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Profound Autism, Powerful Love: How One Mother Learned to Let Go and Lead with Marie Watkinson · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:01
  Speaker A: Hey, everyone. Welcome back to another episode of the Inchtones podcast. You know very well that I am one to celebrate the wins of any medium of connectivity. And I know social media gets such a bad rep sometimes, but there really is something special in the environment of special needs parents, and specifically mothers and caregivers on Instagram, where I do a lot of my sharing of the realities of parenting. Millie and Mac. And that is how Marie Watkinson came into my life just recently, through following and saying hi, I have a son on the spectrum too. I see you and hear you. And gosh, you know, to sound so cliche, it is amazing to get those messages from people. We don't really need much more than going, I see you. So I felt such a connectivity to you, Marie, immediately. Because I think that we get to do this as women and mothers, and especially women and mothers who are entrepreneurs and living outside the confines of just being mothers to neurodiverse children. So thank you for being here.
• 1:05
  Speaker B: Thank you for having me.
• 1:07
  Speaker A: Tell us a little bit about your journey as a mother. If you're, if you are open to sharing about your son and how that journey of being his mom, a mother to a child with special needs or neurodiversity, what does that. What did that give you as being an. As being a business owner and how that moved you forward?
• 1:28
  Speaker B: Okay, well, my son now, Ryan is. He's 16. He is in 11th grade, and he's the joy of my life, the light of my life. Always has, always will. But our journey and his journey is definitely much different. Doesn't look anything like that when I was dreaming about having him or when I was pregnant with, you know, it would be like. And it's bittersweet and some of most of it is just amazing and wonderful. And I would, you know, I love him just so much. And there's. Then there's the, you know, the what ifs and the pity parties and everything else, but the. So if we have to go back here. I've been a massage therapist for 30 years. I had my own crappy. I've done all the things. I worked in day SPAs. And about 20 years ago, I started the first mobile spa vetted company called Spa Chicks on the Go. And I was still living in Manhattan at the time and grew it into a very successful business. And through that, which is a whole other story, I was renight reunited with my high school sweetheart in 2005 because I appear on a reality show. And through that we got back together. We were engaged like within a year we moved to Long Island. We had moved to Center Port, New York. And we knew that we wanted to start a family right away as soon as we got married. So when I was pregnant with my son, it was a really difficult pregnancy. Had developed an infection in my tooth, and I. I think I was three months pregnant. I had to get emergency root canal when I was three months pregnant. And I had to do that without drugs. And I really thought that actually I was going. I mean, to be frank, to have a miscarriage. And then.
• 3:29
  Speaker A: Right. Because it was that it was. That it was.
• 3:30
  Speaker B: It was horrifying. My husband was in the waiting room, so the screams were horrible. They were. You know, these are all the things you go through your brain when you're.
• 3:37
  Speaker A: Yes.
• 3:38
  Speaker B: Like, searching for things. I also had a breathing problem, which later was found out after I had my son that I guess I was in congestive heart failure. But they were just like, oh, you have allergies, or whatever, by the way, because I couldn't breathe. And oddly, when I would look at the sonograms, because, you know, you go for your monthly sign. I don't know why I would look at the sonogram photos. And I would say, something doesn't seem right now. It's not that. And it's not that it's a perfect rendering.
• 4:16
  Speaker A: Right?
• 4:17
  Speaker B: What it is.
• 4:17
  Speaker A: It wasn't that you didn't get the perfect angle of the face or something.
• 4:20
  Speaker B: Right. There was just something that I said, okay, so I had a C section in 2009. My beautiful son. And then I saw that the milestones. He wasn't meeting the milestones that you had. We didn't. I guess we had the Internet, but we had the. What to expect when you're expecting, Correct?
• 4:40
  Speaker A: Yes, exactly.
• 4:41
  Speaker B: What to expect. The first year, you know, you had that book. And I'm looking and I'm like, wait, he's supposed to be holding his head up. No, he's not doing that. He's supposed to be rolling over now. He's not doing that. And, you know, I would say to my doctor or pediatrician, do you think he's okay? Should he go for testing? She would go, nah, you know, he's gonna grow out of it. You don't worry, Mom. She just made me have to be fine. Right. One of those moms that were, you know. And I even said to my own mother, mom, one day we'll. Mom, do you.
• 5:12
  Speaker A: Do you sense anything? Or, like.
• 5:14
  Speaker B: Like, you know. And she said, you're crazy. There's nothing wrong with him and, you know, please, you have a beautiful baby.
• 5:20
  Speaker A: Stop worrying. Beautiful baby.
