Parenting Severe Autism
Parenting Severe Autism
EP.37: Creative Parenting and Severe Autism Insights
After years of navigating the unique challenges of raising a child with severe autism, I've amassed a treasure trove of stories and insights that I’m excited to share with you. This episode takes you on a deeply personal journey through my life as Jacob’s mom, highlighting the power of community and family in shaping his world. You'll hear about the creative ways we've fostered understanding and acceptance in his school, thanks in part to my husband’s proactive outreach in Wisconsin.
Parenting Jacob is a delicate dance of nurturing his individuality while ensuring our family dynamics remain supportive. I recount poignant moments, like the choice to prioritize Jacob's self-esteem over a less-than-flattering school picture, and the emotional aftermath of his transitions to new schools. These stories underscore the importance of routine and personal expression for Jacob, and reveal the profound impact of small adjustments and family support on his well-being.
My father plays a starring role in this narrative, serving as a pillar of advocacy and support for Jacob. His involvement ranges from medical oversight to educational advocacy, demonstrating the critical role of a family in navigating autism. As we explore these experiences, I also touch on the intriguing effect of supermoons on Jacob's behavior, offering a unique perspective for fellow parents. Stay tuned for an upcoming interview with my spouse, where we’ll dive deeper into our family's journey and strategies.
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Hello and welcome to the Parenting Severe Autism Podcast. I am your Sh., . I'm so happy that you're here with me today. I've been looking through my records and I'm about a year off. So everything I said was maybe in 2012. It's actually 2013 and so on. I don't know how that happened, but of course it's all a blur. I'm sure you can understand. Remember you can always support my podcast by donating to a number of different things that I have, if you're interested. So I've got the Buy Me a Coffee program, which should be available on the donation tab on my podcast. You can also go to PSA short for Parenting Severe Autism, psa. buzzsproutcom, and you should be able to see all the products and all the goodies that I've got listed there and at the bottom of my podcast page on every episode I've got the links for the merchandise and all that stuff, and you can always just leave me a note. I love notes, I love to know how you're doing and if this is helping you or if you just need to vent, that's fine too. You can reach me on my Facebook page or on my podcast. There's an option to text me, I believe, which I don't know if it works or not, but you can also email me at contactparentingsevereautism at gmailcom.
Shannon Chamberlin:I've been having an interesting time looking into all of this stuff. I know that I took all of Jacob's notebooks and put them in a pile or in a box or something that says Jacob's notebooks, specifically for the purpose of accessing them for accuracy during these episodes. And the funniest thing is that I cannot find them anywhere. But I swear I'm going to find these notebooks. I know they're in a special place. They're probably very close, but that's okay. I've got plenty to talk about. One thing I wanted to mention that might be helpful if you are in the situation or if you're the kind of person that can do this kind of thing.
Shannon Chamberlin:My spouse went to the school in Wisconsin that we were only at for a year and then he went to the next school in Wisconsin where we lived on that big piece of land and everything. He went there so that he could actually speak with the class. He wanted to talk to the kids in the classes that would end up being Jacob's peers and he was hoping to educate the kids about our son before they met our son, so that they would understand the importance of trying to lift him up and make him feel helped and appreciated and allow him to be playful and just allow him to exist in his own way, instead of expecting him to conform or act a specific way, because, as far as we knew, there were no other kids quite like him in the schools and we had not yet been informed that his autism was the severe sort. So we were just dealing with these things in the best way that we could think of, and both of us are public speakers as far as being in sales for all these years. So it was no big thing. He just went and talked to these kids and it worked out really well. So he explained some things about our son and about the way he will respond, what he'll respond to and what he might need help with and all of these types of things. It worked out really well because some of the kids ended up kind of taking on the big brother and big sister role at school. So that was a huge blessing getting the children acclimated to the idea of our son before they actually met our son, to the idea of our son before they actually met our son. Everybody loves our son, but he can be a lot, you know, and we just wanted to make sure that everyone got started on the right foot, and that was a great thing to do, so that might help you in the future.
