When Stress Turns A Child Into A Weapon

Vacation stress collides with severe autism routines, and can push a family to the edge. We share what happened on our Illinois getaway, then zoom out to the bigger lesson about family stress, boundaries, and the tiny moments of humor that keep us going. 

• caregiving isolation and what it feels like when support runs thin 
• why special needs travel often requires more than a simple hotel room
• what Grand Bear Resort near Starved Rock advertises versus what works 
• a sweet sighting of a nonverbal teen having real joy 
• the danger of using a child’s disability as a tool in adult conflict 
• reaching for help instead of letting pressure build 
• funny connection moments as de-escalation 

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Transcript

Welcome And Listener Support

SHANNON CHAMBERLIN 0:18

Hello and welcome to the Parenting Severe Autism Podcast. I am your host, Shannon Chamberlin. I'm so happy that you're here with me today. Please remember you can always support this podcast first of all by sharing to others who have not yet heard it. And you can buy me a coffee, you can check out my merch. And if you can't support financially, that's totally fine. I would even be delighted to hear from you in email. So you can send me messages at contact.parentingsevereautism at gmail.com.

When Caregiving Life Implodes

SHANNON CHAMBERLIN 0:46

Well, happy July. This is not yet the first of the new high school episodes that I told you I would be making. Um my family has nearly imploded twice since my last episode came out. And since some of my listeners actually know my family members personally, I can't really talk about this near implosion that has happened. However, since you are in the same caregiving boat as I am, I'm sure you'll understand this feeling of wishing that I did have someone to talk to who actually cares about me. Um, but I have spent so many years, just like you, immersed in this severe autism lifestyle bubble of seclusion, that if I reached out now, it would just be weird and awkward and uncomfortable. It's not really great. I have found it very difficult to maintain outside relationships with this lifestyle, but I'm lucky to have one solid friendship that's lasted since high school. That one doesn't require a whole lot of maintenance, but you know, it's still hard to bring up family stuff. That's not what you want to talk about when you finally get to reunite with a friend that you're that close with, you know. Maybe I just need a second podcast to air out all that other stuff. I think it would probably be helpful for some people. So anyway, I wanted to put this episode out. One, because the other episode I promised has not been delivered yet, and I haven't even been able to do all the research on the emails and everything like I promised, because I do want to be very accurate when I start telling you these stories about the events that really changed our lives. I apologize if there's a weird noise in the back. It's like 96 degrees outside, and I'm in a hot basement, and for some reason my spouse is not putting the air conditioner in the window, and I'm totally good with that as long as I have fans on me, but that's what that noise might be in

Picking A Resort For Diet Needs

SHANNON CHAMBERLIN 2:34

the background. It's a big old fan. But I do want to share a recent experience around the second near implosion about our family. The week after my last episode came out, we took a last-minute getaway, which we were supposed to take a couple weeks before that, but it got canceled due to the first near implosion of my family. And we have this state park a couple hours away here in Illinois. It's called Starved Rock, and near there, there is this so-called resort that we just recently learned about. A lot of locals around here already know about it, but we were delighted to have found information about it. And we were very excited to show some YouTube videos to our son. As you know, that's how we can get him excited or actually get his vote on whether we should attend any specific new place. We have to show him the YouTube video and let him decide by his feelings that he gets from whatever it is that he sees and how he understands it and processes it. So we did enjoy showing him this because it had a lot of features that all of us would actually enjoy. This place is called the Grand Bear Resort, and it is up near Starved Rock in Illinois. One of the biggest issues for our family when we want to go to a new place is the food, honestly. Between me and our son, with our dietary restrictions and special needs, it's really hard to just go get a hotel room and then live off the food that's available in the local area. So we have to have a full kitchen. It just keeps everybody on an even keel. We don't miss our healthy meals. We have found that with our son, if he misses the healthy aspects of the home cooking, it really does affect his attitude and the way his brain functions and the way that he can move through the world. So if we cannot get a full kitchen when we take him on vacation, it's a no-go. So we were really excited that this grand bear has villas in addition to the actual hotel. And the villas seem so cool. There are videos about it on YouTube. They advertise that there are two fireplaces in each villa, one in the master bedroom and one in the living room. There are at least three sofa sleepers, so these places can sleep between seven and eleven people. They also advertise that the villas have three private patios and a jacuzzi in the master bedroom, as well as a full bathroom that is shared between the two bedrooms and a full bathroom downstairs, which has a shower and a toilet. It seemed really good because we do have to bring a family member with us if we want to be able to show our son a good time and have a good time ourselves. Sometimes a family member needs to hang out with our son and take him to some of the features that he would enjoy and give us a break. And that gives our son a break because, as I've mentioned before, it seems like he functions a little bit better when we're not around. And when we are around, he's a lot more self-conscious about how he's eating or what he's doing with his hands or whatever, which is weird because we don't do that. You know, we don't put him in a position to, you know, expect him to be proper and behave well. I mean, you know, we know him. We don't do that. I don't know. He's just got this weird hang-up. So we like to bring another family member to kind of break that up a little bit. Anyway, they also advertise this is what we thought our son would like. They advertise that they have this indoor water park that has two water slides. It's got a lazy river, it's got a wave pool, and a regular swimming area, of course, when the wave pool is not activated. And they have mini golf, they have an arcade, they advertise that they have a restaurant or two. They actually advertise three restaurants, but when you click on it to see the menu for each restaurant on their website, it always goes to one specific menu for one specific restaurant. So we gathered that there's probably only one restaurant and they just can't get their website straight. I don't know. So that's it. You know, two fireplaces, three sofa sleepers, plus the two bedrooms, and the second bedroom had two separate twin beds in there so that we could bring a family member and our son and the family member could have their own bed in the same room, which is great. Um, the three private patios, a jacuzzi, two water slides, a wave pool, lazy river, and mini golf arcade restaurant. It sounds great. So we were so excited. We had Jacob watch these videos, and he kept watching them again on his own. So that told us that he was pretty excited and we booked it.

