EP.54 - The Caregiver's Dilemma: Fighting for Your Child While Fighting for Yourself

Shannon Chamberlin shares a devastating family betrayal that threatened her son's financial future and pushed her to physical and emotional breaking points, while also celebrating rare moments of communication breakthrough from her severely autistic son.

• The purpose of the podcast is to warn parents about unexpected challenges in severe autism parenting
• Shannon discusses her 19-year struggle with Hashimoto's autoimmune condition while caregiving
• The family is taking legal precautions to protect their current living situation
• Shannon's perspective on residential care evolved from heartbreak to desperately seeking options
• Rare communication breakthroughs provide precious moments of connection with her son
• Caregivers need time for personal development and thinking as adults, not just emergency parents

If you have questions, comments, or stories to share, email contact.parentingsevereautism@gmail.com.

Chapters

• 0:18 Welcome and Podcast Purpose
• 4:39 Physical and Mental Health of Caregivers
• 8:19 The Devastating Family Betrayal
• 15:49 Processing Grief and Finding Security
• 19:30 The Evolution of Caregiving Perspectives
• 26:36 Rare Communication Breakthroughs

Transcript

Speaker 1: 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. I'm grateful that you're here. I'm grateful that you're listening. I'm hoping that you are able to find some sort of comfort in my podcast episodes.

Speaker 1: 0:34

The main reason I do this podcast is to try to warn parents before things arise, because there have been some really alarming things that have happened to us and they just happened. There was no warning, there was no buildup. It was just that we woke up one day and this is the way things were, whether it's being beaten by my child or having him run away, or having him destroy the house or a number of other really devastating events that I haven't mentioned yet. I just think that it would be nice if someone out there has not experienced it and hears my episode and they're like oh okay, that'll get banked into the back of my mind and that way you're not as surprised or as blindsided as we were, and I hope that this is helping. I hope that I'm able to give you a sense of community and let you know that you're not alone. The downside of doing a podcast instead of just being a person in a group on a social media platform like Facebook is that you're not allowed to contribute to those groups if you are a page or a quote unquote business entity and although I'm not a business entity, they won't let me post about my podcast and let the 7,000 or more members in the groups who are dealing with parenting severe autism. I can't even let them know about me, you know. So if you know someone or you are friends with people in these groups, I can pretty much guarantee they don't know about this podcast and if you think that this podcast might help them in any way, please feel free to share my podcast episodes, tell them how to find it and hopefully we can help more people in our boat by sharing the information about the episodes. I don't think there are a lot of podcasts out there like mine who focus on exactly what I'm focused on, which is forewarnings. Now, if you have any questions, comments or stories to share, whether you want them shared publicly or just between us, you can always email me at contactparentingsevereautism at gmailcom, or you can leave me a fan mail message which is kind of like a text message and that's, I think, on each episode. It should be an option and, as you know, I don't really know how all of this works. All I do is tell my story and get it out there. So if you have any input, please feel free to contact me. I would love to hear from you.

Speaker 1: 2:58

In my last episode, I was focused on having to always be on high alert and function at that level every day, and it was just kind of something I was thrown into, just like you. No one plans to have a child with autism. You know, it just happens, and it happens overnight, and one day you're like well, my kid's a little weird, I'm going to have him tested, and then all of a sudden you're in the throes of it, right? So I do have more, unfortunately, along the lines of high alert. I also have a cute little story of spotty communication efforts. So every once in a while it's not constant, but we do get a little glimmer of hope or, you know, not even hope, just a random, short-lived blessing where our child is able to express his needs with some sort of broken English language and words, and it's always something to celebrate, in my opinion. So I'll be sharing that with you as well. And in my last episode I talked about all the things that you never think you'll have to look out for. As far as other people are concerned, you know outside influences on your life, your child's life, things like that.

Speaker 1: 4:06

Shortly after I published that episode, I got really smacked in the face with some things. So I kind of want to start out focusing on physical and mental health of you, the parent, the caregiver, because that's where I have been at. You may have noticed that my episodes didn't come out for a couple of weeks and that's because I really got knocked on my ass by something that happened. So just a little background on me, nothing really to do with my child, but as a stepmom of a child with severe autism, I have my own things to deal with as well.

