Raising a child with autism is a journey filled with unique challenges and profound rewards. In our latest podcast episode, we dive deep into this topic with Pastor Sarah Jane and her long-time friend, Alicia Jones, who is not only a mother but also an accomplished historical fiction author. Alicia shares her personal experiences of raising an autistic child, providing invaluable insights and advice for parents in similar situations.

 

One of the central themes of the episode is the struggle with meltdowns. Alicia describes these moments as unlike any other tantrums, emphasizing that they are not mere displays of frustration but intense episodes where the child loses all sense of rational thought. “The hardest thing about a meltdown is keeping the child safe,” Alicia explains. “Making sure that in this moment when their brain shuts down, that they don’t run out into traffic, that they don’t jump off of the stairs or something like that.”

The conversation also touches on the sensory issues that often accompany autism. From clothing sensitivities to food textures, autistic children have unique ways of interacting with the world. Alicia shares a poignant story about her son, David, who would refuse to wear clothes due to sensory discomfort. “He needs to be able to eat pretty much on demand,” she notes, highlighting how traditional meal times often don’t work for autistic children.

Pastor Sarah Jane and Alicia also discuss the emotional toll on parents. The feeling of isolation and the constant guessing game to understand their child’s needs can be overwhelming. “Everything you think you know about parenting kind of goes out the door,” Pastor Sarah Jane observes. Alicia adds, “It’s just been a real learning curve for me to not see everything as behavioral or moral issue, especially in a child who can’t make a conscious decision about whether or not it’s right or wrong.”

Despite the challenges, the episode is filled with hope and practical advice. Alicia talks about the importance of support systems, mentioning organizations like the National Autism Association, which provides resources and community for families dealing with autism. The episode also offers a glimpse into the future, discussing how autistic individuals often develop unique skills and perspectives that can be incredibly valuable.

Whether you’re a parent of an autistic child, a caregiver, or someone looking to understand autism better, this episode is a must-listen. It provides a compassionate, informed perspective on the complexities of autism parenting, offering both support and practical advice.

Tune in to our latest episode to explore these insights and more. Remember, you are not alone in this journey. There is a community here ready to support you every step of the way.

Listen now and join the conversation. Your journey to understanding and support starts here.

Scroll to read full transcript or LISTEN HERE.

>> Pastor Sarah: Hey, listeners, this is Pastor Sarah Jane. I am joined today with my friend Alicia Jones. she is a wife, a mother, and an authoress. We’ve been friends for a little over a decade. she actually is my social media manager and also helped me publish my m book. But she has how many books you have now?

>> Alicia: Ah, eight or nine.

>> Pastor Sarah: Really? Gosh, I am, like, thinking you have, like, a huge stack and maybe I’ve read several of them multiple times. I don’t know. but she is a historical fiction writer, Christian fiction, and I have loved her books. And so, we just kind of meshed well together over the years. And the last couple of weeks, we’ve been talking about autism because her son got diagnosed with autism was a year and a half ago. Yeah.

>> Alicia: It’ll be two years in August.

>> Pastor Sarah: Yeah. And so she has dealt with some significant struggles. I mean, one of the biggest ones I hear from parents are the meltdowns, and they are not like any kind of meltdown you’ve ever experienced. I mean, there’s two year old temper tantrums, which, oh, goodness, those are horrid. I’ve had two year old timber tantrums in my house for. For a long time. there are, like, one of my daughters actually went through toxic colic screams. my adopted daughter, those were horrid. But the meltdowns that autistic kids have are unlike anything you’ve ever experienced, because it feels like they’re behaving as though they’re in pain, but they’re really, like, over the top frustrated because they can’t communicate the needs they have. Right, right.

>> Alicia: Yeah. And the really sad thing about these meltdowns is their personality, their beautiful personality, and all of their strengths go right out the window in the middle of the meltdown, because all function goes away. and you never know when it’s gonna come back. And even when it does come back, we all kind of have a base point for our regulation that we start off for the day with, and then once there’s a meltdown, they could calm down, but they’re never gonna go back to as regulated as they were before. You kinda have to go to bed for the night and reset the next day. and so meltdowns are just. They’re difficult because, well, I would say the hardest thing about a meltdown is keeping. Keeping the child safe, making sure that in this moment when their brain shuts down, that they don’t run out into traffic, that they don’t jump off of the stairs or something like that. They don’t bang their head. so safety has always been the primary issue for us, is just making sure that in these moments, we have, you know, a place we can go, you know, to get reregulated.