• 5:21
  Speaker B: Yeah, right. Like, you know, don't. Don't be looking for it. But I knew. I knew in my heart. I don't. I just. I feel like I always knew.
• 5:28
  Speaker A: Mother's intuition, definitely.
• 5:31
  Speaker B: Never underestimate it. Still going to the pediatrician. And she was still like, you know, he's not walking yet. It's okay. And he was only a year old, and he was about 14 months old, and he had a really bad fever or cold, whatever it was. And the typical doctor doctor that I always saw, she was out that day, and instead her colleague was there. So I bring my son in, and I think, you know, he's going to just, you know, talk about antibiotics or he's sick or whatever. And he is looking at my son. He couldn't care less that my son had a fever, that he, you know, he just said, have you talked about the milestones with, you know, his regular doctor? And I'm like, yeah, you know, she doesn't. He's like, no. She said, I see 14 months old, 14 month old. You know, I've been seeing them every day for years. He is not presenting. He's like, it doesn't matter that he's sick.
• 6:29
  Speaker A: Doesn't matter.
• 6:30
  Speaker B: Yeah, he's not presenting. And he handed me the card to, you know, I guess call the county.
• 6:34
  Speaker A: You know, we look at the early intervention.
• 6:37
  Speaker B: Early intervention. You call now. You call today. He said, you call today. So I. I left thinking that I was going to leave with antibiotics, and I left with this card. And I'm. I'm in my car and I'm crying. I'm like, what? What is? Dumbfounded. So then you do all the things. You make the phone calls. You know, I'm a. You know, it's like, okay, we're gonna. We're gonna make the phone calls. We're gonna get. We're gonna get all the things and whatever. So now we start the ball rolling, and there's the people that come to the house to evaluate him. There was a lovely doctor that came over to do the neuropsych eval. And the way that it was supposed to happen was that it was supposed to be evaluated by the doctor for the actual, I guess, autism. He was evaluated by an OT and evaluated by a pt. And the way that the protocol was supposed to be was that whether they found anything or not, which, of course they were going to find something, but whether. Whatever the answers were, they weren't going to do it over the phone. We were going to do it as a team meeting. So they'll sit around at the table and discuss, and then, you know, each one's going to say, you know, what they found and instead, what happened? And at this point now, I think my son was maybe like 16 months old. And it was actually just around now, early September. So it's Fashion Week. So I'm doing a Fashion Week event. I'm at this hotel in New York City. I was doing it, creating a beauty suite for someone. And I look down and I see that it's like the main contact from.
• 8:09
  Speaker A: County case manager or something, whoever it was.
• 8:12
  Speaker B: And I remember going into the hallway to take the phone call. So I thought she was going to call me to schedule whatever.
• 8:18
  Speaker A: Yeah, the round table or whatever that was.
• 8:20
  Speaker B: And instead she drops this bomb on me in the middle of the afternoon. Hi. Just letting you know we got everything back. I thought so. He has, you know. Yes. We're giving him the provisional diagnosis of autism. Or actually, at that point, it's os.
• 8:35
  Speaker A: Yeah, yeah. Pdn. And.
• 8:37
  Speaker B: And I just remember, like, falling to the floor. I'm in the. In this hallway. I'm at work. I just didn't even know. I didn't even know what to do. Like, I. And I couldn't go back in the room because I couldn't. I couldn't. You can't. You know, a lot of times in business, whether you're serviced or an event, I have to. You know, you have to be like this.
• 9:04
  Speaker A: You're representative of.
• 9:05
  Speaker B: No one wants to hear my problems. They're having a good time, and there's brands in there, so I have to just. I don't. I mean, I don't even know what I did. I don't. I don't remember if I went home, if. I really don't even remember what had happened. So now I am in this fog. But at the same time, I never knew anything about autism. What did you know? What did I know? I didn't know. So now I'm buying the books and I'm doing the research, and we have to do this and we have to do that, and I want to get him in a special autism preschool. And, you know, you do. You do all of the things, and you're hanging on everyone's word, maybe has a little bit of experience. Who knows anything, at least back then. I mean, now I think it's so much easier for the moms to create that sense of community. And, you know, well.
• 10:03
  Speaker A: Well, you know, it's. It's interesting though that you say that because I think that there is a sense of even with all that has changed or maybe more information or communities. What you just said though, is that you're waiting for someone to like, hand you this guidebook because you're thinking, my heart's in the right place. I'm asking the right questions. Someone, please, I'll do it. Just tell me what to do. Like I will, I will walk through brick walls and across pools like you're. You get pockets of support or not. We're just begging for a guidebook because it feels like someone went, your child doesn't exist anymore. The child you thought you had doesn't exist. And you're like, well then who are they? Tell me who they are.
