Navigating Life as we Know It

Episode 0 - An Introduction to Navigating Life as we Know It

August 12, 2020 Envision Media Season 1 Episode 1
Navigating Life as we Know It
Episode 0 - An Introduction to Navigating Life as we Know It
Chapters
Navigating Life as we Know It
Episode 0 - An Introduction to Navigating Life as we Know It
Aug 12, 2020 Season 1 Episode 1
Envision Media

The first look at Navigating Life as we Know It. This is a "special" episode where Steve and Kerry talk a little about what can be expected in upcoming episodes.

Help Support NLAWKI by becoming a Patron at https://www.patreon.com/NLAWKI

Support the show (https://www.patreon.com/NLAWKI)

Show Notes Transcript

The first look at Navigating Life as we Know It. This is a "special" episode where Steve and Kerry talk a little about what can be expected in upcoming episodes.

Help Support NLAWKI by becoming a Patron at https://www.patreon.com/NLAWKI

Support the show (https://www.patreon.com/NLAWKI)

Steve :

Hi, this is Steve Johnson. And I want to tell you about our new podcast navigating life. As we know it, it's about people who live with disability and their families, celebrating ability, embracing diversity and living inclusively navigation is a process of carefully determining the best path to safely arrive at a planned destination. The Traveler's goal is to avoid danger and roadblocks on their path toward opportunity, which in this case, we will call a full life. Now we are a diverse group of people and not all of our challenges will look the same. Take housing. For example, depending on an individual support needs, the solution could be very different from one person to another. But the need for housing is common for all our goal for Navigating Life as we Know It is to help you determine the correct path for your individual circumstances. The first season of navigating life, as we know, it will cover a multitude of common topics. We'll be visiting with speakers who are experts in issues such as advocacy, inclusion, transition, housing, public benefits, planning, legal planning, therapeutic options, educational choices, employment opportunities, and family dynamics. We're also planning some round table discussions with families and individuals with disability about the challenges and opportunities they face every day. And about the psychological effects they have endured as a result of COVID-19 and social distancing. Yeah, we have a lot planned , but the future of this podcast will be determined by you. The listener, the next season of Navigating Life as we Know It will be determined by the input and suggestions we get from you. At the end of every episode, we have an opportunity for you to provide feedback. And so let us know what i s important for you to know more about, we call this portion of the show, the NLAWKI Chat Cafe. We're excited about creating this podcast for you and we're eagerly anticipating your Input

Alex:

Thank you for tuning into what we're calling episode zero or an introduction to navigating life. As we know it, I'm the producer of NLAWKI. And I would like to invite you all to join our conversation on Facebook and help us make each episode of this podcast better. Starting next week, we will begin our first season with a series of two part episodes, starting with the history of the disability rights movement from one of the people who has a ceremonial pen from the signing of the ADA. If you'd like to get involved, we welcome your support, suggestions, and your comments. Please join our Facebook community, like and share our podcast. And if you would like access to some behind the scenes goodies, sign up to be a supporting member on our Patreon. We're easy to find Just look for the green compass whenever you search for Navigating Life as we Know It right now, I'm going to take you to a conversation, Steve and his Cohost as they talk a little bit about the origins of our podcast and what you can expect to hear going forward.

Steve :

I am sitting here talking with Kerry Johnson. We both have a wine spritzer and we're having some fun.

Kerry:

It's a sprit in.

Steve :

It's a spritz in .

Kerry:

Nope.

Steve :

Okay.

:

[background thrum]

Steve :

Don't do that. The dinosaurs are walking around,

Kerry:

Steve.

Steve :

Yes.

Kerry:

What would you say where's your original inspiration for the podcast?

Steve :

Being a special needs parent because every step of the way is a new adventure, but not in the way of an exciting adventure. It's not like going on a Safari for the first time. It's more like going down there . Well, maybe Safari, but we're swimming in the water. There's alligators there . Okay.

Kerry:

Only after we get in.

Steve :

right after we get it, but it's because we have a special needs parenting experience and we're not alone, but we are all alone in a way because parents don't talk about this with each other, as much as they should. We're very functional as parents, we talk about what's the best program here and who's got the best services there. And who can you recommend a doctor? We're not talking about the fact that some times inside we're dying because of this stress and because of the sadness and because of the challenges we face.