>> Pastor Sarah: Right. Like, I have seen autistic kids that will melt down and they will bang their heads on things. deliberate or not, they’re banging their head. I’ve seen them slap their own faces. I have seen them without realizing the consequence of the pain that they’re going to put their body in, literally throwing their body off of things. And, you know, you could be concrete slab right underneath, and they don’t take into account what it’s going to feel like when I go off onto that concrete slab. yeah. And I’ve seen very dangerous situations where, kiddos have done that, but they’re not aware, like, there’s the disconnect is happening when they’re in a meltdown. All versions of rational thought processes are out the door. so that’s why in the last.

>> Alicia: Couple months, we finally got our handicap, tag for our car, because we had meltdowns where he tried to run off into traffic and we had, you know, go grab them real fast. And it’s like, you know, the closer we can park to the door, the better for our whole family.

>> Pastor Sarah: Yeah. which we’re going to talk about that in the next episode about environments, kiddos with autism, how they. How they behave in different environments, that the closer proximity thing is a good part of environments. But, you know, I think meltdowns are one of the biggest ones. I think, one of the other things that I’ve heard from parents is not being able. So that. And I, again, I don’t have an autistic child. but I’ve seen how frustrating it is for a parent to want to support their kid, and yet all the normal parent cues that you would get from another kid who doesn’t have autism. Like, if I heard my kid cry, I could tell that was a. I pooped cry. That was a I’m hungry cry. That was an I’m a tired cry. and that’s not the same with an autistic kid. Everything you think you know about parenting kind of goes out the door and you feel at a loss for words because you’re wanting to support your kid, and nothing you seem to think would help is helping.

>> Alicia: Yes, that’s right. And my first child was autistics. And not only was I learning something for the first time, but this was learning everything completely differently. And I had some ideas of what child children should look like that just were not accurate for my situation. I knew very little about child development in general, but then add autism to it, and you have to realize that it’s completely different. And you really have to set all of your expectations aside, and relearn everything you thought you knew. Everything.

>> Pastor Sarah: So you actually have a bigger family. yeah. And so as a sibling of a big family, you got to see the youngers and the olders and somewhat at times were like a mama roll, you know? and so you weren’t obviously prepared to be a mom yourself, but there were things that you knew, like, I knew how to change diapers, and I knew how to, you know, feed a baby, and I knew how to, make sure that they got the bath at this water temperature or whatever. I mean, there was things that you knew just because you’re around other siblings. but it didn’t prepare you for the really drastic difference it is to parent a child with autism, because from what, from what I remember, none of your siblings are autistic.

>> Alicia: Right. And I’m the oldest of eight, and I helped, you know, with my younger siblings. I was. I’m 20 years older than my youngest brother, so I had a lot of experience with babies, a lot of experience with toddlers, you know, got to watch them all get potty trained and all of these things.

>> Alicia: Literally everything I thought I knew, everything I had ever seen, does not apply to autism. And so I just had to completely change my thinking. Growing up, if somebody didn’t want to eat dinner, it’s like, well, they must not be hungry. Yeah, but an autistic child could be absolutely starving and still refuse to eat just things like that. And I didn’t know that, normally if a kid is sick, they might cry, or if they’re in pain, they might cry. But autistic kids sometimes can’t feel pain. They’re in horrible pain, but they don’t know how to express it. They may not even know that they are. That just results in a meltdown rather than the communication happening of, oh, I’m in pain, you know?

>> Pastor Sarah: Right.

>> Alicia: So everything is guessing. I have to guess about everything. Pretty much, yeah.

>> Pastor Sarah: I think another struggle that is one of the biggest things that I’ve heard from parents is the support. I mean, you have a great mom.

>> Alicia: I have.