Shannon Chamberlin:The other thing I was off on with timing was the amount of time he spent with his grandparents. Last episode I said he was there for a month and now that I have looked through text messages with my best friend and all this stuff, I realized that, yes, the grandparents did still have the pool, and that is why Jacob was here for actually two months, believe it or not, and his symptoms had not yet shown as anything people couldn't handle. Whether it was severe or not. He was a good kid and as long as he had access to things that made him happy, like a swimming pool and pizza and good food and love and attention, he was okay. So we left him here for two months altogether so that we could clean that house, get his room ready, get our business set up.
Shannon Chamberlin:We needed to get him registered for school. There was just a lot to do and we thought, well, it'll be great for him to just visit the family that he misses so much, because the siblings were here still and the pool was here, the mamaw was here and the papa, everyone that he loved and probably missed on some level, was here. So why not? Let's leave him there. We can trust the family, everything will be fine, everyone will take care of him and he will enjoy his summer. And then, when he gets home from spending June and July at Mamaw and Papaw's, he'll spend a little bit of time with us and we'll get him going with school. And you know good things right? So that was the thinking.
Shannon Chamberlin:We did get his room completely set up, big pimpin'. He had everything that was awesome in his room. He had a huge closet, so that was helpful in teaching him how to put away his clothes and, given his OCD tendencies, it worked out really well because I put an entertainment center in his closet. So he had a shelf up above. He had the regular hanger rod going across the whole closet and then beneath the hanger rod he had this big entertainment center and the doors would close perfectly. And so the entertainment center had six different shelves at tiered levels and he was able to choose. He and I worked together on where do you want your clothes? So the shirts, like t-shirts, they would hang. We put the turtlenecks on the shelf above and any other bulky things. Then his pants we decided together would go on the main shelf where you would normally put a TV on an entertainment system. That's where his pants went. And then on the left lower tier he had his socks and on the right lower tier he had his underwear. And then on the left lower tier he had his socks and on the right lower tier he had his underwear. And then on the bottom tier, I think he had like r2d2 or something. It was pretty cool. Um, he had a fish tank. He had just all kinds of cool stuff.
Shannon Chamberlin:He enjoyed being able to choose where his clothing was going to live and it lived there all the time. And he's not great at folding his clothes, but I had him fold his clothes. I would do some of them, but I let him do the pants, and he's not great at folding his clothes, but I had him fold his clothes. I would do some of them, but I let him do the pants and he's terrible at it, but he could do it. I let him do the pants, socks and underwear and I would just give him his clothes and he would put them away. He would stack them nice and neat. And he did really. He tried really hard. It gave him something to focus on and it was a weekly thing, so it was a nice bit of routine to throw into his new routine.
Shannon Chamberlin:You know he needed things and now that we were more stable and not living out of boxes, I wanted to make sure that he felt useful and that he felt like he was in control of everything in his room. So that was working out really well. Another thing that worked out really well was that, well, there were a couple things actually working out really well. Another thing that worked out really well was that, well, there were a couple things actually. One was that there was a laundry chute on the same level, on the second level of the house with our bedrooms, and he loved that thing. He always called it the scary hole, so when his clothes were due to be washed, I would have him throw them down there. I really miss having the laundry chute, because it just gave him something to look forward to and also something to fear.
Shannon Chamberlin:He loves being scared. He'll attach craziness to anything like the FBI warning on old VHS tapes where the screen turns blue and it says FBI warning and it's, you know, about pirating videos. Well, for some reason he attached scary feelings to that and he'll search for all these years, as long as I've known him, to be able to search something on the internet. He'll go on the internet and he will search for FBI, blue warning and that's. He'll run around saying, oh, fbi, blue warning, blue warning, fbi, blue warning. That's a thing for him.
Shannon Chamberlin:You know he also has the MGM lion that scared the shit out of him when he was a baby and not paying attention. He knows that the lion roars but he wasn't looking at the time that it roared one day and it really scared him and he hated that, but then he loved it after that. So he's always looking for the lion to roar. Recently he started searching I think it's Lighthouse Productions, it's just the logo for Lighthouse Productions and he just brought me up to the TV the other day to show me. Actually, he was trying to hide it from me. I was like I don't care, watch what you want, what is it? You know he's like, oh okay, he turns up Lighthouse Productions and he went through all these conniptions just to bring up the one on YouTube that I was like what is that from? And it was Army of Darkness. They're the producers of Army of Darkness, apparently. So you never know, but he's always attaching scary emotion to meaningless things, otherwise meaningless things.
