Parenting Severe Autism

Ep. 28. In the Trenches of Autism Healthcare: A Parent's Story

July 07, 2023 Shannon Chamberlin Episode 28
Ep. 28. In the Trenches of Autism Healthcare: A Parent's Story
Parenting Severe Autism
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Parenting Severe Autism
Ep. 28. In the Trenches of Autism Healthcare: A Parent's Story
Jul 07, 2023 Episode 28
Shannon Chamberlin

Navigating the healthcare system for a child with autism and learning disabilities is no easy task. Join me, Shannon Chamberlin, as I relay my journey of finding appropriate care for my son, battling with insurance and medical coding, and dealing with the lack of attention given to his condition. This episode is filled with real stories, frustrations, and revelations from my own experience.

Ever grappled with a dental visit gone awry? Or discovered a new behavioral disorder while seeking help for a loved one? Today, I'll share these narratives, and more. I discuss the discovery of Oppositional Defiant Disorder, and ponder whether autism should be categorized as an autoimmune disease. The trials of acquiring medical care for my son, despite his condition being a qualifying one for medical cannabis, has been a challenge, but it's one I'm willing to fight.

However, amidst all the hurdles, there are lighter moments that uplift us. I take you through the unique relationships my son shares with family members, as well as a surprising encounter with a heroin junkie. Even during the most arduous times, we've found humor and love. So, tune in, connect with our story, and find inspiration in our journey.

Support the Show.

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Email: contact.parentingsevereautism@gmail.com


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Navigating the healthcare system for a child with autism and learning disabilities is no easy task. Join me, Shannon Chamberlin, as I relay my journey of finding appropriate care for my son, battling with insurance and medical coding, and dealing with the lack of attention given to his condition. This episode is filled with real stories, frustrations, and revelations from my own experience.

Ever grappled with a dental visit gone awry? Or discovered a new behavioral disorder while seeking help for a loved one? Today, I'll share these narratives, and more. I discuss the discovery of Oppositional Defiant Disorder, and ponder whether autism should be categorized as an autoimmune disease. The trials of acquiring medical care for my son, despite his condition being a qualifying one for medical cannabis, has been a challenge, but it's one I'm willing to fight.

However, amidst all the hurdles, there are lighter moments that uplift us. I take you through the unique relationships my son shares with family members, as well as a surprising encounter with a heroin junkie. Even during the most arduous times, we've found humor and love. So, tune in, connect with our story, and find inspiration in our journey.

Support the Show.

https://www.buzzsprout.com/1989825/supporters/newhttps://psa.buzzsprout.com

Get Podcast Merch at the following link: https://psapodcast.creator-spring.com/ & use Promo Code EARLYBIRD for 10% off your order for a limited time. New products are being added daily.

https://www.facebook.com/people/Parenting-Severe-Autism-podcast/100083292374893/

Email: contact.parentingsevereautism@gmail.com


Shannon Chamberlin:

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. I hope you're getting through it okay. This is the 4th of July weekend right now when I'm recording this. It has been hard. It's always hard, so I know that I'm not alone and I'm always thinking of all the strangers out there who are suffering through this lifestyle right alongside us, even though we don't know each other.

Shannon Chamberlin:

In this episode, i'm going to focus on the health care that my son has received, the attention or lack thereof that he has received as long as I've known him. If you'd like to support this podcast, please check out the psa. buz zsprout. com website, where you can find a link for my merchandise page. I've mentioned the products that are available on there before. You can also find links for supporting the show. You can buy me a coffee or you can purchase a subscription, if you'd like. You can also find the transcripts and show notes and all that kind of stuff. If you'd like to send me a message or ask me a question, do that by sending an email to contact. parentingsevereautism@ gmailcom. And I think I still have my shopping carts available - insect repellents and sunscreens that are safe for the whole family, very clean, as we call it. I'm what you call a crunchy mom, so if you're interested in stuff like that, you can still find my product recommendations there, as well as some other product recommendations such as TV screen protectors and things like that to shield our investments from the inevitable meltdowns that our children have, especially when they are more idle than usual, like summertime. So let's get into this.

