Latest / Inchstones with Sarah | Autism Advocacy & Caregiver Stories / Inside the Emotional and Family Journey of Raising a Child with Autism & Neurodiversity

Transcript

Inside the Emotional and Family Journey of Raising a Child with Autism & Neurodiversity · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey, we are here today with my friend KC Artmenko, who again, the world is so, so, so small when you boil down to the salt of autism parents. KCand I actually connected through a college friend of mine, which also reminds me that there are many paths and there's many things that are in the cards. Well before I even realized that profound autism was going to be the hat that I wore as a parent. KC is a mother of four and her son Blue has autism. Like Millie and Mac, we live very parallel lives here in central Jersey. What I wanted to share about our combined story is that the dynamics of a family when profound autism enters the equation is just as profound as the diagnoses. So, KC, welcome to Inchtones today.
• 0:44
  Speaker B: Thank you. So I was in the car like an hour, no, half hour ago with my two oldest kids who are boy, girl, twins, and they're three years older than Blue. And I was picking them up from swim and I was on a call about Blue. And so they got in, into the car and were quiet, except for the fact that I had forgotten to pre order their pliables. So I did that and then they shut up and they listened to this call. And when it was over, I started crying and I. I said, guys, like, these are happy tears. These are not unhappy tears. I just met someone who I think could really be helpful to Blue. And sometimes we have to talk to a thousand people to get to somebody who, who's going to be helpful. And I'm pretty open with my emotions and my kids are very aware of what we go through with Blue. Right. He lives in our house. But anyway, that just happened this morning. Like Monday morning, first week of everybody in camp, not at school. And now here I am with you. And they were asking me, well, how do you know Sarah? And I said, well, you know, through our friend Laurie. And they said, well, you owe Laurie a big thing. And then they said, and I better get a shout out. So, William, Daphne, here you go. So there you go. So now I'm done and we can do anything else. Yeah. Dabney said, some days I take care of Blue more than you do. You can say that out loud. Wonderful.
• 2:03
  Speaker A: And own that. Deb.
• 2:04
  Speaker B: It's true. I mean, it's totally true. Yeah. Sarah, you asked me what do I want my title to be on this, and that's a big question. It's a good question. What do I want my title to be? I mean, I don't know. Like, this is a role that we did not choose, that you could not predict. Like I've said many times, like, if you had asked me 15 years ago what I wanted my future to be, I would have said, you know, stay in the city, keep working and have one kid at a time. And I didn't get any of those things. And I'm perfectly happy. But you have to adjust and move on. Right.
• 2:44
  Speaker A: And agility is something that I wish every family, school, district, counselor, therapist talked more about because we now have agility to work through that. You have the capacity to call a thousand people, to find the right care and be overwhelmed with emotion and happy that you found it. And that's not, that's grit, right? It's grit. You can't, you can't purchase that. You can't say, oh, gosh, I wish I had more grit about this. I wish I had more agility. You have to do it.
• 3:09
  Speaker B: No, you can't. My, my twins were very premature and they were very weak when they were born.
• 3:17
  Speaker A: Yeah.
• 3:18
  Speaker B: And I was so not in control of that situation. And it was the first time in my life where I really, like, I could not dwell on it. Right. My parents are so steadfast to me and adjust around me to help me for my whole life, but they were the worriers. And I was like, I just have to put my head down and like, have faith and one step in front of the other. Right. And like to bring home two medically fragile babies at the same time. I didn't have time to worry about it. I just couldn't. And you know, Dabney was on a heart monitor for, I guess, eight months. And Willie, so respiratory week that he was in the PICU for every winter for three years. And you just have to, you don't have time to feel sorry for yourself. You just don't. Right. And so then by the time I had Blue, that's my fourth kid in three years, you really don't have time for anything. But I knew when I had Blue that he was not the same as my other kids. But we knew it immediately in the nicu. One of those nurses said to me, casey, this baby does not behave like a 35 weeker of yours. She'd seen three of them in the last year and a half. Yeah. So they, we knew, but nobody would listen to me. And so I think in the first year of Blue's life, I took him to 21 specialists and just nobody would listen to me. My mother in law is a speech pathologist. He, you know, vocalized. You know, KC, you recognize he's not even babbling. I said, you're right, he's not. We had him in, in private speech at 10 months old. He was in as many as 10 therapies a week before he was one. And we just went from there.
