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Why Autism Moms Never Fully Relax | Kerry Stevens' Story · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:01
  Speaker A: Hey, everyone. Welcome back to a really special episode in the month of May focusing on the Mamas of the Inchstones podcast. I have my friend here, Carrie Stevens, who is mother to a son who attended the same preschool as my kiddos did. And Carrie came into my life, in a way, through a wonderful group of women who, you know, as we always say here on Inchstones it takes a village. But it really takes other autism moms who understand what you're going through. And Carrie is no different. Carrie, you have been on your own journey, as I have been with mine, but there's been so many crossovers. And before I press record, I said, you know, how are you doing? How are you managing it all? And we both had this, you know, same response of like, this life expects so much energy from you, so much money, so much time, so much presence. I don't think there's words to sometimes say, the gravity of what we hold. And I would love to hear you talk more about that because I think you have your own unique things that you carry with Connor, but mostly what it means to carry it all and to work and to find your own time. So talk with me more about that.
• 1:15
  Speaker B: So I just left a job that I was with for four years. I started as full time, and then I was forced into part time because I was told my child was, you know, requiring too much of my attention, which, you know, made me feel terrible. Not at the time. Not at. At the time. I didn't feel terrible because they were blaming Connor. I felt terrible because I was like, I'm this terrible human being that I can't even carry a job and have, you know, and take care of my child kind of thing.
• 1:52
  Speaker A: Right. Like that. Like that. Reality is so real of. Like this. It begs so much of you.
• 1:57
  Speaker B: Yeah. So. But then as time went on, like I said, I just, you know, resigned on Friday. As time went on, I started to realize that my anger was more because they blamed my child. They, you know, they. You're. You're too distracted. You know, your child, you know, requires too much care. You're making mistakes. And I'm like, you know, and it was always like, I'm human. I'm going to make mistakes. And I'm also a mom. Forget that he has autism. I'm a mom in general, and good moms are gonna have their kids on their brains all day, every day.
• 2:33
  Speaker A: The caregiving load that obviously is augmented with children on the spectrum. Without a doubt. But the idea that your hat as being Connor's mom is just put off to the side is something that I think we just can't separate or divorce in any sort of conversation around the needs of autistic children. Is that you and I right now? I mean, I'm. I sit here, my phone's right here because the nurse was pinging me 15 minutes before we jumped on about a choking incident that happened at Mac school of him today. And I'm about to jump on another zoom. So there's. There's a inability for the nervous system of just a human being in general, let alone a mother, to actually put that off to the side. And I think when children have so many extra diagnoses in life or comorbidities or incessant need for parental support, it's really hard to translate to the world who doesn't have any idea of what your reality is.
• 3:28
  Speaker B: Yeah. Yeah. And, you know, people can say, you know, I'm a mom, too. I get it. But you don't get it. You don't get the fact that I, you know, had fertility issues and then I finally was able to get pregnant with Connor. Had Connor, and the excitement, and then to find out he has autism. The mourn the loss of what you thought motherhood would be. Yeah, you know, you. You thought. You thought. Child. You thought you'd be teaching your child how to talk and how to walk and how to, you know, just do Milly things.
• 3:59
  Speaker A: Yeah. All these things that play.
• 4:01
  Speaker B: Play baseball, you know, ride a. Ride a bike. You know, something so small, even just, you know, telling your kid, telling you, oh, Mom, I don't feel good today. You know, new mourn, all that, and, you know, it's still not, you know, Connor will be six. And there are days where I still. I still mourn sometimes, but then more of me has accepted this path. But it's never. It's. It's never a dull moment. You can never just turn everything out or shut everything out. You always have to have your phone on. You're always in fight or flight. Like you said, you. You know, you're always waiting for the phone to ring. Oh, what happened now? What's going on now? Who did he bite? Or who did he hit or, you know, why did he drop on the floor?
• 4:50
  Speaker A: Because the pattern of being a mother to children like ours insists upon it. So we can't unsee the patterns of behavior that our children do as they grow. Like. Like you said, the hypervigilance becomes sort of baked into what the norm becomes. Not because I chose it to be, but because the pattern of behavior of these Children require it. Right. And I think I've spoken a lot on these episodes that I've recorded other moms and I've been asking them all, do you. Did you ever realize until you became Connor's mom how much you were conditioned to expect? Typical. Like, did you ever realize, like, how much has been input, like, for me in my almost 43 years of life? Like, I don't think I realized how much I like hook, line and sink or bought the tale that everything was supposed to work out exactly how it was told it was supposed to work out.
