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Caregiver Stories: Choosing Love Through the Unexpected Journey of Motherhood with Valerie Probstfeld · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey, everyone. Welcome back to the Inchstones podcast, focusing on the moms and caregivers and those of us that wear and hold the title of mom as the highest order and of the most powerful title we will ever hold. And my guest today is no different. Her name is Valerie Probsfeld. She wrote a book called to mom is to Love. And it was handed to me in my life through a mutual friend of ours, mentor. And when I realized that her whole platform in writing is using to mom as a verb, I thought how symbiotic and how much synergy overlap with the Inchstones mentality of profound autism motherhood. So, Valerie, thank you so much for being here today on Inchstones.
• 0:47
  Speaker B: Thank you so much, Sarah. It's an absolute pleasure. I am so honored to be on your show today. I really appreciate it.
• 0:54
  Speaker A: So tell us the origin story of to mom is to Love.
• 0:58
  Speaker B: Thank you again. And so I will say to mom is to Love. The origin story, I mean, really came from when my first was in the nicu and I felt like I was going to be this A plus mom. Like, before I had my baby, I was gonna rock it. I was going to be, like, just awesome at it. Cause I didn't want to be like how my mom was. My mom yelled a lot. My mom was. Would have angry face. A. And I studied pediatrics as a nurse practitioner. I knew what I was going to do, and I wasn't ever going to yell. I wasn't ever going to have an angry face. But then once my baby was born, Sarah, like, within 10 minutes, they took her to the NICU. And that illusion of control that I thought I had, like, just vanished. It was like, I don't. I don't have the control. I didn't study for this. And I was yelling. I was yelling at the staff. I was yelling at my husband. I was so frustrated that they took my baby away. And I knew it was necessary, Right? Like, logically I knew. But at the same time, emotionally, I wanted my baby with me and I wanted to protect her. And so during that time in the NICU and we weren't there for very long, but at the same time, it, like, made such an impact because there was so much work busyness, there was so much going on. And as a provider, I kind of saw things from the patient standpoint, and it was an interesting shift. But at the same time, like, I noticed that when I went into the hospital, everyone's calling me Valerie. They all were like, valerie, do you need anything? Or, you know, whatever you need. And all this stuff. But once my baby was born, my name vanished. It was. They all called me mom then. They all were like, mom, do this. Mom. The baby needs this Mom. Like, your baby is upstairs. You need to go. And you know, or you need. Or you can't go now. Really more so you can't go now. I felt separated, and, mom, you need to. You know, what was it? A lot of the time just saying like, mom, you need to take care of yourself. And it's like, well, taking care of myself is being with my baby. I remember, like, constantly just wanting to be with my baby. It was so hard. So anyway, I would journal a lot in the NICU and in the first couple of months, and I remember one day I was just like, oh, they called me mom all the time. What is Mom? Like, I almost felt like it was like a birth certificate of my own, you know? Like, we so carefully fill out, like, our baby's birth certificate and their name. But it's like I became mom, and it's a beautiful name. I mean, I studied for. I wanted this. I wanted to be a mom.
• 3:35
  Speaker A: It's almost like you went through a schooling, like. Like, school of something. And you're like, I didn't even know I grew. Like, I got this certificate. Now I have a label. Like, I didn't even know that I was giving this title. Like, you knew you were, but at the same time, you're like. It's almost like, you know, a military thing where people are like, oh, Colonel. And you're like, they. They at least know they're moving up in rank. Like, as a mom, you're like, everyone's calling me this. Like, I don't even know why this is so much my title now.
• 4:00
  Speaker B: Yes, exactly. And it's like, oh, wow. Like, here it is. Like. And that's literally all anyone's calling me. And it's like, did Valerie disappear? Like, I love this name. It's a beautiful name, but it's not my only name. And so I looked it up in the dictionary, and according to Merriam Webster, mom is both a title, a noun as well as a verb. And I never heard of it as a verb before, but that made so much sense when I looked it up. To mother means to give birth, allow one to rise, care for, or protect. And if you think about that, like, what gives birth? What allows one to rise, care for, protecting. And that's love. That's. If I can control not much of mother, I can't control my own expectations. How I was yelling. I Mean, I can work on that, and I go into that, but at the same time, I can't control, like, what I thought I was going to be, what society thinks I'm going to be. But I can control my verb in the moment. I can choose love over fear in this moment. And if for some reason, you know, I mess up and I yell, I can give myself that grace and do that growth, mindset and love myself in that moment. And that paradigm shift, I mean it, you know, practicing that over time, and I'm far from perfect, but I think that's part of it. Understanding we're embracing the imperfection. There's beauty in that. And that made all of the difference. And I felt like, you know, if I can choose love, you know, if we all can choose love more in that, in whatever moment, it is breaking down each moment into that, I think it just makes life a bit more. We give ourselves a bit more grace, and we give others more grace as well in that, too.
