Parenting Severe Autism
Parenting Severe Autism
EP. 29 Firing Family
Are you ready to be part of a journey that is filled with family turmoil, vacation disaster, and the harsh reality of parenting a child with severe autism? This is a candid recount of our recent family vacation that transformed from a much-needed break into an exhausting ordeal that tested our patience and resilience. We grappled with the disappointing behavior of a family member whose unpreparedness and lack of support turned our exciting getaway into a nightmare. We had to deal with a non-functioning camper and the surprise of missing pre-prepared food, all while trying to keep our spirits up for our son.
In this episode, not only do we share the emotional toll this trip took on us, but also the subsequent family conflicts that unfolded. The rude behavior and lack of respect from the family member invited unnecessary tension, and it's something we refuse to tolerate. Finally, we share some advice for parents navigating the school system for their autistic child. This episode is a stark reminder that amidst the tough challenges of parenting and family life, the importance of self-care and independence should never be overlooked.
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Hello and welcome to the Parenting Severe Autism Podcast. I am your host, shannon Chamberlain. I'm so happy that you're here with me today. Well, it's good to be back.
Speaker 1:I took some time Summer was supposed to be mainly focused on fun, recreational activities for the three of us to kind of reset everyone, because it's the first time that we've actually been able to take some time to get away. It didn't turn out the way I was hoping. The way that everything started was just with me coming home from work one day feeling like I just wanted to run away from everyone and everything, and instead of doing that, I told my husband how I was feeling and that I really needed to get out in nature and go camping and I needed them to go with me so that I would come back. We had no way to do it. You know it's hard with our son. As much as we might like to just pack up and go, there are so many things that you have to consider and plan for. So it took almost a full two months before we were actually able to go anywhere and really this episode is just kind of I don't know, just kind of talking about the disappointments that come with family. It's basically a sad realization that we have to fire our last semi-reliable family member, because our lives are just harder with that person now instead of experiencing a little relief when we bring them along. So I just wanted to share the story with you real quick.
Speaker 1:We did end up taking our son to a jellystone campsite, which was great. The cabins that I found were all booked until next year. So about eight months ago, the father-in-law purchased a tow behind camper and he's never used it. So I thought, well, hey, let's ask him about it. And it does sleep four people, so that would be great if he could come with us and do the normal thing. He's only been on a couple trips with us and the reason that he goes is because we let him know that we need his help to watch our son and give us a little bit of a break.
Speaker 1:I was at my breaking point when we took this vacation and we made it known that we needed some help and that we needed a break and that we needed him to come with us and we would pay for everything if he would just come with us and help us. So that was the deal he had. Oh, let's see, he had 75 days notice from the time that we thought about it and found a campsite to the time that we actually went to the campground. So he and his brother bought this camper. They've never touched it the whole time. They never cleaned it, they've never inspected it, they've never tried to run the air conditioning or check any of the functions, they've never cleaned the vents from the floor for the heater. You know they've never done anything and I didn't know that. I thought you know they're retired. All they do is stay home all day. You would think they would at least play with their new toy. So I thought it was going to be a little bit better than what it was.
Speaker 1:There were absolutely no preparations made over that 75 days of sitting on his ass and first of all he wanted to bring his brother, which now puts five people in a four person camper. So that didn't go over and we worked that out. It was great. We didn't know if we had working sewage and he didn't know how to hook up the hot water. We didn't know if the air worked or the heat. We didn't know if the stove worked or the faucets or anything. There was just no education. It has a full manual, but these are things I didn't know, that I didn't know until we got to the campground. So that was fun learning about that.
Speaker 1:My spouse and I prepped food for days. It took almost a week and a half to get all the food purchased and then prepped and ready to go. A lot of it we pre-cooked, like breakfast, like French toast and things like that, you know, and I made a lot of things in advance to where all I had to do was just fry it up a little fritters and stuff. And as my husband is prepping things like French toast, the father-in-law is walking by and taking servings that he wants to eat and we didn't make extra so that that he screwed himself in the end. There were days that he didn't get a meal because he already ate his meal a week and a half before we even went camping. It was just ridiculous. I mean, you know I need an adult.
Speaker 1:Anyway, we had to pack this camper on the hottest day of a heat wave and this man didn't even try to help. He never even went out and opened the windows in preparation, knowing that this is the day we're leaving, this is the day we have to pack everything. He just sat there and smoked and did nothing. And I was so hot and sweaty I took four showers the morning that I had to pack this camper. I was just dripping with sweat. It was just stupid and there was no help. All he had to do was open the windows, you know, and of course we opened them. But I mean, a little help would have been nice.
