Episode Transcript
[00:00:00] Speaker A: Hey, everyone. Welcome back to the Inchstones podcast. This conversation is a little different for me, not just because I know the guest personally, but because when you have friends in this world, there's a deep shared understanding that is one of the greatest gifts to meeting other profound autism and special needs moms that doesn't require that specific translation of time. And today I'm so thrilled to welcome my friend Jillian, who is the mother of Bob and the woman behind Bobby's world. Profound autism advocacy, where Jillian has made a very, very deliberate choice to show people the side of autism that is just too often missing from public conversation and consumption. And the beautiful parts, absolutely too. But also discussion of self injury and medical complexity, safety, hyper vigilance, the physical demands of caregiving, the uncertainty of adulthood. And the enormous question that lands on so many of our hearts is who will understand and care for my children when we aren't here anymore? And mothers like Jillian and I live inside this very strange tension all the time. We can believe completely in our children and in their dignity and intelligence and humanity and the right for them to be exactly who they are, while also being profoundly honest. That profound autism is profoundly disabling. So, Julianne, you know, today our interview here on Inchstones really isn't an interview about Bobby's world. It's more of a conversation between two moms about really what happens inside our children's worlds and inside ours. So I'm so happy that you're finally here and welcome to the Inchstones podcast.
[00:01:43] Speaker B: Thank you so much for having me. It's such a pleasure.
[00:01:46] Speaker A: Well, this could be a four hour episode, but we're gonna keep it to, you know, around that 30 minute mark. Okay, so we know each other's stories, right?
We don't even need to start with, you know, Bob's diagnosis. But can you tell me a little bit who Bob is right now? Like, what is he into? What makes him laugh? Like what lights up your world with your son right now?
[00:02:04] Speaker B: Sure. So the Bob now versus the Bob, let's say seven months ago, are two completely different beings. And the Bob right Now is an 11 year old who enjoys his surroundings. He's learning to trust his environment, trust, you know, his father and I, that the world isn't truly a scary place. You know, he was so hyper vigilant in his own body that every experience he has or had, I'm gonna say frightened him because it was so reactory is regulated. He enjoys his car rides, he enjoys going for bike rides, he's engaging with toys and books that he hasn't in years.
So it's almost this unveiling of this child that I lost for years, you know, so.
So I'm joyous in this meeting Bob again, who he is.
And I say that because Bob has medical complexities that also played a role in losing my son to autism.
And it took him further and further away from everything.
His whole youth experience stripped away. So, yeah. So that's who Bob is.
[00:03:24] Speaker A: I love it.
Anytime I talk to other mothers and caregivers in this space, one of the most beautiful points I always come back to is while it's so complex and how you even described him is so complex to. To be able to be the mother and caregiver, to witness that brings us always into this present moment, which is such. The biggest gift in all of this, is that while the. The intensity actually ends up giving. The intensity of the caregiving ends up giving you the gift of seeing the evolution of who these kids are alongside the really, really difficult, hard. You know, we share a very, very similar outlook and vision. But when did you realize that the version of autism and medical complexity for Bob that was really being discussed publicly wasn. You were living at.
[00:04:10] Speaker B: At home when Bob started with his medical. I can't even call it. I'm gonna. I'm gonna start it with behavior, because Bob never bad behavior behaviors. We woke up one day, life was completely different. He just started bashing his head on hardwood floor. There was no sign of leading up to, you know, like, when you get a cold and you start with the
[00:04:34] Speaker A: sniffles, and you feel that little. That little flicker in your throat, Right. You had no. You had no mother.
Internal data collecting on this was going to be by morning, you know, a completely different.
[00:04:46] Speaker B: A completely different life. A completely different life. It was bashing his head on hardwood floor out of nowhere. It was like he was on the. And I'm just envisioning him in this video I have of him when my husband and I are like, what is going on? We need to send this to a doctor. We had no real medical.
Because we just kind of coasted by, you know, just needing to go to, you know, to the doctor for his annual review, you know, or very simple, you know, and this behavior was immediate. It was sharp, it was intense. And actually, I will tell you this.
We were dealing with it, I'm going to say, for a few days, and. But it was intense. And so I recorded it throughout the week, and it was a Friday afternoon, and I knew who Dr. Jared Scallron was.
[00:05:35] Speaker A: Mm.
[00:05:35] Speaker B: And I messaged him. I. I had never seen him. Bob was never a patient, but I just knew who he was from paying attention to content and finding functional medicine, doctors. I don't even think he was going live as often as he does now at that time. And I emailed his office, sent a video that evening, I received a message from the doctor saying, now he's never met us, he'd never met Bob. And he said, I'm away, you know, for the weekend. I will see you first thing Monday morning.
[00:06:05] Speaker A: Wow.
