EP 728 – Good News, Or Baby Blues?

— [00:00:00] Lia: Embark on a thoughtful journey with us as we discuss the complex choice of expanding a family after raising two autistic children. In this episode, we navigate the intricacies of parenting within the spectrum, exploring both the joys and the challenges that come with adding another member to the fold. From fostering sibling bonds to managing the increased demands, we weigh the pros and cons, offering a candid exploration of the unique dynamics that shaped the decision to grow a family amidst the diverse landscape of autism.

Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of autism spectrum disorder. I’m Lia.

[00:00:39] Matt: And I’m Matt.

[00:00:39] Lia: And each week we will discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources, and sharing our personal stories. This is…

[00:00:49] Both: Embracing Autism.

[00:00:53] Lia: So today marks a very special episode, and it’s not because we’re talking about our family.

[00:00:58] Matt: I was going to say, does it like what is the occasion? But then I remembered I got it.

[00:01:03] Lia: Yes. I want to mention before we get into the podcast episode, stick around to the end of the episode, because this is going to be the first time that we do our random selection program for AutismWish, which is where we will randomly select one of our applicants who were referred for a grant of up to $100 worth of sensory and therapeutic items from their Amazon wish list. So if you have not looked into that, just go to autismwish.org, click on refer a child or make a wish and you’ll get all the details there. Now back to the topic at hand.

[00:01:33] Matt: But first, do we have a cool name for the wheel? Is it Matt and Lia’s wheel of something?

[00:01:38] Lia: No, we do not. We’ll have to think on that. If anyone out there has an interesting name, we could give it a nickname.

[00:01:44] Matt: Yay. It’ll be fun.

[00:01:45] Lia: Wheel of Wishes? So today’s episode is going to be focused on where we’re at right now with our family when it comes to the whole expansion of our family. We did an episode in the past that was on the expansion of a family, but that was before we ourselves were in the midst of that. And a lot of the comments that we had received were basically parents who were considering having another child. Maybe they had one autistic child and they were worried about what is the likelihood that my next child will be autistic? Should I have another child? Or if you have multiples like me, where we have two autistic children, I’m autistic. Therefore, statistically, we know that this third baby on the way has a very high likelihood of also being autistic. And so this is something that we thought we should discuss again now that we are actually in that situation. So we want to talk a little bit about what we’ve been thinking in this journey, the pros, the cons, and kind of how we’re prepping for this.

[00:02:48] Matt: Let’s do it.

[00:02:49] Lia: I didn’t know if you wanted to say.

[00:02:52] Matt: Well, it was funny because you mentioned, like, prepping, and I was like, we are not doing too hot with the prepping right now. Yeah, basically nothing is done.

[00:03:00] Lia: Yeah, well, nothing in terms of physically prepping for the child, prepare nursery, all that stuff. And I do feel like that’s definitely been harder this time around.

[00:04:04] Matt: Yeah, I think so. I mean, as far as for the physical moving of everything and trying to get everything settled, we’re kind of stuck right now because the space we want to try and use for a nursery is basically kind of being used as a playroom backslash storage. But we have nowhere else to put the playroom and storage, unless we just put it, like, I don’t know, the middle of the floor or something. But because we have nowhere to put it, we’re trying to find spaces to put it in order to kind of set things up. So, I mean, that part’s not there. It’s a work in progress. I still have to do some painting, but that’s aside from their story.

[00:04:48] Lia: Yeah. The one helpful thing is we have been able to get my mom in to help us out. The biggest struggle I think we’ve had with having another pregnancy is one with me having the hyperemesis, that was extremely difficult. Having the other girls, the autistic kiddos, it was really difficult because we have like, what, twelve to 16 therapies a week. I can’t do math, but it’s like seven or eight each. And at the time, you were handling everything, and so it was really challenging to get them to all their therapies in school and all those things that are involved while dealing with hypermesis or morning sickness. So that’s something to consider if you’re prone to getting morning sickness or hyperemesis, that that is something that could end up doubling, quadrupling the load. But the other thing is, we didn’t really anticipate how it would impact the kids that we already have. We were kind of struggling with that at first because our kids are both verbal at this point, although one of them, I’m pretty sure, has aphasia. We’re in the process of getting that figured out. And so they do understand language, they can communicate. However, they have difficulty understanding, kind of like, what things truly mean, being able to communicate or express how they really feel and things like that, they will kind of just go with the flow without really understanding what’s actually happening. And so we have been in the process of trying to slowly use social stories, primarily through YouTube videos, to help them understand and prepare for what having a newborn is going to be like, especially due to their sensory sensitivities, because babies cry and our kids are very sound sensitive, especially the youngest one.