• 10:42
  Speaker B: If there were from, from. So from the time he was, I would say 18 months old when he was first diagnosed. Only until recently. I mean, I haven't really gotten the hang of this. Maybe until like 9th, maybe he was in 9th grade or whatever. And I still have my days where I have my pity parties. But it, you know, it became, I just, I became obsessed. It was my mission. What, what are we going to do? What kind of, you know, what kind of therapies are we going to try? I knew because I'm very like skeptical and whatever. I'm not going to go. But there's all these people, oh, you get these vitamins and. Right, right. I knew because I'm in alternative medicine. I kind of know, you know, what are we going to do? What are we going to. Not going to do? So he was in one preschool. I didn't agree with the politics and what have you. So I pulled him from one school, got him into another school, which was amazing. And I was finally getting the hang of that. But now we're gonna go into kindergarten, right? And what does that look like? And is he going to go to a traditional school for kindergarten? Because still at this point he's five, he's not potty trained. You know, he doesn't, he's still wearing a pull up, he has no words, he is stimming, he is, you know, into his videos and things like that. But he is, he's not anywhere like his peers. So I didn't know what that was going to look like. I didn't know what was going to happen for kindergarten. But it turns out the district that we're in, on Long island, based in Suffolk county, the district is amazing. You know, what the heck, I'll just shout it out. Compsawag School district Yeah, yeah. Amazing.
• 12:39
  Speaker A: Yeah.
• 12:39
  Speaker B: And I believe my amazing, amazing program. Amazing people like right from the get go.
• 12:46
  Speaker A: Let me stop you right there because I want to just because you've hit on something that is such a core theme of what I like to share about stories like this, which is it's not that the support is not wonderful or that the, that the school district is not loving and great and you're so thankful for it. You as a mother are still going through massive transformation at every point that you expected it to be this celebration. My son's going to kindergarten. You know, we're, we're, we're starting into this district I've heard so much about. Everything has shattered to that point, so it doesn't even matter. I always say I'm in. You know, in New Jersey we've got wonderful schools for, for children. And it's more about your experience as a, as a mother of a son with profound needs. You are, are not, you are not the mother you thought you were going to be going into this wonderful school. So that just, that's a mismatch for, for people because they. Our expectations are shattered. So you're, I mean you're just that that's a big thing I talk about a lot is like, why did we condition ourselves to think that that phase was owed to us? Right.
• 14:00
  Speaker B: It's true. There was something about being in the, the yes.
• 14:03
  Speaker A: Like the lobby, like at school.
• 14:05
  Speaker B: He's going to go to kindergarten and we start getting the. So we figured out that he was going to be in the special needs class. They had a place. So I'm like, okay, let's try this. So I get the letters in the mail and whatever and you start getting the phone calls because they do the robo calls. It's kindergarten orientation. And it, it happened that this. I live in the town where I grew up. Even though I moved away, but we came back. So I actually know the school is going to. But, But I'm like, if this is an orientation and he's in special ed class that has I think six kids. The orientation is proper. Probably not going to be for me. It's going to be all those other wonderful parents who are and their kids who are in the neurotypical classes and am I going to be able to emotionally handle that? Like this does even came to me. So I literally called up to ask that question. I called the, the, the district. There was somebody in the office and I said, look, should I go to. This is the information that pertains to me. Are they Going. And they said, oh, yeah, you know, you know, the teachers come, there's this, there's that, the kids come, you know, all of it. You know, so I'm like, okay, I'm going to do it. So I go. I sit down in the little auditorium and they're doing their presentation. And your kid is going to do this, and then she's going to do that, and then we're going to have this and we're going to have that. And I'm thinking, none of this applies for my son. So now they're matching up. All right, anybody that had Mrs. That has Mrs. So. And so you're going to, you know, go over and she's going to talk to you and whatever. And I'm looking. And the teacher. There was no one representing the special ed kids. So there wasn't. The teacher wasn't there, I guess was right before Labor Day. And no one could answer. I'm like, well, what does a typical day look like for my child?
• 16:13
  Speaker A: Right.
• 16:14
  Speaker B: Special ed class. And no one could answer that. And they were actually, you know, so, So I had like a breakdown. I went into the bathroom, I had a breakdown. All very emotional for me because it was like putting salt in a row of like, you know, this is the way. You know, this is the way that it should have been. Yes.
