Parenting Severe Autism
Parenting Severe Autism
EP. 33. Unexpected Proposals and Parenting Challenges in Severe Autism
After an unplanned hiatus, I'm back with the Parenting Severe Autism Podcast to share insights and gratitude with you all. I've got exciting news to kick things off: our podcast has caught the attention of some key players who could really make a difference for families like ours. But life's never straightforward, is it? I also dive into a rather unexpected proposal from a podcast platform manager that stirred up some mixed emotions, opening up conversation about navigating the often-complicated support systems available—or not so available—to families dealing with severe autism.
Balancing a family when one child has severe autism is no easy feat, especially when parenting styles clash. I candidly share the ups and downs of this dynamic, touching on how it affects my relationship with my spouse, who has turned to alcohol as a means of coping. In this episode, I emphasize how important it is to maintain structure and boundaries, both for the wellbeing of my child and the sanity of our home. My return to managing the household is aimed at restoring peace and stability, offering hope and advice to those in similar situations.
When it comes to healthcare, the struggle is real, and managing my son's medication has been a test of patience and advocacy. This episode sheds light on the inefficiencies of the healthcare system that many of us face, from delays in crucial appointments to educators inadvertently fostering unhealthy habits. Despite these challenges, we hold onto cherished moments—like watching my son’s unique imagination come alive in a backyard wiffle ball game. As we look to the future, planning for our child's well-being remains a priority, even as we dream of a more fulfilling life. Join me as I share experiences both heartwarming and challenging, offering solidarity and encouragement to families just like ours.
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Hello and welcome to the Parenting Severe Autism Podcast. I am your host, Shannon Chamberlin. I'm so happy you're here with me today. Well, I am back. It's been rough. I'm sorry these episodes have not been regular for six months or more, but I really believe I'm back now.
Shannon Chamberlin:I first want to thank everyone who has emailed me and sent me tips and paid for subscriptions to this podcast. I am honored and very blessed to have your support and to receive your messages. I've received so many messages from parents and professionals who have said that this podcast is helping them. So a little message of good news to all the parents listening. I have been receiving emails from people who are in positions to make a difference for our children. This podcast is reaching them and they're actually listening. So that is, I think, absolutely phenomenal news for us in our community of severe autism. It's really nice to know that the people are out there the educators, the therapists, everyone who wants to learn how to work better with our children. They're finding this podcast and they're finding this podcast to be helpful and I am so grateful. So please continue to share and, of course, you can always visit my Buzzsprout page.
Shannon Chamberlin:You can contribute to this podcast in any way that you would like. I still have the Buy Me a Coffee program. I still have merchandise that you can pick up, and you can always leave a tip or subscribe. Apparently, I didn't even know that was a thing. I'm pleasantly surprised to see that. And a special thank you to April S. Your continued contribution to my podcast is so valuable to me. Thank you so much. Also, thank you guys for clicking on my links when you are in search or in need of purchasing an AngelSense GPS tracker for your kiddos. My links are all still good. So I've got the natural, healthy products that are available in some of my links. I've got other things that you can get for sensory diet. You know just all kinds of stuff. So thank you so much for using my links when you need something for your child or your household. And as I record this, it is October 3rd 2024. And I want to officially state that, as of right now, I am not accepting or conducting new interviews and I am not accepting or seeking new guests to be on my podcast. If you are listening to this episode and are interested in those opportunities, please wait until the beginning of the year before you contact me for interviews. I'm still trying to get my spouse nailed down for an interview with dad and his take on everything, and I'll get into why that hasn't happened yet in this episode.
Shannon Chamberlin:Okay, the first thing I want to share with you. I was very excited to share this with you at the time that it happened because I was instantly negatively affected by it. But then, as soon as I put my two cents in, I was positively affected and I couldn't believe it and I was like, oh wait until all the parents hear this. You know I can't wait and I wanted to just run into my office here and start an episode. This actually happened and here it is.
