Navigating Life as we Know It

***WARNING***The topics in this episode might not be suitable for everyone. This episode covers the period of time during which one of the twins passes. This is an intense and very raw subject that is addressed directly. Please use your best judgement. Join Steve, Kerry, and Alex as they discuss the events that brought their family into the disability community and eventually led to this very podcast. No matter how your journey with disability began, we all have a story, and we all share certain traumas. We are sharing our story to help others know they're not alone. Our goal is to fight the isolation that seems to soak into the very bones of the disability community. How can our loved ones ever find a community if we cannot build bridges with each other?Support the showThank you for listening to our podcast and for your continued support! We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews. If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

Part one of a special miniseries that will be aired on key dates, Navigating Life with Lliam is a walk through of the experiences and circumstances that have defined our own journey and eventually led to Navigating Life as we Know It!Support the showThank you for listening to our podcast and for your continued support! We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews. If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

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. Support the showThank you for listening to our podcast and for your continued support! We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews. If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

When you first discover you'll be parenting a child with disabilities, the road ahead can seem daunting and lonely. Kris Burbank and Linda Hoopes join me to shed light on this path, offering wisdom from their book "Embracing Another Normal." Together, we unpack the resilience necessary for such a journey, sharing personal stories and strategies that resonate not just with parents, but anyone facing adversity.The podcast unfolds the reality of raising children with unique needs, unwrapping the complexities like the layers of an onion. We discuss the importance of fostering connections and nurturing positivity, even when the isolation feels profound and the challenges insurmountable. Our conversation is filled with genuine experiences and practical advice, aiming to build a lifeline of resilience for families navigating these waters.Finally, we tackle the notion of strategic decision-making and energy management, with Kris and Linda presenting their framework for resilience that can be applied across life's challenging terrains. Listeners will come away with a sense of empowered grace, learning that it's not about avoiding obstacles, but rather, reframing them into opportunities for growth. Join us for a heartfelt exchange that celebrates the strength found in vulnerability and the triumph of the human spirit in the face of life's unexpected turns on a special hiatus episode of Navigating Life as we Know it!Use this link to order your own copy of Embracing Another Normal from Amazon: https://a.co/d/5lZFmbKSupport the showThank you for listening to our podcast and for your continued support! We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews. If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

Ever wondered how one's mindset shapes their success? Join us as we explore this theme with the remarkable Dr. Temple Grandin, an autism advocate who turned her diagnosis into a testament of resilience. She shares her journey from a non-verbal childhood to becoming a professor at Colorado State University and a celebrated author. Listen in to this riveting conversation and learn about her fervent advocacy for people with disabilities, her views on the value of different thinking styles, and her firm belief in hands-on skills in both education and industry.In today’s tech-driven world, practical skills are often overlooked. However, they carry immense value, not just in education, but also in industry. This episode highlights the importance of practical skills, the impact of mentorship, and the crucial role of social skills. We discuss the influence of Dr. Grandin's mother, and William Carlock, Temple's grade school science teacher her early educators, who, from an early age, challenged and inspired her.  We also examine the impact of technology on practical skills, and Dr. Grandin's views on transitioning young adults with autism into independence.Our thoughtful conversation goes on to embrace the importance of exposure to a variety of activities for young adults with autism. We delve into the pressing need for policymakers to understand the practical side of things, and we finish off with a profound discussion on social responsibilities. Hear Dr. Grandin's insights on social skills in autism, the significance of responsibility, and the changing dynamics of teaching manners in schools. Don't miss out on this enlightening episode with Dr. Grandin, it promises to provide you with a fresh perspective on success, resilience, and the power of the human mind.Support the showThank you for listening to our podcast and for your continued support! We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews. If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

Navigating the world with a disability can often feel like an uphill battle, especially when it comes to travel. We've experienced it firsthand as we journey with our son Lliam. Our struggles sparked a conversation and led us on a journey to understand more about accessibility. We found ourselves crossing paths with the passionate advocates behind AccessibleGo – a leading accessible travel website in the US that's revolutionizing the game for travelers with disabilities. Today, we're thrilled to bring you a deep dive into this fantastic platform and the people at its helm.In our chat with AccessibleGo's Program Manager, Patch Epstein she gives us an inside look into how they're breaking down barriers in travel, confirming accessibility for each booking, and generating revenue while doing so. Patch shares the experiences of several clients and the transformative impact AccessibleGo has had on their travels. Plus, we pick her brain on ways we can make our own spaces more welcoming and accessible.We round off our discussion by delving into the wide array of services AccessibleGo offers to improve travel accessibility, and Patch shares their vision for the future. From booking accommodations to providing a treasure trove of resources for travelers with disabilities - they're truly making a difference. Patch also talks about their inspiring Travel Inspiration blog, a brilliant resource for activity ideas. So, let's explore together and learn about the incredible work AccessibleGo is doing to pave the way for truly accessible travel for all.Support the showThank you for listening to our podcast and for your continued support! We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews. If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