>> Pastor Sarah: She has commented several times on things that, we have interacted with. She’s a very sweet lady, and she has raised eight kids, and yet I could go to my mom. I mean, I can’t right now because she’s got dementia, but when she was. When we were younger, I could go to my mom and go, hey, mom, what on earth am I missing? Child? You know? And I’m sure there were times that you were calling your mom and, you know, asking, hey, this is happening. You got any advice for that kind of thing? But the majority of what you would have gotten from your mom doesn’t apply in David’s case, because, yeah, I remember.

>> Alicia: One time David was having a meltdown, and I think it had lasted 2 hours at this point, and there was nothing I could do to calm him down. And I remember calling my mom and going, okay, this isn’t normal. I’ve seen tantrums. Most kids are over them in about ten minutes. Why is he screaming for hours? This doesn’t seem right. And my mom is very hesitant to, like, assume or throw a diagnosis out or anything like that. but she was like, yeah, you know what? That doesn’t sound right to me. And that was one of the things that I’m like, okay, my mom’s raised eight kids, and this doesn’t sound right to her.

>> Pastor Sarah: Right.

>> Alicia: It is time to pursue what the doctor thinks about all of this.

>> Pastor Sarah: Yeah. So there is a different, I mean, I think in more recent years, there has been some support systems put in place. Like, you know, we have the, like I said, the national, autism association. It’s the. If you ever have seen, I mean, I know you have, but just listeners in general, it’s the colored puzzle piece of, And it’s like, you know, it’s designating that, you know, we know we can help you fit that piece where it belongs kind of thing. they’ve got a really great organization to support families, but earlier than a few years ago, it really wasn’t something that was, that parents felt like they could find support for. So you aren’t the only one that has felt as a parent that I’m literally guessing. I’m guessing. I’m doing the best I can. I’m throwing out everything I can at you to figure this out. And at some point I’ll check off enough boxes to where I finally get the right answer, you know? yes. So I don’t think, although there’s been support, like I said, in the last probably decade, it’s been very slow growing. And so I think that’s one of the biggest struggles for parents is that they feel like I can’t even go to the grocery store because I’m afraid somebody’s gonna, you know, tell me I’ve got to leave because my kids. Is my kids causing a scene or, you know, and nobody’s there. Nobody’s. Nobody’s feeling how I feel, like nobody can support me in this situation.

>> Alicia: Right. I remember one time before David’s diagnosis that he was going through a stage where he wouldn’t wear any clothes. No clothes at all. And that’s very common. and I was so proud of myself because I got him dressed and he had all of his clothes on, but he refused to wear shoes. I’m like, that’s okay. We were just going to the post office, and I couldn’t just carry him into the post office because he would run off. It’s called eloping. He would run literally out the door. So I just to walk into the post office, I had to get out the stroller. I put him in the stroller, I go all the way in and the first thing somebody does is make a really honestly unpleasant comment about the fact that my child wasn’t wearing shoes. And I finished up at the post office and I got back into my car and I just cried my eyes out because it had taken me like a full hour.

>> Alicia: This five minute task. And all I got inside that post office was somebody making some comment. And I’m like, hey, he’s wearing a diaper. Let’s all praise the lord right now, right?

>> Pastor Sarah: We got pants on the kid, you know? And instead of somebody seeing you as a young mom that needed some encouragement, they brought down your hours worth of getting him ready with one small little sentence.

>> Alicia: Yes.

>> Pastor Sarah: Yeah.

>> Alicia: And that’s very common. I mean, especially in the early days of diagnosis. I was just so sensitive about everything, you know, I’d get comments and it would just shatter me. And now I’m like, we’re going to own this. He has autism, we’re in public, we’re doing good. I dare you to make a comment.

>> Pastor Sarah: Right? Come at me.

>> Alicia: I know, I used to be so sensitive about it.