Shannon Chamberlin:There are several group homes, therapy homes, things like that, around here who back when my son was being kicked out of his school and not helped I'm sure you remember that story from earlier episodes. All of the places around here that could have helped us did not help us. Nobody. Nobody helped us, only the people who were in the positions of having to be the one to call around on our behalf and find someone who would work with our child. Those people helped and it's because that was their job, I believe. But the places that they contacted, which was every single place from here to an hour from here and even further. Those places refused to help and they said our child was too autistic. Even the autism school 10 minutes down the road, they just I don't know. Anyway, there's this one and we did. I don't know. I don't remember, honestly, if we went there to interview the place and to be seen by them or if we were turned down just by mail, email and telephone, because we did tour so many places and we also got turned down from places that we did not tour. So it's hard to tell.
Shannon Chamberlin:But I received this communication from this man who is the operations manager for a podcast platform. They were reaching out to me because they admired my work and this person said as an individual with Asperger's syndrome, I believe that the neurologically divergent needs a voice. We want to meet with you soon to discuss a potential partnership. I asked him to please let me know more about his intentions. So he got back to me the next day and said that they had been in recent talks with this specific home around here to create a podcast to help the neurologically divergent and they believe the path forward would be giving a voice to the neurological divergent and their families.
Shannon Chamberlin:I just read that word for word. Would I be willing? He's wondering to work with said home and the platform that they're talking about to expand my podcast by including neurological divergent individuals and their parents? So what? I was so mad. I was so, so mad and I had to walk away from that for a couple of hours because, in case you didn't catch it while I was reading that email, this guy who has Asperger's, who is well off enough with his abilities to be able to be an operations manager for a podcast and videocast platform and is able to effectively reach out to me and use real words, compound words, sentences, paragraphs etc. To communicate with me his desires and his needs, wants me to include people like him in my podcast.
Shannon Chamberlin:Clearly, he did not listen to my first episode. I'm flattered, I guess, but he is talking about an entity who rejected us. They did not want my son. They did not want to help us when we were down and out and I was at my wits end. We had been locked in a padded cell as a family together for four hours. No one helped us, and the unit that he was wanting me to be involved with for podcasting and including is one that turned us down. They turned us away and then, years later, they're looking at me to help them. I said hello.
Shannon Chamberlin:It has been my direct experience that severe autism, its victims, family members and caregivers are shunned by society and providers such as the one that he mentioned, largely because of the wide net of the spectrum disorders quote unquote diagnosed as autism. These high functioning, neurodiverse people who can ask for help, communicate their needs and give back to the community by driving back and forth to work, have concealed the true face of autism. And now the people truly suffering are left without resources because they don't fit into the cute and cuddly image that everyone has become so accepting of. That cute, cuddly image was created in order to conceal the true impact of severe autism that some of us live with. These are totally separate challenges that we live with and we have no community with the rest of the neurodivergence that you are asking me to include. My podcast is very tightly niched for parenting severe autism and will stay that way. Tightly niched for parenting severe autism and will stay that way Sincerely, shannon Chamberlain. So that was my response. I never received one little response back. I mean, that was it, but I was so happy about that and I wanted to share that with you guys. I just couldn't believe that this person claims to like my podcast and has been listening to it and then made that connection. Okay, that was really fun, and that was back in April.
Shannon Chamberlin:In my last episode I mentioned that I had to cut back on my working hours and since then I've actually just fully quit my job. I spent all my vacation days, all my personal time off, or whatever they call it. I took everything I could to try to help around here and get things in order, and I was just faced with the reality that it's. It's not going to work. The entire family unit is affected and falling apart, and it's not always the autism. Away from him.
Shannon Chamberlin:Don't make eye contact and allow him to behave in a manner that is actually unacceptable, but it gets to a point where we get tired of fighting for what is acceptable. We know that he knows what that is and he refuses to acknowledge it. He refuses to do it, so he beats us down and we just end up letting him be whoever and however he wants to be, even if it's not right. I was feeling that my spouse was dealing with it too much, even though he's the one that can get our son to behave after he's not behaving. I'm the one who kind of has ground rules that when our son is in a mode of cooperating he doesn't break those rules. He knows the system that I have in place because I've been the one who's been home most of the time.