Kerry:

and the isolation that's forced on you.

Steve :

Right? And I guess the inspiration for this is to let people know that you're never alone. We're just not necessarily communicating with each other about some of the things that matter so much. This started out as a book. It was going to be life. As we know it was Liam, but it occurred to me that, you know, that's my experience, our experience, but it isn't the experience everybody else. And one way to get input from everybody about the navigating life as we all know it is to talk with people that walk the same kind of paths and , and experts that can help us navigate that path

Kerry:

Experts in terms of those, with the knowledge and the various topics that you pick.

Steve :

Yes.

Kerry:

But also experts in terms of those actually swimming in those waters, with us

Speaker 1:

Swimming with the alligators. Yes . Swimming with the dolphins would be a lot more fun, but sometimes we have alligators in the water.

Kerry:

and yet I thought it was going with dolphins and it was alligators.

Steve :

I think that sign should be changed. Well , it's it . That's what it's about.

Kerry:

Great. So where do you want to see things go?

Steve :

Well, the first season is topics of great value that are kind of low hanging fruit. Everybody wants to know about housing. Everybody wants to know about Medicaid benefits and social securities are the standard fare things that we all go through. We all pass through these Gates. Okay. And so we're going to covering a lot of that and then also gathering input from listeners because this isn't just what we have in our heads that we want to regurgitate for people. I want to find out specifically, there could be things that are very, very important to a large segment of the special needs population that we're not quite aware of.

Kerry:

Or we went through this thing and we didn't, we just, we went through it, cause this is what we do. We go through it. This is what we do.

Steve :

Right.

Kerry:

We just get in that canoe and we just start digging in and going and going. And we don't even know that that was a challenge until somebody says, Oh my gosh, how do I even do this ? You say , Oh, I know because I did this or did something very close to that .

Steve :

Yes . Correct. Excellent. And you know, there's a number of Facebook sites and other things that are doing an excellent job on parent to parent family, to family about specific things. They happen quite often about a specific medical condition or a service provider or, and that's great conversation. This is a little bit different because it can be about issues that are sometimes psychological, a number of things, which I hope to , to enhance that kind of resource that already exists. But we need to know from people what they want us to do, because we will head out in directions We can't anticipate at this point, as long as we're able to help folks. So this is going to be something of value to them.

Kerry:

So the compass,

Steve :

right, the compass in the next season, we want to have a mix between the same kind of topics, because we're not going to be able to do the definitive job in education and post graduation transition and all the things we have on the list. Those will be there still next year. But what we're trying to do is also maybe do some investigation where we're not just talking about a particular expert on a topic like ABA treatments for autism, but we're talking about people's experience with it in alternatives to it. So we're going to be a little bit more work going into some of these podcasts in order to give a three 60 view of the topic.

Kerry:

Oh, okay.

Steve :

And then I would like to be able to, at some point you have some public presentations if possible, and that might include setting the mic up in an area where people come in and we just talk or have family round tables with individuals that talk about, you know, what has been your experience with your child moving out of the house, or as you're preparing for that , uh, what are you doing? What are you going through? And what are you doing ? Right? What are you going through personally? What is it that keeps you awake at night

Kerry:

And often run into people, sharing some of that information?

Steve :

Cause we're supposed to smile and say, it's all fine.

Kerry:

I'm fine.

Steve :

Yeah. Yeah. Don't you wish you could have a cloud above. Somebody said like in the cartoon that says what they're really thinking.

Kerry:

Some of them. Yes, yes, yes.

Steve :

Damn alligators , right?

Kerry:

Yeah, yeah, yeah, yeah.

Steve :

So, well, yeah. And NLAWKI, which is Navigating Life as we Know It , it is about navigating and in order to help others with the navigation, I need to know where you want to go. We already talked about that a little bit, but it could be a whole new Avenue. It could be something that comes up to somebody mind that I really needed to know more about this. And I can't envision it right now, but we need to know what those things are so we can pursue them. We want to engage with listeners. I don't want to just be regurgitating things. What I heard about, we want to have you be part of the direction.

Kerry:

Excellent. Sounds like we really want feedback. Lots of it.

Steve :

Lots of it.

Kerry:

Are there any topics you want to avoid?