[00:06:05] Speaker B: So I think it was like, all right, I know something. Something's happened. Like, he clearly sees something.
So I don't want to get lost in that whole, that whole experience. But he, the behaviors were intense. It took months. So I met with him. He was fantastic. We ordered some blood works. We couldn't get all the labs, you know, some supplements, you know, but it, but the behaviors continued and I didn't follow through with him. Everything's. You're paying out of pocket for, like, should we talk about how broken that system is? Like, to get real help?
[00:06:33] Speaker A: Well, even, even what you just said, not to interrupt, but even what you just said about like, we ordered labs, some we couldn't get. Gosh, is that the title of like every special needs mother's like, life. Life thread of like that line? We ordered some tests. We couldn't get money paid for.
[00:06:49] Speaker B: Well, not even get money paid for. There was actually restrictions on certain labs.
[00:06:53] Speaker A: That's what I mean. I'm sorry.
[00:06:54] Speaker B: Yes, yes. Well, no, but I mean, even statewide, like, I had to get labs ordered to another state. Different states.
Right. State lines to Pennsylvania. And I'm in New York because it, it. I couldn't access in New York.
[00:07:09] Speaker A: So this is a whole nother week. We can do another episode on this. I just, I just, I need to tell you this, though. And we're. I'm going to. Because I want to share this with my. With everyone listening to. There's so much about the federal. You know, the federal government's like, the right to try is always for like end of life, like, last route things. Why is not right to try for children like ours, period.
That's another. That's another episode. But hold on.
[00:07:31] Speaker B: We're going to pin that to the top. But the broken systems within the system. So not only is every autism family experience different, let alone all the routes to get there and the systems within the systems. And that's, you know, again, another podcast.
[00:07:49] Speaker A: When you talk about, when you talk about that overnight deep self injury. What did that do to you as, as Jillian, like, as a mother. My, my, my moments of like painful slap in my face. This is actually happening. Is not that it was different, but what was that, what did that do to you? What did that like whiplash do to you?
[00:08:10] Speaker B: Well, okay, so there's multiple components to that. It's, you're talking, there's ptsd layers. Okay, you're talking, there is layers of guilt, emotional guilt. There's layers of I have another child in this house also that I need to mother.
[00:08:31] Speaker A: Mother in love.
[00:08:32] Speaker B: Yeah, right. And make sure that she's not witnessing such violence to one's own, you know, experience.
So, so I guess I have to rewind. What's the question? Like, what did it do to me? What, how did it change?
[00:08:45] Speaker A: Yeah, what did, what did it do? Because I think that, you know, I can, I could probably better than most explain what you're going to explain, but I think it's always better to hear from one on one individual, another, another mom use her voice to say this. What did that do to you?
[00:09:00] Speaker B: It tore me down and broke me to the lowest pits of hell. Like we could, we could talk for days about it. And I'm honest and I'm very, I feel that we need to be heard and we need to hear each other. And in some saying, you know, it's, my husband's a very private person and I'm like, no, I need to share with people the depths of how I felt because I cannot keep my son safe from himself. You know, I, I think that's what
[00:09:29] Speaker A: a lot don't realize in this, is that because I wrestled with the privacy angle myself, yet at the same time realized through the work of, of my individual advocacy that I had to share this. I had this primal need to share. Not because I needed to feel supported. It was like a service to others to that, that didn't feel the innate desire to share on a platform. Right. Because not all of us women are built in the same capacity for outward facing advocacy.
However, if you are called to it, I believe it is like a God given strength that you are now required to do so. So I, I, I understand where you're coming from. This, you know, it is a seesaw of vulnerability. But when you do feel like this doesn't, this is not only going to help this help me, I need to share. This is going to help others in spades.
[00:10:20] Speaker B: Right? And there is this almost, you know, personal agenda of my own to save the world. It's. I need to help everybody. You know, a big Part of it is saving myself.
And I don't think there's anything wrong with. With saying that either, because when you literally have nobody, you have. No, I, you know, I didn't have a support system. I didn't have. I didn't have support at all. I was by myself and.
[00:10:46] Speaker A: What, you mean the village wasn't there? It wasn't handy?
[00:10:48] Speaker B: No. The village did not come knocking to my door saying, here I am.
[00:10:52] Speaker A: Yeah, I know. Right?
[00:10:54] Speaker B: Yeah. And to imagine that there are so many families that so many individuals that can't step out of what's in front of them, and I've. My. My cycle in life has always been, you know, torn down to have. To rebuild, that's almost been like my karmic.
[00:11:12] Speaker A: Yeah.
[00:11:13] Speaker B: Experience in life.