• 16:34
  Speaker A: I'm talking your anticipation for this moment and then being bold enough to say and call yourself out, call attention to yourself and your son and how different this is going to be. You're met with not only not an answer, but then the, the, the, the, the. The. The fall of the. The aftermath of the lack of answers and then the spotlight being on you. I mean, there's no way that that emotion can't come out. Right?
• 17:03
  Speaker B: So the early, the early years, as I put them, I mean, I must. I mean, I'm still here and I'm thriving. So. But I still. But I look back and it's like this black cloud. Like, I don't know. Like, I don't know how I got up in the morning. I don't know. I just. I don't even know what happened. And I'm still. Wait. Was waiting for answers or for someone to say, you know, yes, he's going to speak. No one can, you know, no one has a crystal ball. No one can tell you these things. You know, it's just like, I don't, like, I don't know. So I would just hold my ref every year we'd start and, you know, but the first year he was in kindergarten. He had this amazing teacher who actually got him potty trained because that was the problem. Like it. We weren't able to do it at home, but somehow whatever she was doing and whatever we reinforced at home, like that was a really big deal. So it was late, but it happened. We. It. I would always think in our house, like, maybe it's not. I mean, I knew that it was bad, but maybe it's pencil bad because then I was trying to get like little things out of them. I would get like gestures and the pecs board and whatever. But then whenever we go out into the real world, that's where it would like slap me across the face, right?
• 18:24
  Speaker A: Oh yeah.
• 18:25
  Speaker B: Like that's how like just the glaring.
• 18:29
  Speaker A: Of it all, the constant mismatch. You know, we as humans are wired to. To be curious to things that aren't similar. Like, it's like a, you know, we just. That's how our brains work. And it's really emotional when you are not only on the receiving end of that curiosity or stares that, you know, and anticipate that every time you integrate and interact with the world, that will happen.
• 18:57
  Speaker B: There's that saying, you know, comparison is the thief of joy. So, you know, I can't. I don't want to compare my son to anybody else. So it's not. But. And especially now that he's like 16 and you know, kids are dating.
• 19:16
  Speaker A: Yes.
• 19:17
  Speaker B: And he's in 11th grade. So kids are thinking about college and where are they going to go. And there's the party and there's the this. There's always the little times where it gets me. Or sometimes I'll just see like a group of kids on bicycles in the neighborhood. I know. Don't see too many anywhere now. It's not like 70s little clusters of kids.
• 19:38
  Speaker A: Yeah.
• 19:40
  Speaker B: I mean, well, my heart breaks a million times.
• 19:43
  Speaker A: It is because it's like it's this fleeting thing of normalcy. Or again, I. I call it like this conditioned expectation that that was going to be what I lived day in and day out was like, bye, mom, see you later. You know, going to town when. When that's stripped, when that narrative is redirected differently. It is like it is a loss. Like, it's a. It's a loss that's. It's an. It's a. It's like a loss to what you deeply wanted to experience. And we didn't even realize it. I always think, like, I didn't even realize I was. That I had had such a chokehold on that expectation.
• 20:23
  Speaker B: I didn't, you know, when, when, when I was growing up, it. I mean, I don't think I knew anybody with autism or I mean, I guess, I mean, I don't know. Like, so it just seemed like in my world, well, this is what we're going to do.
• 20:38
  Speaker A: And you know, this didn't really exist. This wasn't. And, and it. And again, probably similarly, like, it's not that I was naive to think that disabilities didn't exist. It was that I was naive enough to think that all the choices that I made, that would never happen. Right. Like, not to me. No. I'm conscious and loving and very, very smart and capable of this life that I made up in my mind. Yeah, it's. It's. It's so heavy and I. It's. Yeah, it's the sigh. It's everything in me and it's everything in between. Because like you said, it's might look like just two kids riding their bikes down the street, but that hits us so deeply when we don't even have that as an option. Like, it's not wrong. It's just like that, that, that response of like, oh my God, I don't have.
• 21:32
  Speaker B: I'm gonna cry now.
• 21:33
  Speaker A: No, I'm.
• 21:34
  Speaker B: No, but that, but that. It's.
• 21:35
  Speaker A: But it's, it's just. It I. Is. It's so, so personal. It's so emotional and we don't even realize the expectations of our heart that we put on to this motherhood journey. No one. I just said this in another interview and I sound like the most broken record. It should be like the title of this podcast. My bingo card did not include two children with non speaking autism. The bingo card for my life did not include that. That was not even anywhere close. I didn't even know that that existed.
• 22:08
  Speaker B: The.
