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Autism Parenting and Personal Growth: Jess Daily on Boundaries, Rest, and Community · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey, everyone. Welcome back to the Inchtones podcast. I love nothing more than talking about the beautiful highs, lows, complexities of parenting children like my own with special needs and finding other mothers, women, and caregivers in similar situations. And today is no different. I've got Jess Daly here. We connected via social media substack. There is such goodness in the connectivity of women and mothers who lean into writing and sharing about their journeys that we never in one bajillion years would have thought would have been on our bingo card. Right? So, Jess, thank you so much for being here today.
• 0:39
  Speaker B: Thank you, Sarah, for having me. I'm excited to share my story and
• 0:43
  Speaker A: let's dive right into it. What is your story? Give everyone a quick thing, and I. I'm happy to interject and we can have a. Just a. A natural conversation about this, but what led you here right now, today?
• 0:57
  Speaker B: Okay, so I started this journey actually as a foster parent several years ago. I started fostering, had, you know, maybe 14 or 15 kids in a year and a half. And then along came a little boy. I had his older sister at the time, and he was 14 months old. And we. We didn't know how much of his situation came from abuse and neglect versus how much of it came from disability. But we immediately connected, bonded, and there was like an aha moment for me where I felt like he chose. He chose me in our family to advocate for him to, To. To. To go alongside his journey to figure out what we could do to help him have the most fulfilling life. Um, and at the time, I. And I. I'm still a career. I'm still a professional career woman, but at the time, I was in a position where I traveled a lot. Um, I have an older kiddo who's 17 now, and there was. There came a decision point through his journey where it was. I. I actively knew that I was choosing to take a step back from my career and a step into. To pivot into parenthood in a slightly different direction. And that's. That's where like the. The full on, full stop, full change in life came for me without knowing the consequences, without knowing, you know, benefits and how beautiful it would be, but also how beautifully challenging it would be.
• 2:28
  Speaker A: You know, that's one of those really tough things to speak out loud is that never in a million years would I had thought, and similarly with you, that children like that, that we have through your foster child, it's really not something that if it was ever presented to me 10 years, you know, 15 years ago, that I would have proactively chosen. Right. I think that we live in such a society of removal of discomfort and this kind of motherhood is not comfortable yet. It's so revealing about what is laced within the struggle that truly there's a lot of pain in this. But when you go through something really, really painful as a mother for a child, if you can sit. I love what Glennon Doyle always says, sit in like the hot loneliness of that pain. You move through it. And there's so many beautiful joys and highs that emerge after that.
• 3:23
  Speaker B: Yes. And there's the opportunity to. And I love the name of your podcast. This translates right back to Inch Stones. You learn to celebrate even the tiniest moments, to learn to find joy in the things that in. In any other role without having had this experience, you overlook every day.
• 3:45
  Speaker A: That's. I mean, I just got. I just got full body, holy spirit chills. Because that to me is always why. It's not just about the Inch Stones of the child. It translates into every other reason of just me as a woman and mother. You know, the finding. Finding like such deep happiness in a. It's gonna sound so cheesy, but like lighting a candle at the end of the day or like starting the day where I love to watercolor or journal, you know, it is so simple. It is so effortless. It is so easy to find gratitude and thanks. I don't know if I would have gotten there had it not been for my children being who they are. And that's like the most powerful part about Inch Jones is not just about what the children are doing. It's about the freedom that you're giving yourself to celebrate the small wins in different roles that you play. You know, you. Even as a entrepreneur, like I am, and like you said as a. As a career woman that you are, talk to me about how that's helped you in the workplace.
• 4:47
  Speaker B: So I've learned to slow down. I went from being a perfectionist performer, high performer. Not. Not that I. Not that I don't do well now. Right. Like there. There's a balance. But it transitioned my perspective and ambitions to quality, quality of work, intention of my time over performing for achievement. And I think and. And also in that, like learning to create space where before it was just like rapid fire. I love startups. I've worked in small organizations, have a very entrepreneurial spirit. And that's a different. It's a different cadence, it's a different lifestyle that you take on with that. And I think learning to balance that, like having that forced Slowdown to be very intentional about how I spend my time, where I focus my ambitions, where I'm willing to say good enough is good enough at work versus always pushing for more.
