47. Raising a Child with Autism: Untethering and Fostering Independence with Carrie Cariello
In this episode of the Nourishing Autism podcast, Brittyn has an engaging conversation with author and mother, Carrie Cariello, who shares her family’s journey with her autistic son, Jack. Carrie discusses the challenges and strategies in navigating Jack's picky eating habits, the transition to independence as Jack becomes an adult, and the process of untethering to allow Jack to grow into his own person.
She touches on the financial difficulties of accessing suitable programs for autistic adults and the importance of focusing on life skills and family traditions. Carrie emphasizes meeting autistic children where they are, reveling in their world, and the significance of enjoying your child beyond the diagnosis. Additionally, Carrie talks about her books, including her latest, 'Half My Sky: Autism, Marriage, and the Messiness That Is Building a Family', and the efforts to maintain a well-rounded family life amidst the challenges of raising an autistic child.
- Grab Carrie's new book, Half My Sky: Autism, Marriage, and the Messiness That Is Building a Family. https://amzn.to/3TgGxNz
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https://www.instagram.com/carrie_cariello/
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TRANSCRIPT
Hi, I'm Brittyn, a Registered Dietitian and autism sibling. I have a passion for helping parents of neurodivergent kids navigate nutrition and wellness for their child, one small step at a time. Here we'll explore practical nutrition tips, learn from top autism experts, break down the newest research, and share inspirational stories that will empower you to utilize nutrition to help your child feel their best and thrive.
Listen in while picking kids up from school, sitting in a therapy waiting room, taking a quick walk or wherever you find yourself, looking for some inspiration and a friend to guide you along this journey. This is Nourishing Autism.
Carrie Cariello: [00:00:00] And if I could go back to my younger self or tell a new mom, it's really basic.
It's not the therapies. It's not, getting more speech, or trying the horse therapy, which I'm sure is all good. It's, sit with him, split a cookie before dinner, if everybody's really hungry. Smell his hair after a bath. Really see the boy before the diagnosis. I'm afraid there was too many times I didn't do that.
[00:01:00]
Brittyn: Hey there, Nourishing Autism Podcast listeners. Brittyn here. I wanted to share with you, I have a free five day workshop coming up that I would love for you to join. It's called Sensory Friendly Eating Made Easy and we start on March 18th. During the workshop, I'm going to help you break down your child's current diet, their food sensory profile, and teach you which foods to offer them that meet both their unique nutritional and sensory needs.
This is going to help them feel more comfortable and confident around new foods and expand their diet to help them get the nutrients they need to feel their best and thrive. During the workshop, you'll get access to a private community to get support and encouragement throughout the week, a daily video and worksheet, and get access to live Q&A's with me throughout the entire workshop week. Again, this is completely free in information that I've previously only shared with the members inside of my membership. So I'm super excited to be [00:02:00] able to teach it to you. I'm putting the signup link in the show notes below, but you can also sign up by going to nourishingautism.co/workshop or by DMing me the word workshop on Instagram @autismdietitian.
I hope to see you there. Let's get on with the episode.
Hey everyone, welcome back to the Nourishing Autism podcast. I'm so excited for today's episode, I just can't hold it in. Carrie Cariello came on to talk with us. I just love her so much. If you don't know of her, you need to. She is the mom of an autistic son named Jack and
she's the author of What Color is Monday? How Autism Changed One Family for the Better, and just recently released another book called "Half My Sky"", Autism, Marriage, and the Messiness That Is Building a Family. She has been featured on the Huffington Post, Today Parents, the Today Show, Parents. com, so many other places.
She's even given a TED Talk, which is amazing. I learned about her from a client that just loved so [00:03:00] much about what she shared and just felt so deeply understood that I looked into her myself and I was like, yes, I have to know her. We have to have her on the podcast. And since then, we've actually been able to do quite a few things together and it's been really special.
So I'm really excited for this episode. We talk more about her son, Jack. We talk about, the untethering that is happening as Jack ages and is becoming more and more independent. And so I think for a lot of parents, you're not quite there yet. So it's really nice to be able to listen to somebody who is and has gone through this journey for 19 years now.
She also talks about their experience with food and Jack's picky eating, and I'm just really excited for you to listen in on this episode.
Carrie and I are actually going live together on Facebook on March 10th and I'm so excited. So if you want to join us live, be sure to tune in on Carrie's Facebook page, Carrie Cariello, What Color is Monday?
So without further ado, here is Carrie Cariello.
I am so excited to be sitting here with, I feel like a friend now, Carrie [00:04:00] Cariello. Thanks so much for being here, Carrie.
