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From Autism Parenting to Advocacy: Honey Rinnicella on MAPS and A Place To Breathe · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey, everyone. Welcome back to such an exciting episode of the In Stones podcast. It is such an honor to introduce today's guest, Honey Renicella. If you don't know her, gosh, buckle up, because you are going to be hearing more and more. This woman is not only has been doing the work and setting the foundation for women mothers and advocates like myself for years, but she is on fire for this community. Honey is the executive director of maps, the Medical Academy of Pediatric Special Needs, a national organization dedicated to training physicians helping better understand all the complex medical needs of children and adults with autism. She has two sons of her own with profound autism. So her work is so deeply rooted, like mine is, in this lived experience. Years of searching those hard questions and really, like most of us, refusing to accept that there's nothing more that can be done. And that journey, I believe, has not only made her such a force to be reckoned with and a leader within our community, but an advocate for families, like all of us, that are navigating every single day the most complex forms of autism. And she's expanding her work through her position on the IACC board and even through her most newest adventures, A Place to Breathe, which is going to be a new space in New Jersey and designed to support and sustain caregivers and recognizing all the work that it takes to advocate for our children. Honey, welcome to the Inchtones podcast.
• 1:35
  Speaker B: I'm so happy to be here. What a wonderful, warm welcome that was. That's insane. I'm, like, flat.
• 1:42
  Speaker A: What does it make you feel when you think about the last 20 years of your life as a woman and mother and you hear of what you've built and sustained and grown and given to not only your children, but have expanded for mine and for families like mine. Where does that. What does that make you feel? Because all I said is a hundred percent true, if not exponentially even.
• 2:05
  Speaker B: Oh, my gosh, you're so sweet. Well, first, I hope. I always hope when I. When I hear that, it's all truth. Like, I have poured everything I have into my kids. But I always say this, you know, like my kids were drowning in a pool behind me, and I pulled the two of them out, and then there were, like, 40 kids still back there, so I couldn't just walk away. So I had to go back into the pool and keep like. And then it was like the pool just kept growing and growing and growing, and I felt like I just needed to get louder and louder and louder and the whole time, like, Mama Bear, you know, actually, my nickname's Honey badger. But like holding my kids really, really close to me and then like saving as many as I could along the way. I feel like that's always been my mindset. Like I used to want to be a missionary and I will never forget crying in church one day that I couldn't go away on this one trip in my church and the woman next to me stopped and she turned and looked at me and said, do you not understand? God made your mission field right here. Like right here, this is your world. And everything kind of changed that day. And I realized it is. This is where I just need to put my head down, listen really keenly of what I'm supposed to do. And you know, I wake up every day and I pray God put in front of me who and what I'm supposed to help with and protect me from who and what I'm supposed to be shielded from. Because my energy is so tapped. I should say. Like I have 25 year old twins with autism. You know, originally I had three kids under two, traveling husband, no family. It was literally just me and my energy that kept me going was, oh my gosh, there's so much we can do. And so I became like this, like come on guys, we can do this. And I became like the cheerleader of like my local community to help, you know, expand what we were all doing for our kids. Cause I feel like as a mom, when you get your head really strong and in the game, you surround yourself with people that are like minded and your game gets leveled higher and higher and you become more and more powerful.
• 3:56
  Speaker A: There's a reason it's called a vibe. You know, you and I are simpatico in that there's a depletion that can come alongside this. If you're not highly protective of the heart's alignment with the work that this that we are doing. Because to your point, there's a lot of negative. I don't want to say, I guess, I guess that's the right word, but non helpful energy that can align with this community. And I think that the protective nature of it is so divine in the feminine as mothers, specifically with children that we have.
