EP.35: New School Nightmare After Relocation, Adult Stuff is Autism Stuff

Ever wondered how a simple water balloon fight could turn into an unforgettable lesson on resilience and understanding? Join me in this heartwarming episode of the Parenting Severe Autism podcast where I share some of our family's most cherished memories, like Jacob's adventurous spirit during our quirky door-knocking sales days, his creative costume designs, and the pride we all felt when he caught his first fish. These stories not only entertain but also shed light on the unique joys and trials of raising a child with severe autism, emphasizing the importance of connection with those who share similar experiences.

Transitioning to a new environment brings its own set of challenges, and our move to Jefferson, Wisconsin was no exception. I open up about the importance of maintaining communication with educators through tools like a daily feedback notebook and how it played a crucial role in understanding Jacob's school days. This episode also touches on the significance of involving children in 'adult' discussions about changes, such as moving homes, to better prepare them for life's transitions. By sharing these experiences, I aim to foster a sense of community and offer insights into creating a supportive and understanding environment for families navigating severe autism.

Chapters

• 0:17 Family Memories and Bonds
• 7:00 Navigating New School Challenges With Jacob
• 21:48 Including Autism in Adult Conversations

Transcript

Shannon Chamberlin: 0:17

Hello and welcome to the Parenting Severe Autism podcast. I am your Sh., . I'm so happy that you're here with me today. While I've been thinking about all of the events that took place in the house we moved to once we left Northern Illinois, I've also remembered a couple odd things that I may have left out from our days in Northern Illinois, so I wanted to share those before we move on to the heavier stuff.

Shannon Chamberlin: 0:43

I remember that we hadn't lived in our townhouse very long and we thought it might be a good idea to start having fun as a family out in the yard. It was summer. It had to have been a holiday, because the only time we'd be home as a family is during a forced holiday. It was hot outside. We went and bought some water balloons and we thought we'd have a family water balloon war. It went well for the first several balloons. Everything was going okay, and it was because the balloons were just hitting the ground. We weren't quite getting them far enough to break on a person. Finally, daddy got one to stick. He and Jacob were a couple arms lengths away from each other and he tossed a red water balloon at Jacob. I remember specifically. So it was an instant progression. He made eye contact with Dad. Dad throws the water balloon at him with a smile. It hits him, bounces off. He looks down in horror that something hit him and that his dad did it. He looks back up at us and falls on his ass hard and he let out an instant blood curdling scream. It was so embarrassing. There were people outside, we were in a neighborhood, there was no one in our yard, but there were other townhomes all around this place, so many people out in the street and in their own yards and everything. And he's just screaming at the top of his lungs and it was the longest scream I have ever heard in my life. And we had plenty of time to look at him with wide eyes, look at each other with wide eyes and take three large steps back and he was still screaming. It was horrible. His dad still feels terrible about that. We both do. Anytime we think back about it, it's just so sad. It was supposed to be fun and it was so sad and it was over. I mean there's nothing else you can do after that.

Shannon Chamberlin: 2:47

So another thing I thought about was when we would go door knocking because we were in sales Sometimes. We would go as a family and Jacob would be with both of us, or sometimes just with his dad. We would stand at the door and knock or ring the doorbell. Jacob would just walk right in, his dad would ring the doorbell and then Jake was like, yeah, screw this. Like he just thinks he belongs everywhere and he would just open people's doors and walk right past him. It was quite embarrassing, but I mean, what are you going to do? You know that's, that's Jacob. There are a lot of things that Jacob did that would just horrify me, and his dad was always like, yeah, well, okay, you know.

Shannon Chamberlin: 3:25

Another memory I have is when the nephew came over to stay with us. He wanted to go fishing. We had this bike path and there was a river behind our place and then the bridge from the path would go over that same little river. My spouse was out at work, I had the boys and we had fishing poles. I just grabbed some bread, because that's how I used to fish when I would go to camp. We would just make little triangles out of smashed bread and put it on the hook and go fish. So I was like, well, let's just go do that. We went down to the bridge and I loaded up their hooks with this triangle of bread expertly crafted. We dropped both of their lines in the water and within 30 seconds, jacob caught a fish. He had never caught a fish before. It was I don't know. It looked like a little sunfish actually, which that's what I used to catch on bread at camp, so that would make sense. It was probably like three or four inches long. It was a tiny little guy and it was so cool. Jacob didn't know what to do with it, but we pulled up the fish and I showed it to him and I think he got to touch it and we threw it back in the water and that was pretty neat because he got to catch his very first fish with me. One of my other favorite things about his persona at that time was that he would make his own costumes. I know I mentioned that before, but it was super cool, especially as time has gone on and I've learned more about how not creative they expect him to be, having severe autism, and I thought that was extremely creative to mix and match his costumes and steal my sunglasses to put him with certain costumes, but not every costume. I thought that was amazing One of the interactions with people outside of our family that sticks out to me from those years is we cooked for a family who had an older boy I don't know.