[00:06:36] Matt: For us, I think the oldest one is getting the idea better of what a baby is and what it’s going to kind of be like when the baby is here. For our youngest one, I feel like that hasn’t really clicked. And honestly, I don’t know if it really will until the baby is actually here and she can actually see. I don’t really think she gets the full concept. We’ve been working with more out of necessity, out of like, a worry. We had to work with the therapist because our youngest is very hyperactive, loves to climb, jump, bounce, bounce on you. So we’ve definitely had to work with our therapist as far as trying to make sure that she is not just bouncing on Lia while she’s pregnant. So that has been months in the work to try and reinforce and then constantly reinforce it with us as well. And I think she’s getting the idea not to jump on you for the most part. I don’t think there’s been any serious incidents recently, but I don’t think it’s really clicked for her as far as what a baby will be like when she’s here. We watch little YouTube videos, and we have the app where it tells you by comparison what size the baby is. And we tell them like, oh, the baby is the size of, like, a banana, for example. So I think they think that’s fun or funny that a baby is like a banana or something. But I don’t think it’s really clicked fully. And I kind of think it’ll be interesting when the baby actually gets here, if it will kind of click. It’s like a little person.

[00:08:00] Lia: Yeah. Those are kind of like my two major concerns right now for when the baby does arrive. The first one is the sound sensitivity, because our youngest, she will cry if she hears something that is too loud or too sudden, even if to us it’s not. And I am very sound sensitive, and I don’t even understand sometimes why she is so sensitive to a certain sound, because to me, it’s not that loud. And I am very sensitive, so she is even more sensitive than I am. So I am a little worried about how she will react when there is that constant, like, crying. So we are working on social stories, we are working on role playing. We’re working on the exposure of what that crying sounds like through YouTube videos and things like that just to get her situated. And some of the things that we have done to kind of address her spinning and crashing have been incorporating new gadgets in the house. We were having a serious problem with her literally running and charging towards me and just jumping on my chest, jumping on my back. She’s done that since she was a baby, literally since she could walk before she was even verbal. She’s just always been very jumpy. And of course, as my pregnancy progresses, this becomes dangerous. One of the things that we got is we have this big beanbag. It’s not beans, though. It’s like a foam bag, but it’s like a giant beanbag just filled with foam. And she’s been using that kind of as, like a crash pad. So we try to redirect her running to that, and she’s been doing a pretty good job over the last couple of months of practice with redirecting it to the point where now she kind of does it on her own. And we haven’t had to redirect her personally, verbally, or with physical touch anymore. She kind of does it on her own. And the other thing that has been working really great for her is for the holidays. We got her this spinny chair. I forget what it’s called, but it’s this metal chair, and it has kind of like a wobble seat attached to it, and you sit in it and it kind of scoops you up a little bit. And then they can just spin and spin and spin, and they go really fast on this. I honestly don’t understand how they’re not throwing up when they’re on it. But she has loved it, and I’ve noticed that she’s been able to get a lot of her sensory input through that. And since we’ve had those two things, she has not been crashing into me anymore. So that’s just another thing to consider. If you have a high sensory seeking child and you’re looking to expand your family, you have to consider is your child going to be potentially a harm to you or your child without meaning to be?

[00:10:43] Matt: Yeah, I mean, thankfully, I think with the last couple of months, it’s actually calmed down quite a bit. So, I mean, that’s definitely a bonus. Now, as far as your thoughts about new baby also being autistic as well, what are your thoughts there?

[00:10:54] Lia: Yeah, so that is, I think the main comment that people ask about is that concern of, well, what happens if this new baby is autistic? We have given that a lot of thought, and at my age, because I’m, what am I, 34? 35? I don’t even know.

[00:11:10] Matt: Am I going to be 34 going on 35?

