you're in the time of Christmas right now, and this is a challenging time for almost all of us in this boat. As you know, we just had this issue with the what do you want for your birthday? Because our son's birthday was just the other day. He just turned 24. This is kind of compounded on us. It was a very hard day on the 19th for him to turn 24. He did not want any part of that day. It was a nightmare of a day. I cried almost all day and I went to bed early, and then it kind of even affected me into the next day, which was yesterday, you know. And then we have Christmas Now.
Shannon Chamberlin:As you know, we don't do Christmas, and that's largely because of Jacob's preferences and behaviors and I have come to learn to be grateful even for that. I'm grateful now that I don't have any Christmas decorations I don't even have any and I don't even look at them and I don't even care. And I'm grateful because I have Jacob and he keeps me very busy. And if I had to deal with finding my decorations, putting them up, fighting him and my probably my husband about the decorations and then remembering to take them down at the right time and put them away nicely, while also still having to take care of my motherly duties, you know, I just don't think that's for me and I think that Jacob did me a favor.
Shannon Chamberlin:And so if you're in this boat and you're a little bit sad, you know it is the holiday, or maybe your kid did just have a birthday and they don't know any different, I'm sure you can find something. You know, maybe it's a blessing that your child doesn't know that their birthday is supposed to be special. Maybe you know, because what's the alternative? The alternative is a kid who knows exactly how old they are and exactly what all their friends did for their umpteenth birthday, and you're not able to provide that for them. So I mean, there's always something, and I'm grateful that he doesn't have these great expectations for me to live up to. He didn't expect me to give him a car when he turned 16. He didn't expect me to allow him to go out drinking and roadloading with his friends when he turned 21. No, he didn't even want me to allow him to go out drinking and road loading with his friends when he turned 21.
Shannon Chamberlin:No, he didn't even want me to celebrate his birthday the other day, Okay so hey, thanks, kid, you know, because I was having a hard time of it.
Shannon Chamberlin:So it all worked out. You know I am grateful for these things they do. If I concentrate on them, yes, they get me down, they make me sad. I love Christmas lights, I love all that stuff, but I love my sanity more and I'm not going to dwell on all this stuff that I can't have and I can't do because my kid doesn't like it. I know what he doesn't like and I'm grateful for that, because why fight it? I know that he doesn't like pictures of his half sister around the house. Can't have him on the wall, okay. So guess what? No pictures. I know he doesn't like messing around with Christmas ornaments anymore. Okay, no more ornaments, you know. At least I know what he doesn't like.
Shannon Chamberlin:I remember several holidays ago we actually came here from Wisconsin we were still doing Christmas, so we came all the way here. Everyone was happy to see each other, everything was going great. We kind of mixed his birthday and Christmas all together. For all of us neurotypicals it was a really great day, but Jacob didn't want any part of it. He sat there on the couch and screamed and whined and cried and doom-voiced and just stomped, and he just did all the things that you would not expect him to do during a happy moment where he's getting showered with gifts and we didn't know what was wrong with him. Why is he being like this? This is everything that he wants. His family is here. He's the center of attention. We're trying to be not like overly attentive, but we're giving him everything that he ever wants, because he wants to be on display. He wants everyone looking at him, kissing him, hugging him. He wants all the presents. We're doing all of the things and he's very unhappy.
Shannon Chamberlin:Well, about three hours later we went to bed. His grandpa comes and knocks on our door and says you need to get out here. Well, Jacob had puked all over the house. He was sick. We didn't know it. So I'm glad and grateful when I know what he doesn't like. I know why he's acting the way that he is. I know how to observe him while he's doing it and try to figure it out. I know that he needs me to figure it out and I'm grateful for all of this knowledge.
Shannon Chamberlin:Turns out we all got sick. It wasn't anything that we ate, because we all ate different food that day and while I was going down the stairs to try to take care of him, it sounded like there was a freight train running through my head and I couldn't even walk. I couldn't even keep my eyes open because I was so dizzy and it was so loud in my head. And then within an hour my husband was sick on the floor. I mean, we were all messed up, but Jacob was sick. That's what was going on. It wasn't anything to do with anything else. He just didn't feel good and he couldn't tell us.
Shannon Chamberlin:So I just wanted to tell you that story, to let you know that you are being blessed when your kid is able to show you that they don't like something. Maybe you do have to take it out of your life. Maybe you do have to put a little display up in a private room of your house so you can enjoy it, but that's okay. At least you know, at least you don't have that building thing that is just going to fall all over you and disappoint you. There's definitely something to be grateful for in every little lesson that you learn. I hope that helps you as you go through this Christmas holiday. Thank you so much for joining me and my husband in this special episode. You hang in there, you're a superhero.