Amenities That Do Not Work

SHANNON CHAMBERLIN 7:05

So let me tell you the truth about this place, first of all. Um, when we got there, it was still technically spring, had not moved into the actual summer season yet, and it was unseasonably chilly. Like I said, it wasn't even summer yet. So the days were chilly enough to want to wear a hoodie or at least a light long sleeve shirt, and then the nights were even chillier, where we thought, you know, it might be nice to kick on one of these fireplaces. The fireplaces wouldn't kick on. There's a little switch that says fireplace. And now I've stayed at other hotels, even in this local area here, where they have the same kind of little fake fireplace. So you s you flip the switch and it's gas log thing and it comes on and you have this nice heat and light, right? So I just thought that's gonna be nice and cozy. I don't normally drink, but I just wanted to have a little highball next to this fireplace and celebrate this long-awaited vacation that we were trying to take. So I tried to turn on the fireplace, it didn't work, and we had already had to call the front desk twice as soon as we got there, because when we got in there, the sofa sleepers were open and like kind of half up in the air, not even not put away, not fully out, and we were having a hard time getting it back in, even though I know how they operate. I just couldn't get it back in. So we had to call and complain about that. Like, I don't think this room is even ready. Are you sure this is the villa we're supposed to be in? Because it was like, I don't know, almost a full mile, it seemed like from the actual hotel. It probably was less. It didn't take that long to walk it, but it was pretty far out there, and we had passed a lot of other villas on the way, and I thought, well, I don't know, maybe we're in the wrong one, you know. So we had to call about that, and we had to call about something else that wasn't working when we got there. And now my spouse has to call about the fireplaces because neither one of them are working. And it was advertised that we had functional sofa sleepers and functional fireplaces. And when he called about the fireplaces, they said, no, these are privately owned villas, most of them, and the owners collectively choose not to have fireplaces available for use in the summer. And I kind of lost my cool on that. So they heard me in the background kind of like, no, fuck that. It's cold outside, it's not even summer yet, and I paid for a room that has fireplaces. That's what was advertised. I booked based on what was advertised as amenities for this villa. So apparently the people at the front desk heard me getting a little bit irate, and they didn't say anything that I know of to my spouse, but all of a sudden there's a knock on the door about 10 minutes after I spouted off in the background on that phone call, and it was a maintenance man, and my spouse opens the door, and the maintenance man, I guess, just walked right in. I was already in vacation mode. I had just mixed a highball, I was getting ready to sit down, and I was in the process of actually sitting when there was a knock on the door. My husband was answering it. So I don't really know how the whole thing went down, but the maintenance man apparently, according to my spouse, just barged in. And, you know, we're on family time now. We're the four of us are there, we're getting settled in. It's not time for the maintenance man to barge in without being invited. So that really upset my spouse, and everything just, you know, kind of went downhill after that. The three private patios were not maintained. The one that came off the master bedroom where we were was so crowded with branches that you couldn't really enjoy it because I mean they could have trimmed it back a little bit. It would have been nice to be able to go out there. But I mean, if you know anything about being out in the woods and being under trees, you don't want your head that close to a branch. It's at the top level of the villa, and the branches are just right there, and spiders, all kinds of stuff comes out of those. So no, I don't want to go out there. So I couldn't really go out and enjoy a cup of coffee on the patio like I thought. And the other thing is none of the patios that we had had any seating or tables. Why would you advertise that you have three private patios and t which are two of them or balcony patios, if you don't have any way for people to enjoy them? It was really just ridiculous and it was gross. The patio door, the sliding glass door going out to the main floor patio had spider webs in the corners on the inside of the villa. So I don't know when the last time housekeeping came out there was, but clearly it wasn't that day. They wouldn't even let us in the villa until four o'clock. They told us on the phone three o'clock, and then we get there and they say four o'clock. You know, we planned for a special needs outing. We you plan to the minute. You don't plan for an extra hour of sitting around and waiting. And they said, oh, well, you can't get in until four because there's so many to clean. Well, clearly they weren't cleaning this place. So I mean, they just really don't have their shit together. And I want to caution you, if you ever consider going to the Grand Bear Resort in Illinois near Starved Rock, don't listen to whatever it is that they tell you. Just plan on a disaster from the start. Then maybe you won't be disappointed. Another thing about it is my spouse tried to use the jacuzzi on the last night that we were there, and he found that the jacuzzi did not work. He filled it up the way you're supposed to. You gotta cover the jets with the water, and it just wouldn't work. So that was another amenity that we paid for. And I mean, they want, you know, just like a hotel room, they want approximately $300 a night, which is a great deal when you have four people and you have a full house, basically, instead of one hotel room. It's really nice, but you advertise amenities that don't work and won't work. And they wouldn't turn on the fireplaces. It's a gas thing, you know, so the owners have it locked or whatever. And I finally figured out how to turn on the actual heat on the second or third day. We were there for like four days. Thank God for big tax return this year. But the first full day that we were there, after we woke up, after the first night, we decided, you know, it's time to go to the pool, do the water slides and the wave pool. And

