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What My Son's Autism Diagnosis Taught Me About Myself | Bari Shore's Story · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey, everyone. Welcome back to the Inch Jones podcast. I'm in studio B here, which is really my daughter Milly bedroom, and it is actually exactly where I should be because I was put forth, put in conversation directly with the mom I have here today, Barry Shore, through my dear friend Stacey, Lillian. And what I have been on a mission to all of the month of May, as these episodes come out, is sharing the direct experience, one on one, with other moms who have received a diagnosis for their child, who have had life turned upside down and have risen to the place where they not only want to tell the tale, but also are so confident that in retrospect, hindsight, looking back, it has become an expansive part of their life, not one that has leveled them completely. Is here to share with me about her son Dean and being Dean's mom. Barry, thanks for being here today.
• 0:52
  Speaker B: Thanks so much for having me. Sarah and I just have to say
• 0:54
  Speaker A: we're going to talk in 10 hours.
• 0:56
  Speaker B: Yeah, I need all my time with you. I just had to say that you were one of the people. When I got my diagnosis and I felt totally alone. I, like, went online because I didn't have anyone in my immediate circle who. Whose life looked like mine. And I found you and I thought to myself, there is someone who I can relate to. There's like this community. Whether you know someone or you don't. I reached out to you right away and I said, like, hi. Our kids are the same age. They have the same dual diagnosis. Like, I just want to be your friend. And that community was really, really, really special to me. So thank you for that.
• 1:27
  Speaker A: And that's also a testament to it being one to one to one. Like, I think a lot of mothers and caregivers, we are told, like, did you join a support group? Did you do this? Like, there's different ways to form what support looks like. I've never been like a massive support group person. Like, in a large group, I've never been the mom who enjoys going to a dinner with 10 people. That's just not me. And I think that the ownership of that, from building a support around autism or any sort of diagnoses, you have to go back to, like, well, what serves you best in your nervous system best? Like, you know, one on one conversations with me has always been that sort of calming and peaceful medium. So before I pressed record, I said, I'm going to ask you this one question. It gets the ball rolling. So what do you remember? Day one, after Dean was diagnosed with autism.
• 2:16
  Speaker B: So it was a Slow burn to get that autism diagnosis. I always say, when Dean first came out, when I gave birth to Dean, there were a few moments where it was silent. And I screamed to the doctor, he's not crying. He's not crying. It's silent. Is he okay? And she said to me, give it a few moments, and he will find his voice. And a few moments later, he cried. Yeah. And that was, you know, to foreshadow what his life looked like. So, you know, for the first few years, everything looked like, quote, unquote, normal. He hit all of his milestones, his benchmarks. I even had him evaluated for early intervention. He passed. It wasn't until the pandemic, when I went from working in New York City every single day to being home, where that little voice inside of me that something might be wrong was too loud to ignore. I got to see things I couldn't unsee. And it was also probably the most challenging time to find a diagnosis, because
• 3:11
  Speaker A: that was a time, you know, you laugh when the world shuts down, when you have a child that needs extra things outside the home. We really all felt that detriment. I can only imagine what that felt like if you didn't have that.
• 3:23
  Speaker B: Yeah. And, you know, you and I both have kiddos with this dual apraxia and autism diagnosis. And so also with the apraxia piece, first, I'd never heard of it, Right. So I'm, like, googling what it might be. But second, to get somebody to, like, really get in there in his mouth, look around, like, it just was near impossible. So I got his diagnosis at around three and a half, but started the journey at probably two and a half. And it really. There's something very freeing about it. Cause all of a sudden, you have some direction, and you're like, okay, let's hit the ground running. What are we going to do?
• 3:53
  Speaker A: There's a lot of different answers that I get from different moms. Some people feel relief. Some people feel frozen. Some people feel like the grief immediately starts. And I think where I align with you is that it was. It was. It was relief. But the next right thing was like, okay, now I have an ability to name this. What do we do next? What do you feel like was the. The most. The best thing so you started moving. Was it what you were learning about autism, apraxia? Was it how you were diving in to understand Dean directly more and more?
• 4:24
  Speaker B: What.
• 4:24
  Speaker A: What expanded once that diagnosis happened for you?
• 4:28
  Speaker B: So I think, to be fair, what you just said to me rings really true. It can Feel all of those things, all of the above. All in one hour, all in one day. I completely. That all resonates with me. I went through all of those phases. I went through a phase where I had a really hard time telling people publicly that my son was autistic. I had to sort grapple with that.
