Parenting Severe Autism
Parenting Severe Autism
EP.40: Balancing Challenges and Triumphs: The Journey to Advocate for Our Son
Navigating the world of parenting a child with severe autism can be both a heartwarming and harrowing journey. Join us as we recount the triumphs and trials of teaching our son, Jacob, to communicate and expand his vocabulary. While there are moments of joy, we also confront the struggles that come with Individualized Education Program (IEP) meetings and the frustration when communication with educators falls short. Discover how we balance the lack of clear guidance with the urgent need to advocate for our child's needs.
As we brave the biting cold of winter, we face the unique challenges of ensuring Jacob is dressed appropriately, considering his sensory sensitivities. From the comic chaos of morning routines to the serious subject of empowering Jacob against bullying, we share how humor and patience are essential in tackling these everyday parenting challenges. We also confront the unsettling reality of potential mistreatment at school, underscoring the importance of vigilance and advocacy in ensuring a safe and supportive environment for our son.
Reflecting on the emotional landscape of caregiving, we explore the delicate balance between managing screen time and fostering a nurturing community for our son. Our journey includes the unanticipated lessons learned about the psychological impacts of screen time, along with efforts to teach Jacob basic life skills like handwashing. Through stories of struggle and resilience, we aim to inspire fellow parents facing similar journeys, reminding them of the power of community support and the superhero strength needed to navigate the complexities of raising a child with severe autism.
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Hello and welcome to the Parenting Severe Autism Podcast. I am your Sh., . I'm so happy that you're here with me today. I prefer to read the transcript, and you can't find the transcript on your hosting platform, you can always head over to psabuzzsproutcom where you'll find my transcript, show notes, links to recommended products and also some podcast merchandise. I've got some coffee cups, water bottles and stickers and stuff like that available if you'd like to support the podcast or if you'd like to point someone else in this direction, you can also buy me a coffee. A portion of the proceeds will go into an account to help another severe autism family in need who cannot afford the specialty therapy items, food items or other means of support for their loved one.
Speaker 1:Well, let's get into this new school nonsense that I've been talking about. I want to get this part wrapped up because there's so much more to tell. I first want to say that it's not that he didn't have anything good happen. He was coming home and demonstrating that he was learning things. He was able to give two and three word weather reports. He would say sunny, blue sky or cloudy, cold, rainy. You know things like that. He was able to say the date. He was learning his name, his dad's name. They were trying to teach him his address again. He was learning his date of birth. This is an ongoing thing. He's still he's. You know, he's almost 24 and we still have to work with him all the time on what his date of birth is. Just dates period. There's a lot. It never stops All of the things it's like... It's like that movie 50 First Dates; Every morning she wakes up and she has no recollection of life and he has to put a little movie in for her every single day so that she can relive her life up to that moment, her every single day, so that she can relive her life up to that moment. Or she didn't even realize that she had kids. She didn't know. You know, that's kind of how this is with him. We have to relearn everything all the time and it's really difficult. I'm sure you know that. We'll get into that another time.
Speaker 1:But he was also demonstrating things, new forms of communication which were really cute, and here's one of my favorites - I was talking to him about something and he was sitting in the kitchen chair and I don't even know what I was talking to him about, but I was trying to communicate something of import, and he just starts shaking his head and looks at the floor and he says I need you to stop talking. That was the last thing I expected him to say. Ever, I never. We don't say that. So I knew he got it from school and it was hilarious, just because I mean really? He kept saying it. And when he says need, he says meed with an M because he doesn't form his words. Another thing, back then they had him clocked at a little over a hundred words in his vocabulary, which I thought was fantastic, and they were working up to 150 at the time. So at 12 or 13 years old he was at a little over 100 words in his vocabulary. He was able to take verbal cues and bring them home and use them on me and it was, you know, it was cute.
