In our latest podcast episode, we had the honor of speaking with Alicia Jones, a dedicated mother of two boys, one of whom has been diagnosed with autism and ADHD. Alicia’s story is a testament to the challenges and triumphs that come with raising a child with special needs. Her candid discussion offers a glimpse into the daily realities that many parents face, shedding light on the need for greater understanding and support within our communities.

Alicia shared her experiences of the immense preparation required just to leave the house. From packing specific foods and medications to ensuring her son has his favorite headphones and tablet, every outing is meticulously planned to avoid potential meltdowns. The simple act of getting dressed can be a monumental task, requiring patience and time that many of us take for granted.

One of the most poignant parts of our conversation was Alicia’s struggle with attending church. Despite her deep faith and desire for community, the lack of accommodations and understanding within the church environment often made it impossible for her family to participate. This highlights a broader issue: many institutions, including places of worship, are not equipped to support families with special needs children. Alicia’s story is a call to action for greater inclusivity and education within these spaces.

Alicia also touched on the importance of small acts of kindness. She recounted a heartwarming encounter with a stranger at an airport who complimented her son’s behavior and shared her own experiences as a parent of an autistic child. Such moments of empathy and understanding can make a world of difference for parents who often feel isolated and judged.

As we wrapped up our series on autism, it became clear that there is still much work to be done in terms of awareness and support. Parents like Alicia are navigating a complex world, and it is our collective responsibility to create environments where they and their children can thrive. Whether it’s through better accommodations in public spaces, more informed and compassionate communities, or simply offering a kind word, we all have a role to play.

Tune in to this powerful episode to hear Alicia’s full story and gain a deeper understanding of the realities faced by families with special needs children. Let’s work together to build a more inclusive and supportive world for everyone.

Keep strolling to view full transcript or head over to Spotify to listen in!

 

>> Pastor Sarah: Hey, listeners, this is Pastor Sarah Jane for the fourth and final week of our talk on autism with my very special guest, Alicia Jones. She is an authoress, a wife, and a mother of two really cute little boys, one of which was diagnosed with autism and ADHD. But, you know, we’ve been talking a lot about him. But let me just say, her other little boy is a doll. And, you know, he’s a boy. And boys are very active. It doesn’t matter whether you have a diagnosis or not. They like to climb, they like to make messes, they like smells, they like destruction. they like loud noises. And I’m sure, he is doing the exact same thing, just being a boy. But I almost feel like to Alicia, it’s like a little reprieve, because the, amount of dedication and time and support that David needs, probably feels like as a mom, she’s not giving enough support to her other kiddo. but also feels like he’s easier. You know, it feels easier. but they’re both adorable.

>> Alicia: Been really fun with Philip lately because he’s three and he’s talking.

>> Pastor Sarah: Yeah.

>> Alicia: I’ve never had a three year old who could talk with me or do the things that a lot of three year old boys do. So it’s been fun. It’s almost like being a new parent again, because my oldest is autistic, but my second born, you know, he’s just doing typical three year old stuff I never got to see. So that’s been really fun.

>> Pastor Sarah: Yeah. So, you know, you do have the both sides of the parenting wheel. One that needs a bunch of support and one that doesn’t necessarily, but that doesn’t mean it’s any easier getting out the door. And, I mean, he’s three, so he’s not fully independent, so he still needs you to help get shoes on or help remind him that we got to go brush your teeth or, you know, let’s make sure you’ve gone potty before we left the house kind of thing. And so there’s still a level of dependency that Phillip has on you. But on top of that, you’re also trying to get out the door with an autistic son. Talk to me about how you have to get out the door.

>> Alicia: Well, it’s a whole process, because wherever we go, we know that if we’re going somewhere where food is going to be served, they’re not going to eat it. And I will say, even though Phillip’s not autistic, there are certain things that he learned from having an autistic older sibling.

>> Pastor Sarah: Yeah. What’s that?