Shannon Chamberlin:

When I met my son, again, he was about six. He had a string of ear infections all the way up until he was about nine years old. Every once in a while he would get an ear infection and we could tell even though he didn't really have the words for it, we could just tell he didn't feel good. His dad would bring him to prompt care, which is in Illinois. It's a clinic where you can drive to on the spot and get in and get treated, and since he was on this insurance called All Kids, he could get treated there no problem. And when you're at a prompt care you generally don't see a doctor, you just see a nurse practitioner or something like that, and they did fine for him. He always had this bubble gum flavored stuff that we would have to give him and it would clear up his ear infection immediately and it was about a two week supply and everything was fine. He generally never presented with any other issues. I don't know if that's because we cut sugar out of the diet first, as soon as we moved away from family members who would pump him full of it. I'm sure it had a lot to do with it.

Shannon Chamberlin:

There was a time, while we were building our business, he was complaining of a toothache and it was something that came about suddenly and we were in the throes of figuring out where to take him,a nd he actually found words. This was amazing. He only said things like digga, digga, digga, digga, all the time, and just a lot of silly noises and he would say daddy, and things like that. But he was about 10, I think, and he actually found words and I cannot imagine how hard this was for him to muster. But he came up to me and my spouse and pointed his finger in my spouse's face and said like, I'm your responsibility, this hurts, it's your job, and it was amazing. I've never I had never heard anything like that come out of him before And it definitely affected us.

Shannon Chamberlin:

We were already trying to find a dentist, but he didn't know what we were going through, trying to find someone we could take him to. He just must have thought we weren't doing anything about it. And what we were running into at the time was we were in Northern Illinois, near Rockford, and we were trying to find local dentists who were familiar and good with working with special needs children And we thought we had to get it on his insurance. That's what it's for, right? We found the one dentist in the area who said they were good at working with special needs children And my spouse took him there and he was at first very unhappy. We're very picky about where we allow our son and ourselves to be treated medically. If the place isn't clean, that should be a red flag for everybody.

Shannon Chamberlin:

They had a, you know, a kid's area set up with a VCR and movies and things like that, but they were filthy, very dirty. You could see the dust and the fingerprints all over everything And it was just- It was gross, you know, but it wasn't enough to deter him. I didn't go, it was just the boys went, and it wasn't enough to deter him yet because the boy needed attention. So when they got to the back, my spouse and son were greeted by very large. as my husband calls it. bone crushers, very large men who were probably there to wrestle people. They just looked like they were bone crushers and they were there to wrestle people and hold them down. And the patient chair in the little treatment room there had straps on it to hold people down and everything, and they wanted to tell my spouse that he could not be in the room with our special needs child.

Shannon Chamberlin:

The dentist puts his gloves on and wants to look in our son's mouth and then at the last second he says Oh, let me find something for you. And started rifling through all of this stuff, gets a movie, puts it in the machine and then was ready to proceed, and my husband had to say, hey, I need you to change your gloves, man. And he, oh, yeah, you know, that's a terrible sign. And then they were like Okay, well, you can't be in here now and we're going to take care of everything.

Shannon Chamberlin:

This was really our first experience with a health complaint. We didn't know. We haven't done it with any other children or anything, and I was completely unaware because I had never planned to have children. So we were not aware of protocol and do this, don't do that, you know. So my spouse was just like, okay, i guess I'll step out. And he stepped out for like five seconds and he said you know what? This isn't going to happen. I have to be in there with my son. So that set something up for the rest of our lives that, okay, you have to keep your dukes up, you have to always be on guard, and that's a really terrible way to have to go through life when you know you have to protect your son. Now you have to protect your son from professionals too. So that was our first real experience with that realization that, oh, nothing is safe, no one can be trusted, even a health professional. I should not listen to this person And I don't know. It just changed the course of everything for us at that point. So we didn't go there, we, they left, and we ended up finding treatment another way And honestly, i can't even remember how, but we got lucky, i'm sure.

