Ep. 24. A Broken Boundary and New Communication

Parenting Severe Autism podcast mom & host Shannon Chamberlin shares how one timeless boundary had to be broken for safety over sanity, as well as a new communication behavior developed by her son.

Transcript

A Broken Boundary and New Communication

SUMMARY KEYWORDS

boundary, severe autism, spouse, eating, wanted, child, spit, love, sanity, cookies, filling, shower, complaining, podcast, parents, bathroom, work, man, groups, talking

SPEAKERS

Shannon (100%) 

Shannon Chamberlin
0:18
Hello, and welcome to The Parenting Severe Autism podcast. I am your host, Shannon Chamberlin. I'm so happy that you're here with me today. 


0:25
In this episode, I'm going to tell a couple other stories about consistency with boundaries. That was my last episode's subject, and I ran out of time. But there were two things I wanted to share. I ended that episode with my point of view about boundaries being for our safety and for our sanity. So I wanted to touch on that real quick. 


0:50
I would first like to say thank you to both Trevor and Rebecca for their generous support; my two newest supporters, and they were each very generous on the buy me a coffee program. Thank you so much, you guys, I really appreciate it, and I really appreciate your feedback. Knowing that you're getting something out of this podcast, that is such fantastic news for me, I really love to hear from you. Thank you so much. And for all of you listening, I'm so grateful for your listening, and you can always check out the buy me a coffee program, if you wanted to go to my Buzzsprout site, which is PSA short for parenting severe autism psa.buzzsprout.com. On that site, you can check my transcripts, my show notes, see the product recommendations that I've got listed there. And of course, if you do follow those links, there is an affiliate thing going on there, so I stand to earn a little bit of money to help support the podcast that way. You'll be able to find my links for the podcast merch that was recently designed, which includes throw pillows and T shirts and sweatshirts and hats and tote bags and coffee cups and water bottles and all kinds of good stuff. So, there'll be more stuff added as interest peaks with that. Don't forget to like and or follow my Facebook page, if you would like to. It is the parenting severe autism Facebook page. You can also send me an email if you had any questions or comments or concerns and that is contact.parentingsevereautism@gmail.com. 


2:26
So let's get into this. First, let's start with sanity. My boundary that has been set and it's been a rule for the whole family ever since I came around is if you're in the bathroom, you're off limits. If someone goes in the bathroom, leave them alone. That's simple, right? And it is for your sanity. You don't go in the bathroom so that you can pay attention to everyone else and take care of them and answer their questions, and you know, their badgering and all of that and have conversations through the door...If I'm in the shower or getting out of the shower or behind that closed door for any reason, and anyone besides my spouse asks me a question or tries to get a response from me, I do not respond. That's the rule. It's off limits. And unfortunately, we have had to eliminate that boundary for my spouse because when my spouse is behind that door in the bathroom, our son runs away. So now when my spouse wants to take a shower, he's got to let the child stand in the bathroom with him and watch him take a shower and blab to him the whole time. So he has a couple things that he says on a loop repetitively all day long, no matter what and it's not even words anymore. He used to use words and now he does not. He just butchers the words into sounds. So instead of dad or daddy, like he was taught, now it's dunh. And instead of I love you it's aiyuh, and instead of Do you love me, it's yuhyah? So that's what you hear echoing through the whole house when my spouse takes a shower or has to have a soak for his muscles or is on the toilet. The child has to be right on top of him. And it's just repetitive Dunh dunh dunh dunh dunh aiyuh, aiyuh, aiyuh, yuhyah?yuhyah? Dunh! Dunh! - The whole time! And it's so annoying, and I feel so bad for my spouse because that's the one place that you should be able to be by yourself is in the bathroom. So that was the sanity boundary, and now it does not exist. It's too dangerous to allow it to exist. So there goes the sanity boundary. 