Speaker 1:He was able to pack his own. He bought a coffee pot, brand new. He packed it all by himself in the cabinet and he packed some paper towels and bath towels and wash rags and of course a lot of his cartons of cigarettes and just as much luggage as all three of us, and he put all of those things except for the luggage, all of those things, in cabinets and drawers, all by himself. He did it all and then never bothered to stow his luggage and we were just tripping over it almost the whole time until I finally threw it under his sleeping area. So that was just the frustration, basically, of the beginning, right when we got to the campsite. It took him forever to park the camper, he did it from the wrong direction. It was just a disaster and everybody was angry and upset and nervous and you know that was how it started. Then we found out that he didn't pack a blanket, so my husband had to give him a blanket, and then my husband and I had to share a blanket, which is a recipe for disaster, but we did okay.
Speaker 1:Then, for some reason, in the same day that we got there, they had to run to town. There was something that we needed and we had to go into this little town to their Walmart and get something, and I don't remember what it was, but the store on the campground was already closed and I told them. When I realized that there was something that was needed from the store, I said that, okay, I'm happy to know that you guys will go, you three boys go. I'm looking forward to having a little bit of alone time here at the campground just to sit and relax, because I'm stressed the hell out. So when it came time to go to the store, the father-in-law says now I don't wanna go, but I need you to go. I need you to go with them so I can sit here in the shade and think about life. I just need some time, I don't wanna go. So he knew I wanted to be there alone and he decided to ruin that for me. So I had to go to the stupid store with my boys and it was fine, but that's not what I was hoping for on my vacation that I am paying for, and that was the first day.
Speaker 1:Before bed, that first day I told him I think you should get your coffee pot set up so that you don't wake up our son when you get up at 4 am and you wanna have coffee. I think you should get everything set up, get it filled up, so all you have to do is push the button and have your coffee that way. And he didn't do it. He left it in the cabinet and then, when I woke up and made my coffee, I got up first and he got up like third and he realized he didn't pack a coffee cup. So now my husband has to give him his coffee cup and he has to wait three hours for the camp store to open so he can go get a stupid coffee cup, because he didn't spend any time planning his existence on a five day camping trip.
Speaker 1:Later on, after breakfast and coffee, we asked him to walk our child down to the pool and make sure he was comfortable for a few minutes and then come back because we already got him acclimated. His dad took him on the first day to all the different water features. There was a lake and an obstacle course on the lake and then there was a pool and just all kinds of fun stuff. So he got acclimated to the surroundings the first day. The second day, all we asked for was, while we clean up from breakfast and try to get a little relaxation and quiet time in, our son wants to go to the pool. Will you take your grandson over to that pool and make sure he's comfortable for us?
Speaker 1:He says no, I don't feel like it. I don't feel like it and I said that's the whole reason you're here is so that you will take care of him with us and help us and give us a break. Well, I don't feel like it. So my husband and I took a little ride in the truck and I told him right then. I'm sorry to tell you, but he's fired. I am never asking him to help us with our son on another trip.
Speaker 1:Again, this is bullshit. We're paying for everything. We've done all the food. We're doing everything, and it's more work for me than just staying at home. He's not helping at all. He's not taking care of himself. He's not helping take care of our son. He has become another child and I am not having it. So he's done, it's over and I'm sorry, but he also knows that that's the only solution. So this is the first full day that you know I'm calling it day two, but it's the first full day and that has set the tone for my vacation that I needed so desperately. That's how stressed out I have been for many, many months and it came to a head and that's what I had to deal with. Day one Great.
Speaker 1:So as I'm taking care of these children, I'm realizing how dirty this camper is. My son's sleeping area is surrounded by cobwebs or spiderwebs or whatever. So now I have to clean that. Everything everywhere was just dirty. The faucets didn't work right. I bought an RV hose and an RV water filter, not for the RV, but because I'm storing water and he didn't have anything. So he took my stuff and said he would pay me for it later and I would get another set. And he didn't even hook it up. He didn't even hook it up for two days. He didn't even hook up the water filter. And then I asked him why don't you have the freaking water filter on there, then he hooks it up, and he hooks it up upside down or backwards or some stuff like that. I can't even remember.
Speaker 1:I was so mad and we didn't have hot water the entire time. Three days into it I was like hey man, why, why am I not able to take care of my child in this camper? Why don't I have hot water? Everybody needs hot freaking water. I need hot water. Well, I don't understand how to make it work. I have a comprehension problem when I'm reading things and I don't know how to make the hot water heater work. That's, that's my life. Okay. So I tell my husband the reason that there's no proper amenities to take care of a disabled individual in this camper is because the owner has suddenly decided that he has a reading and comprehension problem. So my husband says to him get out your phone that you're always on and go to YouTube and look it up and then fix the hot water. We didn't have hot water the whole time. He refused to do it, even though we found videos, he refused to do it. At one point during this I actually yelled at him kind of through my husband, you know, because you don't want to upset the relative, god forbid. And I just said I'm supposed to be on vacation. I have one disabled child and I feel like I'm taking care of three freaking children. And let me tell you why that happened.
