When Schools Fail: Navigating Autism Education and Therapy

Shannon shares the experience of returning her son to school after he was abused, revealing the challenges of finding appropriate accommodations and fighting the system at every turn.

• School couldn't handle her son's needs, requiring a reduced schedule to prevent overwhelm
• Battle over using a communication notebook that had always worked as a behavior management tool
• School failed to provide mandated therapy services due to transitions being too difficult
• Discovery of intensive therapy through Innovative Counseling that provided 40+ hours of effective support
• Advocating for IEP rights and finding alternative solutions when schools fail to meet obligations
• Recognizing that behaviors are communication and require understanding rather than judgment
• Setting age-appropriate expectations even with developmental disabilities
• Working toward creating Safer Lifestyles Respite Communities based on these experiences

Please follow us on social media and help spread awareness about our GoFundMe for Safer Lifestyles Respite Communities. You can find the link in my bio on all platforms or email me at contact.parentingsevereautism@gmail.com with your stories and input.

Chapters

• 0:18 Welcome and Respite Community Update
• 3:17 Returning to School After Abuse
• 7:20 Fighting for Appropriate Accommodations
• 14:59 The Notebook Communication Battle
• 20:10 Discovery of Innovative Therapy Options
• 24:54 Fireworks and Age-Appropriate Expectations
• 29:39 Behavior as Communication and Family Dynamics
• 33:21 Finding Peace and Future Plans

Transcript

Speaker 1: 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. A quick update on my big project the S. A. F. E. R. Lifestyles Respite Communities is that I'm trying to quickly learn how to do, I guess, graphic design or something. I'm trying to learn how to do animated video things. I'm incorporating an animated build - out of our flagship location and I tried to outsource that because I simply don't have the time to do something like that. But I am now making the time to do that because I tried to outsource it to someone on Fiverr and they want around $800. And that's typical across the board. So I don't..... I have more time than money. So I'm going to work on that myself and I have a video that will be coming out with that audio that I'm going to just spread across as much social media as I can and I'm hoping that you guys will share this video. When it comes out It'll go on my YouTube and then I'll have little pieces of it sprinkled around on Facebook, instagram and TikTok and I've started a GoFundMe for it. So if you wanted to check or tell someone else to check my link on any of my socials. They can check my link in bio and be able to donate to the GoFundMe, which is all set up just to fund this dream community of ours. And if any of my episodes or stories have touched you in any way, made you laugh, cry or just feel like you're not as alone as you thought you were, you can always support the podcast by clicking the support link and you can donate as little as a dollar and, as you know, I am trying to save up money to help other families who are in need and cannot afford some of the typical things that kids like ours need in regards to food safety, therapy, etc. Thank you so much for always liking and sharing my episodes and my posts on social media. It is definitely helping me to grow. I've experienced a little bit of a backslide with exposure, but I mean it's summer, so I understand. that

Speaker 1: 2:32

Yesterday was the 4th of July and I was fortunate enough to have my spouse and my son. My son actually said he wanted to come and hang out with me for 4th of July. I had extended the invitation weeks ago, but my spouse said he wasn't going to come. I don't know. I thought it would be awesome. I mean, yes, it's already known that our child does not like fireworks, but I mean he likes to look at them, he just doesn't like the sound. And I'm on the river down there at the campground and I just thought it would be amazing, and it truly was. So I'll wrap up this episode with a quick story about that.

Speaker 1: 3:08

But I wanted to get back into what happened when our son started to go back to school after they had blamed us for making him worse. One thing was that we learned very quickly that he could not handle a full week. So, because we had already pulled him out of school and we knew that he was abused and mistreated by not only one teacher, but just everyone seemed to have their own idea of how he should act, how he should be treated, what he should be made to participate in, and apparently what he actually wanted was not a consideration. So we were very watchful this time around. We had gotten a false sense of security from all the great experiences he had when he was younger in school and we thought everything was going to be fine until he got abused. So now the whole landscape of school has changed for all three of us. We start watching his energy levels, his facial expressions, his behaviors and his echolalia very closely to see if there are any even minuscule differences that we didn't see when he was at home with us. The first thing we learned is that he was absolutely exhausted. It was way too stimulating.