• 4:24
  Speaker B: I agree 100% and I think that, you know, when, when we choose who to surround ourselves with. I realized for a long time I was hearing just all these horrible stories and I realized that, that I'm a burden carrier and it was just starting to like weigh me down and I almost had to put up a. I almost had to put up a. Okay, hold off. I. You Tell me a story. I'm going to tell you I'm sorry. And then I'm going to, I'm going to pray for you in that moment. Like, I never say I'm praying for someone unless like the minute I see it, I say, I will pray for you. I will quiet my mind and pray for them. But I needed to find the people that were like me, that were actually doing something because that didn't bog me down as much. It was like, okay, how are we going to help all those that can't help themselves? And so what can we do with our energy for those that can't find the energy? And, you know, so I felt like those became my people, right? The ones that kept me going stronger and that vibe just kept elevating. So, yeah, I love, I love everything about it. And it's so funny that I know you asked me to come on today to talk about a place to breathe and everything with maps and everything was spelling and everything with iacc, you know, I feel like everything has been my past 20 years of devoting myself, you know, as my mission field to this community is like been for this moment right now. When my kids were 22, you know, I was gonna retire and that's when they asked me to take over maps. And I was like, I mean, I was thinking of getting back in shape, but okay, I can do this for a couple more years. And then I jumped into maps, right? And then so everything that like the last 20 years has been built to this moment in time. And I just feel truly honored and blessed and I feel like I am ready for it. That has built me for what needs to happen in this next phase. And so what's really crazy, when you asked me to come on and talk about the farm, I was like, well, it's kind of funny because I'm slightly passing the ball to my husband, but because of everything that we've done the last 20 years is why that firearm ended up in my lap. And that property is amazing and it's a blessing. And so I do want to touch base about that because it's something that in 20 years of being in this field, you know, we, we get what needs to happen at the iacc, we get what needs to happen with maps and medical. But there's a little issue that I have always had close in my heart that I've wanted to create for families and kids with autism. And nobody's really talking about it. Everybody's looking at long term housing and everybody's looking at services right now and I'm looking at something completely different that I feel like our entire community is not aware of. So that's where a place to breathe comes in.
• 6:53
  Speaker A: Well, you know, when you just shared about your history and talking about everything's led to this place right now, I think one of the most beautiful byproducts of having children with autism is, is that they insist that you be where your feet are. And it is one of the most that I'm so like, I think is the greatest gift from God to be given Millie and Mac, because I am living the power of now. And so to your point, what you're saying is like, everything keeps leading to what this present moment is, and everything that has led you to this moment was also the present moment that led you to be able to do it. And it's is what every major philosophy religion of the world talks about as being the greatest. So it's again, it's just so cool to hear your story because I think it just resonates with and gives mothers that are at the beginning of the journey, those of us that are, you know, kind of in the messy middle and those are, that are further along that like the place that you're in right now is the right one. And if you just stay attuned to that, it is going to keep going, allow you to keep evolving, but you have to keep moving through it. And I think that's what you're, that's what you're hitting on so beautifully, is that you thought it was going to be done per se, yet it just evolving and opening doors to where your present was meant to be.
• 8:04
  Speaker B: Right. I feel like everything that I thought that I'd done, I'm like, okay, did this, did this, did this, did you know, everything that I'd done, I'm like, done. I'm going to sit back, breathe and enjoy my kids. And then it was almost like God was like, oh, yeah, no, that was just, that was just laying the groundwork. And now. Now, let's go. It was, it was so now. Okay. Yeah. So Maps, we're the only organization in the country that trains physicians and healthcare practitioners on how to properly care for and treat comple, medical issues, autism, any kind of special needs. We are essentially like the, you know, I always say we're house doctors. I don't know if you've ever seen the TV show House, but I would say we're like house doctors, but really, really kind ones. So it's, it's like the St. Jude's of medical training. If you will. Right. So we know a lot of our kids with autism especially, that's what drew me into this, have a lot of metabolic pathways that were completely different than a lot of our typical kids. I mean, we know this Down's children as well. We know this with a lot of our C kids. There are a lot of medical comorbidities and nobody's really looking at that within the special needs community except for us. So Maps has been around since 2014. It essentially evolved from something called defeat Autism now. But that was Dan was only autism. And it was like medical professionals and parents coming together to figure it out. So MAPS kind of evolved afterwards because we realized it's not just autism, right? We got Pans, we got cp, we got Down's kids, we got all these medical issues. Allergies, asthma, adhd. I mean, the numbers are growing. It's. So it's not just autism, but it's also not