Speaker 1: 4:38

For over 19 years I've been dealing with some physical ailments. In my opinion, I'm very healthy, but I was undiagnosed for a long time, and then over the past 10 years, I've been living diagnosed as having Hashimoto's, which is an autoimmune condition affecting the thyroid, and it actually affects everything, every function pretty much in my body. And the main problem with this and many other autoimmune conditions is that the nervous system is under attack all the time, or we feel as if we are under attack all the time. So while I was literally being attacked all the time, I also was living with this medical condition before any of this severe autism even started and it's just been piling up and piling up. And I do treat it naturally and with you know diet and lifestyle. I take one little pill, no big deal.

Speaker 1: 5:33

But it's so easy to put myself on the back burner because of my child's needs. I mean, he can't do anything for himself, he can't defend himself, he can't think for himself, he can't function, and I feel that it is my responsibility as mommy to help him through these issues. However, these issues don't ever go away. In his case, many of our kids and you know we are overlooked with medical goals and advances and science and research and all of that. Nobody understands our kids and nobody cares to, and it's really hard. And I have a great idea on helping further the research and results with kids like ours and it's all in this blueprint that I'm getting ready to record and release the promo for.

Speaker 1: 6:19

But my point is that we truly cannot be effective in taking care of our children, who cannot care for themselves, if we are not able to care for ourselves. Alongside that caregiving, it's so easy to not sleep, not eat, overeat, oversleep. You know just all of the things that have to do with your nervous system, depression, everything that sets in with this lifestyle. So I urge you to try to find some solace, try to find some minutes each day where you can just focus on you. And yeah, it sounds ridiculous, it sounds hard, it sounds like a few minutes isn't enough because you've neglected yourself for so long.

Speaker 1: 7:02

And right now I'm experiencing in my own health what we call a flare in the Hashimoto's world. It was set off by something that I'm going to tell you the details about, but it was. It was so bad that I could not release a podcast for two weeks. I was unable to function. And now I'm dealing with a lot and I just, you know, on a parent-to-parent it's not always about the kid, it's not always about what they're going to do to surprise you and what lurks around the corner. It's, you know, you got to take care of yourself, and the story I'm getting ready to tell you. I will keep it brief, but it's a funny thing how it affected me and my health, it didn't even hurt my kid.

Speaker 1: 8:19

In addition to that, she and her husband still owned two of their five rental houses that they had had for a long time. So, in addition to her assisting us with Jacob, she was also gifting us both of those houses so that we could, as we saw fit, fix them up, sell them, rent them, whatever, in order to get money for either a down payment in a new place or to help Jacob in the long run in like elder care services and stuff like that. So we were so relieved to learn that we had this woman who loved her grandson, just unconditionally. Just loved him so much that she was going to spend more time with him, even though he was screaming and crying and being a terrible, terrible grandson at the time. She wanted to help and we were so relieved to have a loving person willing to help us. We thought, oh my gosh, the light at the end of the tunnel. Oh my gosh, we might be able to breathe, we might be able to go out without him once in a while. Oh, wow, this is getting exciting. And the two houses my spouse knows quite a bit about real estate. I know quite a bit about fixing up houses. So we were like, okay, this is awesome, the future is going to be okay, even though everything is hard right now. This is awesome. How wonderful of the family, how generous of the family to give this to us for our son to help plan his future and make sure that he is taken care of the best that we can. How wonderful.

Speaker 1: 9:54

And so when that date of her retirement came up, she in fact added another year on. I guess she wasn't ready yet. We were. We really could have used that help, but she wasn't ready yet. So she added another six to 12 months on to her working life.

Speaker 1: 10:11

Also, something happened financially for them where they saw fit to unload one of those rental houses that was promised to us for our son. Hey, that's fine, it wasn't ours to begin with. It was a great thought. It was really something that kept us going. It's like when you're working, working, working full-time, and you have a vacation planned and you know it's coming and you can get through that whole 12 months before that vacation a lot easier than you could if you didn't have a vacation planned at all. Right, so that's kind of how we were feeling, like, oh, wow, we're gonna get a grandmother over here with her loving energy and we're going to have these houses. Okay, so now we only get one house. That's not the family house, it's just a rental, so that's fine. I'm sorry that you guys ran into some kind of financial situation where you had to do that. That's a bummer. At least you had that, that's great. And now they're saying, okay, well, I promise I'm retiring on this date and the other house will not be sold, it is yours and there are people living in it. They've been living in it for 30 years. Everything is great with it. It's been kept up with repairs, everything's fine. It's a great house for you guys to use as your nest egg and then, of course, eventually down the line, the house that we're currently in is also an inheritance. All of these years.