Shannon Chamberlin:As I mentioned in my last episode, he was making his dad so miserable on a daily basis because his dad puts up with things that I don't and we parent differently. He really didn't have much time for himself, so even keeping him fed became a problem. He harasses his dad in situations where he knows he's not allowed anywhere near me if I'm the one doing it. As far as something like cooking in the kitchen, his dad just kind of succumbs to the behaviors and resorts to drinking alcohol to numb his nerves. He allows the child to work his nerves all day, every day, and never stands up for himself until he's ready to blow up. But he needs an outlet. So you know, just the littlest tiniest thing, it just rubs him the wrong way, and the same for me, you know. It'll rub me the wrong way too, and it's just because our tensions are so high and we're just right on the edge of a razor blade. All the time it feels like.
Shannon Chamberlin:I strongly caution against using alcohol as a numbing agent or a form of self medication. It's tempting, you know, it's fun to catch that buzz, it's almost immediate. But the fact is that it is a depressant. And not only is it numbing, but from my direct experience living with someone who used the alcohol as medication, it allows the person to become careless and unreasonably moody, just being unable to sleep without it. Even if you wake up and you don't have a beer all day, you're an asshole. That's just what happens if you are used to it. You're just waiting it. That's just what happens if you are used to it. You're just waiting. And I, I went through a thing too where I sometimes I would do a shot of something and while I was cooking dinner, you know just to get through it, because at that time things were really bad and it's not a great idea. So now that I'm home, I'm starting to take over meal prep again and all that and to run the household the way it needs to be run.
Shannon Chamberlin:Jac requires a certain amount of, like I said, structure and he needs to know for some reason. Well, I have an idea why, but he needs to know where his next meal is coming from, when it's coming, who's making it, what it's going to be, and then when meals are done for the day. And then when meals are done for the day, he just is an instant asshole. So it's a real challenge and I have a way with him that his dad doesn't. His dad is the best with him. I'm not the best, but I have.
Shannon Chamberlin:I try to protect my peace. I have specific rules of life and I don't care how special you are. These are my rules for my life and my personal space, and I have these set up for everyone, and I think that it does the child good to know that he is no different than anyone else. When I require an arm's length of space between me and another person, I mean it when I say I'm in the bathroom and I'm not talking to anyone on the other side of the door. He's part of that. He does not get to do that to me. You know his dad slaves away at the stove all day, every day, and never has time for himself because he doesn't use the same techniques that I use for bulk meal preparation and during the whole time that he spends serving our son, he allows our son to abuse him verbally and invade his space and get in the way and not give him any peace. It just it doesn't make sense to me because I don't function like that. These are all things that would never happen when I was the one cooking.
Shannon Chamberlin:So I'm back in my role. I'm taking it over slowly, because his dad's been trying and struggling for so long that he still has this knee-jerk reaction that he has to do it. So now it's a bit of a struggle, like just let me do it all, like I did before, because even though it was a huge heavy load for me, it kept the peace. It kept me happy. I didn't have a spouse who was so overwhelmed and he was so unhappy and his unhappiness affects me, so I just I needed to take it all over again.
Shannon Chamberlin:So, although I'm not the disciplinarian, our son knows his place and he knows it's not in the kitchen. As I mentioned in one of my earlier episodes, he and I spend a lot of time together while I'm in the kitchen. He always sits at the dining room table. He'll talk and I will try to decipher what he's saying, and we use that time together as a learning time, a bonding time. I think it's a very constructive time, but he doesn't allow his dad the opportunity most of the time and his dad is not as adept at kitchen work as I, so while I'm doing it it's just second nature and it's not even work to me.
Shannon Chamberlin:His dad is kind of struggling and he cooks different foods and he does different things. He thinks they're faster but in fact they take a lot more time and a lot more effort. There wasn't a transition training period where I was like, hey, this is how to be me, I'll pull a chair up and let him sit, but he cannot be in the kitchen and he cannot be underfoot. He can sit there and visit with me, keep me in his line of sight, whatever it takes to make him happy, and we will interact that way. And the fun thing about hanging out with me while I'm cooking is that he gets to taste stuff and lick stuff and it's just, it's our thing. It's a completely different dynamic and I want that dynamic back. But right now I'm really happier with his dad just doing whatever makes him happy, because I don't know, man, I function better at this capacity than he does and he's just suffering and with him suffering, I'm suffering and the kid's just living like a king. He doesn't know one way from the other. It just drives me nuts. Anyway, I think it's all good and the way that things are getting back in order. It never was right.