[00:11:14] Speaker A: What, what, what do you. You know, you've gotten into these. These bigger rooms, and, you know, you've gone from advocating, you know, for your own child and for yourself to representing entire populations. Like, has anything, you know, surprised you about being in sort of the bigger advocacy rooms? And I asked that because it's. It's something that I have to ask myself.
Stay true to the brand of what I'm looking to build because of what the original feeling was for my. Why. So I'd love to hear what your thoughts are on that as you kind of expand and get into bigger spaces.
[00:11:48] Speaker B: When I get into bigger spaces, I'm always shrunken into this little girl that almost feels like the room is too big for her.
And I think it's because there's so many roles being played at once that just makes me realize that life is a. A giant chess game and you have to know who your are. And, and even though one. You may feel. And I'm. I say that. I say the quiet parts out loud. And so even though you, You. You're meeting a parent and let's just say a mother, because, you know, statistics show it's pretty much women.
And just because they have a child that has pronounced profound autism doesn't mean that they have the same agenda that you do.
[00:12:34] Speaker A: What are you saying that other advocates aren't? Because I love that you do say the things out loud that oftentimes aren't said. What are, what are some of those things?
[00:12:42] Speaker B: I think some of the things are, oh, I do like to say the quiet parts out loud. And I am dancing because it's unfortunate that we still have to dance and not totally. You know, let's just talk about, you know, if I walk into a room and I start to say you know, Bob's. And this isn't his case. Bob's autism was caused by vaccines. Right. But we hear that many times sometimes walking in these rooms. You cannot say those things. I'm not saying I can't. If I believe that that's what Bob's story was, I would be standing in my truth and saying that. But knowing that, that a person, without knowing who the players are, you have to be careful of what you say. And that's not me.
[00:13:31] Speaker A: Right, Right. You know, I, I, I have to use this example. I was at a conference this weekend, the MAPS conference, and a mother, fellow volunteer who's I welcome. I'm gonna have record with her on the show. I was like, tell me your story. Just, this is, this is not being recorded. This is not, we're not taking selfies. Like I said, okay, give me your why. Give me your why. Why you're here. And when she told me about the literally 12 hours after her daughter was vaccinated, I said, you have to remember that we are living in a cultural world that is conditioned by the stories that are being loudest and told on the biggest of platforms. And when you have these one on one conversations, which is exactly why my reason for this podcast is you have a very hard time. If you saw two people talking and sharing how they experienced their child through the series of their development, and they know, and a mother knows. It's really hard to pick that apart it's really hard to pick that apart when a mother has taken all this data from a minute to minute thing with their child as they develop. So that part of saying it out loud is why? I think knowing your audience, knowing your environment, but then consciously curating a way to share the things that are not being said out loud is so important.
[00:14:41] Speaker B: Absolutely. No. And, and, and for a minute I hesitated, and I'm like, well, do I say the thing? Do I not say the thing? But I really didn't have a thing to say without, you know, in, in my true experience of it. It's impo. I say that if you think that your child's autism was caused by dancing under the full moon in a blue polka dot dress, I'm not gonna question you. Like, we have bigger things to cry now. I'm not stopping anyone that's researching the why or the cause. You know, that's not, that's not where I'm at. I'm at, you know, Bob's medical complexities. I'm seeing progress with him. I need to kind of move forward. So had I planned my, you know, my conferences out appropriately. I probably would have been at the Maps conference, but leaving my house three times this year, that I was like, that is unheard of. That wouldn't have happened, you know, So I left three times this year to go to three different events. I can't.
[00:15:38] Speaker A: Jillian, I'm so, I'm so glad that this is organically coming up in this conversation because I was speaking to one of the organizers of the Maps conference and we were talking about how important it is to build out the parent side of this conference. Um, and for those that don't know, it's a, you know, medical professional conference for autism and special needs and disabilities and real functional medicine, root cause medicine. And I said to exactly to your point, it is the biggest catch 22 of living this life, which is I need to be there to learn more about what is not being shared as much on a national scale and what research is being done. Yet at the same time, the ability to press pause for even 12 hours or do it overnight multiple times a year is almost not even available to 90% of the mothers and caregivers population, let alone those of us that, that are living this, that, that have this like, thread of desire to be there, to curate, to use our own resources to be able to do that. It still becomes a, a capacity issue, like how many times can I actually do that? So it's so sad because the one on one, like actually being in person with some of these other parents experience, it was like I said to this woman I met, I said, you know, we probably would have been able to connect online virtually on this. I am so glad that you came up to me and said it to me and came up and we shook hands and we hugged. Like. The fact that those experiences become more limited because of the life that we're living is the greatest sin and the greatest, like, sad. It produces one of the greatest moments of sadness for me because it's gonna continue. I hope in my, in our lifetime that we can find a way to make that better. And it really is only gonna come down to the federal policy changes.