• 22:08
  Speaker A: So the. My bingo card of hard. My bingo card of life. I laugh at like my postpartum anxiety with my first child. My, My typical child. I remember thinking, gosh, you really got through that hard part of your life. Good on you, Sarah. Like, you really did it. Like, sit down, Sarah. Like you, you. You need to sit down. This is not. You have no idea. And it was just, I think the humbleizing or the um. It was very humbling and continues to be. But also it sits so deeply next to like sadness and loss. And I, I don't know how to convey that to women and mothers that don't. That have not experienced that because it's such a profound loss. But if you never experience it, you don't even realize what you built up. So it seems like what you had just said, I didn't even know that that would be a part or even an option for my life. And if you don't think that, you will not think about it if it doesn't happen to you.
• 23:09
  Speaker B: Right. And. And even though like, like I said earlier, I had my suspicions that something was up.
• 23:15
  Speaker A: Yeah.
• 23:15
  Speaker B: Yeah. I, when I, whenever I look at like the year of like the first year in photos, I always say, well, that was like, you know, pre autism. Yes. You still had it. I. Right in this fan. You know, I had my beautiful. Still is, my beautiful baby boy. But I had my, you know, and we had all the dreams and all the things.
• 23:33
  Speaker A: Yes.
• 23:33
  Speaker B: And it's not that we don't have dreams anymore. It's just the dreams are really different, very different. And the hopes are really different.
• 23:40
  Speaker A: And they weren't even dreams that you had thought of as a possibility. I think sometimes it's very hard to articulate that. It's not that the dreams that we have now are bad or wrong.
• 23:53
  Speaker B: It's not.
• 23:53
  Speaker A: It's that when you sit with them, your. I always think like 16 year old Sarah to 21 year old Sarah to 25 year old Sarah to then first time mother Sarah. It never occurred to me that my dreams would change so vastly because I don't know who that person is that would've thought that those were dreams to have like, I don't know, someone. I didn't have a model of that. I didn't experience it. So the shattering of what I lost wasn't wrong. It's just that I, I never experienced, I never saw or was met with a story of what that life can. A successful life can look like with that being profound. Autism being a major keystone of life as, as a mother. And again it, it's so, it's like, it strikes just like your heart at such a core because you're not even asking for it to be this perfect play, but to know that it's changed so drastically. It really is like being like thrown into the jungle and go, well there's, there's some sort of sustenance here. I'm sure you'll figure it out.
• 24:57
  Speaker B: You know, I was at one point in such a bad way, I, I'm like, I need. And there, there just wasn't. There were. We live near Stony Brook University. So I'm like, certainly they must have like exactly. Of course they must. Hospital. And I'm like, oh no, we only, we only have support groups starting in September. But like. Like, like, like you. Like you only hit with this, like, once a year or something. There wasn't. What there is now. Join all the groups. So I'm not a particularly religious person, but I'm like, you know what? Maybe let me Catholic. Let me try to. I know that there was, like, a retreat house that was wrong.
• 25:39
  Speaker A: Yes.
• 25:40
  Speaker B: By Catholic nuns. And it's over by the Hudson. Or I don't know, maybe Litchfield, Connecticut, Whatever it is. And I'm looking at the programs and. Okay. And I'm like, maybe that's what I need. Maybe I need, like, silence and I'm gonna go and whatever. So I remember calling someone and saying, I would like to book a retreat. And I guess they were trying to get a sense of what I was trying to get out of it.
• 26:02
  Speaker A: Yeah.
• 26:03
  Speaker B: And I remember crying on the phone and just saying, I need. I don't know what I need. But I. You know, whatever.
• 26:10
  Speaker A: Yeah.
• 26:11
  Speaker B: I laugh about this, but they're like, we don't think we can help you. You sound a little raw.
• 26:16
  Speaker A: Right.
• 26:17
  Speaker B: My takeaway. I'm like, even the nuns don't want me.
• 26:20
  Speaker A: Exactly. Even the women of the cloth said I'm too much. I'm Catholic, too. That's hilarious.
• 26:32
  Speaker B: That's hilarious.
• 26:32
  Speaker A: They're like, yeah, we. We don't know.
• 26:35
  Speaker B: Like, no. Like, no, we're good.
• 26:38
  Speaker A: Like, you need something bigger. That's hilarious.
• 26:42
  Speaker B: Yes. So I guess. So let me tell you where Ryan is now.
• 26:47
  Speaker A: Yes.
• 26:47
  Speaker B: So we went from. And I have. I have a photo. And I realized I don't. This was. Maybe he was 10 here. All right.
• 26:56
  Speaker A: This is such a handsome little man.
• 27:01
  Speaker B: So I'm gonna tell you some wonderful things about my son.
• 27:05
  Speaker A: Yes.