Shannon Chamberlin: 5:09

I think Jake was like 11. And this other boy was probably 14 at the time. I believe they were really nice people. I believe he was on the severe side of autism as well, and the mom just thought, hey, they would get along great together. I want you to bring your son when you cook for us. Okay, well, that's really nice. So we did. They wanted us to all hang out as families. It was just work. At the time I just didn't even realize how rare and special a relationship with another autism family could be. As I said, we didn't know any other autism than the one that we live with, that our son deals with. So we didn't know anything about the spectrum or the different ends and the different severities and whether he was severe. We didn't know anything. So we just didn't realize that it would be hard to even want to form connections with others, and that was probably one of the coolest things that we did.

Shannon Chamberlin: 6:07

The thing about that visit is that we took our son over there, we cooked the meal, we did all the things and our job takes two and a half to three hours to do. We went to check on the kids and they had bonded so quickly. They were quiet the whole time, which is why we thought we should check on them. We found them in the movie room sitting on the couch holding hands watching a movie, completely at peace. The expressions on their faces were so calm and happy. It was quite a marvel. Actually. There's only been a couple other times when I've seen him that content and I think he's probably been stoned each time. It was a really really neat thing to see. Also very rare to have that opportunity for him to bond with somebody, so that was really really memorable for us.

Shannon Chamberlin: 7:00

The last thing I thought about is probably the last thing that happened at the location we lived at in Northern Illinois. We got him that tricycle I told you about. It's huge. We got that in October because we dressed up as the Wizard of Oz characters and we taught him how to ride that bike. Either in the same day or the same week he was riding that bike and he had been riding it a couple times already up and down the driveway. We were just cheering him on and he had gotten about I don't know five or six leg pumps in away from us, all of a sudden his tire went off the driveway into the grass and he just fell over the whole thing, just fell over. He fell actually into some of the bushes that were growing and they had lost their leaves already; it was fall, you know, and I was horrified. I thought, great, this is gonna suck.

Shannon Chamberlin: 7:55

But we treated it just like you treat any other kid who falls and you know they're not really hurt and their reaction is going to depend on how you react to it. The way that I grew up, we would always just laugh at whoever fell, you know you would say oops, a daisy or something and then just kind of laugh it off and hope that the child would just laugh it off as well and not go the other way and have a screaming tantrum. So we just kind of giggled and laughed it off. We were like, oh, fall down, go boom. You know everything's okay and he was fine. He didn't even really look to us for the cue on how he should react and he does all the time now he can't do one thing without looking at us for our input before he makes the decision to do something. It's so terrible. But back then he didn't even care. I thought he would. He just sat there on his bike in the bushes. Everything was fine, it didn't. It didn't hurt him at all. Of course it was a big ass trike, so I think that was why it was so safe for him. But it was great. I thought that was going to be a nightmare, but it was totally fine.

Shannon Chamberlin: 9:02

And then we ended up moving to Jefferson, so it was the Jefferson area of Wisconsin. The school he went to was in Jefferson, wisconsin. We lived out in an unincorporated part of a different town but it wasn't far. I was naive. I didn't realize back then that anything we were going through with this new school was going to be the new standard, the new normal. I didn't realize that this was going to be a thing. He never had problems in school. Everybody loved him, everybody took care of him, every day was a happy day at school and we had no reason to believe that that would change, because he's the same kid and he has the same effect on everybody.

Shannon Chamberlin: 9:44

Everybody loves this child. He's adorable and he's a little mischievous, but he's not good at it, so that's even cuter. He just he's a great kid and the educators always loved him, so we just didn't think anything bad was going to happen. A lot of the stuff from back then is in deep storage because of the downsizing that we did, but there's really not much, because we were there for one school year and that's it. One thing I quickly realized is that Jacob needs to be preceded by an instruction booklet. It wasn't something I ever thought about. We thought that we could just say this is what he is and is not allowed, but as he gets older and the world changes and more things become available and more things become mainstream that we don't really want in his life, more restrictions get put on everything and more care has to be taken, so he does come with an instruction booklet now.

Shannon Chamberlin: 10:39

The biggest thing with that school, though, was that there was no notebook communication. We would press for it because it was a ritual, as I mentioned many episodes ago. He would always come home and we would check his. Oh my gosh, I don't know if I even told you guys about this. If I have, it'll be over quickly, so just bear with me, but he used to always come home and we would check his notebook immediately to see how he did, just so we had something to congratulate him on and also we wanted to know how his day was. But we just liked making him happy and getting him excited and rewarding him with love and joy for a hard day's work.