[00:17:24] Speaker B: That's something I would really like to do, is figure out a way to set up various locations throughout the United States. And I know it's not possible in every state, but you know, we'll, we'll figure it out and rent a actual camp, a campus, something where our families can go. We have this space because a lot of these events, they're in major cities.
[00:17:46] Speaker A: They're in major cities. Yeah.
[00:17:48] Speaker B: It's the noise, the pollution, you know, the really out of sync routines for individuals. So even if I wanted to bring Bob and my husband and the whole team, you know, so that way we can get a weekend or you know, two days and overnight, whatever it looks like, it's impossible. But if we can do a retreat where these educated professionals could come to see the families and meet the families one on one, get to know, you know, a different sort of retreat, wellness, medical, you know, get some answers to questions and make the families really build their village together. Because virtual is one thing for me, it's being in person that is a completely different experience. And that's what I think our generations are missing is this human experience.
[00:18:33] Speaker A: Yeah. Well, I was also thinking about, and I'm glad we're sort of, you know, we're sort of churning through this live together to share with others. Is that as. As. As organizations like MAPS have obviously a centralized or a multiple, multiple year conferences on the weekends, maybe the option for virtual still happens. And then pockets around the country, they all meet to watch this together, to intake it together. Because, you know, when I was sitting in this room of a hundred parents on Sunday, you know, and being able to look at actually it was very cute. I had. There was a physician that was speaking, his was next to me. So she was not a mother of it, but she was there supporting her husband's work. And I was so happy to be able to look over and go, you should be so proud of your husband. This is like to be able to look at, like to sit and have the wife's take in all these parents looking at that. So what can we do then to make the in person we take something in virtually we're all in a room together, whether it's, you know, maybe upstate, you know, New York for, you know, for anyone or for me, like it's in pockets in towns in central Jersey. Watch things together virtually but still have community in person.
[00:19:38] Speaker B: So.
[00:19:38] Speaker A: Okay, I'm going to switch gears here as we sort of wrap up. But tell me, and I know this is probably where those heartstrings are attached, but what has Bob taught you that has absolutely nothing to do with autism and medical complexities in this community?
[00:19:53] Speaker B: Wow. Okay. I would say Bob has taught me spirituality. Not that I didn't have spirituality beforehand. I did and I was very in tune with and had my own spiritual, really true connection prior to having kids. Kids happen.
And my daily practices just kind of went away. I think Bob has taught me to be present to.
Sometimes we Just really simply have to bring it back to breath.
Right. Start back basic. Then there's moments when I catch Bob when we're outside and he, you know, he's on his trike and he stops and he gazes up at the trees and the leaves are just blowing. It gets me so emotional because it's such a strange thing for me. And it's always that sense of presence. It's the sense of believing what you do not see, believing that there's more that an unspoken language of the universe.
It's getting. It's getting me emotional because it is such a spiritual thing for Bob, my experience being his mom and vice versa, him being my child. We were chosen to be each other's people.
[00:21:10] Speaker A: Without a doubt. I'm going to swallow the knot in my throat because it's being able to sit in mystery every single day. And the power of the present moment is the, for me, the gift of being Milly and Max mom, full stop. I never would have chosen this as the way in which to learn that. And yet the mystery of it is like the most beautiful fuel for this and for the lives that we get to live. Jillian, thank you so much for sharing today in this more formal setting of our friendship. But I believe that so much of the disability intervention and the advocacy that we're doing around it, around helping our children in this world is the way in which we use our voices to communicate and the things that we tolerate and the things that we are going to move the needle on one Inchstones at a time is because of women and mothers like you. And I'm so thankful for your building out of Bobbi's world and your advocacy work and how the collision of both Inchstones and that is why it's going to be mothers doing the most powerful thing that they can, which is to tend and befriend and to build alongside each other. And when you speak about non verbal communication and that love and the mystery behind it, it really is why you're asking people to continue to look that inside theirselves and to find that meaning in these lives, in these worlds that never in a million years we would have chosen. So for the mother who is listening, who is exhausted, who hears Jillian talk about being shattered or struggling with parts of profound autism that she's not supposed to say out loud. I hope conversations like this remind the other mothers and caregivers that honesty about your difficulty does not diminish your love for your child. And I want to shout that from the rooftops because sometimes, honestly, honesty is precisely what loves requires of us, and because our children deserve systems built around the reality of their lives. So, Jillian, thank you for trusting me and sharing a bit of your story today and for fighting for families like ours. I deeply adore you and I'm so grateful to have you here on Inchstones
[00:23:19] Speaker B: Thank you so much for having me. I am honored to be here and keep doing what you're doing. You're amazing.
[00:23:26] Speaker A: Thank you very much. Well, until next time, here, everyone, on the Inch Jones podcast.