>> Pastor Sarah: Yeah, I know some of the struggles. like you mentioned some of this before, but I remember us talking, talking about it. at other times, like different things you have to use. Like you cannot use certain cups, you can’t use certain plates, there’s foods. I remember us having a conversation a while back, specifically about his food. And. Yeah, you know, not, not that this is David, but there are kiddos that like, they can’t wear socks if the inseam is felt on the toes. So I knew a kid that. So, ah, just to kind of explain this a little bit, autistic people also have a sensory kind of issue. some of it is the texture of food, some of it’s the feel on their body with things. Hence the reason why no clothes. and I knew a kid that they had to have their socks turned inside out so that, that inseam, the sewn part right around the toes, was not touching their feet. And it took this mom a, year and a half to figure this out because her kid was not talking. She didn’t even know that her kid had autism at the time. They just constantly had meltdowns every single time socks got put on their feet. And she tried everything. She purchased all different kinds. Maybe it was a soft version, maybe it was a harder version, maybe all kinds of socks.

And it wasn’t until somebody suggested flipping the socks inside out that the kid was finally able to put on shoes and be fine. And later on she, you know, realized the kid got diagnosed with autism. But I mean, this is. Clothing is an issue sometimes with autistic, kids, they don’t like the tags. I knew a kid that couldn’t have tags still in their shirt. Excuse me. They had the tags cut out, because it was like something on their skin that they were constantly wiggling around. Like, I don’t understand why this feels this way.

So what are some things that you’ve noticed specifically about David that’s like, yeah, we can’t do that anymore. We just can’t. That’s not something we can do in our house.

>> Alicia: Well, he kind of has all of it, you know, all of the accompanying disorders. With autism, we have the sensory integration, we have the mixed expressive receptive language disorder, you know, the feeding disorder. We kind of have all of it. And so thankfully, we are at the stage where clothes stay on and I just buy lots of soft clothes. But we’ve. He has been able to tolerate clothes, which has been great because there was a time when he couldn’t. but, you know, spoons, forks, cups. We have to have very specific, specific utensils. he doesn’t have good muscle tone. That’s pretty common. So we have to have special sippy cups so that he can get watered down. we’re still working on forks and spoons, but, you know, we use the plastic ones that are easier to grip so that he can try to shovel food in his mouth. we honestly, we don’t eat at the table much. we have a lot of just. Are you going to eat? Okay, eat on the couch. we don’t have meal times. Meal times don’t work. he needs to be able to eat pretty much on demand.

>> Alicia: That’s just little things that you don’t think about. Like, well, a lot of people can have meal times, we really can’t. we just have food up on the counter and food is always available. we have weighted blankets. You know, there’s the accommodation. For sleep. He needs deep pressure in order to sleep. and honestly, this is one that’s, a little bit more difficult because I think all moms are touched out. But one of David’s big needs is lots of closeness, proximity, touch. He loves hugs, he loves snuggles, lots of touch. That’s how he makes sense of the world. And he needs a lot of massage in order to just know where his body is, you know. sometimes he can’t really tell where his feet are, his arms are in order to calm his body. He just needs tons of, tons of touch, tons of massage. He’s a real cuddlebug.

>> Alicia: and you know, for me it’s like, okay, got more than one kid and we can’t quite cuddle all day long. But you know, that’s one thing we do in our household is lots of cuddle time. you know, we have so many accommodations in our house at this point, it’s kind of ridiculous. I remember at one point we had to lock everything up because he couldn’t read a book. He would just tear up books. He couldn’t look at pictures he just wanted to tear. So we had to lock up all of the, all of the books, you know. same with like movies and dvd’s and games, you know, everything needed to be destroyed, not played with. So that’s another accommodation we have is lots of things, stays locked up and we rotate things. And another thing we’ve had to do to just kind of accommodate for the, for the needs is have special locks on our doors. He eloped a lot. for listeners that aren’t familiar with that, is that just basically running off because there’s no sense of danger? No. So he would just take off.

>> Pastor Sarah: Yeah.

>> Alicia: And had to put special locks on the doors because again, he doesn’t sleep. So we didn’t know if he’s going to wake up in the middle of the night and take off. you know, just, just little things like that. lots of safety around here, I think.

>> Pastor Sarah: one thing that is like why those things happen is autistic. People input data in themselves differently. Like they’re quite tactile in retaining information. So you can’t really just tell David, hey, don’t run off because it’s dangerous. He has to put his feet in motion to see what happens and everything has an effect.

