Episode 9: Raising an Autistic Child: What No One Tells You

Parenting an autistic child is a journey full of challenges, joys, and surprises, often in ways no one prepares you for. In this podcast, we dive into the real struggles families face, how to recognize early signs, and the practical resources and strategies that can help your child thrive. Honest, insightful, and compassionate, this episode offers guidance, encouragement, and stories from us as parents navigating the path of autism. No parent should feel alone in this journey. 

Transcript

SPEAKER_01 0:04

Hello and welcome to the Brutiful Chaos with Kiki Podcast. Thank you for joining us. Welcome to Episode 9, Raising an Autistic Child, What No One Tells You. First, I want to apologize for going a little MIA. I've been focusing on writing my first novel, but I'm back and I'm excited to bring you more episodes. So today's episode is a personal one for us, and honestly, it's one that I've been wanting to do for a while, but I didn't know quite how I wanted to put it out there. Because we're talking about what it's like to raise a child with autism, and I feel like there's so many misconceptions about what that even means. When most people think of autism, they picture a very specific stereotype. And I'll be honest, that's what I thought too. But living with it, it looks completely different than anything I ever imagined. So, honey, what did you think autism was?

SPEAKER_00 0:52

Honestly, I didn't know what to expect at all. I had nothing to go on, and I was really just kind of going into it blind.

SPEAKER_01 0:59

So it's usually not the child in a wheelchair or the typical special needs child. They usually just simply have a cognitive impairment that makes their brains not be able to process the outside world like everyone else. Usually they have difficulties processing details like speech, emotions, social behaviors, or cognitive delays like simple everyday skills, like using scissors, following directions, or staying focused on a task. Things that people wouldn't really notice if you weren't looking for it. Obviously, there's more severe cases that can be paired with other disabilities as well. Luckily, ours turned into a very mild case after many therapies and early interventions. So looking back now, there were signs. We just didn't fully understand what we were saying at the time. Our child wasn't crawling, he wasn't walking, he didn't start walking until around 19 months. And even with speech, there were words, but it didn't quite feel like they were understanding the words behind them. For example, I'm a photographer, so we have a ton of pictures on the walls in our home. He would point to them and say, Mommy, daddy. At the time we thought, okay, he knows who he's talking about. It seemed like he was making that connection. But then I remember this moment at the ENT office, he pointed to a picture of an ear on the wall and said, Mommy, daddy. And that's when it hit me. Something wasn't connecting like we thought it was. It wasn't that he wasn't trying, it just things weren't processing the same way in his brain. And then there were other things at the time that we didn't realize were signs, like eloping, which is just running off without the awareness of danger. Things like playing in his own feces, toe walking. And when you say those things out loud, it sounds obvious, but when you're hit with it as a parent, you're just constantly questioning yourself: like, is this normal for a boy? Am I overreacting? Like, what is normal? What's not normal?

SPEAKER_00 2:40

Another thing was boundaries. For example, we went to a restaurant years ago, and he kissed another boy on the cheek, and he was around five years old, and to him it seemed normal, but it was he was clearly breaking boundaries.

SPEAKER_01 2:58

So let's talk about the moment that everything changed. This is where I truly feel like everything happens for a reason. At the time, I was teaching a photography class at the college, and one of the women in my class just happened to be a doctor. After one of these classes, we ended up going on a play date at the park, and she was watching him interact and just observing, and she gently brought up, she said she noticed some signs of autism and recommended that we get him evaluated. And that was the first time I actually heard someone say it out loud. I'll be honest, it's not really something you're prepared to hear. What did you think when you first found out that our child was autistic, honey?

SPEAKER_00 3:36

Well, it made sense because he was different. He was obviously different from the other kids, just walking on his toes. He was obsessed with different textures, more so than the other kids. Um, I just I knew something was wrong, but I just really couldn't quite put my finger on it.