Shannon Chamberlin:As I told you, the role reversal was absolutely hell and we tried it. And the thing is his dad's been doing this caregiver thing for so long. I don't. We're both questioning whether he's even employable, honestly. I mean, he was a sales executive, a business owner, you know, and all that jazz, and I don't know, I don't care, because he makes decent money taking care of our son. I'm trying to learn how to make money while being here and helping the household. Our situation is just different, just like yours, anyway.
Shannon Chamberlin:So, as I mentioned, he wraps his lips around his teeth now ever since the dental stuff happened and he refuses to open his mouth when he talks. And I'm just like hey, if you want to talk like an idiot, I'm not going to respond. You may not have a lot of words, but damn it if I'm going to allow you to talk to me with your mouth closed. Okay, not happening, but his dad just deals with it and you can visibly see his dad getting a piercing headache as he's dealing with it. He's absorbing this abuse. You could just see him wincing and it's driving a stake into the side of his head and you could just see it on him. And I was the one who had to deal with the unhappy daddy. So it was really affecting our relationship and there's a certain amount of that anyway, because he is my best friend, he is my life partner and we're just going to... That's going to happen, but it's just it's too hard for me to deal with because his dad is completely engulfed in this caregiving role. He complains about how he just has a terrible headache and he's in a terrible mood and his nerves are fried and there's really no time for us to discuss anything. You know, it's just a shit life. So anyway, I'm back. That shit's over.
Shannon Chamberlin:As I mentioned in my last episode, I really believe that our son needs his medications adjusted and we are still afraid of pursuing that action because, you know, we've seen some really terrible things happen with these types of medications and we feel that we've been really lucky so far. However, the bottom line is that he does not seem to be receiving the benefits that he did when he first started taking the medicine. He is able to control himself when it matters. If there's something on the line like a pepperoni pizza or any kind of a treat that he loves to eat and he stands the chance of losing access to that, he will pull his shit together for as long as it takes and he'll be good all the way up, even if it's two days Like today. We're like hey, you don't get pizza on Saturday if you don't straighten up, and then he'll be good. He'll be good. He might need one or two reminders, but he will pull his shit together and he will man up and he will be so good all the way until about 10 minutes after he's done eating that pizza on Saturday and then all hell breaks loose and that is his pattern. But I know that he can do it.
Shannon Chamberlin:See, previously there was no proof, but his dad had to start using the food as a bargaining chip because I told him that this kid that you deal with is the different kid than the kid that I dealt with, and sometimes it was worse for me than it is for his dad, but the acting like he's not in control and pulling on his dad's heartstrings like, oh, poor Jacob, he just can't control himself. He just can't feel good. He just he just can't do it. Yes, just can't feel good. He just he just can't do it. Yes, he can, yes, he can. And it's insulting once you realize how in control he actually can be. It's really insulting because you think back about all the shit that you had to deal with and if you would have just bribed him with a pizza, you would have seen a different person, and I hate that.
Shannon Chamberlin:He's food motivated. It's very. He has a very unhealthy relationship with food, but there's nothing I can do. That was instilled in him by educators and therapists. That's that's what they do and it's very unhealthy. Look at how big most of our kids are Ours, and he looks like a POW. But most of our kids are huge that deal with severe autism and I think that some of it's the medicine and some of it is the conditioning to be food motivated and I don't think it's fair and I wish there was something else.
Shannon Chamberlin:And I have been on educators about that ever since I caught on to the fact that they were causing him to obsess over food. As you know, our kids obsess, they just do. But to obsess over food, I just I can't stand that. You know. I think it's just really unfair of educators and therapists to basically cause my child to become addicted to food like a rat, like a reward rats, on cocaine or whatever it is. You know, I think that a star sticker or a high five or just a verbal good job is just as good, and I proved that years ago that that kind of positive reinforcement is just as good in the moment as a cracker or an orange slice, but it's healthier because he's not constantly seeking another bite, another fix. It's okay to just motivate them with good feelings. You don't have to always motivate them with food Not my guy anyway. I'm sure they're all different and I don't mean to offend you if you don't believe that but my guy, I can motivate him with kindness or an entire buffet. Either way it gets the job done and one of them's healthier.