Shannon Chamberlin:

And I don't even know what was wrong with his tooth. To be honest, I think he might have had a superficial cavity or something like that, but that was shortly after we had quit sugar and all that stuff And he never had another tooth problem until this last November, as you know. Update on that - He went to the dentist seven times in the past six months and they swear that there's nothing wrong with his tooth or his fillings. He's been under sedation four times. We had to take him back again just a couple of weeks ago and they said nothing's wrong, everything's fine, everything's perfect. A week later he's still complaining. He's not, he's not doing anything that you would do if your tooth was fine.

Shannon Chamberlin:

And I demanded that they look at him again. And so they looked at him again and I kept asking him which tooth? And he always would point to this one weird looking tooth, and it was.. I was calling it the short tooth. It was shorter than all the other teeth. It was very weird looking to me. It looked damaged or chewed up. It wasn't smooth like the rest of them, I don't know, it just looked weird to me. And I kept saying you see this short tooth, this short tooth. You know what? It turns out -

Shannon Chamberlin:

The dentist finally says well, that tooth is is just has grown in sideways. There's nothing wrong with it, it's just not facing the right way. What? I didn't even know. He never said that this whole time I've been calling it a short tooth, saying that this is the one he's pointing to, and he kept saying there's nothing wrong with anything. Okay, well, I think a tooth that has grown in the wrong way might be considered as something wrong. What the hell is going on? Why didn't they say something?

Shannon Chamberlin:

I don't know, but it turns out that what I was looking at and thinking it looked chewed up, it looked weird, it looked messed up. It was the biting part of the tooth that you use to chew your food. It was facing outward, Like - how do you say it? The bottom of the tooth was in his smile. It was facing outward, to the front. So, yeah, that could be the fricking problem. All of this time and all of this money and this.. I don't have any good words, um, right now.

Shannon Chamberlin:

So he says well, there's nothing wrong with it, it's just sideways, go home. And so we go home and four days later we were like you know what? We're getting it out. So I called back and demanded that they take the tooth out under sedation and that should be it. I think he's doing okay, but for quite some time he was really whiny and just needing attention and not doing what we asked him. He would. He would not stop sucking on his tooth or his face or anything. It was just terrible. It's so stressful dealing with a kid like this, who will not listen, doesn't understand what's good for him and what's bad for him, no matter how you tell him, and just really wants to do his own thing and have that autonomy, but it's going to hurt him so badly and he just won't cooperate unless you sedate him. So that's kind of where we were at. Back to the doctor. Over the years,

Shannon Chamberlin:

As he got older, you take him in to get a checkup once a year and, I happy; he was doing very well, and it was never mentioned that we should see a specialist or anything like that know.. We just we never realized that maybe there should be more. Everything was fine at school. The therapists were very happy. They did at one point ask us about medication for him, and we shut them down immediately. He was too young, and we just we didn't believe in that. We didn't want to do it at such a young age because of the long-term ill effects of prescriptions. So other than that, though, there was never any mention by anyone of making sure to see somebody. He never showed that he had any issues.

Shannon Chamberlin:

But now that we're older and wiser, I can say that I know now that a lot of health conditions are invisible. You can't tell by looking at someone that they don't feel good a lot of the times. So I don't know. Maybe he should have been seeing people. I mean, a lot of you out there have kids with severe autism and learning disability, which is what we have, but that's as far as it goes with ours. We don't know anything else. I swear there's something else with him, but I never knew what tree to bark up,

Shannon Chamberlin:

if you will. I just would say things like well, I'm not satisfied with the level of care. I would like him to see an actual doctor and I would like you to run tests on him. I want blood work, I want to know if he's deficient in anything, if he's got any levels of anything that are too high in his system, and that's all I could think of. I didn't know what else to demand at that point, and information like that wasn't so readily available on the internet as it is now. So I don't know.

Shannon Chamberlin:

We kind of were in the dark for a long time. But I want to say he never saw a doctor, never. We got all the way up to being 15 years old and behaviors are through the roof. Everything is screwed up. I'm taking him for his exams and everything's checking out fine, he's healthy, and just - that's where it stopped And I just, I think he's getting screwed, I think he's being left out, I think he's being ignored. I think he's lost a lot of opportunities for care and therapy and proper assessment of other things that could be wrong in his body.