4:43
Now quickly, I want to talk about the boundary for safety. And I'm talking about Stranger danger. There was a time where he - he'll still say it, but there was a stretch of time where it was really bad, he would just say I love you to everybody. He would walk up to the pretty ladies at Aldi when I would have to take him shopping, and he would walk right up into their face and say, I love you. And then he would say, oh, Give me kiss, give me hug. And I would say Hey, hey, no, get away from them. And I would apologize to the ladies. And sometimes it would be a man, you know, and I would say, I'm sorry. And some of them were cool, but other ones were like, Thank God, you're getting him away from me. You know? When he's a 15/16 year old guy, you don't want to be forced to give that guy a kiss. He's not three, you know? So we kept enforcing that boundary. That carried on over to a hospital situation, the grandfather had a heart attack and had major bypass surgery, and we were there, waiting. And there was this man, and he just kept telling this man, I love you, I love you. And the man would say, Well, I love you. And I kept telling him, stop it, stop it, stop saying that. And finally, I got loud, because this guy wasn't helping at all. You know, obviously, you know what I want, and you are encouraging this, and I want you to stop because you're a stranger. So I got loud about it. And you know, he's like, I love you. And I'm like, No, you don't. You don't say that to strangers. We don't love strangers. And the guy's like, Oh, it's okay. I'm like, No, it's not okay, you are a stranger. My son is not allowed to love you, and you don't love my son. So sometimes you just got to put it out there, you know, but.. the boundaries! 


6:26
And what is that? You gotta start babysitting everybody else? That's another thing that's got me so exhausted and not in the mood for anything, right now. It's hard enough to have to enforce things with my own child. And now I've got grown adults that I also have to enforce things with. I think it's really bullshit, and I think everybody should take a little responsibility for themselves! Doctors and dentists and... just - family members, and just every adult out there has been so disappointing lately. I shouldn't have to manage you. I shouldn't have to tell you how to act. I should be able to trust a dentist not to try to rip me off. But I can't. I have to put dentists in their place all the time. Because in my state, insurance does not cover dentistry. My son's Doctor/GP is great. But the rest of the system sucks. I've asked for referrals, we're looking at some behavioral counseling and some other kinds of counseling, play therapy and stuff,  and that's stuff that he responds to, and that I believe that he needs. It's a lot more work for us, because we have to take him back and forth, and we have only one vehicle, but he needs this stuff. And he doesn't have resources, you know, so I tried to get that set up with the doctor, the doctor's like, I would love to do that for you, and just a few weeks ago, put in the orders. And I heard nothing. So I called them I'm like, Hey, what's going on? I had a referral, and I haven't heard anything. And they're like, Well, this is the one that qualifies for the insurance, and they should have called you by now. So if they haven't called you by Wednesday, you should call them.


8:00
 I mean, come on, man! You know, just a little freakin help. Why don't they do their job? They have an entire department devoted to this stuff. And I have to call them? It's just so tiring and exhausting and unnerving. Oh, what is wrong? What are they getting paid for? They suck. That's what they get paid for. 