Carrie Cariello: No, thank you. I feel likewise, the same. I mean, I'm so grateful that we connected kind of randomly on Instagram. And since then, I've had, I think this is like our third virtual meeting.
Brittyn: It is. And I, the first time we met you had DM'd me because I followed you and it just like perfectly lined up. We went on a Facebook live and then we did an Instagram live and now we're here. So we're just doing all the possible ways we can show up on camera together. I love that.
Carrie Cariello: Well, I think our philosophies line up well in terms of food and expanding kiddos palates.
Brittyn: Yes, absolutely. And I love when you share that on your page because I mean, it's a part of what you share and you know, you're a parent. I'll let you explain or introduce yourself, but I love that you talk about food because I know so many parents can also really resonate with that. And I think it's something that's often not talked about enough.
So I love that you're sharing it as well on your platform. Thank you. So I know how [00:05:00] amazing you are, but why don't you share a little bit more about yourself and who you are? And I bet a lot of listeners probably know who you are as well. I think share an audience.
Carrie Cariello: I think we do share an audience and that's very flattering.
I'm Carrie Cariello. I am married to a man named Joe. And we have five kids. Our second son, Jack is diagnosed with autism and Jack is currently 19 and lives in a college program a few hours away. And I've been writing about our family and marriage and autism and all of that good stuff for close to 12 years now.
I'm an author. I just released a new book, Half My Sky, which is sort of series of letters to people in my universe, and it seems to be kind of resonating widely throughout our community, so I'm excited about that.
Brittyn: And you had an amazing launch, like it went so well, and I remember you sharing too, you were like, my publisher said they didn't want it, but I wrote it anyway, and then look at this book that's just blown up, it's so cool.
Carrie Cariello: Yeah. Yeah. Well, they didn't want the [00:06:00] format and that was fair because I did promise them a guidebook, which I've since like turned in. I turned that in last Friday, but I just couldn't change this. It's such a poignant, like personal story. And and I'm just, I think people are really able to see a piece of themselves inside of it, which is exciting.
Brittyn: Definitely. Well, so share more. I mean, you have five kids, so I want to, I wish we had time to go through all of them because I want to know about all your kiddos, but share more about Jack and a little bit about his story and kind of connecting that to where he is today.
Carrie Cariello: Sure. So Jack was diagnosed when he was 18 months old with autism.
Back then it was considered where we lived, pervasive developmental disorder, not otherwise specified. We lived in Buffalo, New York at the time. We now live in New Hampshire. We moved here when Jack was just about three, and the, the diagnosis turned to autism spectrum disorder. So he is now in a program that has a lot of scaffolding.
It's a residential [00:07:00] space where there's staff from 7 in the morning till 11 at night. And, There's outings. There's group meetings and a life coach and a social and emotional coach and academic team. And he takes two classes at a nearby college. And we're just so thrilled to give him the chance to fly.
He really wanted this opportunity, especially after we dropped my oldest son, Joseph, off at his college program a year prior.
Brittyn: I think that it's amazing that you have a program like that close to you. I just want to hear about the access to those kinds of programs as well.
Carrie Cariello: You know, sadly, I talk a lot about this on my page.
There's not many programs and within the few programs that we identified, there's few spots, right? So for Jack, We decided, he wanted to graduate high school on time. He was what's called referred out of district in sixth grade. So he didn't go to our district high school. He went to a much smaller school with a lot of support.
And with that [00:08:00] support, he was able to graduate on time. Which was wonderful except the day he graduated every support and service we ever had fell away. And I remember like the beginning of his senior year, when we started this journey to find something being like. Oh, my goodness. Like, how am I going to fill his time?
A lot of life alongside a kiddo with autism is filling their time with purpose. And that was sort of, you know, my and my husband's job for 18 plus years. Every weekend, what can we do? What can he benefit from? Where can we take him? And, and I wanted more for him if we could find it. In terms of access, I think it's important to cover the financial piece because I, I don't want to be misleading.
They're incredibly expensive. Jack's out of pocket is 80,000 a year. And I feel, you know, really frustrated by that because I know on behalf of many, many families in our community that is not accessible and I understand that.
Brittyn: Yeah. [00:09:00] Oh, and I mean, it sounds like the amazing supports that they give, but yes, also not being able to be accessible, whether it's the location or financially.
It's so hard to find those kind of services for adults to be able to support them because we have all these services for kids. I mean, we need more still for kids. But then kids turn 18 or 21, and then all of a sudden, where do we go next?