When we first spoke with Tiffany Dill several months ago it was about her Universal Design Consulting firm, Blue Day 2. As of July 1, 2023, she has combined her talents and passion for accessible design with Gretchen Kingma, who, like Tiffany, has experience as an Occupational Therapist. Gretchen is also a top producing realtor in the St. Louis area who founded Empowered Homes to fill the gap in real estate services for people with disabilities and adults who wish to age in place. Together Tiffany and Gretchen have launched Custom Joy with a mission to "Build Thoughtful Spaces And Joyful Places For All." Tiffany has an exciting story to share about the creation of Blue Day 2 and taking it to the next level with Custom Joy. For those of you who thought accessibility necessitated the sacrifice of tasteful design, comfort and beauty, fasten your seatbelts...because you are about to discover a whole new world of possibility, where "Thoughtful Spaces And Joyful Places" also offer beauty and access to everyone!Support the showThank you for listening to our podcast and for your continued support! We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews. If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

Moving out of a family home is one of life's "exciting, sad, happy, and scary" events. There are so many changes that come with having a place of your own. But...there is also growth and independence. There are new things to discover and experience - for parent care providers and for the young adult who is spreading their wings. Todays story is about Will McAllister and his transition to his own apartment and a new independent life! It is also a story about parental faith and steadfast love in the ability of their son to adapt and blossom in the world. So join us on our magical journey into the mysterious realm of living independently and all the exciting opportunities that it brings Support the showThank you for listening to our podcast and for your continued support! We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews. If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

We all have two basic needs as human beings.  One is to be authentic, to live our lives in a manner that reflects our true selves.   The other human need is to be accepted within a community.  When these two need conflict, when the community to which we belong does not accept our authentic self, the most common reaction is to "mask" that part of our identity that puts us at risk of being excluded from our association with other community members.  The MDRC mission is to "... cultivate disability pride and strengthen the disability movement by recognizing disability as a natural and beautiful part of human diversity while collaborating to dismantle all forms of oppression."  And while it is not possible for MDRC, or any advocacy organization, to reform the entire world,  they are committed to creating a space for self-discovery, to cultivate community, and to develop pride.  And they have developed an admirable track record in doing so.  Support the showThank you for listening to our podcast and for your continued support! We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews. If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

Many people seem to have a "problematic" relationship with sleep.  We take medications to keep us awake...and we take medications to make us sleep.  But sleep...a GOOD night's sleep, is essential to our psychological and physical  health.  Autism is one of those disabilities that can manifest itself in a broad spectrum of sensory issues...and often the ability to sleep through the night is seriously affected.   Most of us know what it feels like to suffer from sleep deprivation, because if a child is not able to sleep, the odds are that neither are their parents.  zPods® is a company dedicated to creating a solution for this problem.  Co-founder George Bailey explains how zPods® create a calming, comfortable and safe space designed for better sleep.To learn more about zPods® be sure to stop by their websiteSupport the showThank you for listening to our podcast and for your continued support! We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews. If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

Individuals with intellectual and/or developmental disabilities (I/DD) and their families often find themselves dealing with complexity and even intentional obfuscation as they navigate the path of Medicaid eligibility and benefits That is why we find it exhilarating when along that path we find individuals with expertise and empathy. I have discovered both those qualities in Marianne Huff. Although Marianne's highest level of expertise is in the mental health arena...the rules governing Medicaid are, with just a few exceptions, the same we deal with in the I/DD world. I have known Marianne for several years. About 5 years ago she provided invaluable information when we found ourselves in a benefit eligibility dispute with our local Community Mental Health organization and were anxiously facing an appeal before an Administrative Judge. Marianne's advice and guidance resulted in a positive outcome for our son Lliam. I believe you will find this episode enlightening and come to realize we also have allies and advocates within the community of professionals working MHAM. They Listen and they Care!Support the showThank you for listening to our podcast and for your continued support! We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews. If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