Shannon Chamberlin:Oh, the other thing that worked out really well was, while Jacob was gone and we were getting the house ready, we took all of his school pictures and hung them up going up the stairs in succession. One funny thing about that is that almost every single school picture that he ever took it looks like they caught him right before he snapped out. You know, and you know there's the, there's the meltdown, but then there's the I don't know like the pre-meltdown, where it could go. Either way, it's just the bouncing off the walls and it just you don't know. He's either going to go bounce around and be happy like Tigger or he's going to go into a full meltdown. There's that little thing, and that look in his eye is in almost every school picture that he ever took, and it just makes you laugh. If you know the kid, you know that he is about to start some shit, and those people were really in for it, and they caught him just at the right time, and you can just imagine what must have happened after that flash went off.
Shannon Chamberlin:There was one picture in particular, though, we put this really beautiful shirt on him. It was a beige button down, it had a mural of wild horses running on it, and it was just perfect for him. The picture was the worst picture ever. We were so mad that they even sent that home as a possibility and wanted us to pay for that, and it ended up not happening. I don't know how, but we didn't have a school picture for that year. I mean, we have it, but just awful. Other people say, oh, you should have kept it because it's a piece of his history.
Shannon Chamberlin:I'm just like I don't want him seeing himself in that state, because if we hang that up and he thinks that's okay and acceptable, he loves to look at himself. He's like a peacock. They love to look at themselves and they attack their reflection and they do tricks for themselves. That's just what he does. If he can see himself in the reflection of the glass, on the picture that is framed and on the wall, that's trouble, especially if the face looking back at him is an ugly, scary face that he made and that we hung up in support of it. He will absolutely blow that up out of proportion and use it all the time. So we just we could not use that picture because of the way that he is, but the rest of the pictures were very cute.
Shannon Chamberlin:He loved being the center of attention going up the stairs. The nice thing about having those pictures on the wall is it gave him a sense for decorating. I used that every year for the holidays, when he would come home from school with projects and pictures and all of these things. Instead of putting them on a refrigerator or something like that, I would allow him to choose where we hang it. So it was a big ritual. Every time, no matter what it was, if he came home with something that he made, I would stop what I was doing and we would go grab the scotch tape. I only had to show him one time that I wanted to hang it up and he, once he realized what I was doing, he got so excited and started giggling and flapping and jumping and doing all the happy things. So that became a ritual and I would allow him to choose where do you want this one, where do you want this one? And he would decorate the whole house with all of his stuff that he made at school and I think it helped him with the whole school thing. You know he always loved school, but the older he got, the more restrictive, I guess, it got, the more conformist it got and the less enjoyable it got. So anything that I could do to help him look forward to more of that whole thing, I was definitely willing to do it. So I wanted to tell you about this first couple months of this new school. His dad went and talked to the class. Everything was going great, as far as we knew, with the kids for the first couple of weeks.
Shannon Chamberlin:Now, when we first moved away and went to the Northern Illinois place, we noticed that the family never came to see us. We were always coming to see them. You start to realize that maybe nobody cares as much as you thought they did. So having the mamaw and papaw not interested in coming to see us for almost the entire four years that we lived in the Rockford area was a little damaging. Finally, the papaw decided to come up and then he decided oh wow, they pick really cool places to live. I don't think I want to leave.
Shannon Chamberlin:So he was spending a lot more time at our place. Towards the end of our stay he was there more often than we ever expected and then he spent a hell of a lot of time during that one year in the first Wisconsin house and then we weren't home with Jacob very long in this new house before the Papaw came, and I'm pretty sure he didn't really leave the whole time we were there. I mean, usually he was there and school, I believe, started at the end of August up there by October it was usually pretty cold and I think that the Papaw came to see us around October. And here's the thing that I remember Everything was not going great, but things went downhill quickly for Jacob and I couldn't figure out what was wrong with him. But there's a lot to tell here. But I just want to start off with we totally didn't expect it to go wrong.
Shannon Chamberlin:We sent him to school. His dad would drive him down to the end of the driveway so that he could get on the bus. I would pick him up because his dad was usually out at an appointment already. It started to happen very regularly that he would get off the bus. The bus is stopped on a paved road and the doors open onto a gravel driveway. That ends up splitting Right where the gravel driveway meets the paved road. He gets off the bus and instantly collapses onto the rocks.