• 5:40
  Speaker B: Of course. Of course.
• 5:42
  Speaker A: Right?
• 5:43
  Speaker B: Yeah. Yeah. You, you. I don't think anyone is ever prepared for this. And certainly, you know, when even six years ago, Connor, not a lot of people even spoke about it. And now all of a sudden it's like, you know, they're trying to bring it into a normalcy and it's like it's. But it's, it's not normal. There, there's. There's more to it than everyone thinks there is. And I won't, you know, I won't. That's for another episode.
• 6:14
  Speaker A: No, it's very true about. Because, because the acceptance of this. I always say, like, I would always welcome, and not for any pomp and circumstance, but to sit in the reality. I would love and always welcome film crews and documentarians to really sit and come into my home and see what this is like on a daily basis and see and integrate so deeply over 30, 60. To know this never stops. This level of care doesn't stop and doesn't make it wrong. It's not that the world is evil. It's just that the requirements to be a mother to these kids is something that the majority of mothers move out of once their kids become toddlers or once their kids become more functioning. And when you have, you know, we're typical, typical, you know, moms. When you have, when you at. At this, at the age that we're at, are squarely in a caregiver sustaining role that we thought our bodies and minds had been projected to get out of at some point and you don't. There's a lot of internal friction that comes from that, that it's so hard to share with the outside world because you're like, I don't even know how to talk about this without saying, like, it's not even a hike, it's not even a marathon. It is. Whatever you think that you're unable to set down, you can't ever set down in this life.
• 7:31
  Speaker B: You can't yeah, yeah. I. I like to describe it as. I still have a newborn.
• 7:35
  Speaker A: Yes.
• 7:36
  Speaker B: But he's 6 and he weighs about 55 pounds.
• 7:40
  Speaker A: That's right. And he's getting stronger and he's getting bigger.
• 7:44
  Speaker B: Yeah.
• 7:44
  Speaker A: And. And those developmental parts are. I always say, like, I've got three beautiful and healthy children. And the comorbidities of the. Of the younger two, what those do like to my. For my physical abilities is only getting harder. What would you say to maybe some moms that are just getting the diagnosis? Cause I know you and I can go down the rabbit hole of, like, the. The heaviness of it. Do you think that your acceptance, as you said before, how long did that take for you? When did you sort of hit the moment where you're like, you know what? This is going to be hard. This is the reality versus the person, the mom who's just digesting those words from a doctor.
• 8:25
  Speaker B: I think. I mean, it took a lot of therapy, but I think probably just about this year, maybe the end of last year, you know, I've kind of said to myself, he's here. He didn't ask to be here. We put him on this planet. We have to take what we were given. So I'm going to do the best that I can, and, you know, I'm going to push. Push him to be his best self. There's gonna be times where he, you know, there's. I call it, you know, sometimes there's three steps forward and, you know, one step back, and then it's this constant, you know, juggle. It's. It's not easy. It's certainly not easy. And don't listen to anyone that's gonna tell you that it's easy. If you really care about your child and you're. You're. You're a good mom, which we are. It's just. It's gonna be a constant struggle, and you're, you know, one day is not gonna be the same as the next day.
• 9:14
  Speaker A: I think I remember thinking when Milly got diagnosed and then subsequently, Mac, that I allowed myself to grieve a little bit. But I think that it was a much shorter. I think I forced my movement out of the grief or out of the shock or out of the, like, vortex of confusion, maybe too fast like that. I was like, okay, this is the diagnosis, you know, now let's keep going. And instead of realizing maybe I should just sit and process this for a little bit longer, I think I was so hell bent on getting things like moving to. I mean, let's Be honest. Like, fix it or catch up.
• 9:51
  Speaker B: Right.
• 9:52
  Speaker A: That movement was not rooted in really what their needs were, but rooted in a sense of. I needed this to be okay.
• 9:59
  Speaker B: Yes. Yeah, of course. Of course. When Connor was diagnosed, he was diagnosed at. He was diagnosed about 18 months to 2 years old.
• 10:07
  Speaker A: What were you noticing before that?
• 10:10
  Speaker B: Actually, he. I. I thought he was developing. This is not correct wording, but I. You know, I thought he was developing normally, and then it was after his third polio DTaP vaccine. It was very subtle, and everyone thought I was crazy, but it was the eye contact. So he instantaneously stopped making eye contact. And then the other thing that triggered it was he didn't care if I was in the room or not. When. Previously he did.
• 10:47
  Speaker A: Yeah. Yeah.