• 5:53
  Speaker A: Yeah, you know, intentionality, I feel like I've always known that word. Like, I feel like, you know, I'm 42 years old. Having what's your intent? Was always such a big thing for me as just a young woman and, you know, growing up and becoming a career woman in my early 20s in New York. But intentionality now does exactly what you said says it does. It gives you the internal validation to hold space to, to allow for more freedom and slowing down. And that slowing down actually is what allows you to be better in multiple different roles. I think that that was big thing for me, you know, just in becoming a mother, but becoming a special needs mother. I had to create deep intentionality about my time. And I, I'll be honest, I mean, that first couple years, like, I was just like, I'm sure as any mother that's early on in this journey is like, you go, I was guns ablazing, like, what therapies? What, what are the extra things? Like, how do we get them, you know, caught up? And I was so on this like, hamster wheel of like, if I just don't stop, it's going to get me outcome that I wanted. Boy, did I have it wrong at first.
• 7:07
  Speaker B: Yes.
• 7:07
  Speaker A: I mean, I had it so backwards. That's. But that way reminded me of how conditioned we are as like women and mothers to like, well, if you don't achieve something, then pull, pull up by your bootstraps and get moving. And it was actually really the opposite. It was really telling me to slow down.
• 7:27
  Speaker B: Yeah, absolutely. And there's a, a byproduct of that that we see in our kids. Like, I see for my 17 year old the way I raised him and the expectations of meeting milestones and developing and progressing versus the slowdown with my five year old. Like, having kids in, in two totally different seasons has forced me to, to also see like, the things that I could have done differently as a parent and the way I could have slowed down. And not that there's any regrets necessarily. Right. It's. It's just a, it's a learning opportunity. Yes, absolutely.
• 8:03
  Speaker A: I think, I think that's one of the, you know, I know that every generation has its, has its things that like the other generations will like, Tisk. Tisk about. You know, I'm a solid millennial, geriatric millennial. And you know, I Do think that one of the things I always say, I'm like, I'm like I'm not Gen X. I'm very much not Gen X. My partner is Gen X. And I'm like, yeah, we are not in the same generation. He just, I mean Gen Xers are like, they're insane. They were just, you know, all like latchkey kids and just like wild.
• 8:35
  Speaker B: Yes, very much, very much.
• 8:37
  Speaker A: But I, I say that. Is that like the reflective nature that. I am so glad that I am a millennial mother that I'm able to talk. I, you know, I have a typical developing 13 year old and her two younger siblings have profound needs. She's in so many senses like going on 22, right at a 13 year old level with what she carries. But I think that the motherhood as a millennial mother and the reflection that I'm able to have, just like you shared about yours and having a 17 year old and then a 5 year old with diff, obviously typical and neurodiverse in a variety of ways. I think that reflecting back is not regret at all. I think it allows the children to see that you have the reflective capability to say, you know, when I did that, like how did that make you feel? Or like I'm so, I'm thinking back now as to why I did that. I think it shows the fullness of humanity, of our humanity and I hope that the generations to come that are, there's younger mothers that are just now starting their motherhood journey and have children with neurodiversity or profound special needs, realize that the benefit of self reflection is not to regret. It's to grow your capacity to see yourself and orient yourself to a greater whole. You know, and that, that took time for me to understand myself. But you know, talk to me more about, you know, how you carve out time for yourself and what do you do that allows you to be so expansive about your acceptance and like you said, intentionality about things.