Speaker 1:But the negative aspects so far were overshadowing what he was learning and what he was able to show us that he was learning. Yes, we scheduled an IEP about why he's throwing himself on the ground when he gets off the bus, why he's so upset every day when he gets off the bus, and we didn't get any answers. Everyone likes to act like he's a mystery, even though he had over a hundred words in his vocabulary, it's still the cop-out for everyone, whether it's extended family or educators. People like to play the oh well, he can't talk card, so we don't know what his problem is, because he doesn't communicate. That's the cop-out that they use. So we just kept scheduling IEPs and as time went on, I learned a couple years later, actually, I learned that IEPs are actually able to be scheduled as emergency meetings and they have to be done within I don't know 24 hours or two days time or something like that, and you can have as many of them as you need to. All of these things we didn't know before, when we never had a need to ride the teachers this hard before. So we were still learning every step of the way and there was no playbook that we were aware of. We scheduled IEPs, we didn't get answers, and I remember at one point I may have told this story before, but I'm just going to go over it because this is all within a short amount of time there was one IEP, and I believe it was. This was either in November or January, and the reason I say that is because it had to do with an assembly. So it was. This was either in November or January, and the reason I say that is because it had to do with an assembly, so it was either like a homecoming assembly or perhaps a holiday Christmas time of assembly.
Speaker 1:Okay, so we get this IEP scheduled. We're just trying to figure out. Why is our son so unhappy? He's very, very unhappy. I'm now walking up to the doors of the bus to get my child because I don't want him falling on the ice and snow when he throws himself on the ground. This didn't stop. This was constant. I just couldn't figure it out. So we go to this meeting. Now we start to find out who these people are, after so many meetings of them saying, oh well, we just don't know. I don't know. He's fine at school, he's learning, he's interacting, he gets along with this male gym teacher. Everyone is nice to him.
Speaker 1:All of a sudden we find that this one teacher says that she basically forced him into an assembly. There was a parade and an assembly in the gymnasium. The parade, I guess, was outside. I don't really know. I was too mad to recall all these details.
Speaker 1:Later she said that she forced him to go to an assembly. He did not want to go. He did not have any protective earmuffs or headphones or anything. He didn't have any sensory tools available to him to help him deal with this assembly and he did not want to go. And in my mind and in his dad's mind, that alone is enough to not make him go. I don't know why she did that, but she said that she basically forced him down the hall, forced him into the gymnasium and do you remember how loud these assemblies can be? Pep rallies, assemblies, all that stuff.
Speaker 1:And remember our son couldn't even deal with just the general noise of a little sports game in a gymnasium that was much bigger for the Special Olympics than a school. I don't know, but he had no protection and no one was there to help him. And she forced him into this situation. Well, no freaking wonder he was so unhappy all the time. No one had any respect for him and his sensory needs. We were pissed. So my spouse went off on her immediately. We both were just like. You cannot do that. He has autism, don't you know what that means? And she says to us well, if you never let him experience anything, he's never going to experience anything.
Speaker 1:So that was the brilliance, the pearls of wisdom that we received at our IEP meeting at that time. We had to put it in writing, put it in his report, that he is not to be forced into assembly situations or any loud parade type things and that he should always be sent home with a notice and a permission slip if they want him to attend. We didn't even have noise-canceling headphones at the time because we lived a quiet life for him. We did this for him. The things that he was used to doing that were noisy were fine because he was used to them and he had been doing them and had his family members doing them all his life. But new things that he is not accustomed to, if they are noisy, obviously he needs a little help coping with that. So that was one of the first gems that we got from them.
Speaker 1:And then in the first week of December I find that parts of his clothing have been removed from his person. When he comes home he is not wearing them. His shirt, I think, was in his backpack and there was a little post-it note on there saying that our school policies don't allow this shirt. And yes, that was our fault. In the nightmare of getting him ready in the morning, we overlooked the artwork on his shirt. His shirt was something that he wore at home all the time, so to us it was perfectly normal, but it was a Call of Duty shirt, I think that's what it's called. There's a movie and a game and it's a soldier. He's got his eye in a scope. It didn't actually have a full rifle on it, but I guess it was bad enough. And I understand. I get it. That's the rules, fine. But when I was in high school, when I wore my Guns N' Roses shirt that they disapproved of, they made me turn it inside out. They didn't make me take it off and walk around without a shirt. So that's what I'm wondering why would you do that to my special kid? That was our fault, but here's what I said to them, to all of Jacob's teachers and aides we are sure that the school faculty is well aware that Jacob had been fighting a cold for the past two and a half months.