Shannon Chamberlin:I really do feel that our healthcare systems have failed us. Again, I understand it's my responsibility ultimately, as his legal guardian, to keep up with doctor's appointments. Okay, I understand that. But they also do have a place at every medical center around here, that is, actually they have a unit that is called central scheduling and central scheduling is supposed to be the hub of scheduling and they're supposed to take the orders from the doctor to call and schedule everything Appointments, x-rays, whatever it is. They are the middleman between me and the service provider. Whatever service that is central scheduling centrally schedules these appointments. Whatever service that is central scheduling centrally schedules these appointments.
Shannon Chamberlin:Well, six or eight months ago we had a video call with our son's doctor, which is what we had been doing about every month. During that appointment the doctor said OK, my staff is going to call you and get this next appointment set up and I'll talk to you. And I think she wanted to push it out three months and I was like, ok, great, we're doing good. Then we have always had a standing appointment for about the past what three or four years to come in in August and have his yearly checkup. And August 1st came around and I called to see what day the appointment was scheduled for and they said you don't have an appointment scheduled. So not only did central scheduling not call to schedule the three month update on the telemed appointment which we missed I don't know, it never happened and I didn't miss doing it. I didn't. You know it was busy. Things get busy, so I didn't make any sense to me.
Shannon Chamberlin:I don't know what is going on with this healthcare system, but it is failing all the time and my son is constantly being kind of just swept under the carpet with that. I feel it's their responsibility, because the doctors give the orders and the people are supposed to call their central scheduling. I am not central scheduling, I am everything else that gives this child life. I am life manager. I could use central scheduling to help me out a little bit here and there. And now we can't get in until December for his yearly appointment, which means that we can't have his meds looked at or anything, because she's out of the country. First of all, I know that we could try to get in with someone, but the last time we tried that we did get locked in a padded cell together and I'm not going to do that again. I mean, I know it's my responsibility as a guardian, but damn it, man, I really wish that the central scheduling at the medical facility would do their jobs and just help me out, make sure he has his appointment scheduled. We're just screwed right now.
Shannon Chamberlin:You know, during the month of July and August, he got much, much worse with his temper tantrums and his self-harm. We started thinking he was going to start trying to run away again. He hadn't done that for a long time and we started thinking, oh man, better make sure everything is in order with this GPS. During July and August, we ended up stopping his trips to the day camp because he started putting his head through so many walls, and there was actually dry wall repair bills being made up for us. So I was like well, you're just not going to go anymore until you can behave like a man, because you're six feet tall and you're 23 years old and I'm not going to have you doing this. We would drop you off at camp and then 30 minutes later, we've got to go pick you up because your head's inside the wall. It's just bullshit.
Shannon Chamberlin:So I think that maybe it's his meds, but maybe not, I don't know. I don't know because he is cannabis medicated as well and that stuff. There's no, it calms him down. I don't know what it is, and you can't ever get a decent report. Not that they're trying to hide anything over there, but there's just no excuse for it. At this point, though, I mean oh, what did you do to set him off? You know that's a great question, but on the other hand he knows better.
Shannon Chamberlin:The good news on his dad is his dad has finally gotten tired of drinking and the first couple of weeks were hell, but now it's been about five or six weeks and he's sleeping better. He's teaming up with me. We are doing our best to have a united front when dealing with our son and extended family members. We're standing our ground and just telling him to use words. We're making sure that he does not drive like an ice pick through our brains with his incessant babbling. We're just holding him more accountable and we're doing it together, whereas before, with me out of the home even two days a week and his dad self-medicating so much, we just were never we couldn't even get along, much less have a united front with our son when he was acting up or acting out. So things are just getting better.