• 27:05
  Speaker B: He's always smiling. He's always happy. Unless he's having a meltdown. But otherwise, he's got the smile. He's always laughing. And I know all moms, neurotypical or not, you're all gonna hate me. The one thing gift that my son gave me was the gift. Gift of sleep. From the time. He always loves to sleep. And that's same with mine.
• 27:33
  Speaker A: I agree.
• 27:34
  Speaker B: And they would say, oh, you're gonna see. There's gonna be a time he's gonna be up. You're like, no, no. He's like his mother. He loves to sleep. So thank you. Thank you, Ryan, for being a sleeper. He loves music. He loves travel. Our family has a second home upstate. And he loves it. He just loves to be just with nature and the woods and the quiet and he loves it. I have another friend who loves going to the lodge. He loves the beach. Body calms down at the. Yes, he just, he's like another person. And he loves music. And he's beginning. Oh, he loves food. Take him. Yeah, My husband and I are both foodies and he's always been a foodie. So he never had the typical autistic. I'm just gonna eat two things. Yeah, he loves it all. Except for peaches. He doesn't like peaches.
• 28:31
  Speaker A: Yeah, we'll give it to him.
• 28:33
  Speaker B: But where he's at otherwise he's so he's six foot three, he's over £200. He's like a gentle giant. He speaks, but not in the way that you think that he would. So he is heavily echolalic, which means that he repeats things from television shows or whatever and tries to put them in appropriate, I guess, situations. So really if you're asking him, you could be thrown off because you could be like, well this, this, this kid's talking because he'll recite Shrek or whatever because that's the way his pathways are. But then you'll say, hey Ryan, how is your day today? The spontaneous speech or him being able to make the sentences, that's where the difficulty is and the hardship. But we, we feel, figure out a way where he'll maybe start talking or taking something from a show. I'm able to read his mind so like it's less difficult. And since I'm able to understand him more like he was having, I mean horrible, I mean the poor kid, no one was understanding him. He. So we'd have these horrible meltdowns which he still has, but not as much because I guess it feels like somehow he has like an outlet to speak, you know, to somehow convey what it is. But he still needs full assistance ADL from being in the bathroom. He needs assistance with that. Cannot take a shower on his own. He has no concept that we're gonna. To turn the water on. We're going to test the water, you know, all of that. So yes, I'm still. So I'm showering a 200 pound, 6 foot 3 man. Essentially. He's not able to dress himself. So we still have to do that. We recently had, we're doing like a lot of neuro neurological testing. So you know, he, they, I guess they quantified it as, you know, severe autism. And they also placed with the learning disability in there as well, a little bit of ADHD for some fun. And all I can do for him Is just get like, I'm trying to just figure out what makes you happy. Yes. What's the best version of yourself? Like, what is it? And literally like I. There was a show on television, I think it was like on PBS. It was at least 10, 13, 14 years ago, about different neurotypical people, adults. And how this one man, actually, he was brilliant. He was on the spectrum and he was the one that. Ace Freely's guitars for Kiss, he came up with guitars of that, but they had. And I'm losing my train of thought. Oh my goodness. This one person, this man, he was obsessed with vacuums. Was obsessed with like taking them apart and putting them together. And he knew like the Hoovers and the this and he knew the whole history and used to go to vacuum museums and just was obsessed with it. So for him, and it may not be for somebody else, but for him, him the ultimate job was to vacuum at hotels where he wore a backpack vacuum. And he was doing what he loved, which was he loved everything about vacuuming. And he did it and he did it. Well, he probably is still doing it somewhere like that. Like that's amazing, you know, if that's what it is. So I'm trying, I'm trying. Like, I don't, like, I don't know if he'll ever have a job. I don't know. Yeah, I mean, I don't, I don't know. He has zero concept of money numbers. He can count. But the it, you know. So now we're at the point where, yes, he's in 11th grade and be looking at colleges and figuring out majors and doing all of that, that. But what his future looks like is that with our district and because we live in New York, I believe he's left stay in the district until he's 22. So what the path will be, I believe, is that next year when he graduates, that's when he'll, I guess, walk with the cap and a gown with this class. But it's just mainly he doesn't get any, A. A diploma they call it. Like, it's not.
• 33:38
  Speaker A: It's a certificate of something like certificate.
• 33:41
  Speaker B: Of completion or what have you. But then he's able to stay on within the district, which is what we want. Because then if there's any type of vocational training or anything, you know, you kind of want to stay within the district because then, you know, at 22, then that's a whole other know, jumping off the cliff. But at least now we have, we have the supports of the school and I I don't know why I did it so early. I don't know how I do it. And I, I, I thank God he was seven years old. And I'm like, I had to look at the big picture. He's not growing out of this. No, not. Yeah. Anything that we're growing out of.