just needs. Right? So we're infancy through adulthood. So we're pediatrics and special needs because we know these kids don't grow out of this. A lot of our kids, when they turn 18, 21, that's when sometimes a lot of them start getting into like really big issues like catatonia. We, we get into like seizures. Like there's a lot that's happening to our kids with profound needs. Now, I like to say profound needs because the needs are severe. And so, you know, we are the only ones though that incorporate like the deep root cause medicine, scope of care, encompassing pediatrics. So that's what makes us different than any other organization in the country. We have an entire fellowship program, we have two medical conferences a year. They are cme, so they're for anybody who is in the field that wants to help these children. It's under Dr. James Neuenschwander as our president. We have an incredible board. Dr. Neuenschwander, Dr. Elizabeth Mumper, pediatrician, very well known in the community. Dr. Nancy O', Hara, very well known in Connecticut for Panspandas. She fully recovered. My partner's child I had Dr. Anju Usman Singh. She is my kid's pediatrician or my kid's main, main doctor Maps doctor. And she has, she's a general practitioner and she has saved my kid's life multiple times. He had life threatening seizures, no longer has them. All kudos to her. And we have Dr. John Gaetanis, who was chief of neurology at Tufts and director of neurology at Brown. And so that's our medical board Member. Those five brilliant humans are reshaping what healthcare needs to look like for this community because they've seen the lived experience. Right. So I am just honored to be the executive director. We do two conferences a year and I used to throw the National Autism Conference and parent conferences. And when I walked away to take over maps, I thought someone would pick that ball up. They didn't. So this past, this past spring in March, we actually did our first ever. We tagged on at the end, a parent arm. And we want to educate the parents on whatever the professionals are learning. Let's empower those parents to know the same, you know, insight so when they work with their physician, they can run harder and faster and understand what they're saying.
• 11:35
  Speaker A: That's what I was going to say. Like, what does that actually, you know, MAPS is like you said, rooted in this, like root cause medicine. What does that look like for someone earlier on that family walking? That is the ones that come to me that hit my DMs are like exhausted, so overwhelmed, can't see even to the next day that are, you know, maybe even years in and are still hanging on by a thread. Like, what, what can they take away from maps? Like, I guess what you're saying is that add on portion of the parent. The parent side of it.
• 12:03
  Speaker B: Yeah, absolutely. So. Well, first of all, we have a great website. It's www.medmaps.org. and on our website there's a, there's a dropdown that you can go on and it's for parents. We have a clinician directory. I believe all of these kids. You know, one thing I really want to work on at the IACC is ensuring that these kids have proper scope of care. Right. So when you get the diagnosis of autism, you should have, you know, a checklist of 10 things every pediatrician should be knocking off. Okay. Let's look at their gut, let's look at their neurological pathways, let's look at their allergies. Let's look at everything. Right? Yes. Yeah. Like, are the behaviors telling you that they're in chronic GI pain?
• 12:38
  Speaker A: That's right.
• 12:39
  Speaker B: So the, the recent, you know, conference that we just did a couple of weeks ago showed me that we need to help parents a little bit more with this. So we're going to be incorporating a lot more on our website for parents. Now we are a physician's organization, so and a health care practitioner, nurses nurse practitioner, you know, they're all welcome to come, but we are going to start supporting the parents more. So I have a great plan of what we're going to do. So I would just encourage parents to stay on when they sign up to get our notifications. We put them in and they say they're a parent. We put them in the parent arm and, you know, we'll be letting everybody know. But I plan to have conferences at every event. And so what we do is the night before, I always tell parents, find your like three biggest issues. And we have roundtables, we have roundtables for pans, roundtables for gi, roundtables for diet, roundtables for, you know, we're all medical based, right? So we have all these roundtables and you can sit with an expert and ask them questions, hear about seizures, hear about cerebral folate deficiency, hear about mitochondrial dysfunction, anything that they need to hear. And that's like an open forum that we've always done at my parent conferences. And we're doing that now at Maps. And then the next day we're doing a full day. Whatever the parents are going to be learning, we're going to translate it into what the parent, I mean, whatever the physicians are going to be learning. Excuse me, we're going to transform it into whatever the parents need to hear that they're learning too. So we're going to take the same content, we're going to simplify it and put that same mindset. We always have a plenary, like we have a plenary on mold, we have a plenary online, we have a plenary on pandas. We just did one on toxins. You know, last fall we did genetics. This one's going to be redefining autism, but it's really defining autism. Right. So what do we know internally about these kids that have autism? What are we looking at from a medical perspective and what can we do to lessen the severity by addressing those medical issues? So when parents come to one of our conferences, they're going to hear what basically the doctors that are fresh to this are going to hear as well, but in obviously a parent form.
