Balancing It All: Nursing, Motherhood & Living with Sickle Cell: An Interview with Sierra Stevens

In this heartfelt and powerful episode of This Ability Podcast, Sierra Stevens shares her journey as a nurse, a mother of two children with diagnoses, and a woman living with sickle cell disease. Sierra opens up about raising her autistic, non-speaking son Micah and her daughter with ADD, navigating early diagnoses, embracing observation as a parenting tool, and learning to celebrate her children for exactly who they are. She speaks candidly about advocacy in schools, the importance of organizations like Families Helping Families, and how connecting with other parents transformed her sense of isolation into empowerment.

Sierra also discusses her own health journey with sickle cell disease, including a recent battle with sickle cell retinopathy and retinal detachment surgeries. With honesty and strength, she reflects on balancing motherhood, marriage, nursing, and board leadership while prioritizing her health and her family’s safety. From elopement prevention and practical safety tools to the healing power of exercise, music, faith, and community, this episode is a reminder that resilience is built one intentional step at a time—and that no parent should walk this path alone.

Transcript

Mary Baudoin (00:00):

All right everybody, thank you for joining us today for This Ability podcast. I'm your host and producer, Mary Bodewin, and today our guest is Sierra Stevens. Thank you so much for being here today. Really appreciate it.

Sierra Stevens (00:11):

Thank you for having me.

Mary Baudoin (00:11):

Yeah, definitely. So tell us a little bit about yourself, where you're from, your background, things like that.

Sierra Stevens (00:17):

So I am from Eunice, Louisiana and I'm a mom of two children. One of them is Micah, he's autistic and he's non-speaking. Our daughter is Myla and she's been diagnosed with ADD. I'm a nurse. Husband is also a nurse. We enjoy spending time together as family. Going fishing, doing things with the kids, playing in the rain is one of our favorites.

Mary Baudoin (00:42):

That's awesome. You said that your daughter was diagnosed with ADD, right. And you're a parent of children with, you have a child that has autism, your son Micah, right. And then has ADD, right. So talk to us about that. When did you guys know that he was autistic?

Sierra Stevens (01:01):

So Micah was diagnosed since roughly around age three. We kind of had little signs here and there from a speech pathologist that worked with us during Early Steps program. So he's been diagnosed since then. Myla has been diagnosed with ADD, I want to say, within the last two to three years. We kind of had suspicions of some of the things that she would do because I also have ADD. And once we kind of noticed her inability to focus, forgetting things, I was like, gosh, she's just like me. Took her to the doctor and then got the diagnosis. And really truly it's helped us tremendously getting the diagnosis because sometimes getting that confirmation of knowing, hey, this is what's going on. You're able to put two and two together, then you're able to help your child.

Mary Baudoin (01:50):

Now you mentioned that you're a nurse, your husband's a nurse, right? So you guys were in the medical field and you have now two children that each have a diagnosis. Was that a surprise to you guys? How well did you take the news? Did you think, "Okay, I've studied about autism, I've seen patients with autism."

Sierra Stevens (02:08):

So for my husband, especially with Micah, he kind of knew, if I'm being completely honest. I can't say I was in denial. I was kind of hoping that maybe it wasn't that, not that I didn't want my child to have that. It was such a difficult thing to accept being that I was also a new mom. It isn't something I'm new to fairly as a nurse, I've worked with a lot of different children with developmental disabilities and really, truly, I love working with children, even adults. It wasn't a challenge working with him or helping him. It was more so a challenge accepting him and trusting that I can be the best mom for him, even though he couldn't speak per se. And for Myla, it was kind of like being that we were already faced with accepting Micah's diagnosis, it just kind of flowed because it's like, okay, I know this happened, me and dad working together, we are already going through it with Micah. To us it can't say it was an easier transition, but it was fairly easier for us to just kind of, "Well, we're okay, everything's fine."

Mary Baudoin (03:19):

You mentioned about the challenging parts and I was going to ask you about that, but what's been the most rewarding?

Sierra Stevens (03:25):

To be honest, there's so many things that are rewarding. I'll point out one of the number one things, and this is something my dad shared with me. My dad passed away about two, three years ago to cancer. And his specific specialty was working with autistic children his whole life that he did. He told me, he said, "Sierra, children like your son, not necessarily all of them are the same, we know that." However, he said, "You can learn a lot by just sitting and observing, just watching him." And that stuck with me. And the more and more I did that I learned more and more about Micah, I learned more about even our daughter and then it kind of made me think, I was like, we're kind of alike here. It's rewarding because you get to see them do certain things and wonder why they're doing it or what they're looking at.