Carrie Cariello: So. It's crazy because my oldest goes to school in Philadelphia.
They gave him like a 17, 000 merit scholarship for simply having a pulse. For simply filling out an application. And my argument is, Jack is the kind of kid you want to invest in. If we invested in some of these kids like Jack for three to four years, really heavily front loaded it, it would be much smoother sailing.
My oldest could figure out how to get a school loan if he needed to. He could figure out how to pay all of that back. You know, Jack, it's got to be in the very beginning to get those life skills really up and running. Yeah,
Brittyn: yeah, that's true. My brother when [00:10:00] he graduated high school, did a community college program.
And it was really great. Like he loved it. He wanted to go back for more. It was so great for him. And I think that my mom knew how to navigate some of those services. And also, I mean, she worked full time and finding someone to be able to help navigate that and drive him there. And all of the pieces to that, it's really fortunate that we were also able to access, not the same caliber of program, but also something where he can go find purpose, like all of these things that he loved, but she knew how to navigate the system to also, okay, how can we find a helper? How can we also get him enrolled in this and the supports he needs? It's a lot to coordinate. And she's a psychologist diagnosis kids on the autism spectrum for a living and did that before my brother was born. But, so she knows the system for someone, and it's still hard.
Carrie Cariello: You know, so I think about that all the time. I call it autism management. I have folders upon folders next to me. [00:11:00] And I feel for every like single parent or somebody with an overloaded full time job. It is, it is sort of like a part time job for me at times during the year. And it is really a shame.
Brittyn: Mm hmm. Absolutely. I completely agree with you. Well, I have so many questions about that, but just for the sake of time, I kind of want to venture back a little bit. So it's really cool to see where Jack is now. And I love seeing the texts between you and the family. I love what he shares and seeing just like how much he's grown is amazing, but taking it back to childhood.
Picky eating is one part that I want to touch on. But also, you know, it, it has been a process for you all to get to where you are today. So for people who are in this, where they have kids who are maybe recently diagnosed, they're really struggling with picky eating, they're still having trouble navigating the system.
I kind of want you to share a little bit about what that looked like for you in their shoes. [00:12:00]
Carrie Cariello: Absolutely. I mean, to give sort of a timeline of events in Jack's world, at age six, he was crushed by anxiety, simply crushed by it. And that was a good six months of us trying to figure out if medication was the answer, which it wound up being, or we could work him through it some other way.
Puberty was incredibly challenging. In sixth grade, Jack pretty much fell apart. And I'm really open and honest about that because I think it's sort of the underbelly of autism. That's not widely discussed. it's, you know, it was self harm. It was some aggression. It was outbursts at school. It was a lot of shame on his part for failing to regulate himself.
And as I mentioned earlier, we did wind up getting an out of district referral, which isn't always that easy to accomplish. In terms of eating, yes, I always say, I know we've talked about this. Jack loved what's called the beige category. He still does. He still really is drawn to that category. You know, pancakes, nuggets, pretzels, crackers, all of that [00:13:00] stuff.
And he's funny because although he was drawn to those categories, he's always loved dinner time. Dinner time has always been kind of a cornerstone of our day as a family. We knew we wanted to implement that really kind of right away. And so we had to be mindful of a few strategies to get him to stretch at the table.
One, when he was three or four, that we found most successful was using a timer. And he, we started, I believe we started out as short as one minute. Can you sit here for one minute? And then week by week, we just increased that. It sounds so maybe like, non consequential, but even things like their plates make having them, you know choose what plate they wanted.
There was this company, I think it went out of business, but they let you draw a design and then you sent it away. We still have them and they came back as their, their drawing. I'm sure Etsy must have something like that. [00:14:00]
Brittyn: Yeah, that's adorable.
Carrie Cariello: I love it. It was the coolest thing. And then a developmental pediatrician gave us the idea that to use those segmented plates when they were younger and they could take a serving of everything, including dessert.
And when they were finished with everything on the plate, they could have seconds of anything they wanted. And it really stopped glorifying dessert in our house, which had become a bit of a problem. They sort of fixated on it. Do you know what I mean?
Brittyn: Absolutely. I love that approach. It feels backwards in the moment when you've never done it.
And a lot of my clients are like, well, but if I give them the dessert on their plate, aren't they going to eat it first? And I'm like, probably. Sure. Wouldn't you? It's like over time, it becomes less exciting. And it's just a part.
Carrie Cariello: It really does. You know, I grew up with sort of a, like a disciplinarian father around food and you were going to sit there until you finished it.
