Ep.19. He Deserves Some Respect

Parenting Severe Autism mom & podcast host Shannon Chamberlin discusses several occasions where she believes her son was treated as "less than," along with how she tries to help her son recognize a bad situation. In this episode, Shannon expresses concerns about others behaving selfishly and the possible adverse effects these behaviors can have on her son, suffering from severe autism.

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Transcript

He Deserves Respect

Mon, Jan 23, 2023 . 

Shannon Chamberlin

0:16

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. Remember that you can view the transcript over at psa.buzzsprout.com. You can also find links to support the show through the buy me a coffee program or purchasing merchandise, which is just like cups and glasses and water bottles and pillows and stuff like that. And you'll find all of the information for contacting me via email or Facebook, and a portion of the proceeds through purchases and donations are going into a fund to help other severe autism families just like ours and yours. So let's get started. 

0:57

When Jacob was about eight years old, we were still getting to know our neighbors. We had two neighbors in this - we lived in a row home townhome thing. Our one neighbor was our direct next door neighbor, and our son, while we were moving our stuff in, he decided to just go to the neighbor's door and barge in. He just burst into their house and I noticed it but I - even back then he was so much faster than I was ready for you know, and I was pretty athletic back then. But he was already halfway through their house by the time I got in there. I was like, oh, no, you know, come back, come back. And I heard from the yard as I'm running up to get him out of the stranger's house, I heard this little girl scream and say, Mom! And so I'm running into the living room, and this, this girl's mom is running into the living room from the other direction, and my son is like right in between us, you know, and so is this little girl and her mom says oh, what's wrong, and she says HIM! and just pointed at my son and started crying. And I didn't blame her one bit because he totally just barged into her space, you know, and she was an only child and she was very young, I felt terrible. That little girl ended up being such a good pal for my son, she and her mom and her grandmother. They're so kind and so tolerant, and just really good people. And we're still really good friends to this day. My good friend has now another child who does have autism. He is closer to severe autism than high functioning. But then the other neighbor two doors down from us, the lady was really kind. She was the sweetest lady, she loves kids and she just loves everybody, she had a big heart. Her boyfriend was really not that nice. He was a pretty cool guy, but he also was not nearly the kind, compassionate soul that his girlfriend was, you know? And we're still, you know, getting to know each other, and he wasn't around as much as she was, so we didn't know him as well. And one day he had been home from work for maybe 45 minutes or so, my spouse was out working in appointment, and I was with Jacob at home and we had gone for a quick walk or something. And we were coming back and he saw those two sitting up on their porch, and he ran up the stairs to say hi, but he doesn't say hi, he just makes noises and flaps and giggles and stuff at that age and kind of jumps, you know, jumping and flapping in his face and stuff. And I know that that's annoying, but I can tolerate it, you know for a little while. So this guy didn't tolerate it at all. He was like really trying to be off-putting really quickly, you know, and my son doesn't pick up on stuff like that. And then he said to my kid, I don't want to be around you right now! I don't want you here with me! That's when I realized that Okay, okay. Society is going to have a problem with my kid. I never had anyone treat him like that in front of me before, but now that I had, I instantly jumped on that. And I didn't attack the guy, I was pretty proud of myself. I have always just focused on educating my kid. He's very young mentally, and he always has been so everything is like watching a toddler learn. So this was a learning exercise for us. And I just said, Okay, Jacob, let's go. And we very calmly and kindly walked down the stairs. I said bye to the lady. I made sure to speak as kindly and clearly and project my voice enough. All at the same time while talking to my son walking the little sidewalk back to our door. I said Jacob, you don't have to let people talk to you like that. If someone tells you something like that, and they're not being nice to you, you don't have to put up with it. You will turn around and walk away and you don't talk to them anymore. And he was unfazed by the whole thing outwardly, but I don't know how he was affected inwardly, you know, he doesn't really show that anyway. He seemed to be his same happy, bubbly, jumpy. stimmy self, but maybe it hurt. I mean, when people spoke to me like that when I was a kid, it damaged me for life. You know? If I was that age? I remember every thing that anyone ever did or said to me that was negative when I was that age. It stuck with me, I still remember. Knowing that I was just like, oh, no, you're not gonna damage my kid, you know, this, this is not fair. He doesn't even understand half the shit that you're saying, and you're gonna jump on him like that? He doesn't even understand your social cues, he doesn't understand why you would even need to be that way with him. Everyone is always kind to my child. You will not do this to my kid. You know. 