Water Park Letdowns And Crowd Strategy

SHANNON CHAMBERLIN 13:09

we normally don't do weekend stays. I mean, if you travel at all with your little one or your special one, you probably are doing the same thing a lot. We don't like the crowds and we don't like the rates. It's uh you save a little bit of money and you save a lot of tension and meltdowns if you go Monday through Thursday instead of Friday through Sunday. So our first night there was a Sunday, and then we were leaving on Thursday morning because that's just the affordable way to do it and the most mentally healthy way to do it for our family. When we booked over the phone, we told them all the things we were interested in. We told them about our son, and they did not tell us anything would go wrong. They didn't tell us that anything wouldn't be available, so it was really disappointing. We take the kid to the water park, the water slides are both closed. The wave pool never waved. It was just like the the big bucket that fills up and dumps all over the place, and like a little splash pad there, and then just the regular swimming pool and lazy river, which our son loves the lazy river. As a family, we love to just hang out and do the lazy river over and over again. But I mean, this is an indoor water park, so it's a pretty small lazy river, and he was gonna get bored. You know, we tried to have him go in the pool on his own, but he is completely unable to self-direct. So it was really just more frustrating watching him stand there and shiver and tell us how cold he was instead of swim. He loves to swim. I don't know. It's very frustrating. And the family member that we brought with us to help him at the water park never did go to the water park with him alone. It was always us. I took him on my own, I think, once. And no, I was going to, but then my spouse joined me. On our way out of that water park that day, there was another lady in the lobby raising hell with the staff. And she spun around and told my spouse that she was receiving a full refund because of the false advertising that she booked her family, her kids, to come here for the wave pool and the water slides, and they're out of order. And why are they not working? Oh, it's because they don't have enough lifeguards to man the thing. So that seems like a permanent problem to us. And she was only there, I guess, for one day or maybe two days, I don't know. But she said she got her entire trip refunded, and she said that we should do that too. And my spouse went up and tried to talk to the manager at the front desk, and they said he's in a meeting. Of course, of course, he's in a meeting. So we go back to the villa after this water park fiasco.