SPEAKER_01 3:54

We are really glad that she spoke up because it changed the trajectory of our child's life. I wanted to talk about this today because honestly, if it reaches even one family or one child, then it's completely worth it. I think the stigma around autism can feel heavier than the diagnosis itself. And that fear holds a lot of parents back from getting their child tested. There's this worry about labels, about their child being treated differently or left out. There's probably more kids on the autism spectrum sitting in your child's classroom than you even realize. So let's talk about early intervention. Because we caught it early, we were able to get him the help and the resources he needed. And I can't stress this enough. Early intervention makes such a huge difference. We were able to get him into therapies, into specialized school settings, and give him the support he needed to learn how to function in a more typical environment. And if you're listening to this and you even have a small feeling that something might be off, trust that instinct. It never hurts to go get an evaluation, preferably with a neuropsychologist. From there, she'll give you recommendations for speech therapy, ABA therapy, occupational therapy, physical therapy. But I will say this: it is not a quick process. It can take years to find providers with availability. So the earlier you start is definitely going to be the better. It takes a lot of waiting, a lot of advocating, a lot of persistence. And if you're in Florida, one of the biggest resources is something called Child Find through your county. They'll do their own evaluations and they'll help connect you with services through the school system. So, because of that, we were able to get our son into pre-KD two years ahead of time, which gave him a huge head start. This was a game changer. It gave me a break for a few hours and a few days a week. And then they also helped bring in extra services to help him succeed in his classroom. And they even helped with potty training. So while we were able to get a ton of resources for our child, it still completely changed our life. So let's talk about how it changed our life. How do you think it changed your life, honey?

SPEAKER_00 5:56

Having a child with autism was very difficult. Our first child didn't have autism, and I kind of gotten accustomed to how to raise her, and then when we had our second child, he was much different. And at first it kind of seemed like maybe that was normal. It was the first boy we had, but clearly it wasn't normal, and I I personally had to adapt my life significantly to him. I had to learn how to become more patient and understanding. I couldn't use the same techniques, disciplinary techniques, or any sort of technique raising him that I could with our other child.

SPEAKER_01 6:42

Something else that's really hard and feels really isolating as a parent is not really being able to go out and hang out with other people anymore. Most families don't really understand autism or get it. And it can feel really isolating to a parent. So if you're dealing with this, you're completely not alone. We've gone through it. It's also hard to find a babysitter that could handle him when he was younger. So we've rarely gone on dates as a married couple, and that can really damper things. Having a child with autism changes your life as a parent.

SPEAKER_00 7:24

And he needs specific type of help, a specific type of attention, um, and a specific type of development. And if you don't know what that is, then he's gonna struggle and you're going to struggle. And so you you need to make sure that you're utilizing the correct resources.

SPEAKER_01 7:43

Another thing that adds to the stress is having two other children. So he's pretty much a full-time job, and then you add on two children on top of that, and then therapies and school, appointments, routines, and then constant supervision. One thing I had to do is give up working a traditional job because there was just no time. There's no way that I can get kids to school and then pick up kids from school and then take them to all their therapies and still have time to work. And even me time is limited because so much of my time and energy goes into making sure that he has what he needs. But at the same time, I'm incredibly grateful that I've been able to build my photography business in a way that gives me flexibility. So that's one reason why I started that is because I can work around my own schedule. So it's really allowed me to be there for him in the way that he needs. So where are we now? I'm proud to say that he's in a general education classroom, which is something I honestly didn't know if we'd ever get to. He's functioning, he's learning, he's growing, but that doesn't mean everything is easy now.

SPEAKER_00 8:46

There's still challenges, and as he gets older, those challenges become more difficult in different ways. He's gotten better with boundaries. He struggles in other areas, he's very outgoing, so much so that he can be a little overbearing, and so we have to work those issues, and we just have to talk to him, and as he gets older, we just have to understand like what's going on in his life and help him get the resources that he needs to be successful.