• 10:03
  Speaker B: It's a journey, right? It's something I have to practice every day. It's, it is a, it's, it's a mindfulness practice to create space. It is an ongoing practice to remember that I need to take care of myself. And I'll. An example of this is I just got back at midnight last night from a trip to Chicago and I don't travel much anymore. I, I'm home and, and I love being home, but I also love when I have the opportunity just to be wheels up, to be unavailable to be and it, and it's so hard because it can't.
• 10:39
  Speaker A: Why do I love being unavailable? I love being unavailable.
• 10:42
  Speaker B: I know, but it makes me feel so free.
• 10:46
  Speaker A: I feel so free when I'm unavailable.
• 10:48
  Speaker B: Yes. And just takes off like the. The pressure of I have to be unavailable and on high alert. Like, if I'm truly unavailable, I have to trust my circle. I have to trust the people that I've enlisted to do these things. And I have to, you know, I. I have to. I have to trust that they know what to do and that I've prepared everyone to handle the things when I'm not here. And that actually gives me some comfort, you know, for later down the road when I'm not here for him. But back to taking a little bit of space. Yes. So things. Things like traveling, like my trip, it was not jam packing things, even though it was a work trip. I skipped a dinner, right. Like I said, I can't do the dinner. And I stayed in my hotel room, I took a nap, I ordered food in. My whole intention was to write, to reflect, to do the things that also kind of fill my cup, but I couldn't. I was just exhausted. And I said, I have to take this time. I have to take the opportunity that I have this space and just be. Relax, let my mind relax. And. And I think that's the challenge for special needs parents, is there's not always that opportunity to get away like that. Right. So we have to find the little moments in every day where maybe it is taking a. What I call my somatic showers. It's taking a shower in the dark with a candle and aromatherapy or like,
• 12:24
  Speaker A: though it's such luxury, it sounds so silly, but it's such. It's such a gift to yourself. Oh, my gosh. I've got a little, like, set of, you know, different essential oils. And I. And I. I probably use them every night at some point, but for some reason I don't anticipate it. And it's such a gift. At the end of the day when I remember that that's the next step in my, like, routine. Is that, like. Oh, right. Like I'm gonna put on that, you know, oil that. I have my gratitude. Blend in and like, what that gives you, if you're conscious enough to realize what a gift it is to even take five minutes.
• 13:01
  Speaker B: Yes.
• 13:01
  Speaker A: To. To do that. That's where. That's where the restoration, I think, really lies. And I think that I'd be with you. I mean, it's really hard to say no to work things Especially as a special needs parent, when you know that rest and recalibration and reorientation of your own body system has to take priority.
• 13:23
  Speaker B: Absolutely. We don't even, even in the moments, I would say, like the first hour after my child goes to sleep, that is the biggest opportunity for me to take space. And I know that that's not the time that I'm finishing the dishes. It's not the time I'm doing laundry. He just fell asleep. I don't know how long he's going to be asleep. What can I do to restore myself, to balance myself, to take that deep, like what we call a woosa breath, you know, how, how do I exhale in this hour so that if something comes up right after this or if we don't get a full night's sleep or what, whatever the next thing is, this is when I can take space.
• 14:07
  Speaker A: Yeah. Yeah. Again, it's like, it's one of the most beautiful byproducts of a life that hands you such. It requires such hyper vigilance. And I think that I was talking to a trauma informed counselor recently and I was asking her about. She, she has a lot of CL clients that are, that have, you know, severe PTSD from military combat and, or sexually abused sexual abuse victims. And you know, I was hesitant to, to, to bucket, you know, severe special needs moms in it. But I said, you know, there's a lot of hypervigilance and the inability to set down oneself because of the needs of our child, children. And she was telling me that in her work in trauma informed therapy, she said, there's a fear that. There's a fear that the things that you learn through some, you know, hyper vigilance or traumatic event that you never get to have an off switch. I said this to her. I said, I fear sometimes losing the skills that the hyper vigilance taught me in healing from the sort of impact of having too profoundly autistic, severely disabled children. And she said that is across the board. You know, people with PTSD think, well, it taught me such resilience. It taught me that I can still wake up in the morning. You don't want to lose the things that the trauma or that the intensity of an event or have intensity of a parenting lifestyle, it sits right next to each other because I've learned so much goodness from being thrown into the flames of a motherhood that I never in a million years thought I would be. So there's skills that you learn, but you don't. But you have to at the same time. Go. Yeah. That was really painful to go through.