Speaker 1: 11:30

My son is 24 and he was about 16 when we learned that we were down to one rental house and the grandmother was going to work another year. Obviously, she's not here now. She didn't want to play by the rules. She didn't want to obey the laws of what to feed him and what not to feed him, where to take him and where not to take him and all of the things that keep our son safe and healthy. She didn't want to play by that. So she got mad at us and she left and has not tried to interact with our son very much at all, as I've mentioned in past episodes. Fine, no one wants to interact with our son. Why should she be any different? That's fine. At least we still have the one rental house and this house, and although we're suffering by the you know the way things work in this house with us living here, at least we don't have the bills, the mortgage and stuff like that. We are just biding our time planning, watching the market.

Speaker 1: 12:26

We talked about this rental house last year because I have a really great idea which I'm putting into this blueprint presentation that'll be coming out very soon and I'm hoping to flood social media outlets with it, and the idea does have to do with buying property. Okay, two years ago, when I drew all of this out on paper and presented it to my father in law, we all sat down and came up with some ideas, and then last year we re-upped on these ideas, we refreshed our memories, got some more ideas going and the rental house and this house that we live in were all part of the financial plan as a means to move into the next stage of planning for Jacob's life and last year where we left it was that well, winter's coming, we're not going to do anything right now, but next spring and summer we're probably going to sell that house and pair it with the mortgage that is on this house. We had it all planned out and I woke up one day about three weeks ago and I found out that the roof was leaking again this roof in this house. So that was also part of the plan roof and siding for this house, because insurance wasn't going to cover it because of hail damage to the other house. So that other house that we were getting ready to sell has a brand new roof. It's got all these upgrades because of hail damage that the insurance company covered but wouldn't cover it for the main house that everybody lives in. So it was kind of a mess. You know how insurance is. The damage got worse over the winter, over last summer and then the winter, and now we're in spring. It's pretty much a waterfall in one area of the kitchen when the wind blows a certain way and it's raining. So my spouse found the waterfall like three rains in a row and about three weeks ago we had a really big one, and he approached his dad and said okay, man, we need to talk about the house that we're going to sell and we need to talk about this roof. We got to get some plans going.

Speaker 1: 14:24

I was not involved in any of that, but what I got was the result of the conversation, and the result was that we learned that he sold that house without telling us. He said that someone approached him, someone called him and said hey, we know that you have a rental house and we want to buy it. He did not consult us, he didn't mention it to us at all. The worst part is that - this is really hard for me to say - he sold that house for just under one third of its market value. For the price that he sold it to, he gifted it to some strangers.

Speaker 1: 15:09

For the amount of money that he sold it for, he could have offered it to us. We could have had our family back in a house together, the three of us. Everything could have started getting evened out for our son, even though that's not where we want to live, and blah, blah, blah. For the price it would have been well worth it. Well worth it. He didn't even give us the opportunity to buy the house or move into the house, or for the loss that he took on that house, he could have helped us. He didn't even think about us. I have been living in fear ever since. We are taking legal precautions now and getting things put in place so that he can't lose this house and leave us with nothing. But too little, too late. We lost a whole fucking house, man, a whole house, three bedroom, two-story house. He just gave it away.

Speaker 1: 16:06

I'm still speechless, but I cried for three days straight and my eyes were so swollen shut by the second day that I could not edit my podcast episode, which is the one that came out last week. I had to sit. It took me two weeks to be able to even focus on this anymore, and there's no way to prepare you or anyone else for that. You know, I mean I thought I had had the last of my lessons of you know you can't count on family and all of that. I didn't.

Speaker 1: 16:38

I never saw this coming and it's been really hard to try to cope with it, because not only does it affect my nervous system and my autoimmune condition and my health and my husband's health and his mental state and ultimately, our entire family unit. Not only does it affect all that, but you know it's really scary for us. You know we lost everything years ago, largely due to our son's decline, with his severe autism getting more severe without warning. We didn't, you know, I mean no one prepared us. No one knows anything about this autism that he has, and there was no way for a medical professional to tell us anything really.