• 5:00
  Speaker A: So I think about two things that just arose and you sharing that one. Mother's intuition. It should be, I believe it should be seen as a data point. There was an innate knowing that I had of a pattern recognition like. And I believe that some science is. Pattern science is, is, is proving that there's a pattern to something. And we say this qualifies for, you know, X qualifies for this diagnosis. Patterns recognize, I believe, as a mother's intuition. Do you believe that the pattern of your own body almost realizing that you had to do the next right thing for the twins gave you the skill set to do that for blue?
• 5:32
  Speaker B: Again, not by choice. Not the title I wanted. Right, right.
• 5:35
  Speaker A: But your body, your body got primed.
• 5:38
  Speaker B: Yeah, I mean, I can do the bare minimum, meaning I can check everything off the list and get it all done. Is my house still gonna be a mess? Yeah. Like, am I ever gonna get to clean out the bin of hockey uniforms that we don't wear anymore? No, like, probably not. It's just you have to prioritize and force rank and your kids are always gonna be first. Right. And like, I'm a list maker. I'm a paper list maker. I went, I went to a girls school in Summit called Kent Place that produces hyper organized taskmasters. And I remember like my filofax was my like, yes, be all end all in high school. And now I carry around like a paper like notebook because I still have to write out my list. And yeah, when you force rank all those things, you run out of time. Right. Like you and I are here. I sometimes have to write shower on my list or it doesn't happen. You lose that time if it's not pre planned. Yeah.
• 6:33
  Speaker A: So I'm very aware of that. I don't, I don't know if you feel that, that the, that the inability to press pause even for five minutes on the ticking of time sometime can, I mean, I'll be honest, I can get, I can become debilitated by that. Yeah.
• 6:48
  Speaker B: I mean, calendar anxiety is real. And there will be times where, you know, you get invited to something and it's something fabulous that you want to go to, but the invite comes in at a time where you're just maxed out and you're like, I say no to everything right now. Right.
• 7:05
  Speaker A: Right. How. How does that. How does that straddle your emotional desires? Just as KC, as a mom?
• 7:11
  Speaker B: Well, I guess one of the ways that I've really tried to parent my other kids is to recognize that it's not their choice that I had four kids in three years, and it's not their choice that. That I have one kid that requires more attention than. Than the others. So if my kids want to do something, I say yes at all times. So that calendar gets prioritized again over mine.
• 7:36
  Speaker A: What. What do you think other mothers would understand about that prioritizing and what that looks like when a child like Blue, Millie or Mac is not the first, he's not the second. He comes before, you know, other siblings. He. He came into a family that your twins didn't come into. Right, Right.
• 7:52
  Speaker B: I think that the greatest gift that I have given Blue is Willie and Dabney and Turner. And if I could have five more kids, I would. For Blue. Right. Like, my job is to surround Blue with people who love him. And I think that actually, as a special needs mom, it is the. The hardest piece of advice that I could give another mom is have another kid if you can, have more, if you can. Because what. What you have is all consuming, but the capacity to love and be a part of something bigger and a family is so valuable. Like, I. I was told I couldn't carry more children after Blue, so that was the end of that. But, like, I'm just grateful every day that he has Willie and Debbie and Turner. Funny. Like when. So Dabney and Willie. Dabney started in. In private school this year, and Willie is going to private school in the fall. And so I've just gone through the application process for the last two years. And you have to write a parent statement about your child and parent statements.
• 8:54
  Speaker A: We know nothing about that.
• 8:56
  Speaker B: Right, Right. And so. But I've done it for one kid, but I hadn't done it for. For these two. And I thought, you know, it's impossible to speak about either of my children without giving the context of Blue because it's so central and innate home life and who they are as people. Right. And so the level of empathy that my children have is something that you wouldn't wish on somebody for these circumstances or that you couldn't predict, but it comes from living what they live every day in their home.
• 9:29
  Speaker A: Correct. And I think that something that I would never again. I had envisioned this set of sisters when I realized I was pregnant with Millie when. When Morgan was two and a half. And these pigtailed Little blonde girls running around, you know, Central park and the zoo was like it was happening. We were going to the Brownstone school and we were, we were, we were moving along down this life that I had completely fabricated in my mind. I would never have chosen it. And yet what Morgan get to become because of their siblings, I know that 99% of their peers are going to hit strides in things in life that are going to grate against their ability to have an emotional capacity that is already innate in those three that I just mentioned.