Shannon Chamberlin: 11:17

One day he came home from school and we were in the living room and we wanted to check his notebook, but it took him a long time to get off the bus first of all, and then he came in the door and we were like where is your notebook? And he said just one, minas. And he scratched out the teacher's words that he misbehaved and he wrote himself in there Jacob had a good day, or something like that. It was hilarious. We were so proud of him for just being that much of a badass. Already you know what initiative you know.

Shannon Chamberlin: 11:57

So anyway, that notebook was used every day and all of a sudden we're at this new school. We told him about the notebook, we sent the notebook, we introduced ourselves at the parent-teacher opening day. We talked at length with the staff of educators there that were going to work with him. We gave all of the information. Everything was would have nothing to congratulate him on and he didn't really have the words to say anything about anything. It was like it was none of our business is how it felt.

Shannon Chamberlin: 12:35

So we started to press them about the notebook. Why don't we have a notebook? We would really like to know how his day is going. His day is going fine, is what they would say. We would say well, we have a notebook and he relies on it and we think that he seems a little sad and maybe feels neglected because he's not getting the positive feedback from school and we're also not finding out anything else that goes on. We like to know how he handles his day and we would like to have the notebook filled out every day. And they just wouldn't do it. I thought that was a fine reason and a fine argument for why we wanted to have the communication coming and going. I think they said something to us like you don't say anything to us in the notebook, you know.

Shannon Chamberlin: 13:22

So we started having to write stupid stuff to them in the notebook, just so they would be our pen pals and write back in the notebook. And it was dumb. You know he just started acting out. I don't remember other than the finger stretching, and you know these little neurotic things that started coming up. There was something about him and about the way they were acting that just put me into a panic and I started frantically researching and searching the internet for, at the time, spy cams. There was nothing like what's available now. The only things I could find was like a nanny cam inside of a teddy bear, or a button, a pin, you know, like a smiley face pin that you can put on his clothing with a little camera on it. But obviously there are several things wrong with that, so that wouldn't work, and these cameras were hundreds and hundreds of dollars.

Shannon Chamberlin: 14:19

I just couldn't find anything that would be believable. You don't want to put it on his clothing for obvious reasons. You don't want to put it on his backpack if they're not going to have the backpack with an earshot. I didn't necessarily need to see everything that was going on. I just felt like maybe I should see it, maybe I needed to hear the environment that he was in. Something was wrong and I was so depressed about it. I searched frantically every day trying to find a solution to put a monitoring device on him where I could hear and or see what's going on in the classroom. So something was obviously not right. I just couldn't prove it. I don't know what would have become of it all. I'm glad that we moved away from there, but that did start the downfall of the happy Jacob and everything started to get stranger and stranger after this.

Shannon Chamberlin: 15:15

I am really glad we moved, but I did end up typing up like a care sheet, a care booklet for him and, in case you need to do something like that, this is very thorough for us because we have noticed how he reacts to all of the foods that I've said we leave out of our diet now. So the instruction booklet is how to talk to him, what names he likes to be called, how to greet him, how to interact with him, specific words and phrases that trigger happiness with him and trigger cooperation. There is a certain way to talk to him. His dad has been doing it ever since I met them, so it's what he responds to. It's our opinion that maybe everyone should just be aware of the easiest way to deal with him and to interact with him, so that you can save yourself time, save yourself hassle, save him any kind of negativity and just be able to function a lot better. It's much more efficient when you have the 411 on how to deal with the entire individual.

Shannon Chamberlin: 16:17

The more complicated he has become as he's gotten older, the more valuable I realize that that information is. I'm talking about allowed foods, how to diffuse him, how to motivate him. These are all things I took for granted, I guess I just didn't think it was that hard. I know nothing about it, I just feel him out. I know what works, I know what doesn't work. I know if I want to piss them off. I know how you know. I like to have that stuff in a booklet. It's not long. I ask them to read it. It's just two pages, front and back, typed up. It's not that big, but it's very specific, easy to follow, and they didn't want to do it. That is what I didn't realize was going to become a thing. It became the new normal and it's just not fair. It's not fair to him, it's not fair to us as his parents who have to live with him, and it's not fair to the other kids. It's not fair to the special classroom, it's not fair to the other classrooms. They wanted to, I guess, integrate. They wanted to integrate him into regular classrooms. I think that started at the Jefferson one. That might have been part of the problem I wish I remembered. I just didn't. I don't know. It was a short thing. There was a lot going on and we were just trying to get through it and keep everyone alive. So my memory is very foggy on that one, but at least we were there for a short time.

