Son with Profound Autism Overwhelming (VERY) Young Father

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Call 866-WINASIA or to see chickens and other animals to donate, go to CritterCampaign.org. Welcome back to Hope for the Caregiver. I am Peter Rosenberger. This is the show for you as a caregiver. It's about caregivers, hosted by a caregiver, and it's all about the family caregiver, people who are struggling with caring for an impaired loved one.

It could be somebody who's dealing with addiction or alcoholism. All of those are impairments, and we are here to help strengthen each other through this process. By the way, I stream the show. When we do the podcast, I stream it on Facebook, and I have a running challenge with Facebook on trying to get all this right. I don't know why I even do it, but I do, and I try, and some people are saying that the commercials and John are a little bit muffled, but I'm clear.

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We try to put as much stuff out there as we possibly can. All right, John, I want to pivot and switch gears a little bit. You introduced me to a scenario, and I'd like for you to set it up, set the table, and let's talk about it.

Sure, sure. Okay, so this is a friend of a friend, but a dear friend of mine ran into this individual. They've been working with him for some time, and this young gentleman is 21.

He's just a kid. And I don't know, well, I know what led up to it, but he finds himself, and I'm a little short on the details, but he finds himself with a very autistic, profoundly autistic son. And he's 21, and his job is suffering, his emotional stability is suffering, and I don't know what kind of emotional stability I had at 21. I don't know what kind of emotional stability I have at 57. Yeah, exactly, yeah, yeah.

But he's just in a real, I mean, he's in a bad way, a non-zero amount of despair in this, and sorrow. I remember, I got not necessarily lucky, but I can't imagine having to deal with something like that at that age. So, I mean, this child is four or five years old, so this young man was 16, 17 years old when this journey started. Babies having babies.

Babies having babies. But it's been going on for the entire recorded history of humanity, so this is not a judgment call. This is just a statement of fact.

It is a brutal reality for children, for anybody that young to have a child, to be responsible for another human being, that is a brutal reality in and of itself. When you throw in profound autism, you're dealing with a reality that has crippled many stable adults. Right. And I think you mentioned that he had kind of a meltdown at work.

He did, yeah. And was in the corner crying kind of thing. And, you know, I got to tell you, when I heard that, I could picture that, and I know that all the listeners can too, can picture that. If you've had any kind of skin in the game as a caregiver, you've been in the corner crying or under the bed at a fetal position crying. If you've got any skin in the game at this, you understand what that level of despair feels like. And sometimes when you go to work, that's the only place that you could do that. And then your job suffers because that's not the appropriate place to do it, and you don't know what else to do. Yeah. And then, you know, then somebody comes down on you at work because you've been slipping or whatever because of all, you know, understandably so, but it's still, you know, more stress and more stress.

And then you end up with this vicious cycle of stuff. And I thought, you know, when I heard this, I thought back to something that you said a couple of times. You know, you wrote, you've written a couple of books, and you mentioned that when you speak on caregiving, a lot of times you are speaking to that 26-year-old Peter. 22, actually. 22, well, yeah, yeah. Yeah, yeah, right, right. I turned 23, I mean, two weeks before we got married. And Gracie was already hurt when I met her.

Yeah, yeah. And so I was, I was a baby myself. And you're right, it was, I look back and I think, you know, I feel bad for that young man because I was so unprepared.

And, you know, and I was, and I freely admit it. When you told me about this young man, I thought about this, and I thought about it all week, because there are a lot of people that listen to this show and download this podcast. And they're dealing, and autism is a big issue.

And when people think of caregiving, they usually think of seniors. And you and I have worked hard over these last eight years to redefine the conversation to basically just include chronic impairment of any kind. Right, yes. And so the first thing for this young man, and I know that you're going to send this recording, he's going to hear this. Yes. And so will others that are dealing with the same thing. Well, if he chooses to listen, yes. If he chooses to listen, he will have access to it. Yes.

And I would suggest that the first thing, the best thing, first off, just take a breath, just take a deep breath and slow, just a slow, deep breath and let it out really, really, really slowly. And then he's in Tennessee. And I would call autism of Tennessee.