• 10:49
  Speaker B: So when he was diagnosed, the. The. The doctor that diagnosed him, she actually said to me, she said, listen, this is a lot of information. She's like, you need to sit with this for a little while. But, like, you. You know, I wanted to get moving. I didn't want to waste any time. Time is not on our side for these kids. Yeah, it's not. You know, so I wanted to get moving, you know, So, I mean, I listened to her for maybe a day.
• 11:15
  Speaker A: Yeah.
• 11:16
  Speaker B: But then I was like, yeah, no, okay. Like, this is going to take time, obviously, but, you know, I need to get in, start getting him help as soon as possible, whatever that looked like. And, you know, at first it was early intervention, and then, you know, we went into aba. But, you know, it's hard every day. You don't know what their mood's gonna be, you know, what they're gonna melt down about today, you know, and then us, we're always in. You know, we're constantly in fight or flight. You have to sleep with one eye open. You can never. Well, for me, I feel like I can never fully relax. You know, Connor's my only child, so for you, Sarah, you know, you know what a neurotypical child y. Yeah. Is like having. And then you have, you know, a million Mac.
• 12:00
  Speaker A: Yeah.
• 12:00
  Speaker B: So I can't even imagine the. The differences.
• 12:05
  Speaker A: The gap, I will say. I always say.
• 12:07
  Speaker B: Yeah, the gap.
• 12:08
  Speaker A: There's the gap. Like.
• 12:09
  Speaker B: Yeah.
• 12:11
  Speaker A: I feel so grateful to experience both. And yet that chasm. Morgan and Milly are only two and a half years apart. If you are out and about and you see both of them and know both of them and are understanding of, like, Milly diagnosis versus her sister's, that gap seems upwards of six, seven, eight years now. And I don't say that to make, to be dramatic. That's what that, what a typical observation would say. Like, yeah, they're probably six, seven, eight years apart.
• 12:38
  Speaker B: Yeah. Yeah. And then, you know, you kept, I'm sorry to cut you off. You know, you keep saying, I found myself. I kept saying, you know, next year will be better. He'll catch up next year. Always, you know, next year he'll talk. Next year he'll, you know, know more than he knows this year. Um, and I've had to just stop saying that.
• 13:00
  Speaker A: Yeah, you what, what would be or what is a day to day logistically look like for you, that you could paint the picture not as a way to like, you know, force reality on someone's throat. But I know when I share that I have to still help my kids, like unzipper their pull up or their, their, their pajamas, talk me through a day to day. Like, Connor wakes up and what, and what happens?
• 13:22
  Speaker B: Well, Connor wakes up and I gotta say, I mean, I'm very blessed and lucky that, you know, that his self interest behaviors have, you know, died down significantly, if not, you know, are very minimal. But, you know, I have to help him, you know, take office. You know, he sleeps in a diaper, so I have to help him take off his diaper. I put him on the potty, you know, help him pull his pants on, take his shirt off, you know, help him dress, help him undress, help him brush his teeth, eat him up his breakfast. Which doesn't look, which is not normal at all. It's fried zucchini sticks.
• 13:58
  Speaker A: Yeah.
• 14:00
  Speaker B: So it's not, you know, like I'm making him waffles or pancakes and then just trying to get him. Trying to get myself ready right. Now that I stopped working. Friday was my last day. I have this week off. And now I'm gonna be doing a new job, you know, so I not only have to get him ready, I have to get myself ready. So, you know, while he's eating, usually I'm trying to run around and get myself together, but I'm usually preparing his vitamins, preparing his minerals, you know, preparing his lunch for school, preparing his water. You know, you can't say, connor, can you give me your cup? Bring me your. Yeah, yeah. That doesn't work.
• 14:39
  Speaker A: I always laugh when people are like, yeah, it's, it's the smallest of things that you continually have to do that you, you were so convinced that would, that would be eradicated at a certain age. Right. So, like, you saying that, like I'm sitting here going, yeah, like if I forget the water bottle. Milly not reminding me.
• 14:56
  Speaker B: No, no, no. I mean, I've forgotten his water bottle a couple times. I'm like, oh, just give him a straw with a cup. At least he knows how to drink out of that.
• 15:03
  Speaker A: Exactly, exactly.
• 15:04
  Speaker B: I mean, I've definitely loosened the reins a little, but I'm still, you know, I'm very protective over him. But like I said, because we're doing, you know, some out of the box stuff, you know, so vitamins, minerals, homeopathic drops, preparing his lunch, preparing his water, making sure he has snacks, and then sometimes just trying to get out of the house is, is, you know, because he wants to play or he wants to, you know, do what he wants to do.