>> Alicia: But unfortunately you can’t do that because some things are just too dangerous.

>> Pastor Sarah: Right. so it’s the like ah, when you were talking about the tearing thing, that’s a very tactile thing that is in to him. It’s not being destructive. Right. It’s not like I’m angry and I’m ripping up these pages to make you so mad at me, you know, because I’m mad at you. It’s the, you know, I’m just gonna rip one out it’s just the gratification of hearing the noise and feeling what it seems to feel like he’s putting data in his, in his brain. right. And so the same with food.

>> Alicia: All food must be touched.

>> Pastor Sarah: Yes.

>> Alicia: It has to be touched, it has to be licked, it has to be smelt, it has to be observed. It can’t just be eaten. It must be played with.

>> Pastor Sarah: Yes. Because they just input data differently. And, so when I talk to parents in therapy about this situation, I try to get them to see it from that perspective because they see it as you’re just making a mess, stop touching your food. And it’s like, no, he’s trying to learn what this food is. He’s trying to learn why the feel is the feel. Like putting all those. He’s trying to, in his way, connect the dots. Whereas I can just look at a carrot and know it’s orange and know it tastes like a carrot, you know? it’s, it’s totally different with autistic kids. And so as a parent, the biggest struggle is from my perspective, but I certainly want to hear yours.

I think as a parent, the biggest struggle is just being able to your kids language.

>> Alicia: Yeah, I would say that’s definitely true. And unfortunately, I came from a little bit of a background where everything is considered a moral issue.

>> Alicia: At first I really struggled because I would see him do something like rip up a book and my mind instantly goes, that’s naughty disrespect on purpose. Instead of, this is him figuring out texture.

>> Pastor Sarah: Yeah.

>> Alicia: Or with food. Oh, he’s just picky and ungrateful is where my mind originally went. It’s not, he’s not ungrateful, he’s not picky. His brain literally just doesn’t understand this food or even makes him think it’s unsafe.

>> Alicia: And to take as much time as he needs to figure it out.

>> Pastor Sarah: Yeah, yeah.

>> Alicia: It’s just been a real learning curve for me to not see everything as behavioral or moral issue, especially in a child who can’t make a conscious decision about whether or not it’s right or wrong. He’s not sitting there thinking, is this right or wrong? He’s just sitting there trying to discover life, discover how things work.

>> Pastor Sarah: Right.

>> Alicia: big mental change for me just to realize it’s developmental, not moral.

>> Pastor Sarah: Yeah. And you’re gonna, as he grows, you’re gonna see him do things in and some other person’s gonna look in going like he’s destroying your tv and you’re like, no, he’s just trying to figure out how the pieces go together. Right. because, I mean, like, we talked about on week one, how there are very smart people in the world that had we had the ability to diagnose autism back then, they would have been diagnosed with autistic tendencies or being on the spectrum. And they are the people that would take a machine apart to see how the machine’s little individual pieces worked.

>> Alicia: Exactly. Yeah.

>> Pastor Sarah: And then put it all back together to make it more efficient, you know? so I wouldn’t be surprised if David’s a teenager and he’s taken apart, you know, your computer or your husband’s lawnmower or something, and you’re like, son, it worked perfectly fine. Why are you taking it apart?

>> Alicia: Why are we taking it? No, I fully expect that. that’s how my husband is, and my husband doesn’t have a formal diagnosis, but we’re 99% sure my husband is also autistic and he takes everything apart, puts it back together. So David’s going to be the same way, I’m quite sure.

>> Pastor Sarah: Yeah. Well, this was a very good, informative, and, I think, encouraging talk for some families to hear that they’re not alone, that, you know, parents are dealing with the same struggles when they have an autistic child. so thank you, listeners, for listening for week three of the autism talk and hearing about what struggles parents have as well as what the autistic kids have. next week we’re going to be talking specifically about autism in different environments. we’ve got some stories for that one. So we love you. Remember that you are seen and dearly loved. God bless you.

Tune in next week for the final episode in this series!

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