• 10:15
  Speaker B: Yeah, yeah, it's true.
• 10:17
  Speaker A: And they will have some sort of resilience, some sort of ability to have a macro view on life that will allow for some things to probably beat off a little bit easier.
• 10:28
  Speaker B: So. So not only do our kids have that Sarah, but. But I have this self awareness of how has helped me as a person. Right. So Willie and Dabney and Turner play a bunch of sports and we live in an area where people care a lot about youth athletics. And that could be a podcast for another day. Parents who put so much value in these sports. I know myself well enough to know I could be completely caught up in that and have a loss of perspective and be a different parent than I am. If I had four kids like my first three, I might be pressing, pressing, pressing, counting accolades. And thank God for Blue because he is my reminder of perspective, but he has made me better and I'm able to parent the other kids because of that.
• 11:24
  Speaker A: I think the idea that we are so fully whole just in who we are and then we're birthed into a family and that he is 100% his siblings brother, it is never going to be able to become divorced from that reality. I did not grow up with a, with a sibling with profound special needs. So just the idea that I was in my third decade of life, it's harder to change that. So our children actually are getting a perspective that's becoming more. You want to talk science? Like that's becoming coded in their, in their wiring.
• 11:55
  Speaker B: Look like having to tell your child no is not a bad thing, right? And, and kids get it right. Like my, my daughter was invited down to the shore today and that's a really lovely invitation with her friends and I can't get her there. And I said no, I cannot get you there. I'm sorry. Like summer school starts today for Blue and I can't be on the road. Like I have to be near to home and you know, new things and transitions are hard. And she just said okay, you know, she, she Fights me on some things, but she understands that, and that's hard. Saying no to our kids is not a bad thing. Like, my husband Billy always says that the hardest thing we have to do as parents is to say no when we don't have to. And what he means by that is we have the ability to offer our children everything. We are extremely fortunate. We live in an area where everything is accessible to them. And saying no by choice is a hard thing to do.
• 12:51
  Speaker A: You mentioned that your husband's leadership in that capacity. How has your marriage been led by Blue?
• 12:58
  Speaker B: Again, he didn't choose it. We adjust. It's a reminder that I tell my children all the time, like, when things get really hard with Blue and you know, you have these like, stretches of good, and then like, something will happen. It's usually something public in the community that sets you back and that's difficult to process and you have to work through it and your kids are aware of it in those moments. I remind my children how much harder this situation would be if your father wasn't my person, if we didn't have each other. And also people don't want to talk about it, but like money, right? If you were a parent of special needs and you didn't have the ability to have childcare so you can take a break or outsource things that you really don't want to do so you can be with your child or find advocates beyond yourself for your kid, I just cannot imagine how hard that would be.
• 14:03
  Speaker A: That's one of my biggest missions. And all those people, people have been saying to me recently, well, what do you really want to do? I mean, you're sitting here able to host a podcast and I, I have been probably overcompensating and checking my privilege in that capacity, going, yeah, I'm able to press pause for a few hours a day to do this because I have the system set in place and because I have the ability to outsource childcare, respite care, you know, people to be on that team and in specialized care. I would love there to be more acknowledgement from a society standpoint for people that can't afford that. Like, I mean, when you talk about historically, I mean, it's guttural and my mouth like flushes with saliva to say this. In reality, children like Millie and Mac were put away. They were put away or they were at least acknowledged to the sense of like, if you can't pay for the one on one privatized care, 1960s or 70s, like, that's the Only option. And I when you them back in the home where they should be and they've always should be, we have to acknowledge from a society standpoint that not everyone is going to be able to have their central nervous system calmed by an extra set of hands. You know, and then you think about the onboarding. I mean you and I have talked about this before. It's not just as easy as calling up the sitter that's 16 years old down the street to help with Blue. That's not reality. That's actually safety. I mean that's a life and death thing for you. And I. Yeah. Know that that is a part of this broader conversation that I'm hoping to really push forward. Is that the option for the advocate, the option for the respite care, the option for the therapies that might not seem as mainstream for autistic children, but you know in your gut that you want to give it a try for your child? I think that that should be available. I just, I just do. I think that that should be available to all.