Shannon Chamberlin:He really only wants to say about three phrases and he will not stop saying them, but now that we're both more clear-headed and standing our ground together, he's getting tired of us not responding to his prompts. So he usually likes to throw his hand up to his head and say I not feel good and no matter what it is, he's now realized that we demand more information. He'll literally wait. Well, not right now, but he had been waiting. We'll say hey, we're going to go on a walk. Would you like to go on a walk or do you want to stay home with your grandpa? I want to go for a walk, I want to go walk.
Shannon Chamberlin:However he says it, we would get 15 steps down the street and he would just start complaining I don't feel good and start kicking and stomping and flapping and yelling and screaming and just huffing and puffing and just miserable, and make us go on a walk with him. He wouldn't go home. We're like okay, we don't want to walk with you, so we would all have to go home. He ruined the whole walk for all of us. But now we have rules.
Shannon Chamberlin:Okay, you don't feel good? There's a couple things you can do, and this is the answer every time. And if you don't like it, maybe you should change what you're saying. And that's where that's where we're at. So if he not feel good, he should drink water and he should go lay down. And if he fights on those things, then obviously that's not the problem. So I'll go through all the how is your head all the way down to his feet and his butt and everything, and everything's fine, but he doesn't feel good.
Shannon Chamberlin:Other days he'll say I have a headache and I'm like thank you, thank you so much. And that's only happened in the past couple of weeks because he's gotten so tired of us saying the same thing. He says the same thing, we say the same thing and we're starting to tell him as soon as dinner is over he starts having an anxiety attack for the rest of the night. So the later we feed him, the better it is for us. But if we feed him at 530, he's done by 545 and he can't go to bed until 830. So we have to deal with three hours of him being off the charts, ridiculous and abusive, and it's just not cool. So we're still dealing with that. But you know we're always just telling him to go to bed, go to bed, go to bed, go to bed.
Shannon Chamberlin:And now he won't even go on a walk. He's that bored with our reaction. He's not getting the attention that he's seeking with these behaviors. So now he's actually manning up and we're like hey, we're going to go for a walk, do you want to go or stay here? And he might use the wrong words, but his physical actions say that he's staying home. He's been getting very confused lately with his words. He'll say the opposite of what he means and he'll continue saying it. He'll say, yeah, I want to go for a walk, I want to go for a walk, I want to go with you, I want to go with you. But while he's saying that, he's taking off his shoes and sitting on the couch putting on his slippers Just really strange. But at least the physical action is showing us that he's not coming with us and he's not planning to go on his own. He's going to stay home. And that's the kind of autonomy I want for him. That's the independence that I want him to have is to just decide hey, you guys walk too much, I think you're boring, I want to stay here. Fine, great, fantastic. Please do that. Make more decisions on your own, that would be great. So that's where we're at right now and that's, I think, a really nice little milestone.
Shannon Chamberlin:I guess you could say I guess you know, in the absence of any and all therapists and educators, we're now realizing very clearly that, in order to get him on an even keel. It really does take both of us to be here almost all the time and stand together with the same values, the same rules and the same standards, and it requires us to be very hard nosed about it. There's just no way around it. We have to do it. He can't play one against the other. He's not getting a different reaction from one parent as opposed to the other parent which, before I quit my job, that was the weakness.
Shannon Chamberlin:We never spent enough time together as a parenting team. He would just constantly attack, attack, attack and just try stuff, and he knows what he's doing. He's not dumb, he's autistic, he's not stupid, he's crafty, he knows how to play with people's emotions. He's just, you know he's abusive, he's cute, he's cuddly, he's scary and he's mean. And when you know that about him, you have to unite with the people around you who deal with him as well, and if you guys aren't united, the shit's going to continue going on.
Shannon Chamberlin:We've basically shut out all the family. We don't ask them for anything, we don't invite them to go anywhere. We're never doing that camping thing again that I told you. We haven't even addressed it. The grandpa asked about it but we just didn't respond. We're not ever, ever doing that again.