• 34:22
  Speaker A: No.
• 34:23
  Speaker B: So I, everyone's like, oh, you wait till he's 18 to apply. Apply for, you know, Oudd and the Medicaid services and all of that. And I thought, no, like, why not now? Like, why not apply for it now?
• 34:39
  Speaker A: Yeah.
• 34:39
  Speaker B: And that's a whole other process and a whole other podcast for the drama that they put you through. So two years of drama. And I'm sure you've been through it. Like, Like, I'm an intelligent person. I have my own business. I know platforms, I know all the protocol system. The system is broken. What's going on? It should be easy. And there were so many times where I wanted to scream and just be like, the heck with this. Like, it's not worth it, like, this much aggravation. But then I would, but then I would, you know, put that aside and then, you know, continue onward, because the process was just grueling and aggravating. It was quite the process, but it took two years, but we got in. I have the most amazing care manager, and I'm almost forgetting the title. She's the one that guides me through everything. She's just incredibly knowledgeable and wonderful, who also has a son on the spectrum who's a few years older than my son. So she literally goes through everything just for before. Ryan is. So she's. Yeah, good, like, you know, beacon, you know, to kind of, like, help me. And so we're really lucky. So now he's vetted in the system because now I'm hearing. And it happened shortly after, you know, now I think that they just don't do it before 18.
• 36:10
  Speaker A: Right? No, yeah.
• 36:11
  Speaker B: I mean, it's becoming impossible in their whole thing, everything. So I'm just so glad we have that. The puzzle done with. So then with that. I think before we were talking about, like, how does it, how does this affect your business or how does it just affect, like, your. Yeah, let's, yeah, let's really go there.
• 36:28
  Speaker A: Because I think that I, I, I, I really try to allow for the specifics to really indicate that the life, the transformation that you've gone through and how that has, it does. It has deeply affected your entire life.
• 36:44
  Speaker B: Right.
• 36:44
  Speaker A: Not just.
• 36:45
  Speaker B: Not when, When I became pregnant. I mean, I don't even know if we really had a plan. Everyone just said, it'll work out everything. I wasn't really sure it was going to work out or whatever. And then as the. The first year, my husband's a contractor. You know, he makes his own hours. He, you know, does what. Whatever. And then with my spa event business mainly, I. I can work from home. You know, I'm creating contracts, I'm doing the zoom calls and, you know, doing pitches, doing podcasts, do all that for my home office. But then there's the days that you actually have to physically go in and do the events that you've been, you know, you do it. So. But it's sporadic for me because some weeks I'll have seven events in one week, and maybe I'm staying in city, but then I may not have any for like two or three weeks and then maybe the fall, you know, so it's just always this, you know, so the only way that it's worked was that once we. Once we knew that my son had the issues and that he had to be in a full time, when actually before he was in the full time, he had to have all the services were done at home. I forgot about that. So you had to see it. That came to the home. The ot yeah, everybody, you know, came here. So one of us always had to be here and be present. So my husband, who I. He's just so amazing. And if we thank God, there's like a. A partnership, we've just always just been like, okay, he's just like, you know, I've got it. Or like, we would do the math. And I'm like, you know, I can't not do this event or do this. Like, you know, you're doing the math. Okay, well, you're making more money over there, so you go do that. I'll. I'll stay home with Ryan. So really, my husband was home with him until he went, you know, he had gone to kindergarten because he was there to drive Ryan to school, to pick him up and like, do all the things. I still had my own. It was so. It was easier for that for me in that way that he was there to help. My mom is nearby. And then for the last few years, maybe it's been the last seven years because we have respite workers in comphab. I've actually been able to hire my friend's daughters who are combat. I love that.
• 39:13
  Speaker A: Yes.
• 39:13
  Speaker B: So they knew him anyway, and that's what's helped us. Like, okay, you know, so. And So's going to get him off the bus because we're both at work, and this person knows him because she's like family and will take him out for pizza or out to a movie or walk on the beach or, like, just, you know, get him out of the house and do things or take him to his classes. So that's. That's been an enormous help. And some days I don't. You know, some days are easy, and some days are really hard, because some days I may have a Zoom call scheduled, but he's having a complete meltdown, and he needs you and he needs me. So sometimes you're trying to navigate that, or sometimes I'll be in the car and I want to take the work call. And it used to be cute. So I used to see. Oh, you mean.
• 40:08
  Speaker A: Right, right. Oh, say hi in the background.