• 15:50
  Speaker B: Yeah.
• 15:51
  Speaker A: Right.
• 15:51
  Speaker B: Yeah. You know, I. I have you. I'm sure you've read this, but the book, the Body keeps the Score.
• 15:57
  Speaker A: Oh, yeah. Oh, yeah, yeah.
• 15:59
  Speaker B: And it's. It's a, It's. It's a love language book for me.
• 16:03
  Speaker A: Totally.
• 16:05
  Speaker B: But similarly, like, I. I feel you in that. I don't want to lose the skills from the hyper vigilance, but I do come back to this notion often that the body keeps the score. It knows how to protect us. It remembers the things that we've been through. And we're not. We're not meant to be at ease all the time. Our bodies are meant to be reactive. And when we get stuck in the kind of reactive. I'm trying to think of looping. Yeah, looping. Or like. And I relate it to like the polyvagal theory. But our bodies don't forget. So even. Even as we're healing through things and we're learning to kind of, you know, relax back into that safe state, our bodies don't forget and they carry that. And I think that's. It is hard for us. It's hard for us when we do have like PTSD or we do have trauma that we carry and we're working and healing through that to not be. To be afraid that if we let our guard down or if we're in that safe space, that something couldn't happen again.
• 17:22
  Speaker A: Exactly.
• 17:24
  Speaker B: But our, but our bodies know that. I think part of the healing process is learning to trust that our body will take care of us.
• 17:32
  Speaker A: Yeah. I think one of the greatest reminders to me, as I've been reflecting back more and more, I'm starting to write a book. And thinking back into those early years, I truly did not think I was able to survive. Like, I really did not think I was going to survive. What was my reality. And you know, in the 10 plus years that it's been since Millie was diagnosed, it's incredible to me. I'm like, but I did, like, how did I actually survive that? And I think that the. It's so simple when you realize that, my gosh, like, not only did I survive that I've evolved. I've made choices and changes. There's been moments where I, you know, I thought I had it under control. And then something else sort of wallows me back into like a fight or flight. And at the same time, I'm still here. And it sounds so. It sounds so ridiculous. Cause I'm like, I'm in you know, good health and take care of my body and stuff. But there really are moments in this motherhood journey that you think, I'm not gonna make this. This is not. I cannot make it through this. And it's so. It's so. It's such a testament to the resiliency of the human body that when cared for and when you do sort of move through the process of reorienting to a new normal and finding the time and the space to give yourself permission to rest and give yourself permission to take a beat and give yourself permission to find these small windows of breath. I live in central New Jersey, right outside of New York City, and we're walloped in snow right now, so I can't do it immediately, but in the warmer months, I mean, going outside and just putting my feet in the grass before the kids get up. I had a fellow mom on substack, a woman named Jenna Gennitis. She writes for Mama. Well, and she said, have you ever just gone out in the morning and put your feet in the grass before the kids get up? And I was like, no, but I'm gonna do it every day I can now. And it was like the smallest inch zone of a. Of a. I was like, why didn't I think about that? And she's like, well, this is what we do. We share with each other these small things. I'm like, that has been in the last year my favorite thing to do. And my oldest is like a teenager. And she thinks, she's like, oh, there you are. Like stepping outside with no feet, you know, no shoes on. I get. I'm like, Trust me, in 30 years, you're gonna understand.
• 19:51
  Speaker B: You're gonna understand it, and you're gonna
• 19:52
  Speaker A: understand about 30 years, and you're gonna be like, mom, I'm so glad that east that you did that. But like, truly just standing barefoot in the grass. I would not be the mother I am today without realizing the power of the smallest little intention. Intentional things for. For space and that give back to myself. Because this journey can wall up you. If you're. If you're not particular about that.