Road Work And Keys That Fail

SHANNON CHAMBERLIN 15:49

On our way back, we find that we can't get to our villa because they decided to start doing that fake blacktop stuff where they just spray black tar all over the existing blacktop, and they had the roads to our villa blocked off. So we had to spin our Jeep around and park at the fake restaurant. They have a building with a name of a restaurant, and it actually never opens. Um, and that's the menu that you find online. Belongs to that restaurant. I think it's called Jack's Place or something. It's just an abandoned building. It's crazy. So we park in this dilapidated, overgrown parking lot that belongs to that place, and we have to walk. So the family member that we brought is not much of a walker. Our son was having trouble. My spouse was having trouble just because he was so mad. And um, we're trying to walk and navigate through not being sprayed, not walking through the tar. I'm trying to hang back and tell the relative that you gotta walk over here, walk over there, because he can't, he's not walking really well, and he's not up there with us. So I don't want him to walk the wrong path and not be paying attention. But I also have to make sure our son isn't walking the wrong path. So his dad is stomping around leading the pack, and I'm trying to tell our son, okay, stay behind dad, stay behind dad, follow, you know, and then hang back and tell um the grandfather is who we brought to like, hey, we're going this way, don't go over here, you know. So it was a little bit stressful. It was kind of like leading a classroom around, and it was only two people that I had to take care of. But we get all the way back to our villa, which is almost the last row of villas. There's only one more further than us. We were as far away as possible. We finally get back there. It's hot by now, it's the middle of the afternoon. It's time for lunch, which is why we left. We promised our son it's time to go back to the villa and eat food. He had no water, no food. You know, we thought we're just going up to the hotel and then we'll come back. Well, we get there and our keys don't work. Had to call the front desk and I told him, hey, I'm standing out here with an elderly man and a special needs adult, and I am on a schedule. These people have to be taken care of. They need liquids, they need food. I can't live like this. I need to get in this villa and none of our keys work. Oh, okay. Well, someone will be right over. So we stand there another 15 minutes and no one came. And so I call again and she's like, Oh yeah, he should be there any minute now. He just left. I'm like, he just left? Because I mean, we've been out here for a while. No, he'll be right there. I'm like, how long? She's like, I don't know, but he'll be there. And I'm like, should I just come back up there? Would that be easier? And she's like, no, he'll be right there. And so here I'm trying to keep our son upbeat, but he also absorbs energy from other people, and his dad was pissed. So it was really difficult. Well, his dad starts stomping off to go to the front desk, and while he's gone getting his keys reactivated, the maintenance guy shows up, and then my husband is uh there at the same time. Somehow that worked out. And then we finally get in. I want to say that every single day, two to three times a day, our keys were deactivated. It was a constant aggravation for us, and there was no guarantee that I could say, okay, my son who needs things incessantly, I've got your back. We're just gonna get in the door. No, you can't rely on that. Crazy. So the next time we go to the water park, the water slides are now working, but the wave pool actually just doesn't work, and they don't bother to tell you that. When we booked, they sold us on an upgraded water park package because they said we could get in at three. And we said, Well, what if we get there at like noon or one? So we can go to the state park early and wait. Um, is there a place to eat? Do you have picnic tables? And they didn't know, believe it or not. Um I don't know where these people worked, but they didn't know if there were shaded eating areas on the property of the hotel. And they said, But we can give you an upgraded package for water park passes for $60, and you can get in there before you check in, and you can get in early before anyone else, and you can reserve a table, and that way you don't lose out on a place to sit and put your towels and stuff. So of course we bought that because we're a special needs family and we need all the accommodations we can get. They didn't bother to say, but the water slides in the wave pool won't be working. So I mean, you know, we're really, it's really nothing. You know, you can enjoy the locker room and you can, you know, whatever. So we go there the next time and the water slides are working, the wave pool doesn't work, and there are, I don't know, there's a ton of tables available. There's really not a lot of families there, and I would say maybe 30 people in the water at the most, at the you know, most full time that we were there, and there's no tubes. There are not enough tubes for everyone to use in the water to go on the lazy river, and then you one of the water slides needs a tube as well, and there's just not enough. And there was maybe eight kids going up and down that water slide, and I don't know, it was pretty aggravating. And then there's a hot tub there, and there's a big sign that says no kids under, you know, 18 can be in here, and everybody was letting their little three-year-olds come in the hot tub, and hardly anyone would come around and make them get out. But thankfully it was hot enough that they didn't like it and they would get out after a few minutes, but just really not ran well. Um, the mini golf was fun. Jacob had a great time. He actually got, I think he got a birdie. He did really well on two or three of them. He did really poorly on most of them, but it was fun. We had a great time. All four of us did it, and it it was a