Speaker 1: 4:23

At school they had him doing way too much with all the children and the bells and you know just all the stuff, because they didn't want him in a special needs classroom. They wanted him put in general population or whatever you call it. You know, and we didn't like that idea at all, but that was their program. We didn't. I don't know at all, but that was their program and we didn't. I don't know. Our autism advocate lady was helping us as much as she could and she kept telling us that if the school cannot provide for his needs, they have to outsource and they have to pay the bill for the transportation and for the school that they're sending him to. You know the whatever tuition or any charges that would normally occur for him to go to a different school district. That school that he's supposed to go to who's failing and unable to meet his needs is supposed to have to absorb all the costs. So we were just fighting for his rights the best that we could and we had IEP meetings every couple of weeks and they were mostly emergency scheduled, so within 24 hours I believe, and she was always there like a bulldog, and it was so helpful because I we just didn't have it. You know, trying to run the business and all the stuff that we were into and trying to keep our son just above the sad and angry line, anywhere above that would be great, you know, and that's all our responsibility.

Speaker 1: 5:45

We just realized very quickly within the first week that a full week of school was just not good for him at all. He didn't look well, he was very tired, he was irritable, his eyes just looked sick and lost and alone and it just wasn't good. So we thought, well, maybe he shouldn't jump into a full week, let's scale back and call that an accident and let's give him, let's try four days a week. So we tried four days a week. We had to split it, so we did Monday, tuesday, thursday, friday and that worked out pretty well. He just needed that break in between because it was just way too stimulating.

Speaker 1: 6:21

Then we started noticing, first of all, the school didn't want to use the notebook, the communication method. He just needed that break in between because it was just way too stimulating. Then we started noticing, first of all, the school didn't want to use the notebook, the communication method that we had had in place for all those years that always worked. And they wanted to complain about his behavior and him not paying attention and not doing what he's asked and all this stuff. And we're like well, did you write it down in the notebook? All they wanted to do was send me emails, which I will share some with you in my next episode, because it gets a little bit out of hand, for sure. But they're like no, we don't have time to write in the notebook, but you have time to email me. Do you think I have time to check emails? I don't, you know. So that was just butting heads from the start and they just didn't want to.

Speaker 1: 7:03

And we kept telling them it's not a matter of the parents want you to communicate this way because they don't have a computer or something like that. It's that that's a behavioral management thing for our son. He knows what it means when a teacher opens his notebook and starts writing in it. I don't understand how you can deny him that satisfaction or anxiety that he is going to feel when he knows you are reporting his behavior. He loves a good report just as much as he fears a bad report, and that actually makes him act right.

Speaker 1: 7:38

So, no, we're not using the notebook and we don't want to use the notebook. It's too hard, it's too much work. He requires too much attention at school. We can't ask his para to write down every single time that he disobeys or that he acts out. Okay, well, so what are you going to do? You know, they said that they needed motivation for him and they said that they needed consequences for him. And they're asking us and all they want to do is food. They want to use food for motivation, except there are a lot of foods that he can't eat and we don't think food is a healthy method of motivation. I don't care if it's apples and oranges, we don't want him motivated by food. So we told them that. Well, usually the way it goes is that you have to write in the notebook and you can write Jacob had a good day, or you can write Jacob was bad during math. I mean, it's really not that hard. We don't need all the details. It's not even really about that. It's about him seeing you do it. He knows where that notebook goes. He knows it goes straight to mom and dad and it matters to him and we like it that way, because nothing else matters to him. We would like to keep the notebook active. It's a communication device that also helps monitor and improve his behavior.