[00:11:14] Lia: Yeah. So, yeah, I don’t even know my own age. At 35, I’m considered, embarrassingly enough, geriatric when it comes to maternal age for, like, pregnancies and such, at least according to medical science. And so once you hit that mark, statistically, there’s a higher likelihood that your child will have disabilities or a higher chance of things like autism and things like that. And since we already have other autistic kids, and I myself am autistic, there’s a very high likelihood that this child is also going to be autistic. And not just that they will be autistic, but there is also an increased likelihood or increased risk that this child will be more autistic, quote unquote, than my others. That is something that we definitely have to consider for us. We didn’t actually choose to get pregnant. It was kind of like a surprise.

[00:12:10] Matt: Some of us did. Part of us did.

[00:12:13] Lia: And so we didn’t really have time or the opportunity to consider that or factor that in. But for any of you out there listening who have those concerns, that is something to actually think about. Like, according to your age and your risk and genetic predisposition, what runs in your family, all that stuff, it will influence that likelihood. So for us, there is a higher likelihood. So we’ve been kind of just taking it one step at a time and just prepping more emotionally than physically. And by emotionally, I don’t really mean, like, sad or anything like that, because at this point, we’ve had two autistic kids. I got my diagnosis. We’ve really been in the throes of this for quite some time. So I feel like we are pretty prepared, but I do feel like at our age, we’re older now, and now that we’re older, we’re more tired, we’re busy, we’ve got all these therapies with the other kids. And so one of my concerns going in is if our child is autistic, then we have to somehow find a way to manage adding in potentially eight more therapies a week. And so that’s going to be something that we’re going to have to figure out how to balance if and when the time comes.

[00:13:33] Matt: Yeah, I was going to say for me, as far as for the therapy runs, because thankfully, the office manager who works in the therapy clinic, she does an awesome job as far as scheduling. So, thankfully, since we’ve been in the facility a decent amount of time, she’s able to schedule them in blocks. So they kind of go at close or similar times. So, I mean, we already gave her a heads up like, hey, this one might be on the radar in the next couple of years. I basically just kind of think of it as kind of like our. I don’t want to call it like our Oprah moment. Like, you get an occupational therapy and you get an occupational therapy, and just, like, everyone’s getting therapies, and just, like, you all just put them in the van and then you just go to the therapy center and everyone goes to their therapy. So if we’re able to line it up like that, where they’re blocked together with therapies, I don’t really see much of a disruption to our ordinary structure for the most part. Granted, we’re going to have to shift from man defense to zone defense because we’re going to be outnumbered, so we won’t be able to go one on one with the kids. We’re going to have to kind of corner them so they can’t run away. So you’ll stand by the stairs and I’ll stand by the front door so they can’t get hurt, and then we’ll go from there.

[00:14:46] Lia: Yeah. So we’ve really been taking things kind of lightly. We are the type of people that just joke around and try to make light of the situation, because in our experience, really stressing out about things doesn’t really alleviate anything. I used to be the type of person when I was younger that I would be extremely anxious about things. I would worry all the time. I would just totally break down. And it took me a lot of time and years and years of really finding myself to figure out how to not get overwhelmed in the midst of chaos, essentially. And so now we’re kind of at a point where that doesn’t really happen for us as much. We do, of course, get stressed. We do, of course, get overwhelmed, but we like to try to take it with a positive tone, and we try our best to just be like, you know what? Whatever is out of our control is out of control, and we can only do what we can do that’s in our control. And nine times out of ten, what’s in our control is how we react to things. That’s the thing that we can control, not so much that 1% of the time where we can actually control the outcome. So since we can’t do anything about our genetics, we can’t do anything about the statistical likelihood of having an autistic child or perhaps a more severe autistic child, we’re simply choosing not to stress about it and instead just get in a place where we feel like we’re prepared for it. We have already put in place certain things. For example, we know there are several year waitlists for autism assessments. And since this baby is going to be already high risk, I’ve already enrolled in a program at a local university that will do, like, an early assessment for free, as long as we’re participating in this study, essentially. So there’s not going to be a waitlist for the baby to get evaluated. I already have them on a list, and that’s ready to go. So that’s one of the things that we’re kind of doing to ease our minds in that process.