• 20:14
  Speaker B: Yes. And I love what you said. Reorienting to normal, that is not a one time thing. That is a. At different phases of your child's life, you have to reorient to normal, to where they are at that time. And we're living that right now. Like, this has been. This has been one of the toughest seasons. And I thought the medically complex season of like, figuring everything out, establishing care that was the toughest. And now I'm like, oh no, I had no idea what was coming. So. And now, and now I'm in that, that reorienting to normal and finding ways to, to walk outside and put my feet in the grass that are not stretches of 30 minutes or stretch, you know, it's not, it's not a trip away for a night or two. It's literally finding the five or 10 seconds between meltdowns, between feedings, between, you know, to, to recalibrate so that I'm able to co regulate, I'm able to give attention to my little two also be able to meet my near adulthood child, you know, as he has needs to like it. But it literally is, it's, it's. It is reorienting to normal and it is like understanding that the pockets of time or the pockets of space that you're able to create may not look the same from season to season.
• 21:37
  Speaker A: And I always say this. I, as someone that's forward facing and you know, shares a lot of my actual life of, with being a mother, I always try to remind myself and to remind my audience. Like I'm not here to say, like look at me, do like me. I'm here to just hold up the mirror and say whatever makes you feel or garner the same sort of bits of peace, harness that for yourself. It's not going to look the same. And it's. And that's part of like the under, that's part of that reorientation that like, you know, I can't even believe that I'm able to speak and have a platform and advocacy work. Because 10 years ago there wasn't a snowball's chance in hell that I was able to even speak about the process and the, and the longevity and the lifelong diagnosis of children that'll potentially live with me for the rest of their lives. I couldn't speak to that at first, so that's why I love sharing more openly now is to remind people that wherever you are, stay planted in that and do what you can. And don't compare to mothers that are farther along in the journey. Because I know that I used to get caught up in that too.
• 22:47
  Speaker B: Yeah. And it's difficult because we want to know what the journey is going to look like. We want to know, be able to anticipate and plan and hope. And the reality is we can't do that. Right. We have, we. We very much have to stay in the present. We very much have to accept what is and then. And accept the, the successes and the milestones or the inch stones and recalibrate. Right. Like.
• 23:22
  Speaker A: And I think that the more that. And again, why I do love Instagram, substack, Facebook, social media for our specific community is that because we are so limited in our ability to interact with the world like many typical families do, it does create a space to feel seen and heard and understood. And while there's so many things that I shared about the negativity and negative parts of social media, I think that being able to see other mothers doing what they can to press pause and regain their agency on their ability to keep going is one of the most. It's so fueling for me. When I see other mothers farther ahead on this journey than I am and I see the work that they're doing or how they've given themselves grace to keep going or what they're fighting for now as their children age out of the system, it does remind me that, like, I'm not gonna become obsolete. Like, I'm. Nothing's gonna take me down in this. We are gonna continue to keep living and there's going to be bumps and hurdles at every point, but we get to do this. I always say I get to parent Millie and Mac. I'm so glad that they chose me to be that, to be their mom. And I know that you feel the same. Jess, before we sign off, can you let everyone know what where they can find your work and where they can follow along on your story and journey?
• 24:52
  Speaker B: Yeah, absolutely. So I. I have a substack called juxtaposition. Very difficult to say. Just look up the word, remove the vowels. And I write about parenting, coaching, career, the intersection of that within organizations. I'm also on Facebook jessmdaly and Instagram jessmdaily.
• 25:14
  Speaker A: Awesome. Well, thank you so much for sharing more about your why and this crazy journey of how you became a special needs mom. I am so thrilled to be able to share your story with my listeners.
• 25:26
  Speaker B: Thank you so much for having me.
• 25:28
  Speaker A: Of course. Well, until next time, everyone on the Inchtones podcast,