"The best laid plans of mice and men often go awry!" is an old and unfortunately true statement. And "best laid plans" often "go awry" for two reasons. 1) poor planning...or no planning, and 2) people don't work collaboratively to create solutions that work for all concerned. Both are a result of human error. And both are avoidable. But we all know that within families and friends differing points of view on how to solve a problem can wreck havoc on the best relationships. And that is most unfortunate, because it is different points of view that often help create the best plans. But that rarely happens without deliberate effort. And when it does happen it is cause for celebration! So...how do you plan for the future anticipating the kerfuflfes that are likely to ocurr? One way is to work with an experienced and compassionate attorney. Someone who knows the "ins and outs" of disability planning and is sensitive to your needs. The other is through a trusted 3rd party who can "step into the gap" before a conflict arises and empower individuals to recognize and solve conflict before it sinks the ship! We hope you enjoy today's episode about creating collaborative trusts as much as we enjoyed creating it for you! Support the showThank you for listening to our podcast and for your continued support! We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews. If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

Voting is a constitutional right for an overwhelming majority of Americans, but the reality is people with disabilities, racial minorities and economically challenged individuals face far more obstacles to voting than most voters.  Unsubstantiated allegations of mass voter fraud were circulated and amplified after the 2020 presidential election and conspiratorial politicians laid plans for another, more devastating voter fraud scheme.... to suppress voting by mail and drop box through heightened scrutiny, including picture ID voter verification.  These extra requirements on top of the transportation and accessibility challenges already faced by individuals with disabilities have caused tens of thousand of ballots to be disqualified in Texas primary elections held in anticipation of the 2020 midterm elections.  The voter suppression laws sought by many states are nearly identical in nature and very similar to the "Secure the Vote" ballot initiative that was being circulated in Michigan.  Voting is a constitutional right!  No one should ever have to endure an obstacle course challenge to obtain and cast a ballot in America.Support the showThank you for listening to our podcast and for your continued support! We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews. If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

In this new book, Tracee offers you the tips she remembers, stories of adversity and success, to document her personal battles with self and others in a position to grant or deny life-saving tools, equipment, and the access to freedom we all hold dear but often take for granted. The author encourages all of us to use the Field Notes daily to meet success and navigate each one of life’s seemingly impossible hurdles. Topics in the book include: employment, mental health, education, family, physical health, travel, recreation, emergency preparedness, housing, and more, throughout the lens of that elephant in the room, the things no one addresses as you live a life because we to are trying to figure it all out and many of us keep the cliff notes to ourselves. How will you do any of this despite disability? It won’t be easy, but you’ll make it. Who is this book for? Anyone who could use some encouragement and real, candid talk about live with disability. Use this book to start to answering all those things that worry us but we don’t want to confront. Make a plan with this book for long-term challenges and navigating the “No’s” in life. Find what you need that no one wants to tell you, with a special section called The Parent to Disabled Child Manifesto. This book is for us all but especially anyone working with and/or raising children and young adults with disabilities, direct support, self advocates, special needs teachers, and the practitioners, caregivers, uncles/aunts and any member of society still ignorant in their thinking about the contributions and capabilities of Americans with disabilities. Sound advice through personal experience can make all the difference in the world.Support the showThank you for listening to our podcast and for your continued support! We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews. If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

If you set out to climb the Himalayas it would be wise to hire a sherpa. Why, you ask? Because the climb may be treacherous and your mistakes very costly! A sherpa has been on the path many times and knows how to climb to the top with positive results. How much do you want to leave to chance? The same may be said about navigating the challenges and obstacles ever present for people with disabilities. Legal planning, financial planning, benefits planning, educational programs, work incentives (and disincentives), IEPs, Person Centered Planning, Medicaid Waivers, Social Security Disability, affordable and accessible housing, transportation.... All these added together make that Himalayan climb look like a walk in the park! If you need help, you may find Vitalxchange is the answer...or your sherpa! Vitalxchange has created a world where parents and providers caring for special needs children can partner to help children thrive.Support the showThank you for listening to our podcast and for your continued support! We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews. If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

There is a gulf between changing a world and changing THE world, and the difference is the people who help build the steam needed to bring about true and lasting change to the way a society approaches a topic.Earlier this season we discussed the life and advocacy of Bill Rush and some of the people around him on his quest for a life on his terms. We had a chance in the followup to talk with a contemporary of his, John McGill, who offered insight into the changing of the disability landscape on a local level - attending university.Support the showThank you for listening to our podcast and for your continued support! We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews. If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