Shannon Chamberlin:That was the last straw, the last time that I needed to learn the lesson that family doesn't give a fuck. It's just the two of us, and I'm really happy that I quit my job. It wasn't making me that much money anyway, and I would rather have peace in my house and in my heart and not be constantly at war with my spouse about this kid. We are stuck together. It's the three amigos all the time, and my only real concern, other than creating a peaceful household again, is his long-term future, long-term care, elder care, stuff like that. I just I'm going to continue messing around with this internet marketing. I'm not above starting like a Pornhub page or something I don't know. Like a Pornhub page or something I don't know. Whatever it takes to get more money to get this kid taken care of in the future, I'm going to do it.
Shannon Chamberlin:It's so important you guys, and there are some special needs planning groups out there on Facebook you can find but the bottom line is it's very hard, especially when you're placed in a position, like we are, that, look, we both need to be home, one of us can get paid for taking care of him and the other one still has to be home all the time and is really, unless you, you know, unless you start making a lot of money on the internet one way or another, you're just stuck in this below poverty income level and you got to make the best of it. What we'd like to do is buy a motor home because we want to enjoy our lives a little bit at least, and we can't ever leave our child with anyone anywhere. So, whether he likes it or not, we would like to see at least our country. You know, I've hardly been anywhere in this country. My spouse has, as when he was younger, and he wants to take me to see these beautiful places and I want to go and I'm. I don't want to be stuck in this basement being miserable taking care of this child who lives on a separate level of the house. It's just too hard and it's not fun. So our son likes to sleep a lot. Now he likes to. He doesn't necessarily sleep, but he spends a lot of time in the dark in his room and that's what he wants to do and I'm not going to fight it. I used to try to get him to come out, but that's just, that's his autism thing. That's where his bubble is at and that's where he wants to be. And, to tell you the truth, neither I nor my spouse have the energy or focus to keep him as busy as he needs to be kept in order to not go into his autism bubble. We're still at the end of our ropes, basically with helping him with speech and occupational therapy, any kind of physical stuff. It's just, it's pulling teeth and look, if no one in those professions can help him, then he's just not going to get the help, because it's all we can do to survive and keep him safe and keep ourselves safe and healthy. So that's where we're at.
Shannon Chamberlin:I do have a pretty cute little story. Back in August we did go to Dick's Sporting Goods. We picked up another attempt at recreation for our son and we got a wiffle ball set. His dad took him out in the backyard and set up a little stack of bricks and things to set the ball on top of. We just wanted to get the ball up really high so that Jacob could figure it out. The eye-hand coordination isn't always the greatest with sporty type things. Finally, he starts connecting the bat with the ball and his dad says well, hit one for daddy and then hit one for mommy. He went through family members in the household here and then he said hit one for Uncle Todd and he's the one who has passed away. And he kept aiming at the white wiffle ball. The white wiffle ball was on top of a bright green like a neon green cup about the size of a sippy cup. It was inverted and then the ball was sitting on top of that. The cup was sitting on top of a bunch of cinder blocks. Okay so a stack of cinder blocks green cup, white ball, black bat.
Shannon Chamberlin:Our son is very color oriented so we had to tell him hit the white ball, you know. And he couldn't figure out what to hit for a little while. But finally he started aiming at the white ball for all of the things Hit one for daddy, hit one for mommy, hit one for Uncle Todd. And then he said hit one for Batman. And then he said you want to hit one for Uncle Todd? And then he said hit one for Batman. And then he said you want to hit one for Joker. And instead of aiming at the white ball, jacob aimed directly at the green cup and he hit the green cup and not the white ball, and he associates that color green with the Joker. So I thought that was really cute and pretty impressive. You know, he didn't even think about it. He just said hit one for Joker. And he said okay, and he just he whacked that green cup all the way across the yard and I thought that was pretty impressive. That was a neat little decision to watch him make, even though the object is to hit the white ball. But you know, he made that decision just because he associates that cup with the Joker. So it's very cool to see how his mind works at times like that.
Shannon Chamberlin:Okay, so, now that I am dead set on being more involved in my podcast again, here's what's happening in the next episode. When did things start to go downhill? And I really kind of want to do a deep dive into what I think started to happen, in addition to the simple fact of him aging, going through puberty and all that stuff. I hope that if you celebrate Halloween with your special kiddo, I hope it's all fun and wonderful for you guys. You hang in there, you're a superhero.