Shannon Chamberlin:

He was always very skinny and I learned later that that was a lot to do with his stimming and he wasn't on pharmaceuticals, remember. So a lot of the pharmaceuticals make our kids fatten up quite a bit and he never was on those and he was very skinny. He was skinny to the point of looking like a POW. We were horrified to have him go swimming in a public place. We didn't want that kind of attention. We just thought that someone would think we were not feeding him or something and I mean he eats a lot. At least he did, at that point. The nurses, not the doctors, we never saw a doctor, would always scold us and after they weigh him and take his height measurement.

Shannon Chamberlin:

They would scold us about how underweight he is and that we should feed him Ensure and we, if you look into, Ensure the meal replacement shake or whatever, no way! That kills people. That stuff is horrible for you. So we would not do that. We fed him real food and that's what we still do. We are a real food family. We don't eat fast food and processed food and all that jazz and he would eat a lot of food. There were never any answers and there were never any referrals given and there were never any extra tests done.

Shannon Chamberlin:

And when he got to be 13, 14, 15, I took him in for his checkups and I noticed that they never did anything. Now I don't know, I didn't grow up with any brothers or any boys at all and I don't know what's supposed to happen at those ages. I feel like he's growing and he's raging and there's a lot going on and all you're doing is taking his height and weight and every time you confirm that we don't want pharmaceuticals, you just leave and I've never seen him see an actual doctor. I think that we're missing something. And finally, after his checkup at 15 years old, I talked to his dad and I was like you know I'm not satisfied. I don't feel like they're doing right by him. What are you supposed to get when you go to the doctor when you're 15? Is this when they make you turn your head and cough and do stuff like that? Or is that when you're older?

Shannon Chamberlin:

A man? I don't know. But when he was nine, we found that he had worn a hole in the outer skin of his penis because he always was pinching it and rubbing it. It was just like a fidget for him, and he wore a bloody hole in the skin. It's, I don't know, it's probably still there. Well, you know, I could bathe him, I bathed him all the way up until he was about 12 or 13, and he did have that hole on there the whole time. I don't think it ever closed up. It stopped bleeding, you know. It healed, but it didn't close. And just things like that,

Shannon Chamberlin:

I think that things like that should be looked at by a doctor, and there's never any doctors. I started to feel that just because he has autism - we didn't know it was severe at that time - just because he has an autism diagnosis, your doctors don't think they should have to see him. That's how it feels. That's what I'm seeing. I don't know, I don't have any other kids, but it seems to me that the doctors are avoiding him. And I took him back in, I called and I said I want him to have another appointment. He is 15 years old, 15 and a half, and no one has ever paid attention to him. All you do is the same five minute checkup and that's it. And I think that for someone his age, with his condition, he deserves more. And they said okay, and I made the appointment and I told them now I want a doctor to be present. If you do not have his doctor present, who is listed on his insurance card, who we've never met, we're not going to stay. I do not want to see another nurse for my son. I want him to see a doctor. He deserves to see a doctor. And they said okay, okay, okay.

Shannon Chamberlin:

So we get there and this is in Wisconsin and there's a guy there, severely underdressed and very, I don't know, very run of the mill, non-professional, and that's fine. We were in a small town, a rural area, maybe that's the way it is, I don't know, we never had a doctor before, right? When we went in, this was around the time of when he had to see that foot doctor too, and I had to orchestrate all of that. I had to do all of that. I had to fight for that, you know. But his toes were turning colors and then his fingers started turning colors a little bit too, but it was mostly his toes, and at the time I don't think we had seen the toe doctor yet And we were concerned and I was looking it up online, of course, you know, because at that point it's 2015 and all kinds of information is available. So I had been looking things up online about what could possibly be wrong with this kid And they - all the signs pointed to it could possibly be Raynauds syndrome.

Shannon Chamberlin:

There's two types. One is brought on by cold weather, one is brought on by vascular pressure due to anxiety, and that's the one I thought might be his, because he is a very anxious dude. He's always stimming, he's always pacing, he's always, you know everything. So I asked this unprofessional looking person who says he's a visiting doctor because my son's doctor couldn't make it that day, and he's standing in for my son's doctor because they're restructuring or something, some kind of bullshit like that. But he said he was a doctor. So I stayed and I asked him.