>> Alicia: So some of that has to do with feeding. Like, big brother doesn’t eat meat, so Philip doesn’t think he needs to eat meat either. potty training isn’t going great because who wants to go on the potty when your big brother doesn’t have, right. you know, different things like that. So wherever we go, we have to pack all of our food with us and, in our special cups with our special food. And when I say pack food, I mean there may only be one specific brand in one specific flavor of something that David will eat. So, you know, we have to just pack that. we have to have all of our pull ups, because it’s not potty trained. We have to have extra clothes because pull ups only last so long. Sometimes they leak. If we’re not in a place where we can change clothes, or change the pull up easily. So accidents happen. we generally need headphones, we need medication, we need tablets and headphones that fit into the tablets. Sometimes we need a stroller. So just getting out the door requires us to have a lot of different things that we need. And then there’s the whole autistic element of not wanting to be rushed. So if I try to hurry him up, he’s not going to hurry up, he’s going to dig his heels in because he doesn’t want to be rushed. He sees it as a threat. His nervous system just can’t handle rushing. So I have to allow probably double or triple the amount of time that the ordinary parent would allow to get dressed to get out the door. David’s not currently able to get himself dressed, so I’m getting a five year old and a three year old dressed, getting them out the door. And let’s say even if it’s an amazing day and there’s no meltdowns happening, there’s still the ADHD element. So can he find his own shoes and put them on his own feet? Probably not. I would still probably have to guide him to where the shoes are, you know, and he might do one and I might do one. but then if it’s a bad day and we have to go somewhere, then that gets really unpleasant because there’s meltdowns and screaming and sometimes just a refusal to get to the location that we’re going to. So sometimes we’re all completely exhausted before we even get to the store or church or wherever we’re going.

>> Pastor Sarah: So, you know, as a parent, your kids, well, at least as young as they are, they’re going everywhere with you. Is there any setting you think that is more difficult to address or handle with your kiddo than others? Like, is there one that’s like, I have to go here today, but I can’t.

>> Alicia: I go almost nowhere unless my husband is with me. It takes two of us to handle two kids.

>> Pastor Sarah: Yeah.

>> Alicia: and I will say, there are certain places that they do really well in, and then there are certain places they just don’t. And anywhere that is extremely loud and there’s a lot of people they don’t do well in. So Costco is always rough. Very, very rough. So that might be a situation in which we put the headphones and give the tablets and a snack in order to go get our grocery shopping done.

>> Pastor Sarah: Brilliant.

>> Alicia: but sometimes that doesn’t work because with the ADHD, David’s constantly craving that dopamine. And maybe it’s been a rough day and he’s not getting enough of it, so he’ll turn to bugging his brother to get like that. Like, Phillip’s three. Phillip does not tolerate that super well. Philip doesn’t let anything go. So sometimes it ends up in a fight right in the middle of Costco and everybody’s screaming and it is what it is. So loud, noisy environments just really don’t help that situation either. There’s no place to go to calm down. So generally my husband is always with me and we each take a kid or he’s, you know, taking care of the kids while I shop, or he watches the kids at home and I shop by myself, but I pretty much never go anywhere with the two boys and myself. It’s not, it’s not possible for safety reasons. everything could be going fine and then there could be a trigger of some sort and David could try to take a off across the parking lot.

>> Pastor Sarah: Right.

>> Alicia: He’s also a very large five year old. He’s 53 pounds and very tall and the big guy. And so, you know, it’s the kind of thing where it’s like, for safety wise, I can’t really hold both children at the same time. So just little things like that.

I would say also the hardest place in, in the world for us, unfortunately, has been church. Church has been extremely difficult. and I think there’s just a lot of lack of knowledge about child development in general within the church. But then when you add autism to it, it’s a whole new ballgame.