Speaker 1: 9:04

He will turn himself around really quickly if he doesn't want to get scolded at home for being bad at school and it's not even you know, there aren't real consequences. I mean, what can you do? You're not gonna. You know what are you gonna do. But he doesn't like us being disappointed. His dad is a really good actor at that and he will be very dramatic with his. You know. Oh goodness, jacob, this is terrible. You know he'll do that kind of stuff and it really hits home with our son and we just a little cooperation, you know, just write it in the damn notebook and then, once you write it in the notebook a few times, if he does not respond, the next time he starts acting out, not only do you grab the notebook and a pen, you also say do you need me to call your dad? Because that is the ultimate, and we told them you don't just pull it out every time. That's why you use the notebook. You know it's a progression and if he doesn't straighten up and fly right, then you threaten him that you're going to call his dad and the school.

Speaker 1: 10:10

Just I don't know why, but they just couldn't grasp this concept. They refused to use the notebook. Then they want to start emailing. Instead of calling dad, they want to email mom. And that's not how things work. I don't have my nose in my email all the time. I'm running a sales organization. Hello, I'm on the phone, you can call me or you can just fuck off, because it just doesn't work that way. We never had an agreement. And then they start wanting to text us.

Speaker 1: 10:37

And I am not a phone person, I'm not a cell phone person. When I had a landline phone, I did calls with people. My cell phone was my personal phone. I turned it off and threw it in the corner and there would be days where I couldn't even find my phone. That was not an effective method of communication and I didn't understand why they would even do that. Now, I mean 10 years later, I get it. Everyone's got their phone in their pocket or in their hand or whatever, but back then we didn't. I don't know. I just thought it was really just look, I gave you a working system and you don't want to work the system and it's really not that hard. That was a huge struggle for us. Then I found out that when they started sending information home, finally they were not sending information about therapy.

Speaker 1: 11:30

This all moved very quickly. I know I said we're in IEPs all the time. Well, this was, you know, I'm talking about the first week to two weeks of school here. Before we had IEPs all the time. We had only had one or two already, you know. But we realized that there was no report on OT or speech. So during our IEP we went in there and we're like, hey, where's OT and speech and why don't we get reports on it? Oh well, we're here, but we were having trouble getting him to calm down and we haven't really been able to give him OT and speech.

Speaker 1: 12:01

Like I said in my last episode, that is because they want him in a regular classroom and then they want to pluck him out of that classroom, put him through that doorway and into another doorway. So now you've just forced my child to cross two different thresholds, which for him is an entire sensory processing thing he's got to process walking through that doorway into the hallway, then walking down or around, or however. You get to the therapy room and crossing over that threshold to get into that, and that's a thing. One hallway, one threshold is a 40 minute acclimation period. Now they're asking him to do double that and have no period of acclimation. They just expect him to go right into therapy like everything's fine and regular in his life and he takes 40 to 45 minutes to calm down. That's just the way it is. There's nothing anyone can do about it. That's what happens.

Speaker 1: 12:55

Now they're blaming us and blaming him for not being able to use the therapy services that are offered through school, and it's because of the way they've designed his schedule. We have told them a hundred times it doesn't work that way. And then they kept insisting on having us do IEP meetings during school hours and I kept telling them well, first we were like, okay, that'll be cute, we'll go there and we'll check on him and we'll just look at him a little bit and he'll be doing his own thing and it'll be cute to see him in this environment without knowing that we're here. And then we get there and they've got him in the room. They make us wait and they go get him and bring him in the room. And I'm like, no, no, we have told you this before. You don't go get my kid and bring him through another threshold.

Speaker 1: 13:41

To be in a room with a bunch of adults talking about his problems in front of him, that is not cool. He hates it. He doesn't act right. You wouldn't like it either and I'm not going to do it. And I refused to have an IEP meeting with him in the room and I don't know why they acted like. That was such an asshole move. I never liked it when I could hear my mom talking shit about me in my own house while I was in my room. So why would I want my child to be in the room with every single educator telling us why they can't work with him? They're not there to sing his praises. That's not what IEPs are for. That's for them to attack him and for us to attack them. That's what happens at IEP meetings. So what the hell? Anyway, I just wasn't going to do it. They found a way to let us have the IEP meetings without him being present. It was just a mess. They have absolutely no regard for a family unit with severe autism and how it actually works. I don't know what they expected Just another layer of stress and isolation and refusal to even try to meet us. Where we're at with that.