Steve :

No. We're going to cover a lot of things. One of them that I'm excited about just because it's something that people don't talk about, but what about sexuality? Our kids grow up. They get to be teenagers. Guess what? The hormones still work the same. How do we deal with this? That's a big issue. Safety in the world in terms of their situations that many of our kids might be too trusting about that. We don't want to be Uber protective, but we want them to be able to be in a safe space.

Kerry:

We also need to educate other people about our kids and safe ways to come on them in a scary, anxious situation. I don't think that that's always out there either. Yeah .

Steve :

It's one initiative that I know the DD council in Michigan is working on in terms of educating police departments. Because someone with an invisible disability, like autism could be in a situation where a police officer could read it the wrong way and they've been tasered and they've been handcuffed and that is a trauma beyond our imagination that somebody with autism will be wrestled to the ground and have handcuffs put on him . So there's a lot of education that we need to do.

Kerry:

Right.

Steve :

So I don't want to avoid any particular topics, but there are some, let's say methods in some themes that I want to avoid. Yeah.

Kerry:

Methods. Yes.

Steve :

For one thing, there's hearsay. Well, I heard that this particular treatment might do this or this kind of a special diet. That may be true, but if it's controversial and there's hard feelings on either side of the issue, I don't really want to get into that because this is going to benefit Hopefully everyone, regardless of what your particular beliefs might be about a specific issue, because that's a good way to alienate people. The other one is politics, and we're going to be apolitical. There could be something that one party or another is advocating. We all have our particular opinions, but we're not going to get into bashing between the right and the left because it's of no issue. What is important to us is our kids and not just our kids, but the disability community as a whole. Because if we only focus on our kids, we'll still have the bigger problems.

Kerry:

Absolutely.

Steve :

So I don't want to get political. I just want to hear things that work and suggestions that work, and somebody might think this thing is a socialist principle , but if it's for the benefit of our kids and the disability community, we'll talk about that. I'm just not going to get into the political viewpoints of it. Diagnostic specific issues. I think I want to not delve into that because there's an awful lot of different disabilities and we could spend a year on autism alone and it , it doesn't really have enough general interest. We will be talking about specific treatments and specific therapies, but not focusing too deeply on any one . Otherwise we'd have to rename this and navigating autism, as we know what is something , um, and specific medical treatment, endorsements, some things that work very well for some people and they may have not worked well for other people.

Speaker 1:

We don't want somebody to say, well, I heard on that podcast that this is a really good thing. And then they go to their doctor a specialist and they say, well, not in your particular situation. So we don't want to be necessarily advocating for any specific medical treatment or therapy. We're going to be talking about the value of it, but people need to make those decisions based upon their medical professionals and not us. Right . So their team. Right. Got it. But if you don't go back with the idea that your team might not be considering it. So yeah. We don't want to go too far in one direction where periods, where we're backing something, you just want to be able to make people aware.

Speaker 4:

Oh , okay. So what can we expect to hear about during the day

Speaker 1:

First season? Well, we've already got about 27 to 30 interviews done and they're over things like advocacy. We have interviewed the Michigan developmental disabilities council, executive director, and we've also talked with the legislative liaison about different things going on in politics, state and national Michigan protection and advocacy services. There's a lot of things like that in terms of advocacy, organizations and advocacy is something that is done throughout. It's not a particular area where you say, I've nailed that. Let's move on to the next one you advocate about in medical situations, you advocate in housing, you advocate in education.

Speaker 4:

Advocacy is the hammer, not the nail.

Speaker 1:

It's also to the diplomacy. It's yeah. Okay. I know what you mean. I'm thinking hammer . I'm thinking about somebody coming in and saying, well ,

Speaker 4:

No , no . I'm not saying that . Yeah .

Speaker 1:

Yeah. Not like putting the hammer down.

Speaker 4:

Yeah . You put the nail in. Okay. I'm done. I don't have to do that again. This is a tool right . That you're going to need through out.