>> Pastor Sarah: Yeah. we had, in a previous church we were in, we had a family that wanted to attend our church and they had said, you know, we have an autistic kid, that can’t go into kids church. Would you care if they’re in church with us? But they’ll have to wear headphones because the music’s too loud. And sadly, the pastor was like, we’re not making special accommodations. I thought that was horrible. It broke my heart. sadly, not being the lead pastor, there’s nothing I can say about it because I did not have the final say in anything. And so that family just didn’t go to church. That it was a, it was a single mom with two kids and she wanted to come to church and just knew how difficult it was to take her kiddo out in public. And she, she had accommodations that she knew might help, but just wanted to make sure the church was going to support her and that just wasn’t the case. I have seen some churches have like, special rooms. They call them like, cry rooms that they usually put, like nursing moms in, or they put screaming babies in, or they put autistic kids in. And that’s great. That’s a, that’s a, a solution. It’s not best practice solution. And like you said, that a lack of education is part of it. I think if people just took the time to be like, what is it that has worked for you? What is it that we can do? How can we put this in place? And so I know you and I had really extensive, several conversations, specifically about the church situation. tell me about how that happened, because you weren’t going to church for a while. It’s not that you didn’t want to, it’s that you got a place where you realized you couldn’t be in church.

>> Alicia: I couldn’t, no. There was a time when, this is before David was verbal, but he would scream his head off just when we get well into the parking lot. Because as far as he was concerned, this was the awful, terrible place where he had to be quiet, not move his body. He couldn’t talk, nobody spoke his language. And it was very overwhelming with tons of noise and lots of people and lots of lights. and we couldn’t leave him in a class because nobody had the education to take care of him. And even then, when I mentioned, like, oh, he runs off, you know, there’s kind of this look on their face, like, well, what do you mean he runs off?

>> Pastor Sarah: Right.

>> Alicia: I’m, Like, there was nobody there to really keep an eye just on him, which is what he needed. Almost like a teacher dedicated just to him. But if we put him in church with us, he hated it. Absolutely hated it. And then he would make lots of noise. Now, I’m fine with that. I think children, you know, are allowed to make a noise. They’re the church of today, not the church of later. But not everyone sees it that way. They see it as being disturbing. So I would often end up in a room by myself with him. Or we just have to turn around and leave church ten minutes after we finally got there, after all of the work it took just to get into the cardinal. so church has not been easy. I think that somewhere around 80% of special needs families are unable to attend church because there’s just no real support there. and now I have two kids, and, you know, like you said, boys are hyper. And so my three year old doesn’t want to sit either. So now I’ve got two kids who just really don’t think this is great.

>> Pastor Sarah: Yeah, but you grew up in a household that was a church going household. And so I’m imagining that, having that be such a profound impact on your life, and then you’re basically realizing you can’t have that in your life. That kind of community in your life has to feel very, Well, like the lack of support. You know, we talked about you. You feel like you don’t have a support system, and there really hasn’t been a support system for autistic people for years and years. And so here you knew the church as a support. You knew that it was a community that. That, was there for their family. And yet in this particular situation, you didn’t feel that way.

>> Alicia: Yes. And like you said, I grew up going to church. Every time the doors were opened, I started. I was the church pianist. At the age of 15, I was teaching Sunday school. By the time I was, like, 17, my husband was in full time ministry. That’s how we got married and knew each other. It’s. We served in ministry together. And then all of a sudden, not only can we not serve in church anymore, but we can’t even go to church anymore.

>> Pastor Sarah: Right.

>> Alicia: and for some. I mean, I’m not saying this is how it should be, but some of my worth was attached to how much I was able to serve at church or how often I was there, and then I just can’t go anymore. but what really made it worse was there were places we could go because they had accommodations for us. So I can go to Dollywood, which is like a pretty theme park here, and there’s accommodations for me. There’s people who will bend over backwards to help me. I’ve taken my son on planes, and there’s a disability program, and the stewardess will be right there saying, I am here to help you. But when I get to church, there’s a whole lot of, well, there’s nothing for you, or there’s a lot of judgment because everything’s still chalked up to a moral issue or a sin issue instead of a developmental issue.

>> Pastor Sarah: Right.