Speaker 1: 14:43

At some point we found out that they were cutting therapy altogether because he was not able to tolerate the school hours. So because he couldn't go to school five days a week, I guess they had to cut the amount of therapy that they were able to give him. And then the time frame that was allotted for him to have therapy happened to be on a day when he didn't go to school. Let's say it was Wednesday, if that was allotted for him to have therapy happened to be on a day when he didn't go to school. Let's say it was Wednesday, if that was the schedule that we ended up keeping. I can't even remember now, but let's say he stayed on Monday, tuesday, thursday, friday, and oh, it just so happens that we cut your therapy allotment and the therapists are only going to be in the building on Wednesdays, so you actually won't get any therapy. Now, that's what ended up happening.

Speaker 1: 15:27

We also found that he could not ride the bus. There was something going on. They would not keep that girl away from our son. They had extended the length of the bus ride and it was actually faster to just drive him by car Back. When he was smaller he used to have a 45-minute ride to school and back, but he tolerated it well because he was, I don't know. He would just sleep on the bus. He had a blanket and a pillow. It was in his IEP to have such and he was supposed to be monitored on the bus. So someone always watched his back and they put him, they tucked him in and they let him sleep and he was a good rider, you know.

Speaker 1: 16:03

But as he got older we're talking that he's 15, now 16, you know, the children are louder and it just, I don't know, just wasn't working out. So we ended up with our advocate getting them to figure out a new mode of transportation for him to get to school, because he couldn't ride on the bus for over an hour. It was ridiculous. So they ended up having a lady drive a van, a minivan, to our house to pick him up and drop him off every day, and that was awesome. I guess they had other kids in the van.

Speaker 1: 16:34

He ended up completely disrespecting that van driver, because I know I've mentioned this in other episodes he will test you. He will get right up as close as he can to you and flap and he was angry. He was very angry back then. He still can be angry, but he was very angry back then and he would angrily flap, but he never, ever wanted to touch anybody. But he got up in her face when he got in the van and he flapped right up in her face and she flinched and that was it. I mean, first time they ever met. He got right up in her face and that was it. He knew I got this woman, I can scare her anytime I want and I'm going to do it all the time. So he was very abusive to her just as far as knowing that he could make her flinch, he could make her nervous, and he totally took advantage of that. So there was that.

Speaker 1: 17:25

But then we started throwing a fit about the lack of attention to his needs and the lack of therapy options and we got somehow referred to a place it was called Innovative Counseling, I believe, in Wisconsin, and that started a whole thing of therapy. So we first had to have him tested by a psychologist. So those meetings are about 45 minutes to an hour scheduled on the calendar. We were in her office for about 10 minutes. She was like, okay, we're done here. She said that he's definitely autistic and then that set us up for the assessment with Innovative, which is where I got those results that I posted a while back about how severely autistic he is.

Speaker 1: 18:08

That was the meeting. It was like a three-hour assessment and it was really because school dropped the ball. They didn't want to help him and it was a blessing in disguise. So that's just a message of encouragement to you. If your school is dropping the ball and they don't want to cooperate, your IEP. That happens a lot, even though IEP is law. Whatever you put in that IEP is absolute law. If they're not doing it, you do have a course of action, which is to tell them that they must supply you with information and providers who will do what they're supposed to do. So just keep your head on straight and try to let them understand as kindly as possible that your child has rights.

Speaker 1: 18:48

Anyway, they said their first recommendation was 40 plus hours a week of therapy. Yes, that's what they said. They wanted him to have over 40 hours a week of therapy. Because when I first started talking to them. They knew that I had been homeschooling him and they didn't understand that we were trying to put him back in school full time. And they were just like, well, hey, if he's not going to be in school, we should totally take that time and give him therapy. So I was also like you know, this is going to be in my home and I don't know, I don't know if I don't know if I can commit to that, what am I supposed to do? You know, I have to work and all this stuff.