And it could be hours. And I was determined not to come to the dinner table with that approach. I wrote, and [00:15:00] I have a new guidebook that I just submitted. It won't be out for about a year, but I had to cover food quite a bit in it. And I wrote, you know, you have to come to terms with your partner, how you're going to handle food at the dinner table.
Did you marry a sit at the table till after dark kind of guy, or, or a wife who insists the peas have to be eaten. That's your first frontier to accomplish because it becomes such a battleground and kids feed off of that energy. It's true.
Brittyn: It's really true. And when you're not on the same page, a lot of frustration is going to build.
And then the child is also usually confused. And that's what we want not happening at mealtime. We don't ever want them to be confused. We want to have a consistent. Like, expectation of what happens at mealtime and that predictability is also really helpful for kids. So I completely agree with you on that.
Carrie Cariello: You don't want them to associate it with a negative energy. Like, oh, mommy and daddy had a screaming match last night. Let me tell you, we did, of course, at those nights. [00:16:00] And everybody rebounded from it, fine. But, you know, you don't want, it to be known that the dinner table is now your battleground.
Brittyn: Yes, and even if it's a conversation of okay, the next time we don't agree at the dinner table, we're going to talk about it later, we're not going to talk about it in the moment, because you're right, kids absolutely feed off of that anxiety, and we want to make sure that whatever environment we're putting them in is the best possible experience that they could have at mealtime.
I often say like, let's make it positive, but if we can't, let's make it neutral. Even if we make it neutral and it's just a normal dinner time, nothing amazing happened, that's okay. We're still trying to build in because that's going to make a big difference later on when kids are actually excited to come to the table or it's a non issue to come to the table versus you're pulling teeth to get them to sit down.
Carrie Cariello: Yeah and one thing I learned that was so helpful not only for the dinner table but other aspects of Jack's life. Choose [00:17:00] one thing to focus on. Maybe today, so Jack is very tactile. He went through a phase where he had to roll all his food between his fingers. It drove me crazy. So for that period of time, we just worked on him holding a fork.
And so what he got into his body was less important than mastering that skill. It could be just sitting there for an uninterrupted amount of time. And then you move on to like trying foods. So don't sit down and say like, napkins in the lap and forks and this and that if you have a kiddo whose executive functioning is a little delayed.
Brittyn: Ah, it's true. And what you're saying, I love to talk about because sometimes people are so eager to jump in, which is so good. Especially when you're like, yes, I'm feeling motivated. I want to work on expanding the diet. We're going to change all these things, which is awesome. However, putting all the pieces together at once can be really overstimulating and food is already something that's really unpredictable and very [00:18:00] sensory oriented.
So when we change everything, it makes it pretty overstimulating pretty quickly. But what you're saying is focus on one thing, you can make these changes, but kind of build on it. I like the thought of these are building blocks. We're laying the foundation of a positive mealtime first.
Let's get a positive mealtime, even with just our safe foods under our belt. And then once we feel really good, let's add in some of those new things. Cause then you're adding in a whole another layer of regulation of they know what to expect in the background and now we're adding in new variables.
That's what I teach my clients a lot of the time.
Carrie Cariello: Yeah, we, through the years, began to make it less and less about the food. We had a menu board, which Jack loved. We have a lot of great pictures of things he put up there. When the kids were old enough to sit safely at the table, we had once a week where we lit candles for dinner and they loved that.
Yes. We had a neighbor told me about this idea she did with her own kids when they were younger called amnesty night where at the dinner table you can [00:19:00] ask anything you want you know, anything that comes to mind and you can confess to anything you want without consequence. Oh, I share that with people.
They're like, Oh, gosh, well, what, what would they ask? What would we find out? I will tell you, it was so special. They ask where your grandparents are from. They ask how your parents met. These are the things we really were able to dive into. The worst confession we ever heard was that my youngest son stole Jack's watch to give to his fifth grade teacher.
You know, they just, I know, it was so funny. And I don't love to cook. I'm very open about it. I do it. I did it. But I love to present food. I love platters. I love napkins. And really making it look special and appealing kind of takes the focus off of how many, bites of steak are you going to eat?
And I also think it's important to respect them. You [00:20:00] know occupational therapist once told me kiddos with sensory needs don't like things all mixed up, casseroles. They have to sort through every texture and get their brain to understand what they're ingesting. When I heard that, I thought, okay, Jack just doesn't like lasagna.