>> Alicia: And after I’ve been screamed at all week or screamed at, you know, meltdowns, trying to get my son in the car, I really don’t need to get to church and be judged right for something that isn’t my fault and isn’t his fault either. and so that’s just been really difficult because I believe in church, I believe in community, but the church is pretty far behind when it comes to disabilities. It’s pretty far behind when it comes to developmental issues in general, just child development. but with autism, it’s been extremely difficult because so many people will look at you and say that it’s a sin problem instead of realizing we need to accommodate and have grace and just have lots of love.

>> Pastor Sarah: Yeah. you just said something that I just want to reclarify for everybody who’s listening, make no mistake, this is not a sin issue. It is a neurological dysfunction and a, ah, developmental dysfunction, a neurological development dysfunction. So neurological has everything to do with your brain. You have two hemispheres of your brain. We don’t operate in both full, complete hemispheres. More often than not, most people operate in one side or the other. Predominantly. There’s. There’s one side of your brain that’s very artistic and fly by the seat of your pants and, no rhyme or reason. Then there’s the very analytical thinking, scientific side of your brain that everything has checks and balances. More often than not, people operate in one or the other. They dysfunction from the opposite side of their brain. And, for autistic clients, or even especially autistic people with ADHD diagnosis, they’re firing so many electron impulses throughout their brain. It’s like, a normal functioning brain, these impulses are quite slow. And you have time to address what’s being given to you and. And understand where it’s coming from and what it feels like and what it looks like. But for an autistic person, or an autistic person with ADHD, or just ADHD in general, their impulses are firing so rapidly and it’s almost like a big ball of knots that they cannot differentiate things from other things they can’t, understand logic, reasoning, step by step stuff. so it is not a sin thing. It is a breakdown in the developmental stages of how their brain functions. Now, I do not say that. To say that that means they are not capable of stuff or that they’re not smart. As we addressed in previous, episodes, some of the smartest people I know are autistic. some of the smartest people that have ever walked the earth were autistic. I have known low functioning autistic people that still do things that my brain cannot do. So, I don’t know, I just feel like here’s one of the saddest things I’ve ever experienced. I have been a mother who’s gone through a grocery store with a kiddo that’s had a meltdown. my kiddos meltdowns were nothing like an autistic meltdown, but I’ve experienced meltdown in a grocery store. You feel like at this point, I don’t even need the milk. Let’s just go. Because so many people’s faces are staring at me like, I can’t get cereal for my son. because I’ve got so many people, you know, people judging me. But right now, I’d rather walk out and not have cereal for my son than to deal with this. and that’s a minor meltdown. But I have seen the most judgmental people at grocery stores and at churches. that look at parents like, I cannot believe you are allowed to have a child. you cannot get your act together. You just need to spank that kid. You just need to do this. You just need to do that. And I just want to say, take a moment to consider the possibility that you have no idea, ah, what that parent had to do to get to the grocery store or to get to church. You don’t know that it took them 3 hours to make sure their kid was fully dressed because the tag was itching their skin or because the, the sweater was too scratchy or it was too hot or the color did not feel good to them. You have no idea the painstaking process it was to get out the door. And for somebody who has an autistic kid, like we said earlier, putting pants on is a win. So if they’re having a meltdown in the grocery store or church or wherever, have a little grace to say. I have no idea what this person dealt with before they got here, but I know I can impact them by how I behave while they’re dealing with this. Maybe I smile. Maybe I ask them if, I can help them out with their groceries. Maybe I ask them if, you know, they need a refreshment that I can grab them really quick. Something other than the judgmental look, the comments of why does your kid not have shoes on, or the display of annoyance because it’s disruptive to what is supposed to be a quiet atmosphere. Maybe take into consideration that that parent has a behind the scenes that you know nothing about.