Shannon Chamberlin:

We all three were in there, my spouse and I and my son And we asked him hey, look at his feet. You know what could possibly be wrong with his feet? He says, oh, I don't know, and he just didn't know. He didn't have any answers at all. So we looked at each other and we're like, well, let's just, let's talk about it. I'm like, well, we looked it up and we found something called Raynauds syndrome. Oh, yeah? He says, and he goes and gets an iPad and looks it up and brings probably the same stuff that I found online, brings it up on his iPad, brings the iPad into the exam room and sits there and reads about it and looks up and he goes yeah, uh-huh. Shrugs his shoulders, frowns his face a little bit, like, yeah, mm-hmm, good job. And he's like yeah, I think so, I think you're right, you're probably right, and it's probably brought on by a little bit of both, because we're up in northern Wisconsin, so it's cold and he's obviously high strung. Yeah, I think that's, I think you're right, and that was it.

Shannon Chamberlin:

We diagnosed our own son and had an alleged doctor agree with us. We moved down back to this area in Illinois. That was in the spring of 2017. Started getting him hooked up with all the doctors again and we're back in the state that has terrible dental insurance and actually no dental insurance. Wisconsin was great for a dental. Wisconsin's insurance covered my chiropractor, dental, everything. No, Illinois is terrible. I don't recommend anyone with a special needs household living in Illinois, especially autism. But we're down here and still fighting to find a decent dentist and still fighting to see a doctor. Now, I've got him a doctor now who I am happy with.

Shannon Chamberlin:

I took him to one doctor the one that I told you, dr Carlson, in Peoria, Illinois. The one who said he would not certify my son for having a qualifying condition for medical cannabis, even though he has the condition, autism is on the list. And he said that he would lose his job and he said that there were no pharmaceuticals at this point that would even help him. That guy, yeah. Well, I had him run blood tests on him, just a regular comprehensive blood test. He checked his thyroid because of his weight and he checked regular CBC panel or whatever it is. And just now, about two weeks ago, I got a letter of collection because allegedly his disability insurance won't cover those tests. And I had talked to that hospital and they said everything was fine because I made sure they had the right insurance information And they said, yeah, it's okay. And now they say that I said I was going to contact the state and deal with it myself.

Shannon Chamberlin:

To me that's a medical coding issue. If you can't get standard blood tests covered by insurance, you're doing something wrong. That is not my forte. So he saw that guy for about five minutes and I tried to get him another doctor ,and I went. That's what we do. My spouse and I will go to these doctors as ourselves and see if they're on the up and up And if they're not, we don't make our son deal with them at all, because if he has to deal with them, we have to deal with him dealing with them And it's just a terrible nightmare.

Shannon Chamberlin:

So I go to this other doctor who is on our insurance by the state and he wants to do everything. I have a thyroid specialist. He says why do you have a thyroid specialist? I can do that. And he says well, why are you taking that medicine? You should be taking this medicine like everybody else in the world! Because it's my choice. I choose this natural medicine. You fool.

Shannon Chamberlin:

And then he's looking at my records. He wants me to get up on the table and do his normal check. First he squeezes my neck because I have an enlarged thyroid gland because of my condition And it's a problem for me And it looks a lot better now because of some natural protocols, but at the time it was still pretty swollen, as I call it, and I had mentioned that to him. And he goes and grabs it, like they all do, And he goes oh yeah, you can't miss that, it's definitely there, and you know, what an asshole. And then he decides to lift up my shirt and pull down the waistband of my skirt so he could see my scar from when I had my appendix out in freaking high school dude! okay, perv. So I was extremely upset with that asshole. My husband almost went and handled him, but we did not make our child go deal with him. So that's a doctor he didn't see.

Shannon Chamberlin:

And then, finally, i met a doctor because I worked at the dispensary for cannabis And she had come in with a family member. I helped her family member get a card. I didn't know at the time that she was a doctor, but shortly afterwards I had a patient come by who needed help getting a medical cannabis card And the certifying doctor was the same person that brought that family member in And I was like oh wow! You can't miss it. It's very unique. So I knew right away that's the doctor I want my child to see. Now she's been his doctor for about two years. I understand that nobody wants to see him because he's such an ass when he goes out in public, but you know it's.