Shannon Chamberlin:And this used to be something he would do when he was younger. He never actually outgrew it. We just had to really start yelling at him because he's too big to do it now. But he would just go, oh, and then fall, and that was just his indication that he needed a little love, he needed a little comforting. And we call him Diga. I don't know if I ever told you that, but his flapping noises. He usually will go digga, digga, digga, digga, digga, digga, digga. So everyone calls him Diga and digga, do and diggy.
Shannon Chamberlin:When he would collapse when he was younger, and he would just make that groan and fall down, someone would always say, oh, diga's down. He would say Diga's down, you know, and sometimes he would say Jacob's down. We would just kind of glorify that, pick him up and, you know, wipe him off. Oh, it's okay, what's the matter, you know, whatever. Well, he starts doing this as soon as he gets off the bus, and now we're talking about like a 13 year old. That's not okay. And I just I was like what is this? I would have to get out of the truck and go get him and say, okay, dig us down and he didn't respond the way he used to. He was not happy. I don't know what was going on. It couldn't have been the same thing all the time, but there was just something wrong again and I couldn't figure it out. So, let's say, four out of five days a week he would collapse onto the gravel and this only happened for a couple of weeks. I would tell his dad, we would contact the school. They just oh, I don't know. You know, maybe he's tired or whatever. You know, this is all going on and we're trying to help him keep it together. His grandfather comes to visit and probably never leave. I think this is one of the biggest things that sticks out to me for the first year of school in that area and it's actually nothing to do with school at all. It's the fact that, while we were trying to get him acclimated to a new living environment and a new school and new faculty and new kids, and his papa comes to our house to stay.
Shannon Chamberlin:At the time, we were all smokers. I've just passed my 10-year quitting anniversary, though, so I'm good. Well, this house had two different living rooms, and the one that we used the most had a door that went out to the garage and then the garage was just right out there to the driveway, of course. So I came outside and I saw that everyone was standing in a circle kind of in the drive. And as I walked up, jacob was standing within a foot and a half of his grandfather, face to face, and he says something like Peppa, and his grandfather takes a big drag of a cigarette and blows it right in my son's face, right in his fucking face. I was so pissed, I what, what, what is wrong? What kind of person would do that to any other person, especially someone like Jake, who's completely clean? I mean, this boy, he's spick and span. You know, he is this boy, he's spick and span, he is untouched by anything bad. You know what I mean? I could not believe it. I was so mad.
Shannon Chamberlin:And then, within a week, jacob was sick, and he was sick for a couple months. I think he ended up with a sinus infection. It ended up to be that every year that school would start when he went to school. Anyway, he would get sick. You know, you take time off for winter break, you go back, he would get sick. And then you take time off for spring break, and then you go back and he would get sick. I don't know. Was it school, you know? Was it the kids at school passing germs around? Or was it the fact that he just inhaled somebody's cigarette without even asking, and he of course has no idea what's good and bad, so he just breathed it in like normal? He just stood right there and took it.
Shannon Chamberlin:It's that kind of stuff right there that makes you know he can't tell you, he can't defend himself, he doesn't have the sense to move out of the way, he doesn't have the sense to back away from someone who's smoking. I mean, you constantly have to tell him. I always hear his grandpa telling him you're going to get burned with the cigarette. I want you to back away from me, get off of me. I'm smoking. You know he has no sense about anything, right, and it's just like okay, I expect the man that's my senior to have enough sense about it to not do that to my kid.
Shannon Chamberlin:I was abhorred.
Shannon Chamberlin:I just could not believe that he would do that to his own special needs grandson, what the fuck is wrong with that man? So I was pissed and I was pissed at him. Well, I've never stopped. I've never stopped being mad at him ever since then, and it's not just about that, it's just that it got worse, you know. So that was my first real experience with a family member disrespecting my son like that and not caring about his health, well-being or needs at all right in my face, just blatant blah, you know, just treating him like a freaking ashtray. And you know you just start wondering about. It's hard to tell where things go wrong when everywhere around you people are wrong towards your child. It's not helpful at all. I expect family, who loved him before I knew him, to do better. That brings me to my feelings on this constant family presence. His grandfather never really did leave.