• 4:47
  Speaker A: I am so glad that you said that. I'm so, so glad that you said that. Because you know what I talk a lot about is like I built this whole identity on being like Sarah, wonderful mom, you know, lover of New York, travel, all these things. Typical, typical girl mom. And when that stripped away, what you just said is so true, is that it's sometimes really hard to say it because you realize your identity is, is literally changing as you are saying this and you. I know for me I didn't want that to change. I didn't want to be the. I didn't want to be Sarah the autism mom. I wanted to be Sarah the mom that like flies to Florida on a whim.
• 5:24
  Speaker B: Yeah. And I didn't want to stigmatize Dean. I didn't want it to stigmatize us.
• 5:30
  Speaker A: Yeah.
• 5:31
  Speaker B: I mean it's all those, it's all of those things you just said. Um, yeah. And then as far as like what really helped me or like what that unlock was, I guess when I got it. I know I said this previously about you, but really like finding community was a mom in town who was 10 years in and was so generous of information. Talking to other parents and caregivers has always to me been like the number one just wealth of knowledge that I could pull from to help direct me. I've been really blessed to have people in my life with Dean, ABA therapists, speech therapists, OTs who have really helped to guide me in the right directions. But I would go through phases of like deep research and then taking a breath and then jumping back in. And it. That cycle still continues to this day.
• 6:22
  Speaker A: I'm so glad you're naming that because that's what I think everyone needs to be almost validated in. Like that is something that you can't divorce in the process. You're gonna have these bits where you're gonna go full speed ahead. And like, you know, I've done like intensive six week things where I'm like, oh, we're going every day, we're doing this and then you pull back. That, that's like, that's a, that's integral to this.
• 6:44
  Speaker B: I think it's the only sustainable option, at least for myself. I mean, I Have a full time job. I have another child, I have a husband. And you, you can be really focused for a certain amount of time. You can absorb it all like a fire hose. And then you just need to take a minute to sort of absorb it, breathe and move on and then try it all over again.
• 7:02
  Speaker A: Okay. The next question that just rose up for me. Cause I'm again, I'm the first to admit I did think of this. And it still sometimes pops up.
• 7:11
  Speaker B: Did you.
• 7:12
  Speaker A: Do you ever. Or did you ever wake up and go, this is so unfair?
• 7:15
  Speaker B: Yeah, I mean listen, there's to what you said about grief. Like there is just a grieving process that comes with this journey. I think unfair sort of for me translated into like what Dean's life, what I had imagined Dean's life to look like and the expectations I had set for him that all of a sudden you sort of have to recalibrate. What. And that's. I love your Inchstones terminology because that it is like you take joy now in things that were diff. I wouldn't have thought to celebrate them. And now you do celebrations.
• 7:50
  Speaker A: I think that what I find. Cause I definitely had earlier on being like, this is so unfair. Like I never deserved this. Right. And what I am realizing is that it's not really unfair. It's. It's unfair that we live in a world that doesn't know how to translate their reality, who they actually are, into like meaningful purpose as just them being neurodivergent. And that's to me, what's more unfair about it. It's not about them or my role as their mother or your role as Dean's mom. But like how unfair it is to then have to go through it living in a world who. Which doesn't support that difference.
• 8:33
  Speaker B: I think you articulated it beautifully. It's always like, I wish the world could change for Dean. I don't want Dean to change for the world.
• 8:39
  Speaker A: Exactly. Where has your family been changed in all of this? Like as you grew as a mother. But where. Where has that expansive evolutionary process been on not just your nuclear family, but parents, grandparents, aunts, uncles, cousins.
• 8:56
  Speaker B: I think everyone's been amazing and everyone has the intention to support Dean.
• 9:01
  Speaker A: Yeah.
• 9:01
  Speaker B: And that's all I can ask for. You know, I mean, I'm learning things every day, so I don't go in with the expectation that anyone else knows how to immediately react or manage something. But the love is there. And that is like to me the baseline for everything else to work with a relationship.
• 9:19
  Speaker A: I think sometimes speaking it out loud even to people that we're closest to that we realize that we have to become broken records sometimes even to people that love and care for us so deeply. But they, there's a, there's a loving reminder about those differences that even within families and close friend groups there's has to be a reminder like actually I know that your intent's really good. We're, we're going to have to make some adaptations to the plan. And that has for me and it sounds like for you become a reason to almost expand your own communication. Right. Like it's expanded what you probably speak about and how you speak for yourself too.