Shannon Chamberlin:

It's their job. I feel that it is their job to first of all see my child and secondly assess their needs for testing. Listen to the parents first of all and try to figure out if there's something else wrong. They just chalk everything up to autism And I don't think that's fair. I didn't learn about other disorders until I started meeting other parents and caregivers of children who act similar to my son. I learned about ODD. I never knew that was a thing. I said what is it? And the mom said, or it was a grandmother, she said it's oppositional defiant disorder And I said that's a thing?!?! That sounds exactly like my child. Yes, yeah, absolutely. How come that didn't get looked at or diagnosed or tested for or something? They make him go very frequently, I don't know, like every couple years he's got to go through another evaluation to make sure he's still freaking autistic, where, what, who does what around here? I don't even know! And there are so many other.

Shannon Chamberlin:

I think maybe he still got something wrong in his digestive system, because some of my research.. T they've started categorizing autism as an autoimmune disease. I know - they're categorizing it as everything - I know, but about eight years ago I found that they were saying autism is an autoimmune disease because 80% of the immune system is in the gut and autism is affected by the health of the gut or something like that. So I can't get a regular doctor to agree to do any kind of testing in or around the gut. Yeah, if they want to stick a tube up his ass, they would love to do that. But just as far as doing some tests, you actually have to go to a special practitioner who is not covered by insurance, of course, It's just very difficult to obtain any real treatment, any real diagnoses or any real testing. Okay, so he doesn't have a thyroid issue. I could have told you that myself. Is that what I have to do? Go to medical school and just do it myself? Seriously? I think there's some mental shit that needs to be worked out and tested for. I think there's some digestive shit that needs to be worked out and tested for And I think there may be some conditions underlying that need to be tested for. And I can't get anyone to cooperate And I, for all those years, couldn't get a doctor to be in the same room with him.

Shannon Chamberlin:

How do you make up for that? How do you? how do you win? How do you force a doctor to be in the room with your child and show up for fucking work when there's an appointment scheduled with them? How do you force them to do that? In all the years we've been together, I was never able to force that until I found this one doctor, and I think she knows I'm not there for her freaking nurse. We're there for her. She's very attentive and very good, but she does not provide orders for testing for specific things that are outside of the pharmaceutical realm or whatever it is. So again, my point for this episode is that our child never saw a real doctor, as far as we know, until he was 17 or 18 years old, and he didn't see a good doctor until he was 20.

Shannon Chamberlin:

And even when we brought him to the psychiatric emergency room on his doctor's orders. He did not see a doctor. They waited for me and my spouse to reach our limit, being locked in that room with him being psycho, and they waited for us to start throwing a fit and for us to start yelling at the camera that was watching us in that room and to start yelling at the nurses and telling them we know it's not their fault, but this is bullshit. They waited for all of that to start with us before they even tried to get us out of there. We were in there for four hours, locked up together four or five hours. It was horrible And he never saw a doctor while we were there. The psychiatrist or psychologist or whoever the hell is up in that hospital looking down on us through a camera, didn't think that my son's life or my life was worth enough to come down there and meet my child and talk to him or talk to me.

Shannon Chamberlin:

Is this what it's like all over the country? Is our healthcare this third world shit all over America? If you have good healthcare for your child in your state, I would love to know about it, because we are not married to this state. We want to leave. We have been looking at which states have the best benefit availability for kids like ours, as an adult. All we need to do is try to earn money, which, as you know, is damn near impossible with his high needs and us tag teaming his caregiving all the time. But, man, if we can just find a way to get to a state that will take care of him better, I think we'll be on the right track, at least.

Shannon Chamberlin:

Finally. I know a lot of you have had the testing done. You know your kids have PANDAS or or whatever those issues are. You know about the pica, you know about a lot of different things that are wrong with your kids, while we're sitting here feeling like we know something else is wrong but we can't get any tests and we can't get any answers. Just because he can smile when he wants to, he can run and jump and he seems, on appearance, he looks healthy, that doesn't mean he doesn't deserve to be tested for things. I don't understand what the problem is.