Shannon Chamberlin:I mean every once in a while when we wanted him there on purpose and we would invite him to stay for a specific amount of time and do specific activities with our family, his wife would call and say that she needed him to come home for some stupid reason. But otherwise he was always there and not contributing, not helping with our son, not helping with groceries, not helping with chores, just being a dependent. I would have to beg his wife to send money. He would invite himself to the store every time we went and just put stuff in our cart and not pay for it. And it was just those two first years. We actually ran out of propane. There was a propane shortage. So that means it was really expensive to keep my kid warm and nobody cared. Nobody contributed to the firewood, nobody contributed to buying propane, nobody contributed to groceries. I mean, we were just supposed to absorb all of this and have extra family there as extra dependents.
Shannon Chamberlin:I just I wasn't cool with that, and I don't know if Jacob was cool with it either, whether he was or not. Is it just because I was pissed off or or was there some sort of imbalance because it was supposed to be the three of us, sometimes it was four of us, sometimes it was five or six of us, because there are that many family members who love the woods and think that they're welcome. That interrupts the balance of life. You know, when I'm feeding my kid and the other people are there expecting to eat his food that I made specially for him and then starting fights with my spouse about how I am not feeding them. Yes, this kind of stuff happened, and I know that Jacob is not oblivious to all of it, and I just I kind of wonder if the imbalance was detrimental to his development during those years, or if he just went off the deep end by himself. I don't know.
Shannon Chamberlin:But I, man, I really feel like our family didn't get a fair shot at being a family once we went up there. It was supposed to be the perfect environment, with all the serenity and the outdoor activity possibilities and all of the things that were supposed to be great. I really feel like everything was muted by the presence of people who are not part of our family unit, extended family. I just I don't know, you'll never know, but I kind of feel that the constant family presence of people who were not there for the first four years of our small family life, I kind of feel like it messed up the balance. It's easy to place blame I know it's easy to blame the teachers, it's easy to blame this bus driver, it's easy to blame the extended family, it's easy to blame everything but the reason it's so easy is because we don't know. He is not capable of telling us what exactly the problem is, or if there is a problem. We are always left to our what-ifs, and maybe it's this and maybe it's that.
Shannon Chamberlin:There are so many, so many examples coming up in all of my episodes about this type of thing, the way that people disrespect Tarrant Law and the way that they disrespect our son, and it really it just turns my stomach to think about it all. So these episodes, you know they will be short as far as the actual stories, because I just man, they make me sick. You know, I really thought that having all of that land was going to really be therapeutic for our son because he could just be himself and not worry about stuff. When we were in Northern Illinois he was in the Special Olympics a couple years in a row. He seemed to really love that and everyone involved really loved him being involved. It was a great thing. Except it was the funniest thing because it wasn't really that loud there, but we were indoors and there were a lot of obstacles and you know things for him to do. He actually ran through all of the obstacles that he could with his hands on his ears, even going through little tunnels on the floor and stuff. He had his hands on his ears and this was before we were wise to the fact that maybe he should have some noise canceling headphones, you know. So I mean we were just bare bones autism back then and this was in like 2009, 2010. And those dates are accurate, by the way. But yeah, he wanted to do the sport but he couldn't handle the noise which, like I said, wasn't even that bad and I felt terrible for him. So I thought, you know, this might be fun.
Shannon Chamberlin:I have tried since then multiple times to get him involved. I bought a net for volleyball and badminton, we bought the wiffle ball thing recently, and just so many different things. So I tried to teach him volleyball, tried to teach him badminton. He hates everything. Every time I see him struggle with something, I try to remove the thing that makes it a struggle and then recreate it for him, and he hates it. So I don't, I don't know. I don't know the answers to helping him be happy and helping him enjoy things. I just don't get what it is that I can do for him sometimes. In my next episode, I'll talk about what exactly was going on when he was throwing himself in the driveway and what we did about it.