[00:16:48] Matt: Yeah, you raise a good point as far as being as upbeat as we can about it. I mean, mostly because if we get beat up and upset about everything that we think is going wrong or everything that happens, our kids definitely feel that and they feel like they’ve done something wrong or something, and then that puts them in a negative mood, and then everything just kind of spirals out of control. So, yeah, I mean, we try to be as upbeat as we can. That’s not to say sometimes, most days we’re exhausted, so we’re just kind of like shuffling our feet because we haven’t had enough coffee, because there’s not enough coffee to possibly consume, to be upbeat and alert all the time. But overall, I think that our kids reactions and just general feelings about life are kind of because of how they feel we’re engaging with them or how we’re engaging with the world around. So, I mean, I definitely think that it has a beneficial factor for them just seeing us not get stressed out about everything small that is more or less kind of insignificant in kind of the grand scheme of things.

[00:17:48] Lia: We already know that our kids are sensitive to certain things, especially big changes, and so having another kid is a big change. There’s a lot of autistic kiddos who have that rigidity with having a new person in the home or in their life. They might feel like, you don’t belong here, get out. I don’t want you here. And so we’ve been working hard to try to give them an early bond. So we try to have them talk to my belly, or we try to have them feel when the baby’s kicking and things like that, to try to give them a connection of like, hey, this is a person, and this person’s going to be here soon, but we also don’t push them. And when the baby does arrive, we’re not going to force any bonding. We’re going to kind of let them lead the way and let us understand from their cues when they’re ready to interact and how they’re ready to interact.

[00:18:42] Matt: Yeah, I think that’s the right thing to do. We tried with our youngest to kind of get her to interact a little bit with the belly. It was kind of hit or miss. Sometimes she wanted to. Most times she was like, I don’t want to, I want to go do something else, and I was like, okay, whatever, and then we go do something else. So, I mean, at least we tried. I think that’s the biggest thing. We made the effort. I think as far as when the baby comes, we’ll have them come, see the baby, if they want to, if they don’t, then they don’t. I mean, we’ll try to include them as much as we can. But if they’re not interested, then they’re not interested. I mean, they’re kids. They’re not adults. They can’t be forced into anything they don’t want to do. So we’ll definitely take it easy on that one. So, I mean, I think we have a pretty good plan overall as far as for bringing the new baby into the fold.

[00:19:31] Lia: Yeah, for sure. We’ve put a lot of thought into it. We have a lot of plans in place. So we feel like we’re prepared for whatever comes our way. But with that said, it is time for us to do the very first autism wish random selection. So, drumroll, Matt.

[00:19:49] Matt: Oh, we’re doing a drumroll? I was just going to do like a weird sound effect.

[00:19:54] Lia: Oh, no, do a drumroll. All right. So we have our wonderful wheel of wishes. I don’t know if you can hear that. And let me just show you here that it is in fact spinning. So this is very much live. I can’t rig this. All right. So we have one through thirty four applications that were referred to us. And we’re going to go ahead and select the random number now. So here we go.

[00:20:28] Matt: All right. Here we go. Spin that wheel.

[00:20:32] Lia: Number 16, which is you know what? I’m not even going to lie. I was like, number 16, and I totally did not see who number 16 was, but let me take a look. Okay, number 16 is Alexander V. So, congratulations, Alexander V. You are the very first person who will receive up to a $100 grant of sensory and therapeutic items from your Amazon wish list. So we will be in contact with you to let you know about your winnings. And if you would like to be part of our AutismWish program, you can just go to autismwish.org. Click on make a wish, or refer a child, and we’ll have all the information there. We’re still trying to get through all the wishes and get them funded. We’re kind of just working our way down the list. So if you’ve applied, don’t worry, we’re still working on it. And if you haven’t applied yet, definitely go ahead and do so. So that wraps up our very first Autism Wish random selection, and I’m really excited about that.

[00:21:40] Matt: I’m excited about it, too. I’m excited to see what kind of wish list items people have. I’m sure there are some cool stuff in there, and I’m excited to get those sent out.

[00:21:49] Lia: Yeah. All right. So thank you so much for joining us. I’m really excited to have been able to do this. I’m really excited to be able to help out someone. And we will see you next week.

[00:21:59] Matt: All right. Bye everybody.

[00:22:01] Lia: Bye.