Refund Negotiation And What We Got

SHANNON CHAMBERLIN 21:32

it was a good time. Um, but the next day my husband went up to wait for the manager because he could not get a hold of him on the phone or anything. And he gets up there and he's waiting, just waiting there. Oh, he's in meetings, he's in meetings. He's like, Well, I'm gonna wait because obviously this is the only way to do it. So he's up there for about 30 minutes, maybe 45 minutes, and he met another guy who was there with his young children and wife, and he started asking, Oh, are you here with kids? Are you in a villa? and Then he started talking about everything that has happened with us from our fireplace all the way to the wave pool not working. And he just told him the whole story and um told him about the lady that got refunded, and that's why he's sitting there is to talk to the manager, and then that family went about their business, and my spouse apparently went back up to the desk to ask about the manager's availability again, and the young kid who was working there tells my 48-year-old husband that he's being disruptive by talking to that other man. And like, I don't know, you can't be a parent like us and then really take a young child seriously when they're trying to scold you and censor you. It's just ridiculous. We ended up getting one night refunded and a bunch of free tickets for pizza and mini golf. Of course, with our eating restrictions, we couldn't enjoy the pizza, but we did get free mini golf for the four of us. And that was how they made up for it. And I have one cute, funny story about the water park.

A Sweet Moment With Another Family

SHANNON CHAMBERLIN 23:03

There was a nonverbal sweet boy there, um, much larger than me. His whole family was with him, and he was he seemed to be obsessed with that big bucket that gets filled up and then dumps. And I mean, it really is a big bucket, and it dumps pretty good, and the lazy river is going right by that splash pad area, and he was doing his best to not be swept down the lazy river. He was just kind of making himself stuck right there in front of the bucket waiting. And there are a few little bells and whistles. If you're paying attention, you'll know that it's getting ready to dump. And I was coming around a corner in this lazy river where I always was getting stuck. It never swished me all the way around. It was kind of like a dead point. And it just happened to be right before the like most dangerous area of the splash pad lazy river part. Not dangerous like you're gonna get hurt, but dangerous like you're gonna get walloped by all this water. I'm trying to get by. I knew it was coming. I heard the things and I could see this young man getting very excited. And I knew, I'm like, oh man, I gotta get by here. I don't want well, he was pretty big and he was taking up quite a bit of room. And at the same time, his family, the rest of his family members, come zipping by from the part before the dead zone of that little lazy river. And I kind of just got wedged by their entire family, all of them a little bit bigger than me. I'm pretty small, and I just got stuck, and I got stuck in the most volatile place of where that water falls out. I don't know. It felt like it was like 50 mile an hour winds and water hitting the back of my head, and all I could do was cover my eyes and just stand there and take it. And this young man is just going crazy, loving it, and my husband is down just laughing his ass off because I was the only one that got stuck from our family, and I just got stuck by this other special needs family, and I just thought it was like so perfect. I'm like, I wish I wonder if they listened to my podcast. You know what I mean? It was really cute though to see another truly nonverbal young man really enjoying himself at the water park with his family. I just love that. That was great. Anyway, um, that was our experience uh at this Grand Bear Resort. We did not get to take our son to the state park because of the storms that had happened the day before we went up there. Um, this is an area that has been hit with back-to-back tornadoes and high winds and stuff like that in the general area. It didn't hit the resort or or the state parks, but really close, you know. So a lot of water and a lot of mud, and it just wasn't gonna be great. You know, there are like, I don't know, a hundred flights of stairs from the parking deck to the actual forest floor or path. Our son would not have enjoyed that at all. We did go to a little town nearby, and um, we try it was the cutest place. I think it was called Utica. So cute. I've never seen a town like this. They actually have it so decorated. They have these tiny little shed houses that are businesses, and they're in a like a U-shape around this green turf, and everything was closed because we didn't go there on a weekend. And oh, that was my point about the hotel, too. That restaurant that I was so excited about. I wanted to take my family there for the last morning that we were there because they have like chorizo and biscuits and gravy and stuff that I can't eat, but you know, we could have them all enjoy something. Well, that is only open Friday through Sunday, just like the outside bar by the mini golf, and just like the town of Utica. It's only open Friday through Sunday, and everything is shut down. So that was kind of a bummer. But these little businesses were super cute. It was a great idea, and I don't think I know of another town that would be able to support an idea like this without it getting vandalized or ruined. And I mean, this is the cutest, prettiest little like movie set quality town. It was just adorable. And I wish we could have gotten in to enjoy some of the vendors and the businesses and stuff like that. So if you ever go to this area that I'm talking about, you gotta do it on a weekend, um, unless you just want to lay around and enjoy half-assed stuff that doesn't really work. I didn't mind it too badly. It was fun for me, but not fun when you know you're planning to go see stuff.