Speaker 1:During Thanksgiving break, we were finally able to completely get rid of his cold, along with the recent sinus infection that had stemmed from it, as I mentioned. I don't know if that was related to the smoke being blown in his face or to all the sick kids around Because of the extremely cold weather forecast. We just had a very in-depth family discussion about the importance of layering our clothing in order to help keep us warm and healthy. Obtaining Jacob's understanding and agreement to this concept was no easy task. We finally got his consent to include long-sleeved shirts over turtlenecks in the layering process. When Jacob left for school today, the temperature was well below zero. He was prepared. He layered his clothing just the way we talked about. When Jacob arrived home from school, the temperature was a mere five degrees. We were horrified to see what he was wearing under his coat.
Speaker 1:Someone took it upon themselves to remove Jacob's long-sleeved shirt his second layer over his not-so-heavy turtleneck. Not only is undressing our child without our permission unacceptable, it also puts a major damper on the progress we made at home with our child in the action of layering our clothing. If we say yes and the teachers say no and proceed to undo what we worked to create, that is sending a very confusing message to our son. We need the entire school faculty to receive the following message, and of course this is in all bold capital, underlined print under no circumstance is a faculty member or student to remove clothing from our child without first obtaining our verbal consent. It goes on to read someone should have called us and told us there was a problem and we would have brought a different shirt for him to wear. We don't ever want to see Jacob lose his layers in this sort of weather again. If the school policies are against the artwork on Jacob's shirts, the least you could have done would be to turn it inside out and allow him to still wear his layers of clothing. You have no right to decide what is warm enough for our child. Also, at the very least you could have allowed him to wear the shirt when he went outside. We completely disapprove of your actions. Hope you understand why. So that was my first major communication to this new school.
Speaker 1:So yes, we had many concerns. You know he's very skinny. He's always been skinny, almost like POW skinny at times and they say it's just because of his constant stimming. He burns so many calories he just can't keep anything on his bones. You know, with him being sick, all of that stuff, we had never been in such a cold climate before. The weather was so cold for those first two years that the wildlife died. From there all the way up into Minnesota, the wildlife was dying because the winter was so harsh. They didn't have anything, nothing to sustain them through the winter. It was terrible. And they are sending my child home with half of his clothes off. I was just pissed, obviously.
Speaker 1:Here's the other thing. You know, I taught Jacob something, right? I love to empower my boy. Before he went back to school the next day I sat him down and I taught him look, nobody takes Jacob's clothes off at school. You could tell he was upset about it too, because he lit up instantly. He knew I was getting ready to teach him something that he could use. I asked him who took the shirt off and he said teacher. So I taught him if you're, if a teacher or anyone, if anyone touches you and tries to take your clothes off, this is what you say. I taught him to kind of put his arm out to get arm's length away. Keep them away and start screaming no teacher, that's a bad teacher. No teacher, that's a bad teacher. Bad, bad teacher. And he loved that. Of course, he loves yelling at everybody. I think he still knows that lesson to this day.
Speaker 1:But I have to teach him how to wash his hands. For 15 years I don't know. So why was it such a nightmare to get him ready? Well, of course we had the new shoes, where you know he has to tie them, so we were pretty much tasked with tying them, and if it was snow then we had to get his snowsuit and his boots and all that. We were teaching him how to get some of that stuff on. He could step into his snowsuit, okay, but the rest of it was just kind of up in the air. He really needed an adult to help him with that.
Speaker 1:However, he was so miserable that he just wouldn't cooperate. He would come down the stairs while I'm cooking in the dark for him before I even have my coffee, trying to get him a good start to his day. He would come down hissing and screaming and just all kinds of stuff. So our first interaction every single weekday was I'm silently cooking, he comes out of his room and he goes and does all these terrible noises and I say no, and every day that's how I got to start my morning. That would kick it off. And then, after he ate, which became more and more of a task he was so depressed, I swear to God, he was so depressed. He didn't even like his favorite food anymore for a task. He was so depressed, I swear to God, he was so depressed he didn't even like his favorite food anymore for a while. He went from eating within a normal time frame to taking forever to eat. And now we're like, hey, you got to hurry up, you got to get ready, but now his pants are falling off, he's not doing anything, he wasn't cooperating.