Affordable, accessible housing, transportation and internet availability are serious issues for people with disabilities in just about every state in the USA.  It is especially problematic in rural areas.  As if these challenges weren't enough, the crew of the Disability Resource Network in Huntsville Alabama opened for business during the early days of the COVID-19 pandemic.  For some, quarantine and social distancing would have been the straw that broke the poor camel's back.  For Davina Patterson, Katie Toro and Deshon Washington it was just another bump in the road to success.  This "new kid on the block" Center for Independent Living was strong out of the gate.  They leveraged technology in the best way they could and partnered with other local and regional non-profits to create awareness of the services they provide. And Davina, Katie and Deshon have exhibited a contagious enthusiasm and optimism...all IN SPITE of these challenges.  Or maybe we should say BECAUSE of the challenges they face!  We are proud to bring you their story!If you'd like to know more about this episodes guests, please check out their website HERE! Support the showThank you for listening to our podcast and for your continued support! We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews. If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

Imagine engaging an architect to create plans for the perfect house to fill all your needs.... You are excited about turning this dream into a reality…but then discovering there is no one to do the excavation for the foundation. Also, there is only one carpenter to work on the frame...and that craftsman can only work 12 hours a week on your project. There is a shortage of plumbers...so you will have to make do with an outhouse until one is available. And an electrician? Sorry...only one is available, and she can work on your house for only a few hours a week. How will your house ever get built? But wait! It gets worse! You see, in the previous example we are merely talking about inconveniences affecting a construction project. The worst case is...you cannot move to your dream house anytime soon. But what if instead of a carpenter, an excavator a plumber and electrician we are talking about Direct Service Professionals needed to help you get out of bed in the morning because your disability prevents you from doing so yourself? What if there is no DSP to help you bathe, dress, or transport you to work? What if there is no one available to help you into bed tonight? Now "inconvenience" becomes "existential,” and you are faced with a huge obstacle to…just living! This is where hundreds of thousands of Americans living with disability find themselves today. They are in desperate need of help, and there is an extreme shortage of individuals trained and qualified to provide that assistance. Our conversation today is with Joseph MacBeth President and CEO of the National Alliance of Direct Service Professionals (NADSP). Joe has worked in the field of intellectual and developmental disabilities since 1983 – beginning as a Direct Support Professional. We will hear what his organization is doing on the state and national scene to help alleviate the DSP Crisis.Support the showThank you for listening to our podcast and for your continued support! We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews. If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

Episode 3 - Life together and Changing the WorldMost movements for social change are identified with a few prominent and well-known leaders.  For instance, people like Martin Luther King, John F Kennedy, and Robert Kennedy, among others, are associated with the Civil Rights movement in the USA. Nelson Mandela is a name synonymous with the abolition of apartheid in South Africa.  The truth is…these individuals provided a voice and a face to the movement, but without the thousands who heard them and actively responded to their cries for equality and equity for all human beings, nothing would have been accomplished. Largely unknown are the names of those individuals who actually brought about change by their activism and advocacy.William Rush (Bill) is one of those committed individuals who responded to the call of equality and equity for all who live with disabilities.  Bill was never satisfied to just obtain the assistance he needed personally to live independently and move about the community without obstacles blocking his participation.  He had a strong motivation to change the world for all those living with disabilities “in a world not made for them.”  The story of Bill and Christine is told in their book Our Life Our Way.  The following three podcast episodes draw on the experiences and advocacy skills developed by Bill and Chris as they fought for a life together in a world filled with physical and societal challenges unique to the disabled.  Bill and Chris have much to teach all of us! We hope their story and their struggles both motivate and support you in your own journey for inclusion.Support the showThank you for listening to our podcast and for your continued support! We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews. If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

Episode 2 - Love and the Audacity of Change Most movements for social change are identified with a few prominent and well-known leaders.  For instance, people like Martin Luther King, John F Kennedy, and Robert Kennedy, among others, are associated with the Civil Rights movement in the USA. Nelson Mandela is a name synonymous with the abolition of apartheid in South Africa.  The truth is…these individuals provided a voice and a face to the movement, but without the thousands who heard them and actively responded to their cries for equality and equity for all human beings, nothing would have been accomplished. Largely unknown are the names of those individuals who actually brought about change by their activism and advocacy.William Rush (Bill) is one of those committed individuals who responded to the call of equality and equity for all who live with disabilities.  Bill was never satisfied to just obtain the assistance he needed personally to live independently and move about the community without obstacles blocking his participation.  He had a strong motivation to change the world for all those living with disabilities “in a world not made for them.”  The story of Bill and Christine is told in their book Our Life Our Way.  The following three podcast episodes draw on the experiences and advocacy skills developed by Bill and Chris as they fought for a life together in a world filled with physical and societal challenges unique to the disabled.  Bill and Chris have much to teach all of us! We hope their story and their struggles both motivate and support you in your own journey for inclusion.Support the showThank you for listening to our podcast and for your continued support! We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews. If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!