8:19
Speaking of terrible health care, I wanted to give you an update on the dental situation that I was talking about. In my last episode, everything was going great with the jaw alignment exercise that we were working on. He was doing really well keeping his mouth on straight trying to chew the food and doing all of the things that I talked about. And then about a week after I recorded my last episode, he just started banging his head on one of the walls in the dining room. And it's really fast. It's like a woodpecker. It's the fastest thing - it's datadatadatadata! You know, I can't even understand how he does it so fast. But by the time we got to him to stop him and pull him away from the wall, he was already bleeding from his head. Several hours later, I - you know, I went to work and I came back and his dad was making his dinner and he was making him gluten free chicken nuggets and mac and cheese. And our son was just completely upset by the whole thing. And that's one of his favorite meals, I'm sure that you can understand, but he wouldn't need it. And he just kept saying weird things that we couldn't understand, but he was just whining and complaining. And finally - I think this is very important, so I wanted to share this with you as his method of communicating. He put his hands over his nose and mouth and closed them so that it sounded like he was in an echo chamber and he said as clearly as he possibly could, "Listen to me! I cannot eat chicken nuggets!" And that was the first time I'd ever heard anything like that. And he tried so hard to get those words out and that was the first time he's ever covered his nose and mouth with his hands while talking to try to get had us a message and it was just the weirdest thing. So it got my attention. And I asked him why, you know, you can't really get answers out of him. But those are gems when he just will blurt something out in his attempt to communicate. So it turns out that his tooth was hurting, and he said his tooth was hurting so badly. And we switched his meal, he wanted nothing to do with the food, actually, he was pretty much refusing to eat. So we just gave him some soup, some creamy soup, and he ate that. But for the rest of the night, he was holding his mouth open, it was aligned properly. But if you've ever had a bad tooth, you know how you hold your mouth. And it was the classic way of holding your mouth when your tooth is really bad. And that's what he was doing. So we got him in for another emergency dental appointment, and I got them to do the full panoramic X ray. And in the X ray, they found that a piece of the filling that had been installed during the sedation has cracked and fallen out. So now he's getting food crammed up in between that space. Unbelievable. Why? This is a second time that his fillings are just falling out. I don't understand. What - is it the quality? Or is it something like a protein that his body produces or what? There's something going on, he cannot get a filling to stick in his mouth. But I think it was really interesting that it happened right after he banged the hell out of his head on that wall that day. And you know, maybe there was something going on with that filling before but it didn't - they didn't see it the last time I took him in for an emergency exam. So it seems like it happened while he was banging his head. But who really knows, right? So anyway, now he's scheduled for another sedation dentistry. I'm so tired of him getting sedated. I'm not really comfortable with that, you know, that's three sedationsns in less than six months, I think. So what is going on? Well, maybe it's like seven months. But still, that's a lot of drugs. And this stuff just isn't working. So I don't know what to do. But I wanted to update you and point out his method of communication that he's never used before, so you can keep an eye out for differences like that in your child, maybe it'll help down the road. Hopefully, you don't have to deal with anything like that. But his dental is not - he has to wait like 41 days, unfortunately, before he can even get in. 


12:36
In the meantime, he's been complaining, I not feel good, I not feel good. And that's always been what they call an attention-seeking behavior for him. Allegedly, that's what the experts have been telling us. But it does concern me. And as I mentioned, in one of my earlier episodes, I do everything I can to get him examined when he complains constantly just to make sure because you got to first of all, you got to have it documented, right that you are doing everything you can to take care of this kid. And if he's complaining about something, it's your job to go and get that investigated. But also, since he can't communicate the way the rest of us communicate, there's really no other way to know what's going on with him unless you're getting him examined and tested. So I just had a full blood panel done for him the other day, and we're waiting to hear from the doctor on that. But every so often, it's a great idea to get that kind of bloodwork done and see if there are any deficiencies or what do you call it... the opposite of deficiencies, you know? If he's got any overages of anything, because he's constantly complaining, and he's kind of a hypochondriac, to be honest, but I just want to know that there's nothing wrong. So we're waiting on that as well.
Shannon Chamberlin
13:50
I wanted to share one more quick story to close this episode out. This is something, it's another conversational breakthrough, basically. But the cool thing is that he didn't learn it from me and he didn't I don't think he learned it from his dad. I think he just did it all on his own, which is the cooles, right? Of everything. So I was making him dinner. I'm getting ready to put it on the plate. He verifies with me what it is that I'm serving. And then he said and cookies, I said cookies? You want cookies with dinner? He said yes. And I said, Well, how many cookies do you want? And he said four cookies. I said four cookies? Dude, this, this meal is heavy. I don't think four is gonna cut it. I think that's too many, maybe just two cookies. And he instantly countered. He says, Well, how about three cookies? I thought that was great! So now now we bargain! That's cool! I don't know where he learned that from but that was pretty neat. I love seeing that brain work. 