Shannon Chamberlin: 17:52

In my next episode and every episode following, I'm going to start detailing the next seven years of our severe autism lifestyle. I'm going to do my best to include something good and happy, you know, some kind of good news, some kind of funny story in every episode, and it's because this shit gets really heavy. It's heavy for me. It might not be as heavy to listen to as it is to talk about, but it's going to be rough and it's everything that became the beginning of the reason that I felt called to do this podcast. Everything coming up is the start of that. The worst of it is what got me doing it, and that was within the last three years, I think. But we're going to talk about the years between 12 years old to 19 years old. So it's going to run the gamut there and this shit is heavy.

Shannon Chamberlin: 18:38

So I do want to tell you I thought that we had mornings figured out, but now he's gone and thrown me another curveball here. Every time we think that we are safe and able to have a calm time of it. He came down the other day. It was the day after I recorded my last episode. He comes downstairs first thing in the morning, raging, just super upset, not hearing any reason, not going with the program. He knows how mornings have to go for him to have a good morning. He's got to let his medicine take effect. There are certain steps that have to be taken. He knows what they are and on the days that he chooses not to allow those steps to happen in the order and at the length they're supposed to happen, everything goes to hell.

Shannon Chamberlin: 19:25

So he's doing that on this particular morning and he kept yelling how he doesn't feel good, but he wouldn't let us help him and he just wanted to rage and he just wanted to yell at everybody and he kept stomping around and punching himself in the head, just all kinds of stuff. The final thing that he did he was put in his bed. He was told to relax, he was threatened with the no pizza, all that stuff, and he didn't care. He got back up out of bed a little while later, sweating, heavy, breathing, all of the things because of all the flapping, and he puts his robe on and comes storming down into our area. The robe is open, he's just flying around and starts raging like almost like seething, you know the breathing through his teeth and all that. He starts saying how he doesn't feel good and instead of the whiny he usually says I don't feel good. But instead he was like I don't feel good and he starts taking large, giant, stompy steps towards his dad and there's only room for him to take like three steps in this room, not a lot of room.

Shannon Chamberlin: 20:32

His dad is sitting next to me on the love seat with his eyes closed, trying to cope with what's going on, and a lot of times if we close our eyes or don't look at him, it kind of diffuses him. So he was doing that. I didn't know, I was looking elsewhere, because I was also trying to do that and all of a sudden I hear Jake, what the fuck? And I look and he, as he was, stomping, stomp, striding towards his dad. He took his entire package out of his underwear and fluffed it over the top and left his underwear tight across his legs and he's got his whole, his whole thing there. Everything is just hanging out over his waistband and he's stomping towards his dad and that stuff is right at face level when we're sitting and he's standing and so, yeah, and then his dad says later what is it with him and sleeping people? If he would have thought I was a sleeper, if I didn't open my eyes, what was he going to do? Because of the method I told you about, that was sleeping on the couch. He knew his dad wasn't sleeping, obviously because we had been fighting with him. But, yeah, that's what happened.

Shannon Chamberlin: 21:48

So mornings are not reliable. Again, it only lasted a little while. We're right back to the craziness. What are your mornings like?

Shannon Chamberlin: 21:58

If you ever have time and you want to tell me about your mornings or your evenings or any specific time of day that just is great or terrible on a regular basis, is there a pattern? Anything you want to share with me? Please feel free. If you want me to share it with others on this podcast, let me know in an email. Otherwise I'll just keep it between us. So you can email me at contactparentingsevereautism at gmailcom. You can also send me a text, I believe through my Buzzsprout website, which hosts this whole podcast. So that is psabuzzsproutcom, and I think if you leave me a note, even on Facebook or on Buy me a coffee, you can leave me notes all over the place. I eventually get the notification. But yeah, I'd love to hear anything you want to share. Feel free, I'm here for you.

Shannon Chamberlin: 22:57

Overall, I guess the lesson here with the whole moving thing that I was talking about before is that, even though I was raised that that kind of stuff is adult stuff that I don't need to worry about. That's how I viewed it and I think that's how my spouse viewed it too. You know, you tell your kid that you're going to move, you let them know that they're going to lose all their friends and find a new place and all that stuff. You talk about it, but you approach it differently with a kid who's not like Jacob. But the lesson here, I think, is that adult stuff like that is autism stuff too.

Shannon Chamberlin: 23:31

In my opinion, it's better to include him on a conversation, because it's adult stuff, I guess, and you're always taking. He may not even understand, but I feel like I'm. You know, you make a mistake when you figure it's just adult stuff and you don't have to consult the child with all of his particulars. You have to consult him and prepare him in a different way than you would prepare a neurotypical child. I guess that's the lesson. Just remember that adult stuff is autism stuff too. It has a huge effect. You hang in there, you're a superhero.