• 9:53
  Speaker B: The advocacy. The advocacy. How you also have to just speak for yourself. I know that if I'm in a social situation and I've got Dean with me, I am hyper fixated like I am nervous system on making sure that he is safe, that everything's happening the way it's supposed to be happening. And I am not always able to give my full attention to the conversation I'm in with a friend. It could be with a girlfriend, it could be with a family member. So I've had to say, you know, I'm sorry, I'm lost, focused. But you have to learn how to sort of speak up for yourself. I'm very good at speaking up for Dean, but speaking up for myself in those scenarios is definitely a learning curve
• 10:29
  Speaker A: that again that like the evolution of that alongside just be just being a woman and aging too. I think it's like one of the funniest things I, I, I love talking to women that are like in their 60s, 70s, 80s, you know, they're so much wiser than us and, and when I share with them kind of my own journey as an autism mom, they say you sound like me when I turn 60. And I'm like is that a good thing or a bad thing?
• 10:54
  Speaker B: And they're always like no.
• 10:55
  Speaker A: Because I think that this situation has like forced a level of reality and truth that a natural typical female journey doesn't hit until later on in life. And that's a burden. And it's also like a parachute to like much more lived freedom.
• 11:14
  Speaker B: Yeah. And perspective. Right. Like learn perspective that you just would have never had otherwise.
• 11:20
  Speaker A: What I know you've had this happen. I've had this happen a lot where someone goes so and so's kid just got diagnosed. Have you talked to Sarah? What do you tell those people that come into your life or those that you would potentially speak to as a more seasoned autism mom? What do you say to them about those first few days post diagnosis?
• 11:43
  Speaker B: I think the hardest. Mutual friend Sarah Antonato said when she was on your podcast that, you know, she really focuses on staying in the present. Right. So that she didn't let herself spiral into the future. And I really admire that because I was not able to do that. I spent most of my days post diagnosis, and still today, listen, I'm only five years in spiraling about the future. And so I think what I would say to someone who just got their diagnosis is to really focus on the present as hard as, as hard as it is today. Five years later, Dean has made progress leaps and bounds. He's able to do things I never thought possible. He also struggles with things I never expected. So I am dealing with different journeys or different, different objectives and goals with Dean today than I was three years ago. So if I would have spent all my time focusing on what's next, what's next, what's next, it would have been all for nothing.
• 12:43
  Speaker A: So it's, it's, it's one of the lessons that is taught, like, globally is to stay present to the journey and to enjoy. And yet I think what is both guttural and both life giving is that these kids force us to. And it also reminds you that they are still growing. Even people, I, I, I always say, like, Milly and Matt are still growing as humans. Like, they're developing, their bodies are growing, they're changing life. It wasn't that autism put a stop to that. And I don't know what we were, like, conditioned 80s and 90s to, like, think that, you know, if I just like, white knuckle this, I'm gonna, I'm gonna change the course of their development or of their, what's innately gonna happen. Like, Milly going through pre, you know, is prepubescent now. That doesn't have anything to do with her autism. So these systems sit so close that, like, it's a reminder that while certain parts of their development are slower and maybe more have to be much more intentional, they're still growing beautifully and like, how, how amazing it is to be a mom to a child that actually develops and grows, period.
• 13:55
  Speaker B: Yeah, it's a mom. Yeah.
• 13:56
  Speaker A: It's an honor. It's an honor to do. And every tough diagnosis comes alongside that. You know, when I think about having a boy and a girl, do you sense anything different in being like, a boy mom to Dean? Like, is there anything that, that you feel like other moms that have an autistic son that you can speak to on that, because I know there's such a difference with how I am with Milly and how I am with Mac. Is there something that you can share about being a boy mom to Dean?
• 14:23
  Speaker B: Yeah, I think. Listen, I have two boys, so.
• 14:26
  Speaker A: You are a boy mom.
• 14:27
  Speaker B: I am a boy mom through and through. Yeah. One. One son on the spectrum. One who is not. And I think with boys, there's a lot of. First of all, I think even though they are more commonly diagnosed, there are a lot of things that people will say to you. Oh, that's just because if they're a boy. Oh, they have trouble doing that. It's just because they're a boy.
• 14:45
  Speaker A: Like, that happens more. That happened more to me with Mac than with Milly And I'm like, no, it's the same thing. And they're like, he's just the boy.