He just won't chicken pot pie is not for eight year old Jack. And I think it's important to, you know, I have likes and dislikes. There's certain things I don't care to eat. And then I was talking to a young mom recently who's having some battles at age three at the dinner table. And I said, what if you told him, okay, one night a week, you pick the menu and everything you want goes on it. If it's mac and cheese, that's what we're having with a side of ketchup, go for it. They're more willing to stretch for you if you stretch for them.
Brittyn: It's true. Yeah, when they can have a say in it. Because, I mean, food and a lot of things feel very out of control for kids. They are given food, they are given an [00:21:00] environment, sometimes just giving them a little bit of say, even if it's a choice of, do you want mac and cheese, or do you want rice?
And they say, I want the mac and cheese. Being able to give them that buy in to mealtime can really help, and you can talk about it throughout the day, like, remember when you chose mac and cheese? I can't wait to eat it at dinner tonight. We're reminding you, this is the decision that we've made, kind of reinforcing that, but I think that's great.
What a fun mealtime.
Carrie Cariello: Yeah, I also have a philosophy for holidays that just get them fed. If you have to pack food, if he ate a hundred dinner rolls that's not your battleground. Will you be, you know, will you field comments because somebody's homemade chutney wasn't dried? Perhaps. I like to advise people to come up with a toolbox of, like, quick, benign responses.
Yeah, we just want him to eat today. If he doesn't eat, then things really get out of hand. Just things that people aren't going to challenge for you. But we have a term in this house called well resourced. [00:22:00] And on high demand days, like, holidays or family gatherings, we just all want to be well resourced, fed, rested, connected, and calm.
Brittyn: Exactly. And it doesn't have to be the day on Thanksgiving that you are working on expanding your child's diet. It is okay to say, this is a day where I'm going to focus on my family and my friends, and I'm going to choose low stress for myself, and that means that it's dinner rolls today. Dinner rolls.
Yeah, and I love your idea of having, this is how I'm going to respond when people say it, and it's kind of just a, a non issue anymore.
Carrie Cariello: Because we, the, the skills we work the hardest for are the ones we lose under stress. So if you as a human being lose the ability to sort of effectively respond to criticism, who doesn't?
I do. I found that, that toolbox applies to many things when you're talking about a highly sensitive topic, medication, a diagnosis, anxiety. My go to are behaviors. My go to is always, we're working on it. [00:23:00] We're working on it. You know. Another thing I talk a lot about is there is a duality in kids like Jack as they get older.
You know, you have a physical age, Jack is 19. Then you have an emotional age, around 14. With food, the inclination is to parent the younger age. And I know I did that too. And I understand why. As he got older, we tried two approaches. Really try to get him to dial in. Okay, well you've had six sodas. How does that feel?
How does that feel for your body? Do you think you'll sleep well tonight? Because ultimately, the idea is to get them to make their own nutrition choices. The second thing, and this is not talked about much, but in order to preserve his dignity, I stopped hovering around him at holidays and gatherings when he became a teenager.
My benchmark is I have a son one year older than Jack, so I would say I would never tell Joseph to put that cookie back, or he's had enough, [00:24:00] or anything like that. And I think it's really important to begin to honor them as young adults, so that the world will honor them as young adults.
Brittyn: Yes. I'm taking in all of that.
There was so much good wrapped up in that. I think that you're completely right. You know, we do kind of default to that younger age, and I even find I try my best, you know, when I'm with my brother too, and I'm like, oh, okay, there are, you know, three to four big cinnamon rolls on the plate. Is that needed right now?
And I'm like, okay, talk myself back through it. Yeah, he is an adult. He can choose for himself. That is the choice that he's making. But also later, away from the food, how do you feel? What does that feel like for you? This doesn't feel good to me. I want to know what it feels like for you. Having those conversations as adults away from the food when it's less emotional also allows us the time to kind of process what's happening and like have a really productive conversation.
So you're not alone with that for sure, [00:25:00] and I have to deep breathe sometimes, I'm like, this is not the time. I want to be helpful, but I also want to honor that independence for him, you know?
Carrie Cariello: You know, Jack's in this college program, and I thought, ooh, he's Jack's 6'5 size 15 shoe.
So is Barrett!
Brittyn: He's 6'5 yeah. Huge guys.
Carrie Cariello: Yeah, I wouldn't describe Jack as heavy at all, but he's not small, he's the big guy. Tall. Yeah, he walks in the room and people lift their heads, you know, just like he's like a big head, he's big shoulders. And I did wonder, now he is, does not live here, and he has access to Dunkin Donuts, to every convenience store.