(04:13):

So for example, Micah has had, I don't want to call it a fixation, but that's the term that they use per se. Whenever a child likes one thing and that's all they like. So Micah, it's been ceiling fans, so he's been building ceiling fans since he was about three with magnetic tiles and he's progressed to using STEM building sticks. It got to a point to where I'm like, "Okay, is he going to like something else?" No, he didn't. But it progressed to where Micah looks at blueprints of ceiling fans and he's drawing 3D images of ceiling fans. It's amazing. And I mean it is mind-blowing, but even more so whenever you have a child that doesn't speak, most people think about it as well, he can't speak, he can't tell you this, he can't tell you that. But the thing is, it's your perspective, how you look at things will either positively impact you or negatively. And for me, I had to not set expectations on him because by doing that, it's almost like when something were to happen or say for example, he didn't say this by this age or that age, I would get disappointed.

(05:33):

But I looked at it from a way of thinking, "You know what, whenever he does, great. If he doesn't, still great." I'm going to encourage him. I'm going to support him, see what he likes, and just keep feeding him and encouraging the things that he can do, if that makes sense. Yeah, it does.

Mary Baudoin (05:51):

So how does he communicate with you?

Sierra Stevens (05:54):

So now he communicates pointing at things. He'll say certain words even though it doesn't sound like it should. So for example, his way to say cereal is co, but we know that's what he wants because he always says co, co and he points so he's communicated by pointing, saying certain things, certain gestures. For example, whenever he's in pain, that was a big thing for us. Now he learns to say hurt because I've showed him. And you got to be consistent and say hurt. "Does it hurt here?" And again, having a nursing background, I cannot, I thank God for that every day because we know what to look for. We know what to look for even though he can't speak to us. We as nurses, we were taught to assess and a lot of those visible signs that we observed from just people in general were able to kind of help him.

Mary Baudoin (07:03):

I think that's great. When you touched upon observation, and I think with the world we live in today, there's a lot of distractions, phones. Sometimes I see people that moms especially, we're busybodies, but sometimes you just need to take that break from technology, the TV, the radio, whatever it is, and just observe someone. And I remember that I did that recently with an interview that I was talking to someone and they were talking about how their parents had autism, their siblings have autism and a lot of their uncles and cousins. And I asked him, I said, well, do you have autism? He said, well, I'm not sure I have it been diagnosed. But as I watched him, I figured there were certain little ticks that he was doing that just in the 45 minutes I was talking to him, I'm like, yeah, I think he's got something. He's on the spectrum some kind of way. And of course I'm not a clinician. I don't know, I don't diagnose things, but just my observation of that.

(08:04):

And sometimes it does help to just kind of be self-aware or to look at things, even if you look back at a video of yourself or family members and you can kind of see the signs for sure. I wanted to ask you, because we're here in Acadiana and there's a good bit of resources here. Have you found any particular resource to be of a special help to you and your family?

Sierra Stevens (08:33):

I'm going to have to say number one, and this is not to include the other organizations, but Families Helping Families has been, oh my goodness, just a great deal of support in specific, without going into too much detail, but we were having a difficulty with both of the children at school. We couldn't gain a hardship to transfer. So whenever I reached out to Families Helping Families and explained the story and the situation, Ms. Nicole and Ms. Brenda, I mean even all of those that are involved there was very helpful. But it was a great help because as a parent of a child with disabilities or you're aware of some of the rights, but there's a lot of things that you're not aware of that people are not going to take the time to inform you of. But they did that and it touched my heart and I tell them every day, I love y'all and I thank y'all so much because you don't know just how much that helped our entire family.

Mary Baudoin (09:44):

Definitely. No, it's good to give a shout-out to those organizations. And I've heard a lot of great things about Families Helping Families of Acadiana, and I've experienced many of their events and the advocacy, the Disability Day, we did that Disability Awareness Day at the Capitol recently. That was a lot of fun.

Sierra Stevens (10:05):

Right. And not to also LACAN. Christy, oh my. From the first time I met Christy, she's just amazing.

Mary Baudoin (10:13):

She is.

Sierra Stevens (10:14):

Learning about her and her son. It's inspiring and it inspired me because she actually encouraged me to share our testimony with the kids at the state Capitol. And had I not known about that opportunity it could have, I'll say this, what happened to our children was such a impactful thing, even though at the time it was rough. But sharing that was so helpful to so many people and the feedback was a confirmation of that, me doing the right thing and how their story really touched them of the fact that I stood by both of the kids' side and kind of fought for them.

Mary Baudoin (11:05):

No, I think that's incredible. And you hit the nail on the head because representatives, our state reps, legislators, they want to see and hear stories from a diverse group of people. They don't want to just hear the same person over and over again. And it helps for new people to come up and share their story because that's how you can get things enacted upon. You can do things that affect disability rights and what have you. And we want to make sure that disability rights stay on the forefront and that they're always putting our children and people like them first. So let's talk about your role as a nurse. You're a mental health nurse, is that correct?