Speaker 1: 19:32

So we started a lot lower than that but we did increase it quite a bit. You know they were willing to give him two shifts per day, five to six times a week. So they're talking like eight to 12 hours a day, six days a week, is what they would have done for him. And I mean I thought that was amazing, just to even it was. I couldn't fathom it, honestly. But first of all, to realize that they really think he needs that much, I'm like, oh my gosh, you know. But then also like, wow, that's quite. That's a lot of dedication that I'm seeing from them compared to what I see from the school and the people who are employed through them, through the district.

Speaker 1: 20:07

So I was really impressed and I didn't know what kind of therapy it was. I didn't have any idea of anything. As you know, I don't know nothing about this stuff, you know. So I guess it was ABA, but they were telling me it was play therapy and it was play therapy. That's all they ever did was play with flashcards and you know, just stuff like that. I didn't see anything wrong with that, and I have heard that ABA is thought to be cruel. It must just be some other vein of ABA that I am not aware of.

Speaker 1: 20:36

I just thought he needed OT and speech and before we even did that, they sent me paperwork in the mail to fill out. Before we even did that, they sent me paperwork in the mail to fill out and they had me monitoring every interaction and how he responded and how we responded, and all and like for two weeks, from the time he woke up until the time he went to bed, and then anything after when he went to bed, if he got up and did more stuff or anything. They wanted a complete record of every single thing that went on that day, not just like I cooked sausage and I fed it to him, but how he was acting about it Any sounds, any actions, any echolalia, any single thing that he ever did, expressions on his face, anything. I diligently wrote all of this stuff down and they used all of that information to devise a therapy plan, in addition to his test results and what they observed while we were there. I couldn't believe it that that was even a possibility to therapy someone that much.

Speaker 1: 21:38

They would come over to the house after school. They would be waiting for him when he got home I would have to give him a snack. They would therapy him through dinner and it was just crazy. So he would get home around 3.30 in the afternoon and he would instantly start therapy, probably until 7, 7.30, I think, is when that stopped. And then they would come over on the day that he didn't go to school. So on Wednesday they would therapy him in the mornings and all the way through into the afternoon, and then we ended up seeing that therapy was actually much more effective than school. So we ended up cutting his week another day short at school. So he only went to school, I think, three days a week and he had therapy the other days and after school on the days that he did go, it was really beneficial. They were working on stuff that the school never would work on. He loved everything that they did. It just sounded like they were playing all the time, but it was really helping him and they were working on triggers with him and those ladies they were so good, they were amazing. I could never, never do something like that. They were absolutely amazing. I wish never, never, do something like that. They were absolutely amazing. I wish we never had to leave Wisconsin because he was on a really good track for getting help and advancing and maturing and growing and everything fell apart when we had to leave While he was at school.

Speaker 1: 22:57

I think the first time he was at school before we pulled him out, he was on some kind of like a coffee team where they would push a cart around and deliver coffee to people and that made me a little uneasy, but I'm sure they made it safe, you know. But I was like, damn, my kid is pushing around hot coffee, what are you doing? But this time, when he went back to school, I believe that they had him working on stocking vending machines as his little job that he was doing, and then I learned that the shop class made him some kind of a thing. They got together and they somehow they you know the teacher communicated the needs that he had and they made him a little. I think it was a toothbrush and toothpaste organizer or something and he would stock it with toothbrushes and toothpaste. It was, I really can't remember and he would stock it with toothbrushes and toothpaste. It was. I really can't remember, but it was really super cute and touching that the shop class made that specially for him. But school was super hard. It never got easier with anything. So in my next episode I will tell you about the adjustments that were made by the school in the name of helping our son and why I didn't think that they were great, and I'll also share with you a string of emails and the tone and everything that had gone on there. I kind of got in trouble, I guess I got hated on by the school because of our communications and I started getting accused of being a terrible person. So we'll share all of that in the next episode. That'll be really fun.