• 15:43
  Speaker B: Yeah. I mean we get our like once annual check in call from Union County.
• 15:48
  Speaker A: Yeah.
• 15:49
  Speaker B: Making sure that we're aware of all the services.
• 15:51
  Speaker A: Right, right.
• 15:51
  Speaker B: At the, like, invariably at the end of the call, the person who means well says, wow, well you've taught me a few things today. And you're like, yeah, right. And that's a tricky thing. Right. Like I have not been able to have any government services or assistance work for us because I just like, I quit on the paperwork. I'm just like, I can't do this. It just shuts me down. I just don't have the ability to do it anymore. Right. And so like respite care doesn't even work for us because, you know, I don't have a family member who would take money for Blue or has the time to do that. That's just not the way my family operates. My family helps me all the time, but not on a paid regular schedule. And then some of the people that help me who are incredible with blue, this is a different topic, might not be legal in this country and then can't get respite care because we've got to deal with the government again. And so you end up in this spiral. So you just walk away from it.
• 16:47
  Speaker A: You walk away and say, what can I control? The power of it all is that you do have to choose where your bandwidth is and what you can control. And the soundtrack I always just like play in my head is if there's an option to try, and I have the ability to attempt it with Millie and Mac. There is nothing that's holding me back from doing that. And I'm not looking for it to be a fix. I think I'm constantly looking to reorient my children's ability to. To push forth within their own minds and bodies.
• 17:17
  Speaker B: Every special needs mom is taxed to their limit. Right. And yet if they meet someone else, there is a level of understanding and respect, but also prioritization of if this person calls me like I'm there. Right. And I even saw that when the twins were born because of how needy they were, because of how long they were in the hospital, people started proactively reaching out. Can I be helpful with this experience? Right. And, like, I receive a Christmas card every year from someone who has twins, and every year she writes the same thing. I will never forget how good to me you were when my kids were in the hospital. And, like, I don't even remember it, you know? But there are people in my life who have been so supportive, and their children's needs are different than mine. But, like, we have a connection. Right. So, you know, you live in Westfield, and I grew up in Westfield, and a couple of my closest friends are moms like that, and their daughters are in their 20s now. But. But that is something like. We had a really negative experience, I should say. Blue is amazing right now, and we're in a good spot.
• 18:21
  Speaker A: Yeah.
• 18:21
  Speaker B: But there was a really negative experience that happened recently in public, and I wasn't there. He was with Billy and Willie and Dabney Turner and I were coming back from some tournament. I don't even know what sport. But we. We were going to meet them at dinner, and when we got to the restaurant, they were already gone. And so we came home and my husband had completely shut down. Like, went to bed, couldn't talk. And that is what I do when. When it hurts so much. But this was a different experience for me. I was angry. I was really, really angry to see my loved ones hurting. Right?
• 18:56
  Speaker A: Yeah. Yeah, yeah.
• 18:56
  Speaker B: And then, like, we were in. In like, a spiral of, like, two bad days with blue. And I finally called my friend and said, like, yesterday was so, so shitty, and I wanted to call you to come. I was going to come to you. Her daughter's less mobile than Blue. I was going to come to you and have a drink because I just needed it, but I couldn't talk.
• 19:19
  Speaker A: Yeah.
• 19:19
  Speaker B: And she said, I wish you had called me, and you could have just shown up and had the drink. And not talk.
• 19:25
  Speaker A: I mean, I think back about. You strike a chord of two episodes that I recorded with my best friend who I said, she didn't even do anything. All she did was say, I'm here. That's it. She never. It was I. When she reflects upon those moments that. That still happened. She lives far away. But when you share like that, it's. It's a reminder that it's not about the conversation that transpires from. I just need to be in your presence. And it. And it personifies the unspoken connection of, see you. This looks really hard. I have no idea what you are feeling, but I see the depth of what that pain looks like. And that is, again, you cannot put a price on that.
• 20:11
  Speaker B: My parents, like, one example of how they adapt to support me is, you know, they used to live right here. We moved here to be near to them, and now they're in Florida for. For the winter. And my mom's like, I feel left out. I need to know what's going on.
• 20:26
  Speaker A: Wow.