• 5:40
  Speaker A: I think that one of the greatest gifts of motherhood is realizing there's a real primal sense of tending and befriending other mothers. And it doesn't. And it doesn't have fences or boundaries on the kind of motherhood that you are experiencing. Which is, again, why I love being able to talk with you today here, because I can hear. What I know a lot of my audience of mothers and caregivers of autistic children feel is this wild disorientation to the reality. Right. And when reality is, like, so real, like, to use the word of it, like, for you, your baby being taken away, the NICU having this wild experience of being literally separated from your child, and that was a physical reality. You. There was nothing you could do to change that. Nothing. Nothing. And it nestles so deeply to what I know a lot of my moms here feel is that the reality is that your child just got a diagnosis, and their neurotype is going to drastically change their entire developmental life and your life as a mother. And that is so disorienting. And now I like to talk about. And I'm sure you've done your own deep dive individually with this. Why do you think that is? Like, why do you think that moment was so disorienting, not just from the separation of you and your baby, but, like, why did you feel such disorientation? I tend to feel like, for. As an autism mom, I never in a million years was discussed that these possibilities would happen in motherhood.
• 7:09
  Speaker B: Yeah.
• 7:10
  Speaker A: Like, I was so convinced that I was Going to have a full house style, life, right. And just like step by step or whatever 90s show that I watched, you know, Family Matters, step by step, growing pains. Like I was. So I had such a chokehold on that expectation that the disorientation of that not happening was almost more painful than actually the reality of it.
• 7:33
  Speaker B: Yes, I think that's such an important question and also like such an important thing to think about and to process because I agree, I think, you know, with the images you're asking that, Sarah. Like when I was really trying to go back to that time, like when I was writing the book, I wanted to really put myself back into the nicu. And it's been almost, or like a decade or whatever. So it's been some time. And so I fixated on when I came in, you know, like we, I wasn't in labor, I was induced and they said welcome, the baby's name. So like we had welcome and the baby's name that I like so much like picked out in all my control that I looked up how I want her first name, her middle. So there's this perfect welcome, this perfect baby and this perfect name. And then I remember as soon as she was born, someone like slashed the, the board like with just like a dry erase, a dry eraser or whatever and put the room number of the nicu. So it was like, it was a visual of like, like it was just very. And I don't think I like thought
• 8:47
  Speaker A: I realized like that, yeah, I'm such a visual person like that. Like, I think that is so parallel to what happens in a diagnosis because people go, you're like, here's Camilla Grace Markle. And they're like, autism level three.
• 9:02
  Speaker B: Yep, yep.
• 9:03
  Speaker A: And it's like, I'm so glad you're sharing that. Keep, keep going.
• 9:06
  Speaker B: Yeah, it, it was so, yeah, like I, I, I don't think I process it at that point. It was kind of a surreal moment. But once I was kind of going through that, those visuals, I'm like, I never really, I guess grieved that in a sense, but also at the same time opening up what is real, what is this? I think so much of it is in the grieving process in my situation was this whole nicu. And there was a lot of medical bullying that went on in the nicu because partly, I mean, like I was a provider myself, so I kind of knew a lot of, lot of things that, not like a lot of worst case scenarios, I should say, you know, and so I was, I was frustrated and so angry with so much. But I never actually, like, grieved through that process of. I didn't have this, like, childbirth process or, you know, this child delivery, that process that I envisioned. And there was all this unknown. I remember the doctors, some of them just being so cold and the things they were saying. Like, it's like you. You are literally, like, viewing us as an interesting case and not as a person. And I remember saying that to a doctor and being just so frustrated. Um, you know, and I mean, sorry, I'm, like, trying to think of, like, you know, from a medical sense, these. I feel like providers and. Sorry, I'm kind of going on a tangent with this because. No, this.
• 10:57
  Speaker A: All. This all tracks so well with this. With the. With Mikey.