Sierra Stevens (11:52):

I really don't identify as a mental health nurse. I can say I just identify as just a nurse. And the reason being is because as we mentioned, dad is a nurse also. So as far as my ability to go to work like him, it's not as much. However, I'm still grateful because I do work with a nursing agency that allows me to work in different fields. But I absolutely enjoy just really helping people. I love helping people no matter if it's mental health. I've worked with veterans, I've worked with even younger kids. 

Sierra Stevens (12:46):

Right.

Mary Baudoin (12:46):

Okay, yeah.

Sierra Stevens (12:51):

Right. Even though every child is different, you still may be able to learn something that you can implement with your child. And most recently I had a patient, and this was my first case of working with hospice. It's amazing because, and I have to go back to speaking about losing my dad to cancer, how I believe in my heart that God literally prepared me to manage and help my patient that I recently had. Because after my dad passed, I was already comfortable with death and dying and transitioning and so on and so forth. But whenever I got to the point to where I actually have a patient and I'm caring for that patient, it was so touching. It was mind-blowing because it's not often you get to pray with a patient. It's not often you get to hear a patient that is content and knowing that they've fulfilled their life, if that makes sense. Yes. And I've learned so much from my patients. She was a professor, she was a college professor. She was such an amazing lady. And when she transitioned, her family thanked me and recognized and saw that I really and truly cared, I guess, per se.

Mary Baudoin (14:28):

Well, and listen, as someone who's not a nurse or worked in the medical field at all, I appreciate people like you because-

Sierra Stevens (14:36):

Thank you.

Mary Baudoin (14:37):

... that is comforting to know that someone who cares is with someone in their final moments of life. And it's comforting to me. I would want that my, they're both deceased, but it's nice to have that comfort there in their dying moments. So thank you for doing that and thank all the nurses are awesome.

Sierra Stevens (15:02):

Thank you.

Mary Baudoin (15:04):

I wanted to ask you, because you are in the healthcare field, do you see any gaps between healthcare, how, I guess either gaps or things that could be improved for people with disabilities? Is there a disconnect between healthcare and the policies that say Medicare has or Medicaid has with the waiver services that are offered and now with children with disabilities, do you see any kind of struggle, any kind of problems?

Sierra Stevens (15:42):

So let me first by saying I can only speak on what I'm aware of. A lot of the different services, I'm still learning about them. But what I can say that I find there's a lacking in is certain things aren't able, certain children and adults with disabilities aren't able to get certain needs according to income, regardless of their situation. I can say specifically for my case, Mike was getting certain assistance with something. And even though we live together as a family, it ultimately impacted us because I mean, most people don't know, but it's literally just me and my husband that care for our children. My mom and dad has been deceased and stuff. So we just kind of have each other, but not necessarily just always income. I think there's a lacking, and hopefully this answers your question, and this is just from that, I find from working with patients in the healthcare field, whether it's in the home, the hospital setting or whatever, I find that there's a lacking in teaching.

(17:04):

And I don't want to pinpoint anyone because like I said, I'm not in management. I don't know the struggles or the finances, what it takes to keep certain employees staffed. But what I do know is a lot of times, a lot of patients I run across, they are taking medications. They don't know what it's for. They don't know even how to manage their condition-

Mary Baudoin (17:29):

That's not good.

Sierra Stevens (17:31):

... outside of just medication because we're not against medication at all. But the thing is, it's very important to know what they're taking it for, how it can be managed. Or in the event of say they start taking care of themselves and they notice a difference in their body, well, maybe they shouldn't take this medication, for example, if they're exercising and taking all the steps to take care of themselves being healthy, and say they go to take a blood pressure medication one morning and they feel faint. Well, a lot of times they require you to take blood pressure, take your blood pressure prior to taking a medication because if it's too low, they'll pass-out effects. There's a lot of different side effects.

Sierra Stevens (20:11):

And look, from speaking from another exercise, fitness and health perspective, just to share my experiences, I had hypertension after both pregnancies, and I did inform my doctor and said, "Hey, my blood pressure is running higher."

(20:30):

I wasn't hypertensive. Like, it wasn't highly elevated, so it didn't alert them, but I was trying to explain to him, this is not my normal because blood pressure and even blood sugar is different from person to person. And anyways, to sum that up, he kind of just brushed it off. No disrespect to him, but I just took the initiative and told my doctor, "Hey, this is what's going on. I don't usually have issues with my blood pressure." And what we did was called a log and she said, okay, we're going to put you on this blood pressure medication for a certain time. I want you to take your blood pressure every day so we can monitor it. And eventually I got off of blood pressure medication because it was a temporary situation.