Speaker 1:I guess is what I should say, the funniest memory of all of that. I didn't think it was funny, but his dad thought it was hilarious and since he did, he re-delivered it to me after the fact and it is pretty funny. So Jake's running around not cooperating, his pants are falling down because he didn't put his belt on and this became a thing. He would either have his belt on and then take it off, or I don't know, but it just became a thing every stupid day.
Speaker 1:One day he was giving us so much trouble it was time to go. I asked him he's, you know, just just pissed, not having it. We're just not getting along at all. And he wouldn't get this and he wouldn't get that, and he just, he just would not cooperate. So by the time it gets to the actual outerwear, I'm pissed and I said, as he's coming down the stairs, I see that his shirt's tucked in and he has no belt and his pants are falling off. And I said where is your belt? I had already sent him upstairs three times to put his belt on and he comes downstairs no belt. He says she's upstairs. I said then go get her and his dad. He held it in really good.
Speaker 1:But after Jacob left the house, his dad just lost it started cracking up. But that's the kind of relationship Jacob and I have He'll give me shit and I'll give it right back. But yes, it was that kind of thing. He went from being a totally cooperative, loving, obedient child to being this absolute nightmare. Okay, now the school knows about the shirt and now he is empowered to start yelling at the teachers if they touch him right.
Speaker 1:So we call another IEP meeting. Surprise, surprise. We're saying hey, first of all, don't undress my kid. I hope you got the notice. Secondly, he's still very upset on the bus. He's visibly crying when I see the bus pull up. What is going on?
Speaker 1:And then that same idiot teacher that forced him into that situation at the assembly goes on to say at this meeting, new information that seems to have been going on as long as school has been in session, but she just didn't think anything of it until this particular day. She says, oh well, there is this girl that likes to sit by him on the bus and she'll save him a spot and she'll say hey, jacob, come sit over here. Well, that didn't sound too bad. And she goes on to say I think maybe she's you know, she's kind of feeling like his big sister. She wants to be a big sister kind of energy for him and I guess it can be a little overbearing. Maybe he's seeing it as overbearing or controlling. She described a couple actions, I think, and we just said oh, you mean a bully, you're condoning a girl bullying our son on the bus and you never told us about this. He can't tell us why. Why didn't you tell us? So we go home and I go up to the bus driver and I say that girl is not to sit by that boy ever. Do you understand me? I don't want them anywhere near each other. Can you please help us? He has special needs and she does not care about him, she doesn't know him at all and he is crying every day. He gets off of your bus and I think you need to do something about it. Oh yeah, okay, sure, and there's supposed to be a monitor on the bus. I don't know what the story was with that.
Speaker 1:They were separated for a few days. He had been a little more calm during the few days they were separated. Then they were not as separated. They were really a lot closer than they were before, but he wasn't as pissed off. He wasn't throwing himself or crying at the time, but they were pretty close. And then the next day their seats were even closer and I said, hey, man, what are you doing? I don't want her by him.
Speaker 1:And it became another IEP meeting. So now we're like okay, why don't you do something to help my kid stay away from that girl? I don't want to go back to where we were before. And she says well, you know, I have both of them in two or three I think she said three of her classes. I have both of them in three classes together and they sit right next to each other and usually there's a partition dividing each desk so that every student has their own private cubbyhole. But when they sit in my class together, I remove the partition.
Speaker 1:It is out of pure love and light, that I want to strangle this woman when I hear this what the hell are you talking about? Why would you do that? You just told us two weeks ago that she was bullying my son and that you've known about it all this time. And now we say we want them separated, so you smush them together. Are you arranging a marriage? What is wrong with you? And she basically said well, I really don't care. I don't think we got anything resolved there. They just they pretended yeah, okay, we'll, we'll try to do what you say, but you have to understand our class isn't always set up just to deal with him.