And I thought, He might get heavy. I don't know. I was curious to see how he would self regulate. And I'm really happy to say, hopefully because some of these things we put into place, he's very good at saying, I'm full. I've had enough. And that's all I ever wanted from any of my kids to be able to say and us respect it because I came from an environment that didn't honor [00:26:00] that.
And he was just home for the holidays and we had some appetizers and then we were out to dinner and then we had something else. And he said, you know, I think I'll just take this home. Wow. And yeah. And so I'm really thrilled to see him put those pieces together.
Brittyn: Well, it's hard too, because there's a sense called interoception, which is our ability to recognize what's going on internally in our organs.
So are we hungry? Are we full? Do we need to go to the bathroom? Are we anxious? Like all of these things. And we see that for Individuals on the spectrum that making those connections is really difficult. So I often see kids who are really overeating or they're not eating because they're not making the connections between the two and facilitating kind of.
That process or even talking through it as a parent of oh, I'm gonna save this for later I feel really full or whatever it might be you can sometimes be like, oh I'm gonna connect that because I think also us as a society we like tend to just blow past our Full queues or hunger [00:27:00] queues, and that's really unfortunate.
So I think it's amazing that Jack can do that. And it tells me that you all did a good job as you're feeding him to helping him understand where do I feel good? Like, yeah, mind body connection, because it can be really hard for Any adult to
Carrie Cariello: well, and my husband's Italian. Food is a crucial part of his culture and the family's attitude towards food is there's no off button, it's all out of love. But I mean, I noticed my husband doesn't really respond to those cues either. So you have a lot to manage, when it comes to food, your own familial baggage, yourself as a couple within a family, any cultural influences, and then an eater who is not incredibly adventurous.
We always went to restaurants. We were able to do that with Jack's behaviors, luckily. And we always just made food something exciting, you know, try this. This is amazing. And even if it was just one bite.
Brittyn: Totally. It's [00:28:00] interesting too, because it sounds like Jack responded really well to that. And then there's some kids who are like, ooh, a bite sounds like the last thing that I want to do right now.
And it's totally reading the room. are they feeling overwhelmed? Is this a food that they've done that before? And sometimes it's like, okay, you can touch it. You can smell it, you know, like all those little steps. And it's kind of just learning your child and those foods and in what environments do they thrive to and there's all these little pieces to put together. But just thought I'd throw that in there too because some people might be like well bite feels really far away
Carrie Cariello: Absolutely, and I want to like underscore that we had a picky eater, but not somebody who really had strong food aversions. I would say so circling back quickly to the college program, A lot of kids with Jack's diagnosis have trouble eating in groups.
They don't like the smell of other people's food. They don't like the chatter. I am grateful looking back that we moved him through that as a bigger family because when he went to this program, he has no trouble with community eating. [00:29:00] And that means, okay, he is coming out of his room for mealtimes.
He's not sort of holding up and eating alone in a solitary way. So if you have the opportunity to do that, I think it really, really shows up well for them later in life. Definitely.
Brittyn: Yeah, I love all the independence that Jack has really gotten through this program, but also we talked about it I believe in our Instagram live maybe a month or so ago when you were talking about how kind of cutting the strings and how it's really hard, but it's a really good process for you to also allow him to be his own individual when you also really want to shield him from the world.
It's like this duality. Could you speak on that a little bit?
Carrie Cariello: Yeah, I call that untethering and to me, there's a three part approach to it. You know, first our untethering was physical. Can he manage medication? Could he sleep outside of this house? We knew he could do those two things before he launched to his program.[00:30:00]
For his first year, then it turned to emotional, his frontal lobe was so deeply connected to mine. And that looks like. Don't text me until noon. I'm not available for you. And these sound very Difficult. They were difficult. You know, here I had launched a kid who's younger than his physical age, but we just knew we wanted to make this successful.
When he was home, he was always waiting for me if I was ever out without him. We have an attached garage and he'd be waiting in the doorway, which was bittersweet and maddening at the same time. Because sometimes you just scroll on your phone alone in the car. And so I would say, okay, you know, look at your siblings.
They don't wait for me. They wait for me to come into the house and then they greet me. We talk about our day and where we've been. The last piece, which I'm just newly discovering now, since he's been home for that, well, he was home for the holidays, was the interpretive part. And by that, I mean for 19 years, I [00:31:00] interpreted the boy to the world and the world to boy.
We were out for dinner with my oldest son and his girlfriend and they brought the wrong pizza for Jack. And my tendency was to just. Get right in there. Well, he did. That's not what he ordered. What can we get? What do you think, Jack? And it was physical. People have asked me, how do you do it?