Do Not Weaponize A Child’s Disability

SHANNON CHAMBERLIN 27:32

There's one thing I I do want to talk about from this trip and the near implosion of my family, because I think that being in a situation like ours, whether you're a caregiver or a close family member or friend, if you are in any way involved in the life of someone who has severe autism, I think that um it might be wise to pay attention to that aspect of it. So I'm just gonna tell the story as vaguely as I can, but um I hope that you'll see the point and just proceed with caution in your own lives. I really think there is a lesson here. So without naming which of the family members got involved in this, I just want to say that one of the family members was pretty distraught, and they had been distraught even before we left, and the trip was hard. Um, we got all the way up there and found that we all forgot to pack the other half of our child's medicines, so he only had half, and we actually turned around. It's only a couple hours from the house, but still, that's like six hours of driving in a day when we're only supposed to have two, and we were all crammed in the Jeep, and you know. So um, I think that it's important to mention that this person was in distress before we left, and I think that it just snowballed because that is going to create more stress with every minute that you're crammed in a car, every minute that something isn't open, or your plans don't work out, you know, like it's all gonna build up if you're already in distress and you don't have a way to kind of blow off some steam, so to speak. Um, but this particular member of the family was pretty distraught. And being the female, the caregiver, the the emotional caregiver of people, I kind of get the brunt of things sometimes. And on the last morning that we were there, they all liked my idea of going to the restaurant and having a checkout of 11 a.m. And right before we left, going to the restaurant and having, you know, biscuits and gravy or triso or whatever everyone wanted, so that we could just end it with a nice family meal at a restaurant, which we never do. We thought it would be very fun. Um, the night before we left, I was there at the water park and I asked the front desk people about their restaurant because I had been in it the first night I went exploring and they were closed. But I walked all through it and I knew it was there, and they acted like it wasn't there. You know, I was like, you guys have a restaurant here, right? They're like, uh, and then finally they're like, yeah. I was like, okay, so um, is it open for breakfast tomorrow? What time do they stop serving breakfast? They're like, oh no, it's not open until Friday through Sunday. I'm like, oh, okay, well, I guess we'll just starve and then go. Because by that time, uh, even I was pretty upset with their amenities that don't exist. So I still thought we were gonna just, you know, get up in the morning and pack. I had packed a lot of the stuff already the day before, but I had a setup on the countertop of snacks for our child and snacks for the grandfather, and you know, just like everything that everyone might need in the morning. So the coffee and the snacks and the drinks and things that would be able to be easily consumed and then not have to be packed and uh just done. And everything else that we weren't gonna use was pretty well packed, unless it was refrigerator and freezer stuff. So I had done a lot of the work ahead of time. Um, and I really thought that we were just gonna, you know, get up, have a nice, slow, easy morning, get packed up as a team, and head on down the road at 11 a.m. And I woke up around 5 or 5.30. I was the first one up, finally, of the whole time. And so I got to enjoy a little bit of quiet time before another family member got up, and then everyone else started getting up. So one of the family members um woke up mad and at 6 30 in the morning decided to wake up our son. Now, you already know if you've been listening to this podcast that 6 30 in the morning is not an acceptable time for our son to be up. It's hard for him, it's hard for us, it's hard for anyone who has anything to do with him or anyone who shares airspace with him. You kind of gotta let him just get up. And 6 30, even if he does get up at 6 30 naturally, you have to tell him it's not time to get up yet. Please go back to bed, because he doesn't even give himself a minute. As soon as his eyes are open, he jumps out of bed. He doesn't understand how to acclimate to the environment or anything. He just gets up and fast forward, full force, negative, positive, whatever it is, you're getting it. But the family members here know that it's not a surprise, it's not a secret. And this is where I want