Shannon Chamberlin:

Honestly. My next episode, I want to talk about where we think things started to go wrong for him. As you know, I've mentioned before, we never knew that his autism was labeled as severe. We never got that label. We never got a letter, we never got an assessment or anything that labeled him as severe until he was about 15 or 16 years old. It just happened to be time for his reevaluation, for therapy and stuff like that, and then we found out that it was significant not severe, but I think they said significant And then in the next year they did another evaluation And I think that's when they listed it as severe And that's also when I got him into a group, that teen group that tried to leave him out of the Disney on ice, and that's when I started becoming aware of the different levels of autism. I didn't know. This kid is all we ever knew of autism, so he never presented as that, I guess, before. But he wasn't always severe, as far as I can tell. And I want to start talking about when the tables started to turn for us and for him and what things were happening, what events took place. I want to tell you a quick little story. It was really cute.

Shannon Chamberlin:

A few weeks ago, right after I released my last episode, the grandfather went down to that granddaughter the niece's house, the one that I made the shaming video about and put on my Facebook. He went down there and picked up one of his great-grandchildren with his ex-wife and brought that child back here And he was supposed to stay for two weeks. And he's the one where I told you that we had my 17-year-old son out at his birthday party And I was so amazed at this kid's eating because he was three And he was eating with a fork And I was so excited about him. I just couldn't believe it And I was just like in awe and staring at this kid all the time because he could do all this cool stuff that my kid doesn't do. And he was three, mine is 17 at the time. Yeah, that kid came up here. He's a super cute kid, really nice, and he was sleeping on the couch. He's eight now And we haven't seen him in all those years.

Shannon Chamberlin:

I'm just going to tell you his name is Todd and our son always calls him nephew Todd And he's always said I'm Uncle Jacob. And I don't know if he knows what those words mean, but he always said nephew Todd, I'm Uncle Jacob. So he has those titles for each of them. And nephew Todd comes up here and Uncle Jacob is having a blast. They're running together and you know, doing all this fun stuff that he never gets to do with anybody.

Shannon Chamberlin:

The next morning, after the first night that nephew Todd slept on the couch, uncle Jacob woke up and I was right there at his bedroom door ready to give him his medicine. He pushed past me and made a beeline down the stairs over to the couch and said very clearly good morning, nephew Todd. And he cradled his little sleeping head and then he kissed his head so tenderly And he said I love you. I was so impressed by that, it was so freaking cute and a far cry from my last memory of someone related to him sleeping on that couch. So I'm also going to tell you this, because even when our children are being terrible, there's a chance that we can find the humor in the story later.

Shannon Chamberlin:

And so our son was not yet on pharmaceuticals, He was not medicated at all And there was someone sleeping on the couch. That person was the granddaughter of my husband's uncle And she happens to be a heroin junkie. We were not aware of that at the time until the next day or so because she never stopped sleeping on the couch And we started to ask questions. But he came up to visit from down south and brought her and I guess was trying to keep her out of trouble. So she is sleeping on this couch and that's my son's space. That's the only place he has to go other than his room and he likes to be in the living room with the windows and the television and no one else in the room. He loves that and she would never leave.

Shannon Chamberlin:

He was going through all these rages and everything, all the stuff that led up to him needing the medicine. He was also going through a streaking phase again. So he woke up. The junkie was on the couch sleeping and he wanted to be naked and angry. So he jumps out of his bed and now he's flapping, stimming, bouncing, flopping his junk all over the place while he's doing it. And this is just as he got out of bed. He used to wake up screaming and stomping and everything. So this was the norm and he runs out of his room, flies down the stairs, runs over to that couch She was facing she had her back facing out. He's right up over her head with his naked junk hanging down and he's jumping up and down and flipping out and just being really aggressive. And could you imagine if she woke up and opened her eyes? So his greeting for Nephew Todd was so much better and different than his naked rage at the heroin junkie. So I leave you with that. You hang in there, you're a superhero.

Challenges With Healthcare for Autistic Children
Frustration With Medical Care
Struggles With Finding Appropriate Medical Care
Family Reunion and Unexpected Encounters