Speaker 1:And they started to tell us about opportunities that were coming and I kind of started to feel like it was a carrot and stick situation. They started saying well, if he can just get through this year, halfway through next year, he'll be old enough to enter into the life skills program. And we're like, wow, what's that? We had never heard of this before. And they said, oh well, there's this separate building in this other town, you know about 10 minutes away, and they would take a special vehicle over there for kids aged 15 to 21. At the time in Wisconsin, the school age for kids like ours was 21. So they could get school all the way through their 21st year. So we were like, oh wow, six years, that's awesome. What is it? And it turns out that it's a program where these kids go to kind of like a house environment and they learn how to do chores and cooperate together and work a schedule together and they start learning life skills under supervision. They have a whole setup so they can make beds. They could just do things.
Speaker 1:At the time we didn't really have a lot of dietary restrictions going on, except for the regular sugar and dyes and stuff like that. We weren't fully gluten-free for him or anything like that. So we weren't too afraid of him learning things in an environment like that. In fact we were very optimistic that this would happen for him and we were really getting excited about okay, well, let's just finish out the year here, because then he'll only have a few months and as soon as they are willing to accept him into the program, he'll go into that program for six years. He'll have peers that he knows. He'll have skills that he's developed. He can really enjoy himself. Because obviously school, the way that it's designed, is not for our kids. I don't think any of that stuff works for kids like ours, and it was almost like hey, put up with our bullshit, because here's this pie in the sky, there is a place that he's going to be able to go and the school's paying for it. It is still schooling, but it's life skills instead of academic skills. So great, awesome. So now we're excited. Then I'm going to say this had to be. I'm going to say it had to be February when the final straw happened.
Speaker 1:Okay, and I know I told this story. So this is the bath story. I was giving him baths because he was so miserable and I just wanted to give him something that would make him feel pampered. We weren't able to get to the bottom of why he was so unhappy. Despite all the meetings and all the corrective actions we were trying to take with everybody, he just didn't seem to be getting any better, and the only thing I knew that gave him a little bit of happiness and nurturing were baths. He loves my spa days with him, so I started bathing him almost every day of the week just to help him relax and decompress and feel pampered and loved. I couldn't bear to try to teach him how to bathe himself anymore. I just didn't want to make him work for it anymore. You know, there was only so much I could do to make him feel happy. So I'm bathing him and I know you heard the story if you've listened to my other episodes, so I'll go quick.
Speaker 1:But I was cleaning behind his ears and he said ow, real small and quiet, and it just instantly I my heart dropped. I thought I broke him. I mean, that's always your first thought, right? Oh shit, I broke him. Then I start checking him over head to toe and I'm like did I do that? Was that me? Did I hurt him? And that's when he said teacher, hurts me ear. And that's where I asked him to show me what happened and he was afraid to touch me. And I told him to show me what happened and he was afraid to touch me and I told him it was okay. And he put his thumb and forefinger around the cartilage of my ear and gave it a squeeze. He looked like he was going to be in trouble about it and he never gets in trouble, like you know. So that really was sad and damaging and alarming all at once. And I babied him even more after I learned that. And then his dad. I asked him to show his dad the next morning because his dad was at work at night. He was afraid to do it to dad and we said it's okay. And he did the same thing to dad, but he squeezed his ear harder. We were just devastated.
Speaker 1:So we decided to keep him home for a couple of days. We just called him in sick and we didn't know what to do. We were just beside ourselves that this would happen and he, even though he had that history of doing sneaky little things like changing the message in the notebook to make himself look good and stuff, even though he had done stuff like that, we didn't feel that he was gonna just make stuff up. He's a pretty reliable source. If he's talking and he's saying the words, then he must mean it, it must be true. We kept him home for a couple days. That was probably on. I'm guessing that was on a Wednesday, you know. So we kept him home for the rest of the week and then on Monday I go to feed him breakfast. We're still talking about what to do. We had scheduled a meeting for the coming week and we didn't know what to do.
