Building S.A.F.E.R. Lifestyles: A Vision for Severe Autism Families

I'm developing a social equity project called S.A.F.E.R. Lifestyles, designed to create communities for families dealing with severe autism. My vision addresses how most of us lack support, with villages abandoning us when we need them most.



Contact us at contact.parentingsevereautism@gmail.com if you'd like to learn more or support the S.A.F.E.R. Lifestyles movement.

Chapters

• 0:18 Welcome and Project Introduction
• 4:31 The Vision for Safer Lifestyles
• 7:01 Combining Three Proven Care Models
• 10:05 The Reality of Caregiver Sacrifice
• 13:12 Sustainable Community Model and Funding
• 16:08 Restoring Caregiver Skills and Purpose

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. Today I want to tell you what I've been up to behind the scenes in the hopes of improving the lives of people in our boat, and I'm going to share the audio version with you here. I know I've kind of warned you about it a little bit here and there.

Speaker 1: 0:39

I've been working on a project. I guess it's called a social equity project of sorts. I guess Please forgive me if that's not right it's not really my field of expertise, but I know I see my vision and that I'm just working on my vision. I just want to preface it with I know this is not the best idea for everybody, but I am looking at providing either permanent or part-time opportunities for families to enjoy what I'm trying to put together. And it's just that most of us feel that we don't have anyone in our corner. We feel that we really do need a village to raise a child and our village has abandoned us and the only people we really connect with are other parents in our boat. So with that in mind, I am working on a project. I'm working on fiscal sponsorship and funding, and I'm working on all of these things to try to make my vision a reality in one or more places around the United States. So please just take what resonates and leave the rest behind. If it's not for you, I totally understand. I'm not asking you to do anything about it. I'm just sharing my vision with you and I'm asking philanthropists etc. To help me with it. I don't want anything from you or your families. You have enough to worry about. I'm not asking you to do anything. Okay, I just want to share this with you because, even though we haven't met, you're always on my mind because you're in my boat, you're listening to my podcasts and I know that a lot of people have found my podcast to be helpful, so I just want to share this with you.

Speaker 1: 2:17

I've been kind of leading up to it on social media, trying to you know, stir the pot, start some controversy, and I've done really well. You know, stir the pot, start some controversy, and I've done really well. One of my posts is very has upset a lot of people, but it's also drawn a lot of parents like us out of the woodwork. I have had an outpouring of gratitude and such support from parents, very intelligent men and women on TikTok, which I really didn't expect. I don't know. I've always been under the impression that TikTok was like a kid's platform and there was a bunch of stupid stuff on there. But I put out one video, kind of about what I'm working on and it's just been amazing. I actually had one person tell me that she would like to adopt my kid because she thinks I hate him and that way I could go work on the corner like I want to. So I have been called a whore simply for highlighting the difference between the high-functioning, so-called actually autistic communities and our kids. So I mean, it's not all been nice. I don't know. I was really surprised that she took it there right away, like it just went right from I see your video to 'go work on the street corner'. You know, we didn't have a back and forth or anything, so it hasn't all been good, but the majority of responses have been really good and I've got a lot of support and I've found a lot more families than I realized were out there suffering the same way that we are.

Speaker 1: 3:42

I don't have a lot of subscribers to my podcast because it is a niche thing, but I don't know, I'm really surprised. I've got thousands and thousands of families out there, as far as I could tell, that are in our same boat. So I just wanted you to know that too, and I hope that you'll have a listen. I hope that if it sparks your interest, you'll email me and let me know, and I hope that if you have any suggestions for adding on to my vision, that you would email me and let me know, because it's a vision in progress and I think that it should represent the needs of all who would be able to enjoy it, whether on a permanent or part-time basis. So with that, please enjoy the following 12-minute presentation.