• 14:32
  Speaker A: Well, I think, you know, what I know about the environment is that the system right now doesn't reward parents who take in and really have a critical and deeply logical understanding of their child. Like the current system doesn't reward that. And so that's what I'm hoping, that those that come to learn more about MAPS and what they can learn from maps is that to take back the control of their environment, of the environment that is not suited for listening to them, listening to their maternal instinct and being able to focus on that full system of their children's body as data for. For them to translate to the physicians that they're working with. Because that's where I get really going about listening to mothers and, And. And caregivers. And it sounds like this is the exact way in which MAPS is supporting the parents to be able to do so, but brilliantly and critically and logically. Because as we all know, I mean, the, My. My listenership here is mostly young mothers and caregivers who are, again, our nervous systems are fried. Right. They're. They're. They're on the, on the daily. And so sometimes it's just taking a step back and going, let's get the critically logical points here. None of this is untrue, but we need to be able to learn it and to integrate it and to share it properly with those that are on your. You know, I don't say staff, but my staff. Well, that are my kids. So that you're. All that knowledge that they're learning, that they're learning at a MAPS conference, they can then integrate that in a way so that's actually movable for their children and moving forward.
• 16:04
  Speaker B: Yeah, I think it's critical because I know that. So I live outside of Pennsylvania. I mean, outside of Philadelphia in Pennsylvania. And, you know, I've worked with doctors at chop, at Penn, at Jefferson. I go to, you know, I went to the chief of neurology at AI dupont, and I had an amazing working relationship with them. It wasn't because. And my kids are medically complex. And, you know, we've been treated for pandas. We've gotten IVIG at dupont Hospital. We've, you know, had seizures. You know, we've done everything. And I've always had. My pediatrician locally was a CHOP pediatrician. Now my kids are 25, so they've kind of aged out of there. But here's the thing. Volunteering. I volunteered at MAPS when It formed in 2014, and I volunteered so I could hear what they were talking about in the room. That allowed me to be a stronger advocate for my child because I understood the why. It wasn't like I was going in and saying, my kid's taking, you know, five htp. It was like, hey, my kidney is five hydroxytryptophane, because it's a precursor to serotonin, and it's slowing down his anxiety. Like, I was able to speak the language because I was just. And I'm just a mom, but I was able to understand what the doctors were saying. And that's why I Was like, yeah, that's why I was like, let's take this and put this into a parent mindset and let the parents be empowered so they can have conversations with their physicians. Right. I mean, I invite.
• 17:28
  Speaker A: I mean, why do you think? Because I again, like, you know, it takes so much of this maternal ignition to go forth and learn this in a way to better understand your child and then ask for the right things. You know, what. What is it about right now that feels like parents can't have access to it? Is it just because we're finally starting to crack the code onto opening up and expanding the reason and the root cause of this finally, or are we just finally saying that, like this? The comorbidities and complexities are not going away. We have to get deeper. We have to, as parents, understand the complexity. Yeah, it can be really hard. And, you know, no mom, I always say, like, no mom at 29, woke up on the Upper west side of Manhattan going, yep, two kids with profound autism was on my bingo card. I was like, going to Reese in the West Village, like, get out of here. That again, it's all data. It's collecting for a betterment of your family. The way in which you guys are shaping this, I think allows for the better consumpt for parents to go, I get to do this. It's helping me go into environments that are not set up for my success, but I get to set up the terrain now, right? I get to see what the environment is, right?