Speaker 1:He's sitting at the table for breakfast with his head in his hand, and I have never seen him sit like this. He's such a bubbly five-year-old personality, even at 13. All the way to now, he's a bubbly, vibrant five-year-old personality when he's in his best form. And that was gone. His dad sometimes wasn't around to see it and I had to either go grab him or record it for later. But my most memorable thing of his misery is him sitting at the kitchen table with his head in his hands and then just shaking his head. He has his eyes closed and he looked really grim and he was just shaking his head in silence and he just looked like, like, like. If he was neurotypical I would have judged it, as he looks like he has no one to talk to. He looks like he has no support. He looks like he thinks nobody cares and he's in this private hell all by himself. And it broke my heart as I watched him eat that morning.
Speaker 1:I just decided that I couldn't send him to school and we ended up keeping him. Him to school and we ended up keeping him. So I know that, you know. I know that we should have probably pursued a lawsuit or something. We didn't know what to. I don't know, I don't have any words. Honestly, I can't defend our actions. All I can tell you is how we felt about it, and here's how we felt. We didn't want him to suffer anymore. We didn't want him to struggle to find the words or to not be able to find the words at all and go through things that he could not tell us about. We didn't have access to any kind of spy cams. We didn't trust the teachers to be honest with us. We knew that they already used his disability against him as, oh, we can't communicate with him. We knew that this lying bitch at school was probably going to continue to lie. We knew that we were trying to run a business, still build the business, keep our house afloat. You know, if we missed one day of work, there was a good chance that we wouldn't eat for a couple of weeks because we were in direct sales. There was nothing else for us. So we had to do it, and I was a significant part of getting those appointments. That was my job, and then my spouse went out to sell at the appointments. We felt that we could either go through all of that and try to find an attorney and try to sue the school district and try to fight the fact that, no, he can't talk all the time and no, he doesn't have a great grasp on reality, and you know all the things that they could possibly throw in our faces. We just decided that we just couldn't send him back and we ended up pulling him out of school. So the next adventure will start in my next episode.
Speaker 1:I wanted to say I found out what the golf ball size, bruise and welt was on his arm that I talked about a couple weeks ago. He's biting himself now. I know that might be normal for some of you, but we've never had that before. I've never seen him do it anyway, and I've never seen bite marks on him. I did have one time where his uncle's girlfriend's son was. I don't know, he must have been three or four and my kid was probably 10, but he's a very affectionate little guy, you know, and when someone's snuggling up on him he just leans into it and he giggles and he laughs, and he doesn't know anything but physical affection. He doesn't know pain inflicted by others. At that time he hadn't had his ear grabbed by a teacher yet. He was younger. But I stood there and watched this little boy come up and start snuggling on my kid's back and my kid was like and this little boy bit him in the back, was like and this little boy bit him in the back. I instantly start banging my fist on the window at these two people that were supposed to be parenting this child and telling them your kid just bit my son and they didn't do anything about it, but my kid's over here crying. He had never had a false affection before. He thought he was getting love. And then he gets bit and he almost drew blood. I was so mad. But now I'm seeing my kid bite himself. I couldn't believe it.
Speaker 1:It was a Sunday. I have some nerve Every Sunday. I wake up thinking that this is my day, like, oh, this is my day to relax, I'm going to have a great morning, I'm going to relax, I'm going to do what I want to do. Just a couple fine Sunday mornings ago, the first thing he did was the first thing he does every single Sunday, and I apparently have trouble learning these lessons right. So he starts, he comes downstairs, he doesn't have his medicine, water, and he said I'm sad. First thing I'm sad. And I said why are you sad? And he says usually, you know it'll be some bullshit. He'll say, oh, spider-man, you know, or whatever. But this day he says I'm all alone, I want to go home. And you know that hits me in the heart. Every time he says that, either one of those statements and he said them both at once, it's like he's got the key to me. He knows, you know, but also I think he's just being honest.