14:45
Oh, and one last thing. Let me tell you this one because I didn't write it down and I don't want to forget. There is an uncle-the grandfather's brother who is also in the house and he's ...you know, he's kind of disgusting with his habits. He'll go outside and you know hack and cough and spit and he had an area he used to- he used to spit in a cup. Now he's abandoned the cup, and he spits- well he was spitting in this area that he sits in, like right behind it. But my dog kept getting in there and I was like, grr! I got so mad and I had my spouse tell him to block that off and stop letting my dog in there. That's fucking gross man! That gets blocked off, and then the other day, my dog is out in the this grassy like garden area where I work every summer, and he's licking and eating this area of grass, and my spouse alluded to the fact that he thinks he's eating all this spit up that the uncle is doing. So he's now picked another spot to spit in, a place where I have to get down on my hands and knees in the summer and I grow things. Gross. But then the old man says, No, I don't, I haven't been spitting over there in a while. And I'm just gagging at this point, it's so disgusting to even imagine. And I'm in the house. and I'm just, I'm really, I'm just bitching up a storm to myself. I'm just kind of spouting off and blowing off steam about it. And my son was around and he said I'm sorry. And I was like, It's not you. I'm not mad at you. And he, I don't know, he asked, you know, just he just kind of tried to keep the conversation going with a word or two. I said it's your uncle. I'm just really mad at him. He's so frickin gross, disgusting. He's in the middle of eating at the table, he says, "I know, right?", in between mouthfuls. I know, right? He gets that from me. I say that a lot, and it's really cute to hear him use my words. Usually it's not against me, sometimes it is. And that sucks. 
Shannon Chamberlin

16:35
But anyway, I thought those were cute little stories, I've got a couple more stories to share with you next time. 


16:43
As I'm recording this episode, I am very aware of the time of year that it is. First I want to say that my spouse and I are getting married in 10 days! And we're pretty excited. We are eloping because of many different reasons, but one of the main reasons other than finance is just the family situation. It's just - I don't want to deal with a full wedding. With all this severe autism and stuff, it's enough. And all I want to do is just marry my best friend and we'll be... we'll be great. But um, we are splitting our wedding and reception into different days. That is something that just came to us as a way of being able to celebrate with friends and family, but also tried to keep the peace with our child. And there's no way that he would be able to handle a ceremony and a reception all in one day. So we're getting married on the 20th. And then on the third of the following month, we'll be having our reception. And I think it's a really great way to do it. I'll keep you posted and let you know how it works out. But so far, it seems like it's going to be okay. 


17:48
But mainly, I just wanted to say to you that Memorial Day is coming up. And that's the start of all the things that we as autism parents love as far as everyone having noisy parties, everyone having a good time with friends and family, everyone doing all of the things that we wish we could do with our family and also leaving us out of it and either not inviting us or not telling us or inviting us and then scorning us for not showing up or scorning us for showing up with a child who's in a bad mood... That's starting in just about three weeks, and it just goes on from there, doesn't it? I just want to let you know that I'm aware of it, you are not alone, even though you may feel alone. And if you are not in a support group, you might benefit from a couple of the ones that are available on Facebook. It took me years to find anyone who could understand what situation we are actually in, and none of the autism support groups for parents ever met our needs. And they all treated us like we were ridiculous, and that our type of autism didn't exist. But I am in two groups that I really enjoy because the parents are in the same boat. And they understand and it doesn't seem like there's any judgment going on. And everybody has their ups and downs in these groups, and we're very open about them, and we all support each other. One of them is called Autism and aggression. And the other one is called support group for parents of severely autistic children with LD (learning disabilities). So if you're not a member, maybe go check those groups out just for a little extra support from your peers, parents who are in the same boat as you because it gets really hard during holidays and spring break, summer break and all that stuff. So you can also feel free to send me a message if you would like to, I can't necessarily help you. But sometimes it helps just to have another parent who you know is not judging you and who's on your side and who is rooting for you to be the best you that you want to be and to have a life outside of severe autism. You know that you're not going to be judged by me for sure, right? 


20:01
Realigning text with audio
So I wish you the best. I hope you get through these next few weeks, you know, coming to this Memorial Day and starting everything. I know, everything's going to start to snowball and it's just going to highlight a lot of things that we try to sweep under the rug during fall and winter especially. You hang in there. You're a superhero.