• 15:29
  Speaker A: Yeah. How does that, what does that look like for, for. But more specifically, like little boys that are around his same age, you know, I, I have a difficult time. I have to really talk about transitions to my son. There's a lot of input that goes into getting him out of the house.
• 15:45
  Speaker B: That actually definitely helps a lot. We think these kiddos don't understand. I'm convinced they just try to trick us and they're enjoying it.
• 15:55
  Speaker A: I think that they're like, I have agency strong and more will than you will.
• 15:59
  Speaker B: Oh, yeah, yeah, yeah. I know what you're saying. But guess what?
• 16:01
  Speaker A: I'm going to put it doesn't work for me. Like, I am really happy with paw patrol right now and like nothing is going to pull me away from this.
• 16:10
  Speaker B: Oh, yeah, yeah, for sure. I mean, he's pretty good into a routine. But then, you know, now you have him standing on, you know, we come out the front door and then I have a couple of steps. So now I'm always have my hand on him, you know, to make sure I have that. God forbid he decides to take off that one day. You know, you never know. You never know. You're always, you always have to be on alert, on high alert.
• 16:34
  Speaker A: Did he go through a phase of bolting and eloping?
• 16:37
  Speaker B: Knocko would not, no. But I still don't trust it.
• 16:42
  Speaker A: Yeah.
• 16:43
  Speaker B: You know, my dad came by and, you know, maybe a year ago and put these special bolts on the top of my. All of my doors to the outside. Cause Connor has, you know, with a lot of these kiddos, they have low muscle tone, so they, so he has a hard time, you know, turning. I mean he has the up and down handle mastered, but I still have the, the turn knobs for my doors. But I still like, you know, he's actually, his motor skills are getting so much better that I was so concerned with, you know, him letting himself out the front door. So, you know, I have these crazy bolt locks.
• 17:19
  Speaker A: I do, too. I've got locks on everything. And it's. Again, it's. I don't even see it as crazy. I see it as being, like, resourceful because I need second and third chances.
• 17:30
  Speaker B: Oh, yeah, yeah, yeah. Even if it gives you. Even if it gives you an extra second.
• 17:37
  Speaker A: Exactly.
• 17:38
  Speaker B: Exactly. That was huge. That is huge. Exactly.
• 17:40
  Speaker A: So Connor then goes off to school. He's at. He's at school in his program. I know that you fought for services and getting him in the right placement for things, which is another whole part of the platform that I'm trying to build out here, too, is to really allow for what you see at home, what you as the mother intuitively know your child needs socially, emotionally, physically at school. And you said he's been doing great there. What. What does after school look like for you? What does the rest of the day look like? Does he. Is he able to share about his day? Is he able to.
• 18:10
  Speaker B: No, he can't share. No, he can't share about his day. I can usually tell where his babysitter, because I'm working, obviously, his babysitter, you know, will usually give me update. He came out happy, he came out sad. He threw himself on the floor when he came out. So usually get an update from her, and then I have to get an update from the teacher. The teacher emails me daily to tell me how his day was, and that entails, you know, did he go to the bathroom? Did he have an accident? Did he eat? Did he push anyone off the trampoline today? You know, those kind of things, which look a lot different from your neurotypical children. He can't tell me how his day went. So we're reading his body language, we're reading his facial expressions, and then going off of what his babysitter reports back to us, which his babysitter is wonderful. I call her the second mom because I wouldn't be able to do our without her. And then his teacher. So then, you know, he gets picked up and then he goes to. Either he comes home. Most of the time he'll come home first, he has some more. More vitamins, and then she'll usually take him have a snack and then, you know, do some activities, whether it's, you know, swim after school or whether it's, you know, social skills, pt. But, you know, he can't tell me, ma, I don't want to go. You know, so we're, we're, we have to read his body language. We have to, you know, is he saying he doesn't want to go? Because he just doesn't want to go
• 19:44
  Speaker A: because he's busy six year old little boy and doesn't want to go. Right. What is sometimes just the typical little boy just saying and being, you know, just assertive in their independence and what is actually their sensory overload, uh, and in the expectations that are put on them, you know, there. It's so hard as parents to divorce that. And I think you hit on something too about. I was talking to a trauma. So I was talking to a trauma informed therapist and she was sharing with me that clients of hers will often say, and these are people that have gone through like very traumatic life experiences and they say I learned a lot of skills through my trauma that I don't want to lose. And I think that's like what you hit on like about these hyper vigilant things like reading body language, being so attuned to like his demeanor, his like aura of like what he just how he presents himself on a day to day. And it's like the hardest thing, it's one of the hardest things for me to integrate always is I've learned so many skills in being Milly and Max, but I'm still sometimes angry that I had to learn them. Right.