SPEAKER_01 9:21

Yeah, he definitely struggles with social skills and cognitive skills. Um, and that can be exhausting as a parent because the way he sees the world is just so different. Things don't mean the same as to him as they do for other kids or even adults. So we're constantly still trying to navigate that. And I think the hardest moments for us are when he gets overwhelmed and he can't manage his emotions. It's not just a tantrum, it's not just like being upset, it's like everything becomes too much for him all at once, and it escalates really fast. And when that happens, he lashes out. And as a parent, that's really hard to navigate because on one hand you understand that he's not doing it to be bad, he's overwhelmed, he's stressed, he doesn't know how to process what he's feeling, but on the other hand, you're still in that moment trying to keep everyone safe, trying to calm things down, trying to figure out what triggered him, and then also trying to untrigger yourself and stay calm.

SPEAKER_00 10:16

And sometimes there's really not a clear trigger. You you don't know what's causing his behavior, and sometimes you just don't know how to deal with it, even if you've been dealing with similar behavior before.

SPEAKER_01 10:31

So it just builds up and then it just comes all out at once. And those moments are exhausting, emotionally, physically, and mentally. And one of the hardest parts is that there's no quick fix. You can't just say, calm down, use your words, or try these exercises to calm down and expect it to work. It takes time, it takes patience, it takes learning him, what helps him and what doesn't help him. With other children, you can kind of talk them through it, but with autistic children, their brain just doesn't process things the same. So that's actually what led us to ABA therapy. And if you've never heard of it before, it stands for applied behavioral analysis. And I'll be honest, we didn't know much about it either. What I have learned is that it's helping kids build skills in a way that makes sense to them. It breaks things down into small, manageable steps, whether it's communication, social skills, or even everyday routines, and then it builds from there. And I know ABA can sometimes get a bad rap, but it's not one size fits all. Every child is different and every family has to decide what feels right for them. But for us, it has been so helpful in understanding how he learns and how we can better support him. So it's not about changing who he is, it's about giving him the tools to express himself to be able to connect and navigate the world in a way that feels less overwhelming for him. And I also want to say this that those hard moments don't define him. He's not defined by his struggles. There's so many moments where he's happy, he's learning, he's growing, and those are the moments that remind us that we're doing things right. Even when it's hard, he's still the sweetest child I've ever met. He gives the best hugs, and all the teachers and staff love him at school, and he has a ton of friends. So I think that the biggest thing with all of this is that it's not about perfection, it's about progress. Something that our school actually taught him is practice makes progress. And that's really the best saying for all of us. It takes the pressure off to know that trying is enough. So the one thing that I've learned about autism is that it does not define them. They are still amazing humans that don't need to be stigmatized. My son has the cutest relationship with this other little girl that just gets him. So never feel like, because your child's on the spectrum, that they won't succeed. There are tons of resources to be able to help them succeed. Speech, occupational therapy, physical therapy, ABA therapy, those are all amazing resources. So your autistic child may have struggles, but they will still be able to thrive. And there's even more resources at school. You can get a 504 plan, an IEP plan, um, they can get evaluated at school, so so they can get even more resources. All you have to do is talk to your dean of students at your school. So, what's the one thing that you've learned, hubby, about having an autistic child?

SPEAKER_00 13:22

When you have an autistic child, you're going to learn a lot about yourself that you didn't know. You're going to learn your weaknesses as a parent, you're going to learn how to adapt. If you struggle with patience, you're going to be tested. You're going to build those skills and become a more patient person. So as your child struggles, you are going to learn how to adapt and you're going to gain a lot of new skills that you didn't have before.

SPEAKER_01 13:57

So if you're a parent going through something similar, just know you're not alone in this. Even on the days that feel overwhelming, even on the days that feel isolating, there are so many other families that are walking this exact same path. And if anything from our story helps even one person feel seen or helps one child get support earlier, then this was totally worth sharing. So thank you for listening to our podcast today. I hope you've enjoyed it. If there's anyone out there that you feel can benefit from this, feel free to share, like, and subscribe. Stay tuned for our next episode about funding in public school systems. One thing that's interesting about my podcast is that when you support me, you're supporting my local schools as well. Because that's actually my passion project. I have been a PTO president for the last year, and I have learned so much about the school system and funding and how there is just not enough of it. So, next episode is gonna be really juicy, so stay tuned, and I'll see you next time on Brutiful Chaos with Kiki podcast.