• 11:00
  Speaker B: Yeah. Oh, good. Yeah. I feel like there's so much of the time, like, as a provider myself, there is this, you know, like, we learn by cases, we learn by textbooks, we learn by experimenting, experience, and all of this. But the things that I remember most are when a provider hugged me one time, I. This was after the nicu, but I kind of had a PTSD moment years later, and there was just a couple things that, like, really, like, brought me back in time, traveled. And this nurse practitioner, she said, you are not here, mom. You are not in the present, and I'm going to give you a hug right now. And that made such a difference. And it's those little things that, like, it's like, again, that love, like, as opposed to that fear. I just wish, I guess, like, in the, like, going back to that journey of, like, kind of honoring the times that people did show me love, that providers, because there were so many that did, and honoring that and grieving through the processes that I thought it was going to be perfect, that weren't necessarily perfect. And. But at the same time, like, your question about, like, the whys, I think so much for me was the control, the illusion of control. I think we want to control so much in life. It's so hard.
• 12:18
  Speaker A: I think there's also this expect.
• 12:20
  Speaker B: Yeah.
• 12:20
  Speaker A: We don't realize until something is so out of our control how much we had the illusion of control before, and then we were fearing it too. It's, like, so layered, right? It's like there is this illusion of control. Then there's the feeling of, like, no, I want to be in control, like, in a moment. And then you realize. And then there's like this third, like, layer of, why do I. Why am I doing this? Like, why. Why have such a grip on this?
• 12:48
  Speaker B: Absolutely. And it's that. Yeah, that process. So much of what I turn to a lot is nature. And, like, what does nature do in times of seasons? And you're kind of leaning into that. Like, I think of, like, seeds that I planted earlier on in the spring. Like, they're so little, and some of them, like, just. You don't know. Like, you look at a little seed and you're like, how is this gonna grow into anything? But you almost, like, have to kind of let go and. Or at least, like, for that planting analogy, I have to plant a seed, you know, give it proper nourishment and sunlight. But then I can't keep digging it up. I can't keep, like, checking. And I can stare at it. I can, like, worry about it, but it's gonna grow. Like, it's gonna do its thing. And like, so many of my seeds now, now that it's may, like, I have a lot of lettuce and spinach growing right now. I have other things that, like, my gosh, it's like, so amazing to have, like, these salads every day.
• 13:50
  Speaker A: But it's such a reminder. It's such a. It's such a nature. Nature's reminder of again, like, the. When you planted that tiny seed, you had no idea what that root system, how that was forming underneath and that it was going to support. And I think a lot of the timelines for growth again become these realizations of how much we were conditioned to expect growth to be this very, very linear process. There's a reason it's called, like, TV programming. It does program you, like, what we take in, like, the medium around us. If we don't look to nature, if we don't look to. To. To. To the literally our earth around us, or more like indigenous communities that, like, rely so much on, like, what the earth and giving back and all these things. If we don't do that, we're going to become victims to just the programming, which actually isn't real. That's not real.
• 14:39
  Speaker B: Absolutely. I think that's so spot on. And I think that nature. I mean, like, for tomatoes, for example, like, I just love. Like, last summer I had a lot of tomato vines and I planted kind of too close together, so they were repeating almost to. For the sunlight. But they would go down. Like, they had to be essentially not rigid. Like, they had to be flexible, whereas so many times they would grow down, but then loop back up and, like, do these really intricate loops and designs that were so impressive, where it's like these tomato things are so Resilient. And they still, they get to the light. But you got it. Like, if I saw it growing down, I would probably try and fix it. But it's like letting it reach the light or you know, it's. And even like, like I get so like into like the history of stuff and like time itself, even like minutes were not even a thing until like a couple centuries ago and how like man made time is. And I think that we put all these constraints on us when we think of, you know, time as something that needs to be measured as opposed to something to be experienced and the color of the seasons and kind of going with that. I mean, that always grounds me when I feel out of control or when I feel too busy or overwhelmed or worried or whatever. Like going outside and breathing, like knowing that we're in it together. You know, we have this community of each other as moms as well as nature. Like, that's like when I go to the beach, like, and I see the waves coming in and out, you know, like that regulates my heart rate. But then to think that that's from the moon, the tides are from the moon. I know. So amazing.
• 16:25
  Speaker A: It is. And it's. And I think, you know, when I, Yeah, we, we are drawn. Not to give a sobering fact here, but, but this is actually, this is going to be a. So this is going to be a sobering fact. So I went to agency and I was speaking on Capitol Hill for the Autism Cares act and there was a stat that was presented and it was that, you know, the leading cause of death for autistic children under the age of 14 is drowning. Now that is a really sobering sad, sad, sad, sad statistic that is only increasing. But what it does, it reminds me this. Cause I've had this happen with my son who's eloped and I. It's. It's paralyzing for a lot of moms in my situation. These kids are so drawn to water. We as humans are so drawn to water. We should not be surprised when we're drawn to water for regulation. So my kids, I mean, they can't get enough. I didn't share this with you before we pressed record, but I had a major like flood in my house. Like second floor bathroom overflowed three weeks ago. And I'm in renovation demo right now. All that to say when my kids get home from school, I go right to this hotel room from. You know. Cause I can only sleep here in my house right now.