Speaker 1: 17:22

But it was absolutely devastating to lose everything, and every day that we wake up is another day that we face the fears of what is going to happen to our son in the long run. We're giving everything we've got to take care of him, but what about when we're not here? We lost everything and it's almost impossible to imagine being able to financially provide for him the services and care that he deserves when he's older. He can't even get any of it now being on financial aid. I mean, who's going to advocate for him?

Speaker 1: 18:00

Anyway, it just threw me into a fight or flight kind of situation where I feel like I have to look for a place to live. I mean, that's how I feel and I don't have to, but that's what it's done to me. We don't feel secure, we don't feel safe. We just had our son's inheritance sold right out from under him with no regard for him at all and, no, we didn't even get any information about it until we had to ask about it. You know, I don't even know how long ago he sold the house and the fact that he didn't consider us at all... as Jacob's mommy, all I've ever done is fight for his rights and fight for people to consider him as a person, and you know, it just really hurts.

Speaker 1: 18:48

I feel like the battle was still going on and I went out for ice cream. You know what I mean? Like I never, I don't know, I just we're just devastated. There's no, there's no other way to say that. This is hard, because we went from having close to $100,000 in that house to having nothing. We have nothing from that house now and nothing is not going to get Jacob nearly as far. But I'm not, you know, we're not going to give up. But anyway, I have to admit I've been in quite a depression since that happened. I'm trying to get out of it. I'm trying to keep podcasting, but that's what happened. So I finally stopped waking up and crying and now I wake up and focus on we are healthy and we are safe. Although my spouse and I don't feel safe, we are all healthy and at this moment in time we are safe. Those are the blessings that I count every day.

Speaker 1: 19:50

I really feel that this brand of autism that my son has is largely becoming straight up mental illness, but every once in a while we get little glimmers of hope. It's almost like sometimes the autism takes a nap. You know like we can look at our son and he seems just so neurotypical, just briefly. You know when he's sitting in silence and just sitting in the car or something. Every once in a while you can catch a glimpse of him and what it would maybe be like if he didn't have severe autism. Sometimes the autism shell falls apart briefly to let us see that and it's equally heartbreaking.

Speaker 1: 20:29

You know, when we lived in Wisconsin in our beautiful home, my spouse came home from a sales appointment one night and said I just cooked for a couple whose daughter has a couple different conditions. She has autism and a couple other things, and she was severe. And he said I didn't meet her because she lives in a home, she lives in a group home and I was amazed. I hadn't ever, I didn't know yet that that was a thing. And I mean, we were isolated, you know, and I just didn't know yet because we hadn't gotten services from the state. I didn't have any education on what would be available from the state. I didn't have any education on what would be available.

Speaker 1: 21:11

So we learned this and you know, our son was starting to get pretty bad at the time. I mean, it wasn't as bad as what I've already told you, you know, with the torture and everything, but he was getting there. He was quickly getting to that point and I remember breaking down in tears when I tried to respond to my spouse, just from him telling me the story of them, I was floored. I said oh my gosh really. And one I didn't know it was a thing. So I didn't know it was available. So when you don't know what's available, you don't consider these things. And so it was a shock to my system as a parent and caregiver that that was even possible for a parent or for an institution. You know, I just I didn't realize that existed. So when he mentioned that to me, my jaw dropped and I got really sad and quiet.

Speaker 1: 21:58

And then I tried to converse with him about it and I just started crying and what I was trying to say at the time was I just can't imagine giving Jacob away to somebody. I mean, he's bad, but he's not that bad. It was heartbreaking to me to even imagine putting him somewhere, and I didn't have the mindset yet that someone else could do better for him than we could. I didn't feel that way yet I do now and I have for a long time, but at the time I did not feel that way and I just couldn't. I couldn't connect with that whole idea. Fast forward two years and I was begging to find someone anyone anywhere that could show me that they could provide him with a decent life and health and wellness to take him please. It was really only about, I don't know, eight to 12 months from the time I learned about that little girl until the time I realized that I think my spouse and I are hindering our son's progress. I think that we're getting in the way. I think he would be better off away from us. It didn't take long, you know. It was eight to 12 months and that went by like a blink of an eye.