• 20:27
  Speaker B: And I was able to articulate that. I can. It's what we talked about. I can get through the day. I can manage. I can compartmentalize. I can check things off the list and I can process and move forward, but I cannot recount it all because that hurts too much. I can't do it all. And so they have come to accept that I can't share sometimes. I just can't. And so then, you know, we go to Florida and we go a lot because their home, they have set it up so that we are comfortable. Blue is happy, and they just take care of me. They cook for me, they clean up after my kids, they play with him, and I can just sit there. And even then when I'm in their presence, they don't make me talk because it's just too much sometimes.
• 21:13
  Speaker A: Yeah. And it's the real. And I think that moving through reality without having to communicate actually is this funny byproduct of having. Well, specifically Millie and Mac, who really don't use, you know, like, verbal communication, that it reminds me that we don't. All we people that have the ability to speak and talk and communicate, we don't even need to Sometimes we should. We should rely on the fact that our presence alone is worthy of being seen, understood. And that we're still going to be loved for that. And they see how much we're doing. I. I always take like a deep, deep breath when my. Specifically when my dad's around because he leans in so big with Mac. And as a man with another, his grandson and seeing him just be with him, knowing that I am his Sarah Pie, it's like I can't purchase that. I can't buy that. All I can, all I can say is like, thank you, thank you, thank you to my parent, my, my dad for that. And I mean, I sometimes text them, thank you so much. I love seeing Max smile with you. You know what I mean? It's, it is something that. To just be in the space of someone who goes, we don't have to talk about this. Yeah, I'm gonna love on them for just them being there. And then the byproduct is that you get to sit down.
• 22:22
  Speaker B: I try to think about the positives all the time and like, how supported I am and how I can help Blue. But I was thinking, you know, one of my closest friends, I say to her, you know, your generosity is so immense. And it's not just money. It's like, I will take care of the logistics for you. And then you decide, like, she will say, let's go away for the weekend. And. And then the next thing will be, you decide, bring kids, don't bring kids. Bring witch kids. Bring help, don't bring help. And then everything else I'll figure out. Right. So she's like, whatever makes you comfortable in this moment is what I want for you. Like that is generosity of spirit.
• 23:00
  Speaker A: Was that Laurie? That sounds like Laurie.
• 23:01
  Speaker B: That's what Laurie does. It's not, but it could be. But I am so fortunate to be surrounded with a bunch of friends like that. Yeah, no, like to have people in your life like that or to people who say, you know, well, Blue's part of our family. Of course he comes here. Right. Like a couple of my friends, I will take Blue to their houses. Yes, A few of them. Right. Because he feels comfortable and some of these houses are super nice. And I don't feel stressed there that he's going to break something or mess it up or. I just don't. Because of who my friends are. They are my friends for a reason. And it's not their nice houses, it's their hearts. Right?
• 23:42
  Speaker A: Absolutely. Their hearts. I never, ever, ever would have been able to know the depth of some of my friends hearts had it not been for what life has given to me. There's. I mean, maybe there would have been a different, different curveball. I laugh at my postpartum experience I thought was going to be the hardest part of my life. I mean, I was like, gosh, I really got through the hard. I really showed up for that. I figured that out. I mean, the universe was laughing. I thank you for your vulnerability and sharing about this. I think that who you are has been augmented by being bl mom because you get to model. And I think that modeling, more than any words, any podcast, anything that's spoken out loud, is so much more important and resonant to your other children out in the community, to those friends and their families, that that's going to come back in a way that I hope that you feel so loved and supported for. For being Blue's mom.
• 24:38
  Speaker B: Thank you. Blue's a lucky boy. And we are all so fortunate to have you, Sarah, because you're spending your time that could be your own, doing this to help other people. So thank you.
• 24:51
  Speaker A: Absolutely. And I think, again, I try to lean in as authentically. This is something that I feel so innately called to do. If you do not do that, you are pushing down what you're meant to do on this earth. And that's what I just always come back to, is I feel so driven to do this. And so thank you for being a part of it, and thank you for being a part of my world. And we'll thank Laurie too. Well, thank you. And you're. And Dabney. And Dabney.
• 25:13
  Speaker B: Yes. Thanks, Laurie.
• 25:14
  Speaker A: Thanks, guys. All right, well, until next time on the Inch Stones podcast.