Speaker 1: 4:31

Hi, I'm Shannon Chamberlin. I'm a parent and unpaid caregiver of an adult child with profound autism, and I'm the founder of Safer Lifestyles - Severe Autism Families Educational and Recreational Lifestyles; a movement to create safer communities for individuals suffering from severe autism and for the caregivers who love them. I'm also the host of the Parenting Severe Autism podcast, where I give voice to what families like mine are really going through, from early childhood to adulthood and beyond. The Safer Lifestyles Movement is the next step in that mission because, after years of surviving in a system that was never built for us. I know it's time to build something better.

Speaker 1: 5:16

You know that glossy, feel-good version of autism that's all over social media. That's not our reality. That's a cover story. While the world is out there celebrating quirky brilliance, families like mine are fighting daily, invisible battles with profound autism. You know that popular narrative is palatable but painfully incomplete. It hides the truth of severe autism what thousands of families live with behind closed doors every day.

Speaker 1: 5:46

Our children are non-verbal and developmentally disabled. They can't even tell us when they're mistreated. We have to be hypervigilant for every aspect of their lives. In schools, our children are often met with abuse, neglect and forced conformity, instead of just receiving understanding and individualized care. Most are denied appropriate education and desperately needed therapies because they cannot adjust to the timeline that's set out in the system. It's a harsh reality that our children are frequently banned from public schools, therapy group homes and programs. They have nothing. There's no wiggle room for our kids, there's no soft landing. So the public resources, even in schools, barely address their complex sensory, behavioral and cognitive needs. And now, with group homes closing across the country for years, families are left with no long-term care options, just trapped in a system that was never built for them in the first place.

Speaker 1: 6:54

So, with Safer Lifestyles, we are combining the best of three proven care models to create one life-changing solution for families like mine. For families like mine, we start with Montessori Education Principles, which will bring both the structure and the freedom that our kids desperately need. It honors individual learning styles while building emotional safety and trust. It's a far cry from the abuse and neglect and forced conformity that our children are subjected to right now, only to be kicked out if they don't conform or if their parents are too hypervigilant. We also incorporate permaculture principles to design sustainable healing environments where everything works in harmony Our land, our spaces, our rhythms. You have heard of other, more health-minded countries recommending forest bathing, for instance, to help with mental health. Yes, so we'll combine those two principles with the assisted living model, long-term planning and the dignity of knowing our loved ones are safe now and in the future. When you put these together, along with purposeful recreation and caregiver relief, you don't just build a place, you build a new lifestyle, a system that helps families live longer, healthier, more connected lives together with the people in the same boat, rather than being sparsely sprinkled throughout the population with no support.

Speaker 1: 8:27

And the truth is this isn't rare. According to the CDC's 2023 report, over one in four children with autism that's 26.7% have profound autism. That means children who will likely need 24-7 care for the rest of their lives. The prevalence is 4.6 per 1,000 eight-year-olds. That means there are tens of thousands of families living this nightmare across the country right now, and behind every one of those children is a caregiver. There are more than 48 million unpaid caregivers in this country. Nearly 10% of them are raising children with special needs.

Speaker 1: 9:11

And we're not just parents. We are full-time nurses, therapists, bodyguards, advocates, teachers and crisis responders, often all at once. And we're doing it alone With the Safer Lifestyles Movement. These families are not customers. They're not a market to be sold to. They are the most invisible, underserved population in the disability space, and that makes them not just our priority but our purpose. The numbers tell the story. This isn't rare. This isn't niche.

Speaker 1: 9:46

As caregivers, many of us have been forced to give up lucrative careers. We're losing an estimated $300,000 per caregiver per year because we have educations and we had chosen fields of expertise and we were doing great, but we have to give it all up the support systems that we need. The group homes closed it all up. The support systems that we need, the group homes closed. Special education systems are underfunded, understaffed and often harmful to our children. Up to 94% of families raising profoundly autistic children report severe isolation, stress and caregiver burnout. These are not fringe cases. These are families living in silence, doing the impossible every single day. They're superheroes, and they've been left behind for far too long.