Speaker 1: 24:23

And yesterday was the fourth. So my son said to his dad last week that he wanted to come see mommy and watch the fireworks and my spouse had said that they weren't going to come because he didn't think Jacob would go. So I was pleasantly surprised that Jacob told his dad he was wrong and they wanted to come out and hang out with me. So he did get to see some of the fireworks and they were across the river and very far away and so the sound was muffled and delayed and it was, I think, a little confusing for him. But we could see a line all along the river of a lot of different people doing fireworks and it was really pretty and he really enjoyed it, at least looking, and he wore his headphones and everything. But we were about a third of the way through the fireworks and he was like I'm done, can I go inside? So his dad went and put him in bed and I thought it was super cute that he was out there in the first place. You know I can't expect him to sit out there for 40 minutes and finish the whole line of fireworks, but that was really cool that he tried and that he didn't freak out. But then, after the fireworks were over from the city, the people in the campground started lighting off their fireworks and of course those are super loud because they're right there next to the camper.

Speaker 1: 25:31

You know, my kid is 24. This has been going on all his life and I'm just I'm to a point with this stuff that it's just like look man, I, you, you got to take some responsibility for yourself and how you react to stuff you can't seriously, it's not new. I go in there and he's like freaking out. He's holding his headphones and riding on that danger, that high that I told you he likes to teeter on the edge of disaster. I think that he actually builds this danger up in his head and he likes that feeling of being nervous and on the edge of a meltdown. He keeps looking to us for guidance and all we have to do is say the wrong thing or the right thing in the wrong tone and that'll set him off. And frankly, I'm sick of it. He's 24. And I mean I'm just sick of it. He's not five. I don't care how long he wants to act like he's five, he's not fucking five. So he starts freaking out and you know, oh, it's dangerous, it's dangerous.

Speaker 1: 26:28

And and his dad, you know, was babying him and he kept on the way. We've always kept on. Oh, it'll be okay, it's just a little fireworks. Yep, it's just fireworks, that's right, it's just fireworks. So when his dad was done babying him and he looked to me for more and tried to tell me about being scared and being safe and everything, I just leveled with him and I said look, you know that you're safe. These are fireworks. They do them every year. You are 24 years old. They have done fireworks every year. Wherever we've been, you always hear fireworks. So you know that you're safe. You're still safe After every single year.

Speaker 1: 27:08

Here you are, you're alive and you're well and you're safe, and the fireworks are not coming in here. The fireworks are outside. You are inside, you have headphones, you have a pillow, you have a blanket. Get it together, go hide under your blanket and pillow if you want to. But you're almost 25 years old, you need to get used to this. It's just fireworks.

Speaker 1: 27:29

And he instantly was like oh okay, you know, I swear to God, it's just as much as we play into it. He will keep milking it. You know, and I'm just done. So I'm running experiments now where it looks like his dad still wants to baby him, and that's totally fine. I'm not going to fight that battle, but I'm going to do things my way, as I always do, and when he comes to me for babying and comfort at 24 years old and up, I'm not going to do it. You know, there are times when he needs comfort.

Speaker 1: 27:59

Just the other day his grandmother was over here again and I told his dad watch his behavior, because every time she comes over he ends up hurting himself within two to three days, I think. And then on day four they come to see me and he's got bite marks on his arm and he had scratched his face the night before and he was being a total psycho, according to his dad, the day before that. And again I reminded him your mom was there, which was an awfully funny thing, because we had to go get our Jeep from the shop and we needed a ride. Tweedledum was supposed to take us he always takes us because it's his truck and just out of the blue they had this instant plan when we learned that it was time to go pick it up. And he says nope, tweedledee's going to take you. Okay, well, that's weird. Tweedledee almost never drives. Why would you not want to drive your own truck? So, whatever, okay, fine, so we leave.

Speaker 1: 28:49

We're gone for what they drive to the campground to pick me up and then we drive to the shop. So we're gone like 15 to 20 minutes the whole trip and we come back to the house but here's the grandmother my spouse's mom, and I'm like what? Jake was in bed when they came to pick me up. And then we get home, he's out of bed during his normal bedtime during the day and his grandmother's here. And I just thought that was awfully funny that Tweedledum was aware already that he was not going to drive, only Tweedledee was going to drive us. And then, lo and behold, what a surprise. Jake's out of bed and the grandmother's here sitting with him. I still think that's really suspicious, but I can't get anyone else to agree. So I guess I'm more of a conspiracy theorist than I thought. Anyhow, it did happen. I swear to God, this is what happens. He gets sad, he gets lonely, he gets to knowing that his grandmother doesn't love him the way that she used to, because that's what she's showing him and he doesn't have a way to voice it. So he starts puncturing himself and scratching his head and acting out.