Speaker 1:As you know, we're not in a great environment right now, but I'm grateful for the roof we have over our heads. I'm grateful that we have, you know, the walls around us. We have heat, we have food, we have everything that we need and we have very little bills. So that's exactly how we need it right now. However, it is not the ideal situation, right, and I have to always say, well, this is home. So this time I said well, jacob, this is home, you're with daddy and doll and papa and you're not alone. It will get better, I swear. I promise it will get better, and it's really hard, you know, but I really believe it's going to get better, because I'm taking all the steps that I know how to take to build something for us and people like us, taking all the steps that I know how to take to build something for us and people like us.
Speaker 1:Anyway, he takes two more trips up and down the stairs to begin his meltdown. He doesn't melt down in one spot, it's all over the place. Of course His dad's still in bed because it's Sunday and we have some nerve, thinking we're going to chill. He comes in just storming in and I know he's going right for his dad and I didn't want him to do another startling dad morning and get popped in the head or the leg or something because dad's sleeping and he's going to scare the shit out of him, right? So I tried to hold him back and I usually don't try because I don't know, I'm not good at it, but I tried to hold him back and it did work enough to get him to try to turn around. So then I grabbed his robe and I was like oh, come here, I want to show you something. And I was just getting his cannabis medicine that he now requires six hours earlier than usual. So I'm just holding onto his robe because he hasn't yet learned to slip out of sleeves, while I'm holding onto his outerwear, I have him watch me get the medicine. So now he knows what we're doing. And we're going to go and have a shot of medicine and we get into my living area. And we're going to go and have a shot of medicine. And we get into my living area.
Speaker 1:He acts like he's calming down. I pulled up the chair for him to sit next to me while I dose it out. He sits down and he psychs me out. He had me thinking he was going to take a deep breath, a yoga breath, and he takes a deep breath in and then he bites the shit out of his arm right in front of me. And I couldn't believe it. And I'm not shocked. I mean, I don't mean that I expect him to bite himself outside of my vision. I just mean that well damn, I didn't know that you were going to do that. When did you start doing that? I was horrified that he's biting himself.
Speaker 1:Then he starts head punching. He's punching his head, biting his arm and punching his head. The punching his head has been going on for a few weeks, but now he's biting Jeez. And he also scratches the hell out of his face lately. And he doesn't have any nails they're so short there are no nails there. But he I heard him in the tub the other day. He was seething. I was downstairs. He was in the tub upstairs and that's kind of right above my hallway and I could just hear him making these awful noises, sound like a werewolf or something up there. We were like hey, calm down. And when he got out of the tub his head was just bleeding. He just scratched the hell out of himself and that's the second week in a row that he's done that and I swear it's like he has a day of the week for each action, but Sundays all the actions get combined together. So these are really fun. And this has been going on Sunday.
Speaker 1:Nightmares have been going on since about, I don't know, 2014, 2015. And for some reason, I still think I have the right to have a calm Sunday. I don't know. I can't get it through my head. Apparently, he's got his plans. You know, I don't know why I can't conform to his plans. Later on, after several more trips.
Speaker 1:Now, his dad is up. He's up and down the stairs, up and down the stairs, he comes to dad and he says I'm sad. And his dad says did you see something? Sad? And Jacob said dad's dead. And he kept saying dad's dead, dad's dead. So he kept saying it and then he starts crying. And then I asked him, jacob, was it a bad dream? And now he's repeating bad dream, bad dream, bad dream. And he went from sobbing to lilting and skipping I love you, dad, night, dad Love you. I couldn't believe it. And he does this all the time and I just can't understand. I'm still reeling from the way I've been treated for the past two hours that he's been awake and he's running around skipping and singing now in the blink of an eye so as he skips off to bed and puts himself down.
Speaker 1:I started just kind of talking to my spouse about the weekly Sunday morning nightmare, how I always seem to just forget and start my morning as if it's mine and my day to chill. And then this shit happens all the time, and I told him how, just what I told you. It's been going on since we lived in Wisconsin. Then I told him I said but maybe today, though, maybe it really was real. Maybe it was all about a bad dream. Maybe he was really freaked out.