Jabs Tierno is the executive director there, and just a wonderful person, she's been on the show. And she has two children with autism, but they have, the first thing they could offer this young man is that they speak the language. And so, when you get this, when you've experienced it, you really get this, when you hear somebody speak in your native language after being around a bunch of people who don't, it is truly a wonderful thing. If you've ever traveled overseas, and then you get to a place where you hear a voice, you know, when I'm in Ghana or wherever, and I hear somebody talk with an American accent, or better yet, a Southern American accent.

If I hear a y'all somewhere, you know, it is so comforting to hear it in my own native tongue. And, and this is where right now where this guy is, he's in an environment now where nobody speaks his language. He's learning a language. He's learning it, and he's learning it all on his own. And I would call these folks and start at least having a conversation with people who speak the language, and can help him understand this a little bit better. Because I think that's the first step is to build this bridge for himself out of this quagmire, and people can help him do it. And there are people, there are organizations out there that can help him do it.

And then they will also help him, if they don't help them, help him read my book, because I have a chapter on this, but of talking to employers about what you're dealing with, and helping to explain it to employers. It's, you know, one of the things I talk about is be forthright with your supervisor, with your boss. You know, be forthright with it.

I call it the three F's. Don't try to somehow, you don't have to give all the details, but do be forthright with it. So look, I'm dealing with an incredible, incredibly difficult burden. The second one is, is ask for and give flexibility to the best of your abilities. And then the third thing is, give a fair day's work for your pay.

Make it up. Don't slouch on it at all and use your caregiving as an excuse. Even if you have to do, you work around timeframes and so forth. But those are things that, you know, most employers will understand. But then you also, at the same time, need to be working on a path of stability for yourself in this, because it's unsustainable for you to keep having meltdowns at work. That's unsustainable.

It's not going to end well. And this child with autism needs an employed father. And that's going to take a lot of help from some folks. And there are people that can help and will help. But it starts with learning to speak the language. And I think, you know, the autism chapter of, there's so many wonderful groups out there for autism.

Autism Speaks and so forth. And they're out there and they are ready to serve. And these people, these are committed people. They did the journey.

And they take this very personally. This is a personal mission, but it's not a job. This is, it's really almost a calling, I guess, is the best way to say it. A vocation, yeah.

Yeah, it is a tremendous journey for them as well. And so, and I have found that the more you speak into other people's lives, the stronger you get in your own circumstances. And I've been doing the show long enough. So those are my initial thoughts with this young man. What do you, does that mean? Yeah, a lot of that, a lot of that does, well, you know, I've heard a lot of that before. The thing that I hadn't really, that you and I haven't really spoke about too, because we, there's a, it's such a huge subject. But we haven't really dived into, you know, relationships with employers very much. We've mentioned it here and there, but that's a, I think that's a very valuable thing too.

I like what, you know, what you, what you went into with that was, seems like it would be very valuable, especially to a 21-year-old because they're still just learning, you know, when I was 21, I was still learning how to be an employee, period. At a bunch of clock. Yeah. Yeah. Like what's 401k? What's that?

I don't know. Like that's, you know, I was, I had little part-time gigs here and there, you know, I was in college and stuff. So, but this guy's full on doing a great job. And, you know, like he's, he's getting the work.

It's the emotional aspects of it where he's, where he's faltering for good reason. But yeah. And I have found by and large, most employers, if you're forthright with them, if you're not shirking, but you're, you know, you're, you're, you're honest in your, in your efforts here. And trying to, to really do the right thing will work with you. Now they can't do it in terms, they're not a social worker. They're there to make a profit.

Yeah. And so you have to, you have to, you know, weigh some of these things out for the long term, but while you're there, and it may not be the best fit for you to be at that job and have the flexibility you need for a child with autism. May not be the best fit. But this is where you are. And I worked in jobs, I gotta tell you, I worked in jobs that I really did not like. And I did it for two reasons.

One of them is the, the proximity and flexibility I had to be able to care for Grace again. Yeah, location, you know. For health, health insurance, health insurance.

Yeah. Well, and, and we're getting a lot better about, a lot, many large employers are getting a lot better about having an HR department that does provide an awful lot of resources. Like, hey, we've got, you need, you need a, a, you know, some, you know, a group meeting or something like that.

Well, we've got a list of them. They have counseling, they have like six, six free counseling sessions that they'll have with certain, depends on how large the employer is. Sure, sure, sure. That they'll do with, they'll, they'll outsource counseling. And I think that is a marvelous, and check into it.