to caution everyone involved in caregiving or just being a family member of someone like my son or any of your kids that have special needs or severe autism. Namely, sometimes if you are in distress or andor if you are angry with another member of the family, um, it might seem easy and logical to use that child to punish whoever you're mad at if you get my drift. So I think that that's kind of what was going on there. I truly believe that because there was no reason to get up that early. I mean, there was no food ready, there was nothing, and nothing was given to the child, nothing to appease him, just rough it, just get up and full force, just let the rest of the family enjoy what you're gonna give them this morning because I got you out of bed for no reason, kind of thing. So, whatever the reason was, I just I think it's a very real possibility that many people in our position can tend to use that as punishment for other people in the family. Such a like you remember that story I told you about when one of the uncles, not the one that lives here, but a different one, came here with his granddaughter, who turned out to be a junkie, and she was sleeping on the couch and really getting in our son's way, and he was waking up and getting very angry, and then that one day he went up and he started jumping around right on top of her, basically. And if she would have rolled over, she would have had a face full of his junk. Um, see, that's a thing where we knew that he was gonna be mad, and there was really nothing that we wanted to do to restrict his movement because that's his area, that's his house. We didn't ask her to come and never get off that couch and intrude on our son's life. We knew that he was gonna be mad and he was gonna get out of hand, and we were going to let him express himself. So there's an example where you're not trying to restrict him. However, you can also force him into something like that where he's going to act out and he's going to express himself, but it didn't need to happen. But you let it happen. You made sure it happened because you're the one that caused it in the first place. You see what I'm saying? So that happened, and um, it was a total fucking nightmare to the point where I don't know if I ever want to do this family outing again. I'm tired of these types of things, but when family members have these issues, these anxieties, these anger things going on, and they don't want to reach out to anyone for help in processing that, that's what's gonna happen. And I cannot force any family member into any kind of therapy or help or anything like that. So my only solution is to not participate. I'm just really happy that my family did not implode. It got really interesting once we got back home. Um, it was basically a, I don't know, 14 or 16-day nightmare for me. Um, I'm a lot more emotionally sensitive than everybody else in the house. And I actually I had spent about three days after we got home thinking that my family was going to be dismantled. Okay, I'm gonna try to get through this without crying. I found myself just hugging my son every time he would look for me to tell him that I love him. I uh didn't just throw it over my shoulder like I normally do if he's incessant about it. I love you, I love you, I love you. I just really hugged him and held him tight, and I told him how much I loved him. And for those several days I really felt that each one of those times might be the last time that I would get to tell him that in person. Uh, because I know that I am part of the family and you know all of that, but uh if the family is going to implode, I'm gonna be the odd man out. You understand? I was trying not to upset my son, but um every time that I try to express how much I loved him, I would just start crying so hard and just telling him how much I love him. It's hard when other people won't get help. Um, I don't ever want to leave this kid, but like I said, if things go south with the entire family, I am the one that's not actually family. And so there's that. I can't go into any more details, I'm sorry, but I just I want to caution you guys uh, you know, um if things are getting bad and hard to deal with, please find someone to talk to. They have so-called anonymous helplines that you can call and um just kind of vent, just don't say anything, you know, really, really mean or bad. I'm sure that's a a good rule of thumb, but if you need someone to talk to, instead of weaponizing your child's disabilities uh against other people, you might just reach out to someone, anyone, on a helpline if necessary, because that kind of thing can really tear families apart. So that said, I've got a couple little cute stories that I really have been wanting to share with you.