Speaker 1:

Right? Because you can advocate in a way in which you're maybe adversary on a situation, becomes a partner with you, or you can advocate in a way that alienates and generally speaking, you don't get your way. That way you've gotta be able to be heard and you've got to listen. So advocacy is an important thing. We have a number of people. We talked about inclusion, friendship circle in West Bloomfield township was one of the great ones professor for Talison university, Beth Heller, about ableism. We've talked to a number of different people out in California and Oregon in Chicago about inclusion. And that includes everything. Transportation, employment, home, and community based service requirements, access to community based services and resources, a lot of different areas. And that will be something that will be an ongoing thing because inclusion is one of the biggest hurdles we face transition. Our kids start transitioning. As soon as they get out of the neonatal intensive care unit. If like in our situation, it was a premature birth, right after a diagnosis, they're transitioning all the time from one program to the next one, step to the next, from kindergarten into grade school, from grade school into high school, high school into what we don't know. That's the big one. That's where you fall off the cliff. Right? So , so we'll be doing a lot with transition. The whole board changes. Yeah . And it's scary because you feel like you're starting over every time you've made a lot of gains and now guess what? You're the small fish in a big pond again, and you have to fight for everything. So I hopefully will be a good resource in terms of transition. Housing is also a big thing, especially when you get to the age of 18 and beyond, because there's a time in which the next step for growth is being outside of mom and dad's house. It's being on your own, but not on your own appropriately supported and housing where you can make more decisions on your own and focus on your own priorities. So housing is huge benefits. It's always a mystery what social security does and doesn't do and SSI and SSD I and our SDI . And, you know ,

Speaker 4:

We're also very nebulous things because other things impact them. And so sometimes what is here kind of morphs and is gone, but now we've got these other things for them ,

Speaker 1:

Right? And somebody says to another parent, or ask a question, what is your son or daughter get? And you, and they give you an answer and you find out your son or daughter doesn't get the same thing. Well, why, why are the circumstances different? There's , there's a lot of mystery and confusion around that. And so we'll be talking about social security and Medicaid services, including things like don't always believe what you're told. Cause you're entitled sometimes to a lot more than you're being led to believe. So that's made me worry . Advocacy gets more to push and shove sometimes because you're not always don't take no for an answer is the best initial advice until you investigate, because there are state organizations that will help you advocate for what you're supposed to have rather than the hearing, what someone says you cannot have.

Speaker 4:

So, you know, what kind of unpacking can you do about what you need from our listeners going forward? What would be some of these things?

Speaker 1:

I'm glad you asked that because that's really important. Again, we can't do this without you guys listening. After each episode, visit the end Locky chat cafe of which Carrie of course is the manager. It's a virtual cafe. And basically I'll be kind of going over a couple of things from the interview that I thought was important, but sometimes there might be a couple dozen really interesting points made. I'm just sharing my part, not to tell you what is important because there might be two or three things that you wanted to learn more about. And we want to hear about that. Cause we'll go back and revisit the issue and we'll try to answer those questions. Good to know. We want you to visit after every episode you'll, we're going to have some kind of intro into it. You'll hear about the end. Lockie Chad cafe. Please listen. It's going to be short. We're talking three to five minutes probably. And tell you how you can respond, participate, participate. Got it. It's hard to have a conversation on a podcast because it's not a live radio program we can call in. This is the closest we can get to it. Perfect. And you can respond on our webpage or Facebook and we'll give you a ways to communicate with us , uh , refers to your friends and the different disability groups. You might be a member of the bigger, the base of listeners. We have. The more variety we'll have in the more value we'll have in terms of our material. So we need to hear from you above all. That's what we need. Also please consider subscribing to the podcast. And if it's something you wish to do, we'd like you to become a member and financially support because we don't have any sponsors. All this is just a startup. And for us to grow, maybe to do some more investigative type podcast episodes or answering deeper questions and in broadening what we do, that's going to take money. The more resources we have to do that the better job we'll be able to do. So please listen, subscribe, interact with us. And together we can navigate almost any river or tributary and avoid the alligators. Hopefully keep your oars in the boat. Minimize. Yup , absolutely. Thank you guys very much for listening. And we hope that this'll be a very enjoyable and informative podcast for you. Thank you. Thank you,

Speaker 2:

Navigating life. As we know, it is a production of envision media group. Our hosts are Steve and Carrie Johnson, technical consult and website management is thanks to Holly of Hollyhock designs, inc. And research and communications are handled by our intern. Daniella I'm the producer, Alex, and this has been episode zero or an introduction to navigating life. As we know it tune in next week for episode one, feisty and noncompliant, a history of the disability rights movement. Please remember to like, and subscribe to our show wherever you get your podcasts from and join our conversation on Facebook, navigating life. As we know it.