Sometimes people just need to say something nice to special needs parents

>> Alicia: And on that note, I actually have a really positive story that just happened to, couple, I guess it’d be a month ago now. We were coming back from Scotland. Yeah, we were in London. We were getting ready to board our long eight hour flight. And, you know, we’ve been traveling for two weeks in Scotland, and I sat down in a very crowded room. We were waiting to board our plane, and David’s sitting next to me, and the sweet lady comes over and she goes, she asked some kind of question about David. I don’t remember what it was. And I clarified whatever comment I made with saying he’s autistic. And she said, I was going to ask you. I was going to ask you, because, first of all, I want you to know he is incredibly well behaved. I was like, oh, well, I’m just going to cry right now. second, my son is autistic, and I want you to know that he has his master’s degree.

>> Pastor Sarah: Oh, my gosh. I’d have been bawling, Alicia. I would have been bawling.

>> Alicia: I was about to lose it. She’s just like, I want you to know that you’ve got this, and your son is amazing, and he’s so sweet. And I was just like, well, that’s exactly what I needed to get me through, you know, this long flight from London back to the states. So, you know, sometimes people just need to say something nice. And I think for all parents, but especially for special needs parents, that’ll carry you for weeks. Sometimes just. Just knowing somebody took five minutes to say something nice.

>> Pastor Sarah: Somebody noticed.

>> Alicia: yes. So that was a very happy moment that I’ll probably remember forever, because it was just so sweet.

>> Pastor Sarah: Yeah. We have enough, we have enough negativity in this world. We have enough hatred in this world. Be the person that looks at a situation and sees. Sees the very best and then points it out. there are times that I have seen customer service people really be very nasty to their clientele base, and I have stepped up in support of the clientele base to be like, you can’t address your client that way or whatever, but I actually will go out of my way to give a compliment to somebody that I see that just did something nobody else would do. Like, you. You know, I don’t know. I can’t even think of an example right now.

Just the way they smile, or just because they hold the door open, or just because they, recognize something about you. Be that person. I mean, even if it seems weird that you’re complimenting them on something, they will hear that in their head all day long that they got a recognition for something, even if it’s as small as, you know, you noticed that I needed a refill and I didn’t have to wave you down. Thank you for being so attentive, you know?

>> Alicia: Right, exactly.

>> Pastor Sarah: And so, especially with parents, if you notice that there is a kid that, you know, travel, especially travel, is hard in general. Just as an adult, for put kids into that mix, my husband and I are going on a trip on Sunday, and we’re going to be gone for, I think, ten days. And we are traveling with three of our five children who have never gone on this kind of travel before. I mean, they’ve gone on a long flight, but they were super young, so they don’t necessarily really. They remember being on a plane, but they don’t remember what it feels like to be on a long flight. And so. But they’ve never been to where we’re going. And, you know, travel as an adult is hard. Making sure you’re on time, making sure you’re, you know, in line when you’re supposed to be in line, having to, you know, get a seat that makes you feel comfortable. But then adding kids to the mix is a whole nother story. And then adding kids with special needs is even another story. Like, I have one child that has sensory issues she’s had since birth because of things that occurred to her in utero before we adopted her. It has caught. It caused her to have sensory issues, and so it’s uncomfortable. She needs to know, like, a step by step, what are we doing? Like, what’s the next thing we’re doing? When are we supposed to get there? and so it is very stressful to travel. So if you notice that somebody’s kids are well behaved, or you notice that, you know, some kid is being polite, say something, because you never know what that parent had to do to get out the door.

>> Alicia: Yes, exactly. Yeah.

>> Pastor Sarah: Well, Alicia, I am so grateful that you came on. I mean, we’re good. I’m going to have you on again because we have other topics that we want to talk about, because you and I have a wealth of things that we discuss.

>> Alicia: Yeah, we do.

>> Pastor Sarah: But I appreciate the special needs aspect, because I think there’s not enough people that understand this and not enough people that support special needs parents and their children. and so just even the littlest education goes a long way in combating against the behaviors that people see from those who don’t understand.

but before we go, I want to ask you some quick questions. Are you a tea or coffee drinker?

>> Alicia: Oh, I’m a coffee and tea snob, but if I had to choose one, I’d choose coffee.