• 18:37
  Speaker B: And so. So doctors, most doctors go into this because they have a heart to help, right? They don't go into this saying that they want to put parents down. They have a heart to help these children. And so what I always think is so crazy is that, you know, I always say to parents, I'm like, okay, you are the owner of your team, right? My. I have my twins with autism. I am the owner of. I am the owner. I choose one captain. That's my maps doctor. I choose one captain, and then I have co captains, right? I have my pediatrician, I have a neurologist, I have a GI specialist. But really, my captain is who's educating me, and I'm taking that information to my co captains, right? So I think that there's a lot of pushback. I have termed it innocent ignorance. I do not think a lot of these doctors have any ill intention.
• 19:21
  Speaker A: I agree.
• 19:22
  Speaker B: My pediatrician was amazing. All I had to do was the ones from Chop. She was amazing. All I would do is say, hey, this is what my captain right? She shared with me, this is what we're doing. These are the sodium channels that are addressing this, and this is why we're using this seizure med. And they would be like, makes total sense. They knew. I understand the why. I wasn't just taking supplements for my kids or prescriptions for my kids. It was, why am I doing this? I always feel like the why is critical, and then you can speak your truth. And then the doctors, when you speak it, well, I feel like they just understand it. We're not saying anything out of the ordinary.
• 19:55
  Speaker A: Totally. That's. I mean, that's why I've kind of been doing more with helping parents craft these parent statements in IEP rooms. Because it's actually not that the information is changing, it's just how you present it. Because when you actually know what you're talking about and what. How the environment works with the. Like you said, the different that, you know, the clinician, the case manager, the psychologist, the ot, all these people, it's not that the. It's not that the information is not there. It's that how it's presented in a way that makes you so locked and loaded as the commander and number one, you know, parent in chief of what's going on, because you can speak to it critically and logically and scientifically, and that. That creates an entire wave of actually getting your children what they deserve to receive, I think. But I think where parents get stuck a lot. And I'm just. I'm so thankful that there's so many different ways in which it's. We're coming at this from. From the. From the system, from the systems, whether it's the medical or educational or government, because it's really. It has to be tackled on all these different levels.
• 20:58
  Speaker B: I feel like the world's waking up. I feel like it's becoming more common. I think that people are. I. I'm so pleasantly surprised now. It used to be, like, 10 years ago, people were like, oh, you can't do anything for kids with autism. Now I'm running into people all the time. I just ran into somebody who lives in D.C. for World Autism Day, and there was a wonderful woman who worked within the government. She was in the military. And she said that her child was in a home and he was really severe. And she had said, hey, we just trialed Glucolorin. We had tried it with an integrative doctor many, many years ago, and it didn't work. She goes, but I tried it again after the announcement. And she goes, I'm so Excited because he's. What she shared with me was very personal. But he's making all these gains that she was like, I can't believe it's working now. And I'm like, might have all been the timing. You know, sometimes we have to revisit things. You probably needed to heal things prior and you know, I feel like everywhere I turn now, people know you can really do a lot internally for a child with autism. So our kids with the more profound especially.
• 21:55
  Speaker A: Yeah. But I think that we've gone from what I can imagine, what you've gone through 10, 12 years ahead of me is that it was this limited belief and like containment and now it's expansive belief and I think that that drastically changes. I really do. I'm a devout Catholic and I really do believe that the belief in what is possible to help and heal these kids actually matters in your, in ourselves. I really, I really do. I believe that part of that based on the expansion of what is possible.
• 22:26
  Speaker B: Yeah, definitely. I definitely see my kids healed. I see them, I'm like, I'm going to find answers. My non speaker Vincent from the movie Spellers, I know one day he's going to be able to just spell. He's just going to say whatever he wants in his mind. Looking at it, whatever, it's all going to get easier. I know it is. In my heart I know it's going to happen. So I see it, I always see it. And that's the positivity. I feel like if you bring the negative, like this isn't going to work. It's not going to work. If you bring the positive, it's going to work and if it doesn't, it's a step to show me what didn't. So I know what to do next.
• 22:53
  Speaker A: Right.
• 22:54
  Speaker B: So.
• 22:54
  Speaker A: So tell us about then going off that. Then tell us about a police to.