Speaker 1: 29:54

I keep trying to remind my spouse that behaviors are communication. It's not just like I feel like being an asshole. He's trying to tell us something. We have to try to listen or look around. And it's hard when you're in it and you feel like man, I'm having a good day, I've been up for two hours and I'm having a great day, and then here comes your kid just ruining your life. It's hard when you're right there and you may not be able to think of oh, what is he trying to communicate to me? This is not just a behavior. This is his way of talking, this is his way of being verbal. What is it? What is it? What is it? And usually you just feel assaulted and you feel like you have to defend yourself and your peace, and it's different. But if we can continue to try to look at these aggressive behaviors as communication, I think that we might start to see some sort of emotional pattern of hurt or shame or something that he's feeling, that he can't identify and that we have to identify.

Speaker 1: 30:58

I told my spouse the other day hey, I think that she either needs to stop coming over altogether or she needs to start coming over more. That's the only way, because the way that she stops in, you know, with months in between a visit, and then she doesn't make any promises to see him again and the visits don't go the way he thinks they might in his heart and mind. It is causing him a lot of damage and I don't think it's fair. So we need to put our foot down. You either need to tell her come over more often and get him used to seeing you and spending time with you, or just stop fucking coming over, because when you do it this way, it's clearly only about you, it's not about him. If you were coming here to see him, to make him happy, you would do it more often, because that's what he needs. He doesn't need a fly-by-night visitor. He needs someone who loves him and drops by just to show him how much they love him. The way that you're doing it is not right.

Speaker 1: 31:56

So, anyway, this is something I'm fighting for right now, and while he was at the camper with us yesterday and this morning, I saw great signs of peace with him. He seemed very happy and content with us. I don't have a TV in there, I don't listen to TV, I just want silence. I listen to the birds and that's enough. And he is upstairs all the time in this house, where I'm at right now recording this, and his grandfather is always playing war movies and so all he ever hears is machine guns and cussing and yelling and war and turmoil and sadness that's going to affect somebody. I don't care, you know, you think I don't know. Look, we got the old man some headphones that he can wear and listen to the TV as loud as he wants to through his headphones. He refuses to try to wear them or fix them or hook them up or whatever the hell it is. Frankly, I am just sick and tired of being Chick Guyver and the only one who can ever figure shit out. My son has to suffer because I don't know what's going on and no one else does either. So when he comes to the camper and there is absolutely no media playing and he's got this peaceful look on his face and a smile from ear to ear and he's cuddly and happy and calm, it's a really good sign that our dream of being nomadic in a nice motorhome big enough for the three of us is probably going to be good for him. We're really, really trying.

Speaker 1: 33:21

Thank you for listening to this episode. I hope you'll come back for my next one to tell you more about what happened with the school and hopefully I'm giving you some sort of ammo to keep in your pocket for when your kiddo goes back or for any other professional services that you may have to deal with, and I always love hearing from you guys. Please continue to contact me with your stories and anything else that you have on your mind. Again, you can reach me at my email, which is contactparentingsevereautism at gmailcom, and you can also drop me a line on my fan mail at PSA short for Parenting Severe Autism psabuzzsproutcom. And, of course, you can always buy me a coffee and tell anyone you meet who says they want to help people like you.

Speaker 1: 34:11

Tell them about my GoFundMe, Find that in my Beacons link, which is beaconsai, and you'll see it on all my profiles everywhere. That's really the best way to donate towards the Safer Lifestyles, respite communities that we're hoping to build soon, and if you have any input on those, any dreams that would make your life absolute gold with a respite community, I would love to hear from you. Please drop me an email. Thank you so much for listening and sharing. 1,000 downloads a month to get more downloads that's my goal right now. So help me out. Please Hang in there. You're a superhero.