• 20:44
  Speaker B: For sure, for sure.
• 20:45
  Speaker A: So there's this total friction in that. Like how do you feel about those?
• 20:49
  Speaker B: Yeah, I, I mean absolutely. I'm like first of all. And it goes, you know, it gets even bigger. You know, I, I don't understand why do I, you know, why do I have to, I shouldn't have to. Like you said, I shouldn't have to learn his body language. Like I shouldn't have to be able
• 21:02
  Speaker A: to depth to it.
• 21:03
  Speaker B: Yeah, yeah. And like you're really. But I think one of the most important things as their mom is I think, I don't know about you, but for me I actually feel his pain a lot of the time, you know, and I've had to distinguish and you know, you to my therapist. And you, you know, you made me really dig down deep and say it's okay to be a mom and it's okay to work and it's okay to, you know, want the best for our children. And for me I had to really dig deep and say okay, you know, learn all of these things. Yeah, I get, I get angry. Like why do I have to learn body language? Why do I have to learn, you know, he doesn't do more like this. He does more like this. You know, his. That's. And then that goes into, you know, you can't leave him with certain. You can't leave him with just any babysitter. You need a babysitter that. That aware of special needs. You need. It's this whole big spiral. It truly is. You're spending more money on a babysitter that has experience. Right. You're spending more money on all the extracurricular activities because you want them to socialize or learn how to socialize or be okay in social situations.
• 22:19
  Speaker A: Yeah. It's constant. It's a constant reorientation to a world that is not beautifully supportive and accepting in the way because it has. That's how the system of society was built. And I think that the more in which we just share vulnerably, as I always say, about the truth about the actual lived experiences inside the homes of. In the walls of homes like yours and mine, of trusting that the mother's intuition and the mother's gut and the mother's desires and the mother's patterned recognition over time. You have seen. There is no one that knows Connor and who Connor is better than you, period. There is no single human that can relay who he is, why he is, what's worked, what hasn't. Better than you, the mom. And it's one of the things that I so deeply feel is like this mission of mine, because I think there's a. It's one of the only powers that has risen up greater for me in having Milly and Mac that I didn't harness nearly as much in my typical oldest. And it doesn't make it bad or I just. I don't. I don't feel angry at myself for that. But it really comes to this understanding that as a female and a mother to these children, it is the one thing that I can say without a doubt is so absolutely scientific and proven. And I think the more in which, and thank you for sharing so vulnerably about your day to day and what it's like to be Connor's mom, that the more these stories add up, the more that people share, the more that we get actual one on one conversation with mothers and caregivers of children on the spectrum. That amount of real data cannot be denied.
• 24:00
  Speaker B: No. No. And you know, Sarah, you were the one that helped me, you know, get Connor's IEP in order. I knew what I wanted. I just couldn't properly demand it, I guess was the right word, or properly fight for him. And I'm forever grateful for that. A lot of parents or a lot of moms don't even know that you can have a parent statement. And that is huge. That is so, so huge. And I remember sitting in our first IEP meeting and they were actually speechless, speechless with the parent statement. They were like, we wish all parents would do this.
• 24:41
  Speaker A: Well, I think it speaks from your lived experience as their mother. And to share it both cognitively, logistically and with deep clarity, it will transform an IEP meeting in a way that gives that power, that control, that leadership back to the moms and caregivers entering the room. Because that room is set up by default to be one of anxiety ridden pressure. And it's a pressure cooker for love. When love gets pressure cooked, it becomes explosive and it becomes erratic and it becomes chaotic. And I think that what I love, and I'm so thankful that I got to, you know, help you, you out with this, is that it put that power back in you based on that love and what you've witnessed in Connor. And I'm again so thankful to have given the honor to do that. I think more stories like yours hopefully will be coming out here on Inchstones too. I've got so many talking to. And just thank you so much for today and for talking about Connor so beautifully. You're carrying it better than you know. You know that. You should be really proud of yourself too for that.
• 25:49
  Speaker B: Thank you. Well, you should be really proud of yourself as well. You make a big difference in everyone's hearts.
• 25:54
  Speaker A: Well, thank you very much. And with that, Carrie's going to sign off, but we will be having many, many more fellow moms that are living this life day in and day out here during the whole month of May on the Inchdomes podcast. Thanks for being here, everyone.
• 26:08
  Speaker B: Thanks so much. Sarah, thanks for.