• 40:11
  Speaker B: But now you don't want to hear.
• 40:14
  Speaker A: You know, I always say it's like the. You've outgrown cute. We're hitting that phase. We've outgrown being cute. Well, yeah, and that's this, like, for better or for worse, you know, you start to not be a toddler anymore. It's not cute.
• 40:30
  Speaker B: Right. So. And. And that's the other thing we're navigating as well, is that. So he is very affectionate, and he. If he likes you, he has an affinity to, you know, try to grab your hand, and he likes to do, like, little hangings and things like that, or he may try to kiss you, oddly, he likes to smell people's hair or whatever. And he was really cute when he was five, but now it's invasive. It is invasive. So even, for example, I had a dear friend over for dinner the other night. She loves him, and my son is sitting next to her and, you know, doing all the things I could see. After a little bit, I was just putting my. Because I have the empathy of, like, okay, she's fine. You know, she seems fine with it, but he really is in her personal space. Is it like. Like, it's cute, but, like, now it's. Is it really cute? You know, like. Like, I'm so. Exactly. Honey, come over here and sit next to me. I think he got, like, a little, you know, upset about that, but it. So now I'm trying to. I. You know, I'm struggling with what's. What's appropriate for this in the direction.
• 41:46
  Speaker A: Of that and how to mother through a phase. I mean, this exact example is. Is so beautifully articulate because it's so specific to you. And To Ryan and to your friends that love you like family. But it's also so universal for mothers in situations like us because what you just described is a situation that no one ever anticipates being an experience they have to navigate in motherhood with a big man. It's just so, it's just so unfathomable that whenever you get to do it, which I believe that we get to do all of this, I believe it so much because it's allowed me to become, I think, the best version of myself. But when you actually speak it as someone who experiences it similarly in a different, obviously environment with my children, it really does hit this cord of like, no one ever expects to have that reality. And so it does create slices of pain. It just does.
• 42:57
  Speaker B: How old are your children now?
• 42:59
  Speaker A: They're ten and a half and eight. So we have, you know, and the only constant is change. So there's, you know, as I'm sure you could, as, you know, with your son being older, you know, I got that first swift kick to my hip when changing his pull up a few days ago and it got a big old bruise on my hip bone. And that wasn't from roughhousing and playing football with him in the yard. That was from being in bed changing his pull ups so that the feces did not get on his wall. And that, that truth is hard to have the majority of society and other mothers accept. Right. Because it's cute if you were playing tackle football with your 8 year old and got hurt. It's not really as cute of a story when the bruise is above and you're at the gym and people are like, oh God, what happened? Yeah, my eight year old is getting stronger than me. I can't hold him down because there'd be feces on the wall.
• 43:51
  Speaker B: Ryan was always a big kid and always really strong if he was in the middle of a meltdown, even when he was 5, I mean, he had a lot of power in him. And I remember thinking, because also when I, throughout the whole diagnosis and everything, I was eating so I gained like.
• 44:06
  Speaker A: Oh, I know, yeah.
• 44:08
  Speaker B: So at one point I was just completely like debilitated. And I was thinking, oh my goodness, if I can't handle him now, this age and this weight, how am I going to handle? And I didn't know. And you know, so thank God. I, like my husband and I, we lost weight and we've been working out because it's almost like untrained. Like the thing with training for Ryan.
• 44:32
  Speaker A: My partner's at the gym right now, because that's what I mean. He. And he's. I'm 42, he's 49, and he's a former Marine. He's a big, burly man.
• 44:41
  Speaker B: He.
• 44:42
  Speaker A: And he's been, you know, he's always fit. Yet the directive of that fitness level now is not about him feeling like a strong alpha. This is solely to be someone who can handle the strength of Mac.
• 44:58
  Speaker B: Yeah. And it. It, Yes, I totally understand it.
• 45:03
  Speaker A: We have to go. But I. I want to thank you so much for being so vulnerable about your story. And I think that. I hope that the success in your business life only is so deeply reflective of what you've so consciously done in motherhood, because I think that there's a lot that translates that people don't even see, which is a deep resilience and a deep desire for real purpose and finding the traits and the gifts that you have just as Marie, beyond being a mother to add to this world. And I hope what feels like I could absorb is that something spotchik on the go is not just because Marie came to this world. It's also a reflection of the depth and care of what you've built, just as being a mother to someone and a child like Ryan. So I thank you so much for that and for all your reflections here today.
• 45:49
  Speaker B: Thank you so much.
• 45:51
  Speaker A: Thank you. Well, more stories like this, and until next time on the Inchtones podcast.