• 17:30
  Speaker B: Sure, sure, sure.
• 17:31
  Speaker A: And, but I say that is that There's a pool at this hotel, this Hilton Garden Inn. Right. A mile away. My children are living their best life because they get to be in water every day. And I think it's that reframe always of, like, what we're drawn to innately should be something that is celebrated even within the hardest of seasons. Right. Like, to your point about wintering and the staying still, we are supposed to do that. We're supposed to be drawn to water. We're supposed to find parallels in nature to give ourselves understanding and stability and honestly, fuel for. For the unknown and the volatility of what is to come.
• 18:08
  Speaker B: I.
• 18:09
  Speaker A: And I just. Yeah, like, you're right again. Like, when you get by water, you think, how is this being. How is this set in the cosmos? What's. What's. What's allowing these waves to crash me? And why is that so regulatory? We are so much more connected than we ever think. And even within children and moments with our children that cause such chaos and such disorientation. That doesn't mean it's wrong. It just means it's forcing us to go deeper into what we do know to be true, which is that we can move through this just like water does in general.
• 18:41
  Speaker B: Absolutely. I think that's so well said. It's, it's. It's. We can move through. We can allow, like. Yeah, with water, like, I'm kind of visualizing like a river with, like, rocks and, like, things along the way and allowing, like, we're flowing with it. And I think that when we hold on, I remember, like, just. Just in life, I feel like when I'm resistant to whatever the flow is, that's when I am kind of. I don't know where I'm going at with this thought. I'm just trying to think of, like, a visual of, like. You know, one time there was a procedure that, like, I was so resistant to having it done, but at the same time, someone had told me it's kind of like trusting the pilot to go to your destination. Like, you have to kind of trust and have confidence and confidence in yourself and, like, confidence. Like, the root of confidence is from the word trust and, like, just trusting that there is this community out there and there is. You know, like, sometimes I think about, like, with mental health and stuff, like, of thunderstorms, like, in our head, where, you know, like, when there's a storm or a tornado or something that goes through a town, we have community that helps, like, pick up. Pick up the pieces and all. But with mental health, when we're kind of going through a storm in our head that we forget about the community aspect. We forget about, you know, we also need that. And I think that, you know, supporting each other through that too.
• 20:19
  Speaker A: That's what's so interesting is that I don't know what was out of us. We're actually supposed to need that. Like we are, we are not supposed to be without that support. And unfortunately tragedy or loss or hardship calls that upon us more urgently in modern day world. But we're supposed to have that all the time. You know, we're supposed to have that. I still have a hard. Trust me, please. I'm. I'm no guru around this. I have a very hard time asking for help.
• 20:53
  Speaker B: Same, same. I think it's a lot of us in society and you know, I've been doing. And I could be totally off base. It's kind of my own hypothesis I'm researching right now. But I've been not taking my phone as much on walks. And I was talking with someone the other day about like, well, what if there's an, like an emergency where you need your phone? Which like, yes, we do need to be able to contact an emergency. But where I was going on a walk, there were people everywhere and I'm like, well, I would have to have someone help me and that person. And so, you know, like we get so like in my, like in the neighborhood, for example, like when people knock on the door now, I think we automatically think they're trying to sell something or like what do they need?
• 21:30
  Speaker A: Like, like my peace is disrupted. Like, you know.
• 21:33
  Speaker B: Yes, yes. But if it was someone who was truly in need, like I would feel, and I would feel like, oh my gosh, I can help someone. Like I can help like that community again. Like, I just actually don't know.
• 21:45
  Speaker A: Did happen to my parents recently. Like this like a person came to their door. They live in a college town part time and this happened. A young woman came to their door and she was not in a good situation and my parents got to help her. My mom was like, it was so hard because we didn't know what was happening. But to know that like help this girl, like get her to the hospital. Like it was like every, you know, that was. My mom said, like she was like, I'll never forget being. I'm so glad she knocked on our door. Like, I'm so glad she did that.