• 22:58
  Speaker B: Oh my gosh. Yeah. So actually I love that you said that. So I love that you. What you had mentioned when you said these parents like we have so we carry so much trauma. We carry. I mean there were days, sometimes I think it's inhumane of what I went through with three kids under two again, like by myself, no family. Like I was in three different schools. And sometimes I, I remember I would like drop my kids off in my pajamas and I'd be like, I just went through such a hard, hard phase. Right. So I'm, I feel blessed now I can shower.
• 23:29
  Speaker A: Yeah, I know. And, or just like I, I do look back and go, I mean I did survive that Like I, I know it sounds silly, but like I did wake up, like I did wake up the next day. It's, you never, you really don't believe in the power of your own self to keep moving. While that trauma is sort of compounding, you still did wake up and keep moving. It is, it is not, it is no small feat.
• 23:49
  Speaker B: So I think, I think that sometimes we agree like, and I, I, I agree a hundred percent with what you're saying. So sometimes I feel like we wake up and we just do, right? We just get up, we do, we do whatever we have to do. We, you have to do. If your house is on fire, you're going to get your kids out of the fire. I mean, and that's what we live in all the time with our kids. So fast forward to a place to breathe and we'll do this really briefly. But so because of my advocacy work, I was fortunate enough I supported primarily Pennsylvania, but New Jersey as well. New Jersey and Pennsylvania and Delaware were like my tri state area, right? That was the, those were my people. And I had just as many people in Jersey that I did in Pennsylvania. We threw our meetings, I had monthly meetings and I threw the conference in Pennsylvania. So we were closer to Jersey for a lot of the people as well. Um, there was a woman in New Jersey who had passed away, who had autism and she had an 18 acre property. Um, I was fortunate enough to be contacted because somebody I had helped and supported in New Jersey was like the farm property said that the trust said it had to go to a person that would do good for autism. So the community went to this woman and said, you have to give that to honey. She's the only one that will do right by this community. And what was so funny though, I have to just tell you, Sarah, So I am born and raised in Vermont, right? And so I would take my kids home all the time. And I'm just gonna tell you two really critical things and really important for our, our community. And I think this is the guts of the, this whole point of you and I talking. I would go home to Vermont to visit my family and I would have all these friends that would take my kids like for four wheeler rides and like, you know, they could skidoo and they could go sledding and they could, they could breathe, right? They could breathe. And when my kids turned 21 and we were faded away from like school, my dream was to buy a house in Vermont. Just a small house, like a little piece of property with a small house but a Lot of land. And I wanted to give these kids a place to breathe. That everything that my kids were able to experience, I could let other kids with autism experience, because most of them, yeah, we can't afford. I mean, my family and I didn't take vacations for years unless people gave us their houses to let us, because we used all our money in therapies and, you know, food, you know, so when I had that, that was my mission. I was gonna create a safe place to breathe, and I was gonna allow it to be a place where parents could come and heal as well, to kind of just step away from the trauma. Because when I drive over the border into Vermont, the cortisol level in my body just decreases. You cannot help but be surrounded by God's country and these trees and the energy in, like, the outside and what the actual, you know, earth can do for us is monumental grounding.
• 26:23
  Speaker A: But, like, it truly is, like, it is grounding, like, to be.
• 26:28
  Speaker B: Even if we don't know. Even if we don't know, like, just driving it.
• 26:32
  Speaker A: It still is there.
• 26:32
  Speaker B: Driving through, like, I mean, that's where in Vermont, like, our population would double. It would double in, like, spring and fall because it was so beautiful. Like, the leaf peepers. It's, like, a high to be around that much nature and. And beauty, right? So what happened was I had planned on that, and then this Jersey thing popped up, and I literally was like, I don't want to go to Jersey. Like, like, why would I go to Jersey? I'm like, look at me now. No offense. I'm like, but I agree.
• 26:57
  Speaker A: I. I know.