Speaker 1:We all had to go to the store again. Well, we went on a cave tour. So we went, for you know, it was like 45 minutes away and on the way back we thought we'd stop at a store. I get eggs and he decides, the father-in-law decides to pick up paper towels. He gets to the register first, puts his paper towels down and separates our orders with one of those little separators. I couldn't believe it. I thought what the hell that is so rude? I wasn't expecting him to pay for my groceries, but I mean, they feed him, I've been feeding him, I have paid for everything. I even paid his way through the cave tour. I paid for everything and he wouldn't buy the family a carton of eggs. He separated the order. So I paid for my eggs. And then we get back to the campsite. I am dealing with my son helping him.
Speaker 1:I'm on my way out of the bathroom and the father-in-law says I put the paper towels and the eggs and stuff from the store on your bed. I don't know how you feel about stuff that's at the store, but I feel that everything at the store, especially things like paper towels and bags, are filthy. And I came out I said don't put that shit on my bed. I don't want that dirt on my bed. Well, where do you want me to put it? He says. I said well, gee, I don't know, where did you put the paper towels the first time? You packed them in the camper? Where do you keep eggs? Do you keep eggs in your bed? He starts saying to me well, I don't know, you're the one that's doing all the cleaning and organizing and everything I just stormed out. I said you know, fuck that, fuck that. And I went outside to cool off because that was completely unfair. And then, when I came back in, he had put the eggs on the skinny, skinny little ledge right in front of the sink, very precariously set there, and he put the paper towels right in my path on the floor in front of the sink.
Speaker 1:That is the appreciation and the thanks that I deserve. That is the treatment that I deserve for taking care of his ass, paying for everything, cleaning everything, cooking everything, doing everything while he sits on his prissy little fucking ass. That's how I deserve to be treated. I was live it. And our son knew I was mad and he actually came in and, in his own way, he asked me what was wrong and I said I'm not mad at you, buddy, it's not you. And I explained the situation and he's just looking at me as if he is really trying to understand what I'm talking about. So I told him he did this and he did that and look, this is where he puts it, this is where he puts it. And I just looked at my son and I said fuck that. And he goes. He says yeah, fuck that, shenandoah, fuck that. I just love that kid. He is very supportive at times.
Speaker 1:So, regarding his level of fun, we were there for five days. I would say altogether he had approximately 10 hours of good behavior, awesomeness, happiness and all that jazz. So that was really nice to see him have that much. I'm very grateful that he had that much time on the good end of things, because his grandfather didn't even know how to open the windows at first, so it looked like it was going to be a lot harder for him, you know, but it was just hard for us and he got to have about 10 hours of fun.
Speaker 1:That is my story. That's why I've been gone so long, because I just have been completely fed up and that was our last resort. I mean, you know, this grandfather was the only person we could rely on periodically to come with us on some kind of family trip and give us a break, and he has completely stopped giving the brick. He'll come and he'll mooch off of us and leech off of us and absolutely not help us. But I'm not interested in that. I already have one of those, unfortunately.
Speaker 1:We are done. We're done with being able to have any kind of relaxation on a family trip. We did take our son a few weeks later to a big, big water park that we've taken him to once before and we had a lot of fun there. But it really is just down to the three of us. It's the three musketeers all the time, no break for us, and it's really weighing heavily on me. But I'm back now. I'm going to try to work through it. I'm finally to a point where I'm not so completely disgusted that I can't even speak. That's why I'm back and I thank you so much for coming back and finding this episode.
Speaker 1:In my next episode. I have some things I need to talk about. Our son is. He's going through a lot of weird stuff right now. I'm not sure, I don't know what's going on, but I'm going to detail these things in my next episode. I'm trying to keep this episode short and I'm going to try to keep them all short, of course, but after that one, we're going to have an interview with dad, my husband. Like I said in my last episode, we're going to begin to examine when things started to take a turn for the worse with our son and all of the events and conditions surrounding the change and changes. Actually, there have been a lot of changes. So those are the plans moving forward. That's what's going to happen over the next eight or 10 episodes.
Speaker 1:I know school's back. I hope you guys are. Oh man, I hope you guys are dealing with it okay. I hope the kiddos are dealing with it okay. Our son is not dealing with things well at all because he's not in school. Summer camp is off right now, there's a full moon, the weather's wonky and he's just on top of these other new changes. He's just having a really hard time, which means that we are having a really hard time. Remember, don't let up on the IEPs. Call as many emergency meetings as you have to Make sure that those educators are respecting your child's needs and your rules, and always try to find an advocate to help you at these meetings and through the school process. You hang in there, you're a superhero.