• 22:15
  Speaker B: Isn't that wild? I mean it, it really is something obviously like trusting in our judgment and like the safety aspect of it. But at the same time, like, it is interesting that, like, I think we always assume. Assume, like, the negative, you know, and, like, when we actually helped, it's like,
• 22:32
  Speaker A: oh, my gosh, I feel so glad that I got to do that.
• 22:36
  Speaker B: So glad. And I'm so glad that, like, we underestimate that. I really think we do. And especially when we're on our phones all the time and we're doing all these things and, like, you know, so I think that's. I try to do more of, like, if I'm in a. I kind of call it mental back roads. Of, like, if I'm on a mental highway of, like, frustration or anxiety or whatever that is, trying to lengthen that space. Like, Viktor Frankl talks about the space between reaction and response lies our growth and our freedom. And when we lengthen that space, we can. We can grow. We can not react or work on. You know, I reacted in this moment. How can I respond? And maybe that's showing gratitude right now. Or maybe that's, you know, helping someone by even giving them a smile. Like, I don't know. I feel like when I walk my dog and stuff, I sometimes will, like. Like, just purposely try to smile at people to see if they smile back. And I would say, like, 60% of the time. I think it probably depends on geographic regions and stuff, too.
• 23:39
  Speaker A: I was just gonna say, I don't know where. I think you're in the mid-20s on your accent, but, like, here in New Jersey, like, you would probably be like, gosh, everyone around here is like. But I tell you what, though. I'm not from New Jersey, and I do the same thing. I'm like, I'm gonna smile the heck out of this walk today.
• 23:53
  Speaker B: I know it really does, like, put you. Or if, like, someone gives you a compliment or something. Like, if you're at Starbucks. Like, I remember this one lady was like, well, you look amazing with that color and your eyes. And I was like, thank you. Like, you just. It catches you off. Like, someone was nice. What? Like, we can be nice to each other. It's just so, like, I don't know. And I don't know where I'm going at with this other than just, like, I try to work on that myself, like, of just community and, you know, choosing love in small moments. Like, choosing to. Like I talked about earlier, like, angry face and, like, how I realized I had angry face. Like, I was acting like my mom in moments of angry face. And so just trying to smile in that moment, you know, like, that is such a Simple yet profound shift that I think we underrate simplicity and we overrate ease, and there's so much simple things that we can do to, you know, and maybe that's smiling at yourself, giving yourself that grace because motherhood is hard. And all of these expectations that we thought we were going. You know, like, just expectations is hard. When you have unmet expectations or you're all the stress that goes along with. I don't know, whenever there is something like that's scary, I feel like I brace myself for, like, whatever that is to come, and it's easy. So much easier said than done. But how can I, like, maybe like, give myself that grace and smile on myself in that moment or be kind to myself in that moment and look to nature and. And all those things? So, anyway, I'm going on a tangent with that, Sarah.
• 25:24
  Speaker A: No, no, but there. But they're. But it's not. It's never a tangent because it is all rooted together. And I do believe that it does come down to once you become a mother, these. The connectivity of it all does seem to make more sense. So I don't think any of these are tangents at all. I think it's actually really, really deeply connected in ways that motherhood really illuminates. And it's why I think that, you know, Inchstones was always about celebrating and is not. Was. It's still around. Inc. Jones is still around is all about celebrating the smallest of wins and the smallest of developmental success or the smallest of moments that create, you know, love and emotion together. And I think that becoming a mother, especially when any situation with your child does not have any sort of predictability to it. Yeah. Focusing on those smallest wins, focusing on where you can react in a way that gives grace to yourself and to the journey. Never is the wrong choice. It's never the wrong choice. And you know, Valerie, I'm just so thankful that you wrote this book. I can't wait to share it with my audience. And I really do believe that we are more connected in this motherhood journey than we are different. I think that it is just baked into the process. And I, as I always say, we get to do this. It didn't happen to us. It hap. I'm sorry. It didn't happen to us. It happened for us. And I think that motherhood is the greatest example of that. So thank you so much for the work that you do and for how you share your experience and through your book. To mamas to love.
• 26:55
  Speaker B: Thank you so much, Sarah. It was an absolute pleasure and thank you for all the work that you're doing. This is so important. I absolutely love Inchstones. The concept is so, so powerful. It's so powerful. And I love that perspective of, I don't have to do this. I get to do this. It's so powerful. Right.
• 27:15
  Speaker A: Well, I will be listing. Thank you very much. Thank you so much. And we will be listing where you can purchase Valerie's books on the episode summary. And everyone, have a great, wonderful day. Another day in May celebrating moms. And until next time, here on the Inches podcast, thank you so much.