And I think our body tells us everything we need to know. I mean, literally leaned back in my chair and I folded my hands in my lap and I took my tongue off of the roof of my mouth. And those three things really cue your body to bring your nervous system down. And I just waited. And he said, this isn't what I ordered.
And they sort of talked about it. And he said, I'll try it. And if I don't like it, there's more room for dessert. Huge. Wow.
Brittyn: Oh my goodness. Yeah. Positive thinking A. I love that he's like, we're problem solving. [00:32:00] Also, this works out in my favor, possibly. But I love that he was open to trying that. And I think that that opportunity, that whole opportunity that what you just said would have been lost had we jumped in so quick.
Carrie Cariello: Absolutely. And he didn't love the pizza. I think he had half a slice and then he went and got gelato. And that's okay. That was perfectly okay. But I'm trying to be curious about more opportunities to slide myself out from between world and boy.
Brittyn: Wow. Yeah. And it's those moments that feel little, but it led to a really big. I mean, I think that that's big, a big discovery for him. And it's like another one of those examples of he can do this. It was a huge triumph. That's so good. Well, so Jack's 19 and you know, a lot of people I think are looking up at you like, Hey, we're new to this world.
We have just gotten a child their diagnosis, [00:33:00] or maybe they're working through therapies, they're working through juggling school and IEPs, and so I think a lot of people view you as, oh, she did this before me, and she's doing it, and Jack is doing great. What advice do you have to your own self?
15 years ago, if you saw yourself, you'd probably be thinking the same thing. What would you say to her?
Carrie Cariello: Yeah, that's great. I have a letter to a new mom and dad who are newly diagnosed in the book. It exactly outlines that, you know it's called the whole child, right? People ask me all the time, what therapies really worked?
What should I ask for in that conference room when you're around the table, for an IEP meeting. You are raising a whole child. And a whole child does not spring off of a table covered in paperwork. It is nice meals at the table. It is prayer in church, if that's what's important to you. It is outings together as a family.
It is understanding boundaries and limits when it comes to other people's time and space. It [00:34:00] is learning how to forgive. It's all these soft skills that sort of obviously aren't included in the academic structure. They don't belong there. My husband took Jack to the bank every Saturday. From the time he was 12.
So he would understand banking. He would know how to sign his name. How to cheer somebody up after a bad day, how to pick out a gift for your cousin when she just had a baby, what would you buy? All of these things are so worthwhile when it comes to raising a kiddo on the spectrum. And if I could go back to my younger self or tell a new mom, it's really basic.
It's not the therapies. It's not, getting more speech, or trying the horse therapy, which I'm sure is all good. It's, sit with him, split a cookie before dinner, if everybody's really hungry. Smell his hair after a bath. Really see the boy before the diagnosis. I'm afraid there was too many times I didn't do that.
Brittyn: [00:35:00] That really got me. Okay, we're fine. Yes. I've never heard somebody put it that way. It's hard because it's a world that revolves around all these therapies and you feel like you're this case manager. And so I would think that sometimes just sitting down and taking a moment feels like, well, I'm not being productive.
I'm not helping, but taking a second to sit and yeah, eat a cookie together, do something. Wow.
Carrie Cariello: Yeah. You know, we feel like we have these clocks strapped to our back, and we do. We absolutely do. But we also deserve an opportunity to enjoy this child, and an autism diagnosis shouldn't take that away.
I always say meet him where he is. You know, Jack for years loved to talk about radios, radios, radios. We had this one yellow radio when he was little. He'll still talk about it. And I remember saying to somebody important in my universe, I just wish he could find joy in other things.
And she said, what if you just met him where he was for 15 minutes [00:36:00] a day? And we called it Jack's time. And it was when I was usually cooking dinner because he would be at the counter with me. And I would say, Jack, tell me everything you remember about that radio. Tell me everything you loved about it. It sort of took the focus off for the remainder of the evening and also helped him explore his own joy a little bit.
Brittyn: Yes, and you learn so much about them in that experience, in that moment as well. One of my best friends, her name is Claire, she and Barrett were always buds. She was always his favorite of my friends, and he loves voice acting, and one time she just sat down with him and was like, tell me about it.
What do you like? And when I tell you, he probably talked for 10 or 15 minutes. And I was sitting there, we were actually driving, he was in the passenger seat, she was driving, I was in the back, of course, and I just sat there with my job, and I was like, I've never asked him that. I've never [00:37:00] asked him to share.