5:41

So I started educating him about letting people talk to him a certain way, I started educating him to expect to be respected. But I've also tried to educate him on how to get respect, you know, and I do it every day. Because when he is not trying, or he's trying to just have fun with communication, and not actually communicate, it's annoying, nobody is going to listen to you... you know, and I'll tell him this stuff, like you have to try. You have to try to say the words. You have to try to listen. He doesn't speak well. But you know, people are very uncomfortable when they're confronted with a person who can only make noises like a seal, instead of talk. You know, they instantly find a way to go somewhere else and not help that person. And I don't want that to happen to my kid. All special people need assistance, they all need help. And it's just, if you have words, you need to try to work on those words, and don't play with them. And don't make these noises instead of a word. And I tell him all the time, if you act like that, in front of people who don't know you, no one's gonna listen to you, no one will help you. No one wants to talk to you, you have to try. It's a lot to learn. It's a - you know, he doesn't know that he's trying to be respected. But really, that's what's going on. He's trying to earn the respect of others enough where they will listen to his needs and try to help him. That's all I'm worried about. If he's out there in the world, and he's not got us, what does he need? He needs someone to listen to him. He needs someone to pay attention to him. He needs somebody to help him do something. So with that in mind, I try to make sure that he understands that forming your words is a necessity. If you need something, you have to be able to say at least a little bit what you want. As long as it sounds like you're trying to use words, you might get somewhere where if you're just making noises like a sea lion, then you're probably not going to get any help. 

7:40

So, that was the first lesson in his life about respect from others, and when being disrespected or talked down to like that, that it's not acceptable. And I-on one hand, I hated to bring it to his attention. And I don't know that he got it at that point. But I drilled it into him ever since. Every time there's a situation that we can learn from, I make sure to let him know that we can learn from it. He has some comprehension of some things. And sometimes it's better than other times, and I never really know. So I just keep trying. And I keep drilling it into him. I don't know what else to do. You know, I hope that if he gets in a situation with a therapist or a doctor or an aide or whatever, and they're being disrespectful to him, I hope that at some point, it comes into the equation that wait mom said that I should not talk to this person, at least that. 

8:34

Other things in his life that have been all a result of disrespect.. We've got his half-brother who had made public threats to us, you know, eight or nine years ago it started he started telling our family members and other people who are not related that he was going to kidnap our son from us and then burn the house down while we were sleeping in it. Yes, on one hand, that's just a dumb ass move. But on the other hand, it's extremely disrespectful to my son and his needs, who do you think is going to take care of him? Why do you think that you need to steal him from us. We are the only people in the world who actually understand him and care enough about him to do the things that are necessary to take care of him and keep him healthy and safe. That is a disrespectful move. I think to him, it's about him. And if you don't respect him enough to learn about him and his needs from the only two people in the world who know about them, then you need to leave his life. 

9:35

His half sister is the one who I made the human shaming slideshow about, you know, she promises him all kinds of stuff. Oh, I'm going to come and see you. I'm coming to see you, here I come! I mean it I'm going to come and see you! And then when she comes to see him she brings her new bonus children from her new marriage, doesn't introduce him to her children, doesn't say hello, I love you, screw off...nothing. She just waits for him to get on the bus and go to school and then takes his bed and then he can't get in his own bed after school, which is his routine... all she does is screw up his routine because hers is more important. And that is disrespectful. And I will not tolerate it. 

10:14

Then the grandmother of all of these kids, she was telling us for years that she couldn't wait to retire, she had a plan. This is my plan. I'm going to retire from the hospital at this age, and I'm going to help you take care of Jacob, I want to be there for Jacob, I want to be the one to help you guys out, you'll be able to go on vacations, and I'll take care of Jacob while you guys try to relax. And I'm going to take him here and I'm going to take him there. And we're going to have so much fun and I'm going to learn about Jacob and I'm going to take care of Jacob... And the first thing she did was delay her retirement. We were one year behind on retirement ,which is a big deal when you're taking care of the kid and you got no end in sight and you need some respite and there are no services. A year means something when you think you have relief coming in, that doesn't come. And then when she finally decided to retire, she also decided to divorce her husband and she moved out of the house in front of my son. Took everything, everything in the house, including her husband's bed, right under my son's nose, never said a word to my son about what was going on. So he developed psychosis about her because he didn't understand that she was leaving and not coming back. She took everything and left. And then instead of taking care of our son and spending all of her newly available time with our son, she went to spend her newly available time with her fake family.  And she decides to just go ahead and give all the grandmothering to them. And my kid has nothing. He has no grandmother, he has no other female nurturing person in his life besides me. He used to rely heavily on the love that he would receive from his half-siblings and his grandmother. And now they're gone. They just took it there. They're still living, they're still around. They just - they don't call him, they don't try to check up on him. They don't ask the grandfather about him, who sees him every day. They're - he's just completely out of sight, out of mind. His half brother also- right around the same time as the grandmother leaving, he - nah... my son developed a psychosis about her leaving. He decided to leave the doors unlocked. We would lock up the house every night, he would get out of bed, unlock the doors, sometimes he would go sit naked on the porch with his blanket, whether it was rain, sleet, snow it didn't matter. He was out there because she worked third shift, and she would come home early early in the morning. And so he wanted - he didn't say this, but this is just what we figured out - he wanted to make sure she could get in the house because she hadn't come back yet. And he would just do this every single night. And he would stay in the living room and not go in his bed and he would not sleep. All kinds of crazy stuff going on. And finally... I asked her. I asked the grandfather and the grandmother, will you please talk to my son and tell him what's going on? He deserves to know, he needs to be told, and it needs to come from you. It's your deal. It's not our deal. It's your deal. He watched you do this. And I need you to tell him what you did and that you're not coming back. And they refused to talk to him. They didn't give him the respect that he deserves as a human being who does have some comprehension of life. So finally, my spouse told him one day-and this had gone on for a couple of years before we could finally figure out the magic words. So the magic words were 'Mamaw left the herd. She's not coming back. She left the herd.' Remember how I told you a long time ago in one of my episodes that my son is just like a baby wild animal? Well, that's the truth. That's the only way that he understood that she's not coming back and you don't need to leave the door unlocked and you can stop all this crazy shit going outside in the middle of the night naked. 