Speaker 1: 10:36

So, with Safer Lifestyles, we're building a community-based model of care, one that doesn't try to fit families like mine into broken systems. Our strategy starts with acquiring profitable turnkey campground properties, sites that already generate income from public reservations and recreational offerings. What makes this powerful is the land. We're specifically targeting properties with extra undeveloped acreage. It's land that we can transform into a separate autism-friendly environment. We need more of those.

Speaker 1: 11:09

This is a lifestyle for us. We don't get vacations, we don't get to leave, we don't become empty nesters. This is a life sentence for all of us. We deserve this. We need it to be there for our children. These autism-centered zones will be private, they'll be peaceful and they'll be protected, designed from the ground up for individuals with profound autism and the caregivers who love them. In these spaces, we'll offer inclusive education and therapy options, reliable and trustworthy respite care for caregivers to prevent caregiver burnout, and trustworthy respite care for caregivers to prevent caregiver burnout. Recreational programming that brings joy and structure to daily life and, most importantly, safe long-term residential solutions. You have to remember, not only do our children need that, but the caregivers as well.

Speaker 1: 12:01

We have been forced to give up our careers, which came with a retirement package or some sort of plan. We've lost everything. What are we supposed to do? What are we supposed to do? But here's what makes all of this different. Any teacher, aid or therapist who works in our community must be trained by the parents. If you have met one child with profound autism, you have met one child with profound autism. They cannot be treated exactly the same. Any professional who comes to work in our community must receive training from the parents, because no degree, no program and no policy can replace the lived experience of a caregiver parenting a profoundly autistic child 24-7. We are the experts and in this model, parents lead the culture of care. We are not just creating housing, we're creating healing, a place where families stop surviving and finally begin to feel safer. Our sustainability model is as intentional as our care philosophy Acquiring profitable turnkey campground operations with built-in income.

Speaker 1: 13:22

Many of these properties already generate income of $100,000 to $300,000 per season. We acquire that. We'll build the autism safe community on private acreage while expanding public offerings to include wellness services, specialty camp store products, hopefully made by our kiddos, allowing our children the opportunity to contribute to a community. We can also rent out unused therapy and recreational facilities. When therapy and recreational spaces are not being used by the autism community, we can generate income by renting those spaces out to the public or to practitioners. Every public dollar strengthens the private sanctuary. One side supports the world, the other side protects the families that we are here to serve. Our total startup estimate for our flagship location is $3.76 million $2.5 million for property acquisition, $1.26 million for infrastructure such as cabins or container home living spaces, a Montessori school and supplies, wellness spaces for therapy, zen gardens for the parents, sensory rooms as needed.

Speaker 1: 14:36

And we're committed to doing this without nickel and diming the families that we serve. And this is not a one-time ask. It's the beginning of a new way to live. What we're building doesn't just change outcomes for the child. It transforms the life of the caregiver, breathing new life into the caregiver.

Speaker 1: 14:54

Remember, most of us have given up our careers, our passions and our identities just to survive, just to keep our kids alive and functioning. But in this community, these caregivers won't be sidelined. They'll have the opportunity to reclaim their skills and put them to work in ways that serve the village. Whatever career they had to give up, whatever skills they had to forget about and bury, they can resurrect and contribute to the community that we build. Accountants, artists, massage therapists, yoga teachers, groundskeepers, carpenters, plumbers, parents thriving on socialization can run the camp store, organize the food co-op and the community gardening, supervise canning, if they know how to do that. Help us create things to sell at the camp store. Leading programs that we have. These are not small perks. These are mental health interventions. When a caregiver feels seen and useful, their stress levels drop, their energy returns and their ability to care expands. This isn't just relief, it's restoration and it is the foundation of sustainable care.

Speaker 1: 16:08

We have spent too long waiting for systems to change. Families like mine cannot wait any longer. So we're building something real. Join us in building a safer lifestyle for the future Severe Autism Families, educational, recreational Lifestyle. We are seeking funding, we are seeking partnerships, we are seeking strategic community support. If this mission moves, you don't just admire it. Stand with us, fund with us, build with us. Contact us at contactparentingsevereautism at gmailcom. Thank you For all you caregivers watching this. Hang in there. You're a superhero.