Speaker 1: 23:09

I guess my point is that, whatever you think right now about your situation, be prepared for it to change. It changes so, so fast and I've got some stories coming up that are just really really messed up and fast, fast changes. You know I'm going to share these with you because they're really important milestones. Changes you know I'm going to share these with you because they're really important milestones in his life and I want people to know that these things happen. I may not get to it in this episode, but the next one I'm hoping.

Speaker 1: 23:37

But yeah, I went from crying and sobbing and being depressed and not being able to imagine sending our son to live somewhere else to wishing I could and having no one to send him to. Similarly, since I've been back here working in medical cannabis and all that, I've worked with a lot of women as patients who are married but do not live with their spouses, and five years I did this job and I thought, man, geez, I just couldn't imagine that. You know, I got my soulmate here. I couldn't imagine how sad, how lonely, how just unfortunate to marry someone and then become strangers because you never see each other. I just thought how weird, how I could never do that. I can't imagine having to be in that position. But you fast forward to right now.

Speaker 1: 24:32

And it's not that I want to get away from my spouse, but, especially after the devastating news of the house being sold, I'm now hyper aware of my lack of space as a woman, my lack of privacy, you know, the lack of personal time and the lack of privacy, the fact that I can hear everything inside and outside of this house. In my office I can hear everything and that means everything can hear me. You know, I'm the only woman in a house of men and I'm just hyper aware of it now. So now I see benefit in those women. You know going through that, yes, my child was relentless once we got him home, all the time and all that. But you know, I still managed to find time and now I find myself doing nothing, even if I have a little window of time, because I'm paralyzed by fear that whatever I do is going to be interrupted and it's just super unproductive and it's really stupid because I don't have anything to hide. Whatever I do is fine, I don't care, but it's just a weird thing. I guess my point is that you have to keep going. You can't just stop and be paralyzed by fear that you're going to be interrupted. You have to start, you have to keep going, and I'm really just telling that to myself and hopefully it helps you too, you know, because if for me, you know, if I can't be alone for certain chunks of time, I can't think, and then I can't plan and I can't function if I can't think and plan, it's just really, really hard, and I'm advocating for all of us, not just our children. We, as caregivers, need help. We need time for personal development. We need time to just think as adults, not as emergency mommies and daddies. I'm having a really hard time, and if you are too, I want you to know that you're not alone. Speaking of time, imagine that I am out of it again. So I just want to quickly close with this cute little story. I think it's cute.

Speaker 1: 26:37

Another little communication breakthrough, as I mentioned, happened recently. It was probably four weeks ago now. It was actually right after the episode I released before the devastating news. So I was out at the gym and once I got in the door, Jacob did the normal greeting. We've always said Jacob's home, Yay. So he said yay, Shannon's home. And he actually kept it going. He said how are you doing? The best that he could. And I said I'm okay, it's cold. And he said yeah. And I asked him what are you you doing? Normally when I say what are you doing, he'll say good and that's it. No matter what, no matter what you ask him, he'll say good. So I said what are you doing? And he said not much, just having some fun. I said, wow, good talking buddy. And I gave him a supportive little squeeze and he said exactly! Yeah, I'm so proud of him.

Speaker 1: 27:29

And then just today, he said that he needed help. He needed my help and he couldn't find a shirt because his shirts were in the wrong slot in the closet, cause I have a soft foldable hanging cubby because I had to eliminate all things in the closet because of destruction. So they were just one slot down and he's like, the best way that he could, he was telling me that he didn't have a shirt, but it was just because they were in the wrong spot. So I showed him where they were. I mean, obviously, it was right there, you know, but they weren't where he expects them to be, so apparently they don't count. Anyway, I showed it to him and he goes oh, thank you. And I thanked him for talking to me and telling me what he needed and all of that.

Speaker 1: 28:06

I try to be really good about reinforcing that. Yes, this is good. Communication is good, trying to use your words is good, asking for help is good. I don't think it makes a damn bit of difference. I think that he decides when he wants to do good and when he doesn't, and communication is not one thing that he can decide upon. Anyway, it seems, in my next episode I'm going to get into some of the really strange behaviors that started coming out, even more strange than the other ones I've told you. And then I would say, probably the most damaging, devastating realization about his development, or lack of, I'm going to get into that in the next episode. You hang in there, you're a superhero.