13:56

So the half brother thought that my spouse was gone, who's the only one that he's afraid of you know, and he starts kicking in the front door saying he wants some water. And he has a...different walk of life, by his choice and he wanted to break in the house. So he's kicking the door, violently kicking the door to get it open and violently yelling, yelling, yelling, yelling and my spouse got up there just in time. But this was all going on right in front of my son. My son was two feet from the front door and just staring in disbelief and freaking out because I mean, obviously! And you know, that's just another sign of disrespect. Now then when we pressed charges against that boy for breaking and entering and you know, destroying destroying property and putting my son in danger. We actually got an order of protection against him to protect our son and when we went to court to keep the order of protection, the grandmother had actually been supporting this kid and coaching him. And I know it because she used to asked me... because my kid was, you know, receiving medical cannabis. And the situation wasn't ideal at the time. And she used to ask me weird questions that had no, no validity, you know, she didn't understand the situation. And so her questions reflected that because she would say, Well, what if someone says that you're stealing his medicine? And what if someone says, you know, this or that or the other, and it wasn't his medicine, you know, he was stealing our medicine at that time, he's got his own medicine now. But at that time, he was stealing our medicine, he didn't have medicine. And when we went into court to defend this order of protection, the kid had to take the stand. And everything that he said about us was everything that that woman had asked me in the past. All the wrong questions, all the wrong information, not understanding the situation, all of it came out of that boy's mouth when he was on the stand. So this woman coached this kid to lie about our family and our parenting on the stand in court, because she didn't want us to have an order of protection against her other grandson to protect the special grandson who could not defend himself. And it's completely obvious, because like I said, all of the statements this kid made were completely unfounded. And they didn't apply to the situation. And the only place that he could get that information was from the grandmother who in fact, posed those questions to me a year beforehand and didn't understand what she was asking or referring to. It was complete bullshit. And those are all of the reasons why when the family members, namely just the grandmother wants to pretend that she's involved in my son's life, once a year, she might call around his birthday, may I guess at max, it's three times a year. And that's not enough for my son, you're not respecting his needs, his needs, he needs family and love, he needs people to show him that he's important to them. And you're not giving him that the only time that you are calling to check up on him is when you need a dose of okay, I'm a good person I, you know, put in a few minutes here with my special grandson and now I can get by another six or nine months on that good mojo. It's just bullshit. And I refuse to subject my son to that. 

17:33

That's the whole point of this episode, I guess is just I teach my son - I at least I hope that I'm teaching him to demand a certain amount of respect from people who are supposed to care about him, you know, if they know him a little bit and like a neighbor all the way to a family member, even if it's someone who says hi to him at the store all the time. If you know him enough to say hi to him, then you can say hi to him like he's a real person. Not like he's a mangey stray dog. 

18:04

What do you think? Are your children emotionally affected? If they're on the spectrum? If they have severe autism? Do you think that there are signs that your child has been affected emotionally by people or ignoring him? (Or her, f course) If so, you know, if you have anything to say about this kind of stuff, feel free to drop me a line at contactdotparentingsevereautism@gmail.com. Or you can leave a comment on my episode post on the Facebook page, which is parenting severe autism podcast on Facebook. 

18:36

In my next episode, I'd like to review the answers to some of the questions that I asked the speech therapist. The fact is that I think my kid is different than any, any mold that they talk about, you know? So that might be fun, and if I can't come up with a good episode, I'll talk about something else. I've got a lot of things I want to talk about in the near future. Still working on my first book, and I will let you know when that's ready. I'm including a lot of extra insight for this Hindsight book that I'm coming out with. It'll be great for those who are supporting the caregivers, you know, grandparents and aunts and uncles and nieces and nephews and all that, all the people who are just on the outside and we want to kind of bring them to the inside world of this severe autism. I think this book is going to be really great to bridge that gap. I'll keep you posted on that. I know you had some hellish holidays, you know, on top of holidays, you have Christmas break, the kids are going nuts right now there's a full moon. It's kind of waning now. But we just went through that too. So, I'm thinking of you, whoever and wherever you are. I know that we're in the same boat. It does get better. You know, it gets worse. It gets better again, and I just want you to keep that in mind. Hang in there. You're a superhero.