My Queen And Smushmallow Laughs

SHANNON CHAMBERLIN 38:04

Um, about three weeks ago or so, our son, he started this weird thing. Every time I would ask him to do something like get your water or take off your shoes, put on your slippers, put on some pants, whatever it was, I would ask him to, you know, please do this or that or the other thing, and he would turn around as if he were going to go do it, and then he would abruptly stop. I'm like always in the kitchen when this happens. I'm always in the kitchen. He would abruptly stop, turn back around, and come to the doorway of the kitchen, and he did this two or three times where he would go, Oh, and he would lower his voice, get down on one knee and bow, and he would say, My queen. I tried to I tried to get my voice that low, but yeah, he would do that, my queen. And I just thought it was hilarious, and I'm like, okay. And then the second or third time that he did it, he came in there, he came fully into the kitchen, like a foot away from my feet, and he got down on one knee and he bowed. He looked like he was pretending he had a sword in his hand that was pointed down into the ground and he was holding onto it, pressing it down, you know, and he bowed and he says, My queen. I just said, Thank you, you know. And he got up after a couple times of doing it, and then he went around to the other kitchen doorway and he gets in there, and I'm still cooking or cleaning or whatever I was doing, but I have my back to the rest of the house. I was facing the sink, and I hear him start saying, Just be quiet, just be quiet, you be quiet. And there was no one else that was talking, it was just me. I was the one that had been talking to him, and I wasn't answering him because I surely he's not telling me to be quiet, you know. But then he said, uh, Shandol or Mom or something, just be quiet. And I didn't even look at him. I just said, Son, you can't tell your queen to be quiet. He says, Oh, sorry. And then he's never done that again. He's never said, My queen, and he's never told me to be quiet. It's just hilarious. But every so often, like every handful of years, he starts finding a creative way to tell me to stop talking. And another thing, right around that same time, is I gave him a new nickname. He's always squeezing like my biceps and my shoulders and stuff. And so I started squeezing his little arms, and even though he's super strong, he's not very muscular looking or feeling. So I squeezed his little arms, and he's also very white. And it's spring then, but anyway, he's been outside a lot, and I thought, boy, he should be a little bit brown by now, you know. Looking at his dad, who's been doing the roofing, he's a completely different color. And I squeezed his arm and I looked at the color of him, and I said, Wow, you should feel it just like a marshmallow. And he thought that was cute. And then I started calling him marshmallow. I would squeeze his arm and say marshmallow. And he said one day, smushmallow. That's what he said. He doesn't say marshmallow, he says smushmallow. So he goes, smushmallow, eat me. And I just love the association, you know, like you can tell where his mind is and how it works. And then he said, smushmellow man, eat me. So that was funny too. And now I just call him my marshmallow. Anytime that he's getting pissy with me or with anyone, I'll just squeeze his arm and call him marshmallow, and it makes him smile and he gets happy. So that's my new weapon. And one day last week we were getting along really well, and he was really loving this marshmallow thing. I just came up the stairs and I didn't see anyone, but I just said smushy, and he popped out of his room and had this cute little face on him, and he just said, Yes. So now I call him Smushy and Marshmallow, and it just makes him so happy. Uh so those are my cute little stories.

Next Episodes And Fireworks Tips

SHANNON CHAMBERLIN 41:39

Um, in my next episode, a couple weeks from now, I am aiming to start dissecting the emails and stuff that accompany the entire experience of his so-called senior year at the new high school here in town. Not new to them, but new to us. Um, it's not gonna be covered in one episode because it was a thing. It was a whole thing. It was a life-changing thing. So I'm just gonna start getting into it and really give you as many details as possible. It might be hard to listen to because you know, I'm gonna keep it real. And it just might be hard to live through it or relive things that it reminds you of, or to, if you haven't been through any of it, it might be a little difficult to even comprehend that some of this stuff happened and might happen with you guys. Um, but I hope that you will come back and listen and try to get through these episodes because I really think that this information needs to get out. You guys need to know about some of the stuff that we've been through because it is a possibility for you. And I think that if I were more prepared, if I had heard stories from other parents in our positions, it might have at least been a little easier to deal with. I don't I can't say that it would have changed the outcomes at all, but it might not have been so devastating, I guess is what I'm getting at. I hope you guys are having a good summer. It's July 1st. They have already started these stupid fireworks around here, and our son is starting to tolerate it a little bit more, but I mean it's like some kind of PTSD that he's got. As soon as he hears a boom, it could be three towns away. If he hears that boom, he instantly covers his ears and he looks like it's World War III. He just looks terrified and he says that he's terrified basically in his own way. And every time I see this happen with him, I think of all the parents and caregivers out there who deal with children who deal with this. And I hope you guys are able to cope with it. And if you have found any ways that help your child and your family members cope with the big booms and the scariness of the Fourth of July holiday, please share it with me in an email because any tips and tricks are always going to be welcome by other families. So if you have anything to share, any ideas that I haven't shared and that you've come up with on your own and you want to help other families, let me know and I will share those in my episodes. The easiest way is contact.parentingsevereautism at gmail.com. You can also reach me through instant messenger on my parenting severe autism podcast Facebook page. I'm also on TikTok, Instagram, the same thing, Parenting Severe Autism Podcast. Thank you so much for listening. Thank you so much for sharing my episodes and for continuing to come back. And thank you for your feedback as well. Hang in there. You're a superhero.