>> Pastor Sarah: Okay. are you a early bird or night owl?

>> Alicia: Night owl.

>> Pastor Sarah: Do you prefer, trips that involve being on the beach or in the woods?

>> Alicia: Oh, man. Wow. I don’t know if I can choose that one. I guess I probably the woods, but that’s why I loved Scotland so much. It was all beach and all woods all at the same time.

>> Pastor Sarah: One day I’m going to go. Cause I’m 72% Scottish, and I’m like, I was so jealous of your trip. What is your idealistic, or I should say your trip of a lifetime that you want to do?

>> Alicia: Scotland was really the trip of a lifetime. I think next I would absolutely love to go to Rome or Vancouver, either one of those.

>> Pastor Sarah: That’s a big difference, Rome or beautiful Vancouver.

>> Alicia: One is, like, all mountain, and one is lots of, you know, city and museums and stuff. So.

>> Pastor Sarah: Yeah. well, one of your books had a. Had a historical aspect of Rome, so that would be kind of a cool.

>> Alicia: Yes.

>> Pastor Sarah: who is your biggest influence on your life? Like, who is, whether it’s, you know, a dead or alive person, who was, like, somebody that you looked up to and admired?

>> Alicia: my grandma was a huge influence to me. She still is. And a lot of things. as far as, like, authors, I was really influenced by Emily Barnes. just her sweet sweetness. And I’m a clean freak.  There was a lot of stuff she helps me make sense of in all of her books. Probably sounds silly, but she just really, really inspired me.

>> Pastor Sarah: Yeah. Favorite pastime.

>> Alicia: On, a watercolor.

>> Pastor Sarah: You have beautiful watercolors. Beautiful.

>> Alicia: Thank you.

>> Pastor Sarah: You did a little cottage once, and I was like. It reminded me of, Oh, gosh, what’s his name? Michael. Oh, I cannot remember his name. He’s a artist, a painter that paints these scenes that you see in cat. In, like, calendars, and they’re like.

>> Alicia: Thomas Kincaid.

>> Pastor Sarah: Yes. Thomas Kincaid. I don’t know why I was saying Michael. Yes.

>> Alicia: He’s one of my absolute favorite artists.

>> Pastor Sarah: Yes. Your little cottage reminded me of one of his. It was beautiful.

>> Alicia: I love him.

>> Pastor Sarah: Okay, last question. what would be your favorite meal? Like, if I had to have my last meal, what would my last meal be?

>> Alicia: It would be my mom’s enchiladas. Love it, but it has to be my mom’s enchiladas. There’s something about, like, I have her recipe. I can make it, but the fact that I have to make it makes it not as good. Yeah, it’s not as good. It’s. It’s better.

>> Pastor Sarah: So.

>> Alicia: Her roast, though, her roast beef is pretty good, too.

>> Pastor Sarah: Yeah. well, I hope she’s listening so she can get a little bit of encouragement that she’s such a great cook that you’re like, it’s got to be moms.

>> Alicia: She’s a very, very good cook, if I do say so.

>> Pastor Sarah: Well, I love you for being on here and being such a support to me. And thank you so much, for just your time. If people want to find you, because I know you have access to some social media links, where would they find you?

>> Alicia: my public page is called Little Corners, and, that’s where author updates and sometimes some autistic stuff goes out of. I’m hoping to revamp it and just talk about homeschooling with autism a little bit more. So maybe if I actually get a spare moment, you’ll see some updates over.

>> Pastor Sarah: There at little corners on Instagram, right?

>> Alicia: And Facebook. They’re both little corners as Instagram and Facebook.

>> Pastor Sarah: Yeah. and if you ever have any questions that you need some wisdom for with, writing, editing, Alicia is a wealth of information for that. But again, thank you so much, and I love having you in my life, and I’m blessed. My life. Thank you, listeners, for listening to our four, episodes on autism. If you haven’t heard the other ones, please go back and listen and just remember that you are seen and dearly loved. God bless you.

Thank you for tuning in!

 

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