I know he likes it, but I never asked him to share more. And I learned so much about him in that moment. And I was like, that was amazing. And I never had thought to just sit with him in that before. So, I love that.
Carrie Cariello: I tell new families that I speak to, families of newly diagnosed children, whether they're 2 or 11, it may not feel like it right now.
This is actually an opportunity. It is an opportunity to redesign your family in a way that feels good to you. You know, we couldn't have the kids in 10, 000 sports. Jack didn't have the bandwidth to sit all day Saturday at a field. Dinner was where we gathered. It's where he waited for everyone. We really dialed our life back to the basics.
Breakfast at grandma's on Sunday mornings, trips to the bank, meals together. He redefined what was meaningful for us.
Brittyn: I love that. Thank you for sharing that. I think that so often, I mean, [00:38:00] again, therapies are amazing. They do incredible things for kids, but I think sometimes we do get so wrapped up in them that it's all we're thinking about, and I think sometimes taking it back to the basics of life skills.
teaching them the same life skills that you would teach every other of your child, your children, goodness. But I, I love that.
Carrie Cariello: And I have to honor my husband in that. If those boys were going up, and girl, on the roof for Christmas lights, Jack was going up there.
If they learned how to do the snowblower, Jack was learning how to do the snowblower, pump gas, or anything. He never, ever believed in the autism parentheses holding his son in.
Brittyn: That's amazing. Well, that's a great encouragement for a lot of parents who are maybe also, in the midst of getting all of these therapies, it's hard to kind of see your way out of it.
It's hard to see that there's more than just therapy. There's also all these other pieces and how can we enjoy our time together I think is often missed. That's not something that doctors tell you to do. [00:39:00] Okay, we'll take the time.
Carrie Cariello: And don't think somebody, a therapy or a group or somebody can do it better than you can.
Brittyn: That's true. That's wonderful. Well, Carrie, where can people find you and learn more about you? You host Lives all the time on Facebook and you share so much information. So tell us where we can connect with you.
Carrie Cariello: Thank you. I write a weekly blog post at CarrieCarriello. com. I have written every Monday for 12 years.
I say that and then I'll get food poisoning or something on Monday. But I have stockpiles. I have stockpiles. But the blog is a real time look at our life. It's whatever's going on this week. You know, this most recent one is when I brought Jack to the bus stop to head back to school.
My Facebook page is WhatColorIsMonday. Yeah, I go live there twice a week. And then I do a bigger live with Finding Cooper's Voice and Adrien from Tales of an Educated Debutante
Brittyn: you just took a trip to New York with them and I think everyone [00:40:00] was jealous.
Everyone was like, how can I get out on this trip?
Carrie Cariello: That was a crazy trip. We had a great time. And that was the first time the three of us have been in the same room together. And we were there to announce a book deal from HarperCollins that we're beginning to collaborate on now and that should be out within the next year to 18 months.
On Instagram, I'm Carrie underscore Carriello. And then I just did release my latest book, Half My Sky. This is Jack actually walking in Italy. We had told him to hold the umbrella high up over his head. And, and, you know, it captures him so perfectly, but it's Half My Sky: Autism, Marriage, and the Messiness that is Building a Family.
Brittyn: Amazing. I'll link all of your links and the book in the show notes below so everyone can get connected to you. Thank you. so much for being here, and congrats on an amazing book launch, and yeah, I'm so excited that we connected, and Now we're sitting here after, you know, being able to chat for a third time, so I'm sure that there will be more, [00:41:00] but thanks for all that you share.
I got a lot out of this episode and I know that everyone listening will too. Thank you.
Carrie Cariello: Thank you for having me.
Brittyn: Of course. Thanks everybody for listening. [00:42:00]
Transcribed by Descript
About Brittyn Coleman, MS, RDN/LD
Brittyn Coleman, MS, RDN/LD, is a distinguished Registered Dietitian and Autism Nutrition Expert, known for her innovative, sensory-friendly feeding approach to nutrition for children on the autism spectrum. As the founder of the Nourishing Autism Collective, and as an autism sibling herself, Brittyn brings both professional expertise and personal understanding to her work. She empowers families with her expert guidance, helping children receive essential nutrients for optimal health and development. Her strategies are tailored to the unique dietary needs and sensory preferences of each child.
Brittyn's influence extends beyond her membership site through her active social media presence and her popular podcast, 'Nourishing Autism'. Her educational content on Instagram, YouTube, and other platforms has established her as a leading voice in autism nutrition, providing valuable resources, practical advice, and a supportive community for parents and professionals.