Speaker 1:What if he dreamed that his family was gone? Maybe he really did dream that he was all alone. That would be devastating for someone like him, right? I mean, he's not oblivious to the fact that we are the only people that take care of him and treat him the way he wants to be treated. I mean, look back to our meeting when we picked him up after his time with his grandparents and he collapsed in my arms sobbing he knows where his bread is buttered. And for him to dream that his dad was dead and that he was all alone. I can imagine. I can totally imagine how that would stick with him. He's broody anyway. I totally get it. So I felt really bad for him.
Speaker 1:And then I was telling my spouse about how maybe having a community of similar-minded peers might help him. And then I second-guessed about that and the insanity of this idea that I have of wanting to group all of these people together in a community and expect anything to be any better. I mean, we send him to summer camp with special needs people and shit still happens, right, he's still slamming his head in the wall and racking up bills and stuff. But really I do believe in this, what I'm working on. I do believe that having more like-minded peers around him and around me and you know, parents and kids alike I think if we had a community not necessarily full-time, but just if we need respite, or you know our family vacations if we had a place where we could go that we know is severe autism friendly, is designed just for us and our kids, I mean, could you imagine what kind of vacation you would have? But I do constantly second guess my sanity on this just because of how hard it is for me to deal with him. But really it's just about support and it's just.
Speaker 1:I remember how secure he looked like he felt when we walked into this camp that he goes to and he knew right away that this was a safe place for him. He knew right away that everyone there was special and that all the adults there were very in on it. They were on his side, they were supportive. You know, he did not feel unsafe. He felt like he was home. I could see it all over him and I cried tears of joy to see that.
Speaker 1:Hey, I want to say also you remember how, last episode, I said that I really didn't see a problem with the online video game shopping and all that stuff at the time. Well, the follow-up to that is that after the online video game shopping, he later became obsessed with sites like GameTop I think it's not GameStop, I think it's - he calls it GameTub, but I think it's GameTop and other sites like that. He became obsessed Ever since that shopping spree online with his grandma on Thanksgiving. He just would not stop looking at it and that became one of his ramblings GameTop, gametop, gametop, gametop, gametop that's all he would say. You know, batman, batman, spider-man, spider-man, game top, game top, just craziness. Everything started going downhill from there with the technology and the iPad and everything.
Speaker 1:So while I thought it was cute and a bonding moment for the two of them at the time, by the time the next Thanksgiving came around and she wanted to do that again. I allowed it because she didn't come to see him very often, but I really hated it because I knew what was happening and I knew that he had this OCD about it and I didn't want to make it her problem. I just had to leave the room and let it happen and think, well, I'll deal with it later, and I learned that that's not really the right thing to do, not for my family situation. I should have nipped it in the bud and said, hey look, this isn't healthy for him. I would rather that we break it up or do it a different way. Maybe you could just talk to us about some of the things and we could give you a list and then you could just kind of narrow it down and let him choose which ones, or something else. Just do it a different way. I really wish that I would have done that, because allowing it to happen just for the bonding and the once a year visit it really wasn't worth it in the long run for us, because it sticks with him and it damages him for the long haul.
Speaker 1:That was a lesson I didn't expect. I don't know why. I just you know, you learn a lot about psychology of him the psychology of your kid's makeup, right of him, the psychology of your kid's makeup, right. It was just a learning process and I just wish I would have known, because by the second time that happened, he was damaged, in my opinion, forever. I mean, he just started developing these weird obsessive behaviors and it was generally around the things that they would look at together.
Speaker 1:And I think it might have been because, one, it was such a long time spent on the iPad looking at all of them. But two, this stuff burns in his brain and I think that it really it just doesn't go away. It kind of creates a new script for him and it overshadows everything that he knows, everything that he's learning, and it just becomes his obsession and it's super unhealthy. Well, in my next learning, and it just becomes his obsession and it's super unhealthy. Well, in my next episode, I may just have my next episode be questions with dad, but it may come later too. So my next episode is either going to be questions with his father or a follow-up on the next step that we took, and we'll go from there. And, by the way, I'm still trying to teach him how to wash his hands properly, and we started that in like 2014 or before. So, whatever you're still teaching your kids, I wish you luck in that. You hang in there. You're a superhero.