• 26:59
  Speaker B: So I was like, I. I'm gonna do that in Vermont. And then, literally, I was just gonna buy a little piece of land in a small house and let parents come breathe and kids come breathe. And the thing that's really important to notice is that I don't know if you know what this is, but there's something called fresh air kids. And so my mom and dad are New Yorkers, and my mom and dad are born and raised in New York City, and they moved to Vermont to raise their six children. I was born and raised in Vermont. I was the last one. I was actually born there, but none of my other siblings were. And people in Vermont would take fresh air kids. There's a program where kids that are from the inner city would go out to experience what it was like to be in the wilderness and the woods and just be in the country just for a little bit, and they would get the fresh air and essentially in my mind, I was like, I'm going to create that for our kids with autism. They need a place where their bodies can just decompress. The parents need a place where their bodies can just decompress. I want them all to feel like they can breathe. And so I was going to create that. And so with the mindset of, like, the fresh air kids and with what my kids experienced, myself. And so when I. When I went to look at this property in New Jersey, I'm like, well, I'll just go look at it. I literally. It's 18 acres, and it backs up to a 450 acre park.
• 28:09
  Speaker A: Yeah.
• 28:09
  Speaker B: When I drove in there, I felt like I was in Vermont. It was the exact same feeling, the exact same vibe.
• 28:14
  Speaker A: And I knew, don't sleep on central New Jersey.
• 28:17
  Speaker B: I am like, it was so beautiful that I was like, my gosh, like, there was a tree. It was so majestic. It was the biggest tree I'd ever seen in my life. I like, it was just. I just felt beautiful. My twins were with me. I let them see it and feel it, and it was just majestic. And I realized this was God saying, vermont's too far. This is two hours from your house. You can do this. All my neighbors have shore houses. I don't want a shore house. I want a place for our kids to have a community to breathe. And what I realized because. So I created a nonprofit because I had to land into a nonprofit. So my family had started a nonprofit back in the day called the vnb, the VNB foundation for Victor and Vincent. Because I do all this stuff. And we were like, his family, my husband's family was like, well, we'd love to donate. We could help you. And we never pulled the trigger. We had set it all up. But then when this property came to fruition, we were like, okay, let's pull the trigger. Let's get this going so we can start helping others in the community. Things in which we know that they need based on my voice. So real quickly, what I'll share is that. So when, you know, I went and saw this property, everything that I saw missing for the last 20 years was here. I was like, this is the place to breathe. This is the fresh air. Kids. I've always said everybody's looking to residential, but nobody is really looking at what are we doing right now. Like, my daughter had, you know, something called Rufus. It was like Reformed University Fellowship. It was like a church group at her school when she went to Pitt. You know, all our kids have fraternities and sororities, and we have music clubs. And, you know, kids in high school have clubs. And, you know, even our adults. My dad was a vet. He was a veteran. You know, they have the Lions Club and the American Legion, and my mom has her church club and her knitting club. And so our kids have nothing. Nothing. They don't have anything. And so I want to create essentially the Boy Scout, Girl Scout vi, right? And I want this to be a replicable model in this property. It has a six bedroom, six bathroom house and has a beautiful huge area that we could host dances. I brought kids up. We can have, you know, fire pit conversations. You know, I want, like, teens and young adults with autism to come out and experience what it's like to be with their people. I want this to be their club. This is essentially like the Lions Club or the Boy Scouts or the Girl Scouts for our community. And they can be accepted and surrounded by people that love them while their system can breathe. And there's like several phases. We have. I've been working on it for going on two years now, and there's like six phases that we have. And first three phases are just cleaning up the property, getting it usable. It has a pool, it has a garden. And we want to make it really safe. So that's where we're in the phase right now. So we're looking for some serious, you know, donors that want to just be invested in this, right? To help us create this, because we want to make it a model that can go everywhere in every state. There should be 10 of these in every state. And I want to be the first one to plant the seed. But the. One of the other phases that we have are tiny homes, right? So I believe it's phase four. I want to put tiny homes on the community so that if somebody has, you know, two kids with autism and, you know, they're just running around crazy and they go to a doctor's appointment and, you know, they're fragile and they're like, what's the kid gonna touch? I mean, I remember I went to a doctor's appointment once with one of my aides. I was in with one son came out and my other son had, like, touched a fire extinguisher. And there's just so much stress that we experience. Right?
• 31:44
  Speaker A: He set off the alarm in the hotel this weekend. Yes, we did. Yes, we did. And again, not for again. It just was. I mean, it's just. It's turning around. You're at a basketball tournament for your oldest and you turn around And Millie is so excited that there's a bell button to press.