Shannon Chamberlin:The other day, he wanted to have cinnamon rolls. We have these gluten-free cinnamon rolls that we'll buy him once in a while. Saturday morning, he came down here and said he was hungry. As usual, his dad was like okay, I'll be up there in 10 minutes and we'll make you some. What do you want? He said cinnamon rolls. He said, okay, we'll make you some cinnamon rolls, I'll be up there in 10 minutes. So in probably 15 minutes he went to get the cinnamon rolls and saw that Jacob had already helped himself to the cinnamon rolls, which normally we're like okay, cool, he's being a big boy If it's some of the gluten-free donuts or any other treats that are ready to eat. However, these cinnamon rolls were in the freezer.
Shannon Chamberlin:This boy goes up there, unwraps two frozen, solid cinnamon rolls about the size of a little tabletop hockey puck, you know, or smaller and ate them frozen, solid at the table. I don't know, you know there's a certain level of disappointment there, like what is wrong with you, seriously? So we've been giving him a little bit of crap ever since then. Every time he wants something to eat, we're like do you want it frozen or do you want it warm, you know? And now he's like I want it warm. So he's been purposely disobeying me the past few days and I don't know why. He just he loves to do it, and then his dad will tell him the same thing I just told him, and usually he'll do it just to piss me off, but he actually hasn't been doing what his dad asked him to do either. If it's something that I asked him to do, this is something that really lets me know he loves me all the time.
Shannon Chamberlin:Yesterday actually, I've been going through a hard time personally, just in our position. Some of us tend to do some spiritual work on ourselves and I've just been kind of getting into that lately again and I'm just trying to take some comfort in those types of things. So I've been working on myself and I've just been kind of getting into that lately again and I'm just trying to take some comfort in those types of things. So I've been working on myself and I've come to a place where I'm very aware that I am the only woman in the house. I am constantly a captive audience. I have got to pay attention to these performances every five minutes. I'm constantly being touched and tapped and squeezed and kissed and it's really annoying. I mean it's like a nervous tick with him. It's not that he's doing it because he just loves me so much. It's just the same as daddy, daddy, daddy, daddy, daddy, daddy, daddy. I love you, I love you, I love you, I love you. Touch, touch, squeeze, squeeze, kiss, kiss, tap, tap. I just, I am so tired of being hostage to this and I hide it the best I can, but every once in a while I just I guess I can't hide it.
Shannon Chamberlin:And I was just taken Sunday. I like these Sundays in the fall and winter because of football, I actually end up with a little bit of extra quiet time by myself in the basement. So I was enjoying some quiet time and Jacob came in. I was really just trying to keep a headache at bay and wake up a little bit more. He asked me are you okay, are you okay? And he kept asking are you okay, are you okay? I kept saying yeah, I'm fine, I'm fine. And he finally asked me one last time. I said I'm just tired, I'm just tired Jake. And he said, oh, I'm sorry, I know you're tired. And he put his arm around me and I just thought that was really cute and sweet. And then I think he left me alone the rest of the day. That was really nice of him.
Shannon Chamberlin:So every once in a while he'll let us have our time. He waits until he can see that we're broken before he'll do it, but he'll do it for each of us. If he can see that his dad can't take any more of him, he'll leave him alone, but he has to drive you to that point. Then he'll give you a little bit of love, real love. Hey, let me back up off you for a while. Let you have some space. I understand. You know I've got a bunch of questions lined up for my spouse to do the daddy interview and I wanted to know if you have any questions for him. So probably within the next three weeks, I encourage you. This is November 11th, it's 11-11 of 24. If you could get your questions in within the next week, I will be happy to include them in an interview with my spouse.
Shannon Chamberlin:Again, this is just getting dad's take on everything. He was there for the diagnosis. He was there for the family training of how to deal with the autism. He was the one that advocated in the schools around here for Jacob. He's also the one that I call when weird things happen, like the one time in our townhouse. Jacob has always, always pinched his bean, so he always walks around, you know, pinching his bean and then one day I noticed that there was blood on his fingers. I had his dad look at his pee-pee and there was a hole worn in the skin. I mean you could see right through it. Things like that. Those are dad things, so he's the guy for that.
Shannon Chamberlin:So yeah, if you have any questions for dad, please email me at contactparentingsevereautism at gmailcom. I'm out of time for today and I've reached my emotional limit so I have to go, but next week I'm going to tell you some very interesting things about that school. By the time you hear this, it will be coming up on a supermoon. Our child is horrendously affected by these supermoons, so I wish you luck during that. It is starting on the 15th of November. You hang in there, you're a superhero.