• 14:51
  Speaker B: The. The words will come late. He's just a boy. I got a lot of that. And so mom still hold onto your mom gut. If you think that there's a delay, there's still a delay. It's not just that they're a boy. And I think also I have two boys, so. And they are two years apart, and they wrestle and they fight, and they do all the things that typical boys will do with each other, and that's okay. And I think that, like, you know, there's this. Sometimes I. I feel that I unintentionally put Dean in this bubble or, like, I want to protect him so. So, you know, so securely, but, like, I want him to have those just fun boy. Like, him and his brother can fight. It's okay. They can wrestle with each other. It's okay.
• 15:34
  Speaker A: Like. Like, sometimes I think there's such this focus on the behaviors, because autism is diagnosed almost 100% based on behaviors. There's no, like, blood work that's done that sometimes, like, I have to remind myself. And I love that you shared that about, like, the wrestling and boys. That's typical. Like, he can pull up autism and still be very painfully typical in other ways. Matt will take whatever Milly has. He doesn't even like what she has. I'm like, you don't even like that toy. Like, why are you taking it? And I'm like, because he's the little brother and his brother.
• 16:07
  Speaker B: Because they're siblings. Yeah.
• 16:08
  Speaker A: And that, to me, is one of the most, like, like, tear jerker moments for me, because I'm like, he's still the baby.
• 16:15
  Speaker B: Yeah, totally.
• 16:17
  Speaker A: You know, and I love to be able to sit and Talk and remind other parents that they're not just these kids that we're trying to remove behaviors and make into robots. They're gonna be an eight year old boy.
• 16:29
  Speaker B: Yeah.
• 16:29
  Speaker A: Their eight year old boyness might supersede their autistic behavior sometimes. Right?
• 16:34
  Speaker B: 100%.
• 16:35
  Speaker A: And I, and I. I'm just so glad you illuminated that in that example with your boys in wrestling and just being typical boys because you never want to have their autism become the only lens with which you see them because you never.
• 16:48
  Speaker B: I don't want it to be his whole personality or my whole personality. Exactly. It's just an aspect of.
• 16:52
  Speaker A: Right, exactly. Before we wrap up here, what would be something that you are really proud of that you have done not from a self care aspect, but more so from what this has taught you to become the best version of Barry?
• 17:05
  Speaker B: I think I just like myself a lot more now, if that's a Milly thing to say. I can handle a lot more in my work life, in my personal life, personal life. I know that I can do hard things. I don't know if you feel that way, but I feel just emotionally stronger. I know I have it in me and I know that if it's not fatal, it's not gonna bother me as much as it used to. I have a different perspective on just what matters. I can laugh at a lot more now. I remember watching Love on the Spectrum and it was sort of hard to watch that first season. But what really stood out to me were the parents because they just had this ability to laugh. And I thought, I cannot wait till I get to that point. I am not there for you today, but five years later, like I can be true that I levity of before
• 17:52
  Speaker A: the, like I like the three things. I always say the words like it's the. The importance in life is like people first, ideas second, things third. And I've never. I know that I don't think at 40, at almost 43, that I would be as planted in people being the most important thing in my life if it weren't for children that that demanded that of me. And again, that's why it's the greatest gift because it forces that present moment of like no people matter most. Then the ideas that people have and then the things that sort of go into your life and that perspective shift of then watching that, like you said, through Love on the Spectrum or listening to conversations like this, I think just augmented and allow you to realize that the greatest luxury in life is actually through the people that we get to love.
• 18:41
  Speaker B: And share it with a hundred percent. And listen, I'm not trying to romanticize. This is tough. No, it's really hard.
• 18:48
  Speaker A: But I, like, I still wiped an 11 year old's, you know, pull up this morning. Trust me, like, it's not, you know,
• 18:53
  Speaker B: I try to explain to people like I'm. I've been living in a sense of a newborn for almost eight years. So like there are things that I'm still doing that I had transitioned on.
• 19:01
  Speaker A: That's right.
• 19:02
  Speaker B: That's much more quickly with, with my older. But it just makes you like, really appreciative of the relationships in your life, the community. I talked a lot about, like finding other moms who get it and just good friends, like just people who love you and care about you. And it makes you so much more appreciative of all those things. Yeah.
• 19:21
  Speaker A: Well, thank you so much for your time today. I know that your story is going to resonate and we will be linking ways to follow Barry and ways to just understand that community can come from one on one. Thank you so much for your time here today on the Interstones podc. I appreciate it.
• 19:34
  Speaker B: Bye. Thank you, Sarah.