• 31:59
  Speaker B: Yeah. Oh, yeah, yeah. I have a friend that does it all the time. So that's where we're pushing that button. Right. And it's so. It's fun, it's intriguing, like it's. But I feel like they also need a little bit of like fun and adventure and you know, like you're at a tournament for your other child. So, you know, what are we doing? I want to commit. I want a community for our children where they can come and they can breathe and if they're, if they're a couple states away, I want these tiny homes so they can come and just spend a weekend with others like themselves. Right. So I've been to enough communities and I've been to like, you know, Tampa has a great spelling community and they invited my son Vincent and I to one of their retreats and they rented like a camp facility. And I've gotten all these, these insights from viewing places around the country. And so this is what A Place to Breathe is going to be. A nonprofit dedicated to be a just a healing place for a community to come together. They can have, you know, where the goal is to have every Saturday people can come together. We can have, you know, you know, fire chats, we can do club events. We can just, just hang out and just be. And breathe. Right. And the final phase, I'll tell you this because I am so heavy on the mindset of like maps and medical and healing these kids. The final phase, the last phase of the property that I have in phase six is creating on this one acre lot that is been allocated. I want to create a place to heal and I want to create a beautiful, a frame, all natural, you know, property that physicians within. We have, two of our board members have licenses in New Jersey and several of the other ones said that they would get them as well. And our kids that are really, really sick and really, really stuck and really need the keenest eyes and all hands on deck, I want to offer a space for people to come and get that. And while they are getting that, while their child go and gets an evaluation with like an OT and a brain body disconnection, you know, formal assessment and you know, a medical workup. I want them to be able to breathe on a property where they can decompress and that, you know, the parents can be like, it's going to be okay. It's going to be okay.
• 34:10
  Speaker A: Somebody cares while they're there, they're reminded while they're there. That they can.
• 34:15
  Speaker B: Let's take the parent out of the fight and flight and say it's okay, stay in this little cabin and it's safe here we have a fence. This is your place to breathe and this is a place to heal. So the final phase six of the property is a place to heal on the property.
• 34:29
  Speaker A: Well, gosh, I could talk with for you for two hours about this and I know that everyone could listen to you for hours on end, I think. You know, before we close, I just want to say thank you because your life has become. And not just for being here today, but the life that you've built in service for your own family has become, is really the greatest gift that you can give. There's no, there's. This is a life luxury I feel like, that no one can purchase. But to be in the presence and to what the way you've taken your own motherhood, your own questions, your own fight, your own desire to breathe for yourself and turn it into something that is going to care for so many, even beyond your final days, it matters. I'm going to get very choked up. It matters more than any of us can even put into words. And I think we are all better because when you didn't stop, we don't stop. So truly, thank you. Because it's really. It's so organic and it's so, so authentic and it's the best part of life, even when it looks like it's formed out of the darkness.
• 35:27
  Speaker B: Oh, my gosh, that was so sweet. You know, my, my heart, I will just end on this. Like my heart has always been that we can do better, right? These, these kids didn't. These kids didn't ask to be handed this, this struggle, this, this hardship, this profound need. Right? And they don't need to feel guilty and we don't need to feel guilty. We just need to give them a little love, support and hold each other up and we just need to breathe. So that's where this little blessing has just been an incredible gift. So thank you for letting me even share a little bit about it. And oh my God, I'm looking forward to seeing how we can really help this community.
• 36:01
  Speaker A: This is obviously just one phase of many conversations that we'll have here on inch stones with you as this, this evolves and as your work expands as, as the reach of Inchtones gets farther and farther and deeper into the. The special needs community at large. And I'm just very thankful for your voice and, and the life that you give back to this community. So thank you for being here today on Inchtones.
• 36:20
  Speaker B: Thanks, Sarah.
• 36:21
  Speaker A: Of course.
• 36:22
  Speaker B: Well, thanks for having me. And thanks for all that you're doing.
• 36:25
  Speaker A: Of course. My pleasure. And then I guess as simple as that. Until next time here on the Inchtones podcast.