He may be at a very small company, I don't know. But if, if for other, You know this company, you know this company. Okay. Well, if it's a big company, then, then that would be a place to start and say, look, I am, I am overwhelmed. I am way in over my head, you know, and it's okay to admit that. You don't have to give details and you don't have to go there with your hat in your hand, but it's okay for you to say, I need help. And I'm going to, I'm going to give a personal example of, go ahead.

Go ahead. Oh, I was thinking the first time you do that is going to be very, very difficult. But it is going to be practiced for the next three or four times that you have to do that because you're going to have to do it again.

Three or four hundred times that you have to do it. Yeah, you know I need help. Well, I, I, Don't get me caught up on the math here, okay?

Come on now. Well, I was, you know, I, I was, I've been struggling with my leg. It's been hurting and I haven't been sleeping and I don't want to take a lot of pain medication because I, you know, I just don't particularly want to introduce that into my body very much and I'm not very good at taking medication anyway. I've never really been sick, which is surprising. I've been a caregiver now in my 35th year.

Physically. Yeah, I do. That diagnosis sailed a long time ago. But I've been a caregiver for a long time and I broke down and had, and just went down to the clinic and said to the doc down there, I was talking to him on this last weekend. I said, look, man, I am, I'm really struggling here. I'm not sleeping.

This thing is keeping me up at night. I can't function. You know, I have literally written the book for caregivers and look at me, man, I'm falling apart. And I need, I need some help. What, what does help look like here? And, and he and I kicked around some ideas of things we can do. And I think we got a pretty decent plan.

And it was embarrassing a little bit. You know, here I am. I have a, I have a, the nation's, truly the nation's largest platform broadcast wise for family caregivers. I've literally written the books for family caregivers. And here I am in that same place. But, but that's my journey.

That's who I am. I'm a caregiver and I need help too. And I need to be reminded of these things too.

And so it is difficult to ask for. And I, you know, I did, my in-laws did something for me yesterday. You see, we live next door to them out here in Montana. They live up the hill. Next door in Montana, by the way, is not what it is in a suburb. Three days later, we find it their house, you know, but they live up the hill. And I was hurting.

It hurts to sit in the car for lengthy periods of time. And I had, there was some prescription Gracie needed in, in Bozeman. Well, that's 60 miles away.

And the pharmacy that's local to us, doesn't really carry some of the things that she needs since we have to go to a bigger pharmacy. And they, they offered to go and get that. And I, I, when they got back, I looked at them. Of course, I've been taking care of their daughter now for a long time. But I looked at them and I, I was, and I was able just to, I got a little bit emotional and I said, I want you to know how much this means to me. I'm not used to needing help like this. And I'm certainly not used to asking for it, but I have to ask and I have to accept it. And I have to let you know how grateful I am.

And they were like, they, they looked at me kind of like, what's the matter with you? Of course, it's our daughter and it's you. But at the same time, that's how we caregivers feel. And so this young man who's doing this, understand that you've got an old man who has his own radio show for caregivers who deals with the same thing. And it's OK to ask for help. In fact, it's not only OK, it's imperative and help is available.

And we want to we want to give you all the tools that we can here to shepherd you along the way. This is hope for the caregiver. It's hard enough being a caregiver. It's impossible to do it alone. Let's do it together.

Healthy caregivers make better caregivers. John and I'll be right back. Have you ever struggled to trust God when lousy things happen to you? I'm Gracie Rosenberger. And in 1983, I experienced a horrific car accident leading to 80 surgeries and both legs amputated. I questioned why God allowed something so brutal to happen to me.

But over time, my questions changed and I discovered courage to trust God. That understanding, along with an appreciation for quality prosthetic limbs, led me to establish Standing with Hope. For more than a dozen years, we've been working with the government of Ghana and West Africa, equipping and training local workers to build and maintain quality prosthetic limbs for their own people. On a regular basis, we purchase and ship equipment and supplies.

And with the help of inmates in a Tennessee prison, we also recycle parts from donated limbs. All of this is to point others to Christ, the source of my hope and strength. Please visit standingwithhope.com to learn more and participate in lifting others up. That's standingwithhope.com. I'm Gracie, and I am standing with hope.