(21:20):

That's not the case for everybody. But also to add, as far as a health and fitness side, whenever you're speaking of music therapy, exercise has been greatly effective towards mental health. There's different ways, calming strategies. Some people do yoga, and it's so therapeutic for the mind as far as relaxing. Again, that's something I learned from Micah because one of the things that they were teaching him in ABA was to, they were correcting his form of soothing, which was rocking on a Pilates ball. That's what we implemented at home. They wanted to put him in a rocking chair, but we found that he didn't want to be on the rocking chair. So the Pilates ball was fine.

(22:19):

But learning that about my child as well as going into music therapy, Micah may not speak, but randomly he's broke out in song singing songs, which oh my goodness-

Mary Baudoin (22:34):

How incredible.

Sierra Stevens (22:36):

... I can't tell you how many times I've cried. My husband's like, don't you dare, don't you dare. But he's just saying and just, I'm looking. And most of the time I try to record it to catch it so that if my husband's not around, I can share it with him. So sometimes we catch it, sometimes we don't. But to go into dopamine, which is something that is a part of exercise that people don't realize with the music therapy, with exercise. And for me, something a lot of people aren't aware of is skating.

Sierra Stevens (23:17):

And they did a documentary on this. I've been skating for five years, and it's something me and my daughter started around the time my dad was losing cancer. But after watching the documentary, a lot of skaters were sharing their side of how it helped them mentally whenever they're on the verge of suicide and depression. And once I began skating, I would always listen to motivational music per se, while my dad was transitioning. But outside of having a prayer life, which is more important, I found it to be very calming, relaxing for me because that same rush of dopamine that you get from eating a candy or something sugar, and you just feel that high, you can get the same thing from skating, doing exercise. For me, I was a runner before, and it's called a runner's high per se, but basically you're replacing say if it's a medication or if it's a food that you shouldn't be eating to incorporate that with something healthier to positively feed that dopamine per se, that rush that you're looking for. But music, yoga, stretching, skating, and most recently, my daughter advanced in her skating to where she did a fast spin yesterday. That happened.

Mary Baudoin (24:50):

Oh, wow. Hey, that's awesome. I think just listening to you, it reminded me of what I call my happy place. And it sounds like skating is yours and for your daughter as well, but I like to ride my bicycle outside. This is not like a stationary bike. I like to ride outside and I think each day or each week, I kind of have a little goal, "Okay, I'm going to go down this road next week or this road," and boy, "One day I'm going to challenge that hill." And then when I do it's like I feel like that sense of accomplishment. Yeah. And it's a good healthy way and a little bit of peace time for myself too.

Sierra Stevens (25:32):

Definitely. Definitely.

Mary Baudoin (25:33):

Yes. Let's talk about some extracurricular things. You've recently joined the board of directors for the St. Landry Abilities. So tell us all what St. Landry Abilities is.

Sierra Stevens (25:47):

This is my first year as a board member, but St. Landry Abilities is basically an organization where most of us who are a part of the board have a child that has a disability. And we come together and we do different things to reach out with moms and dads that are in the community to bring them together and give them opportunities to connect with others in the community, if that makes sense. Because one of the things that it has greatly helped me with prior to becoming a board member was I felt alone and lost a lot of times and alone feeling like I'm the only one going through this. And granted, children with autism different and they vary. However, it's always great to be able to talk to someone who may be going through a similar experience because they understand. And I think that's what led to me wanting to be a part as a board member, because I felt like I was like, these ladies in this organization is great. I'm already a part of it and learning and connecting with these people, but I want to do more. I want to do more and help other moms who may be dealing with this. So that's what encouraged me to join.

Mary Baudoin (27:19):

Do you guys physically meet each other? Is it online? How do y'all get together?

Sierra Stevens (27:23):

We have Zoom meetings, but we also do, we started this, I believe that this was started just this year where we do in-person meetings now.

Mary Baudoin (27:32):

That's great. And the reason I mentioned that and ask you about it is because we are here in Louisiana, but the podcast is actually international. I have people that listen from other countries and of course throughout the United States, and there are some isolated areas, but there are people with disabilities everywhere. I mean, I read statistics that there's over 65 million adults, well, children and adults in the United States alone that have a disability, some form of a disability. And it's good to connect with other people because I feel like the internet can be a great thing, but sometimes you Google things and then you go down this rabbit hole of information and you don't know, unless it's really a credible source, you don't really know what's accurate and you don't want to get caught up in a whole lot of jargon either, or some international organization that might not help you locally. I feel like on a local level, it's good to connect with other people. Like you said, even if a mom that you talk to their child might not have the same diagnosis, it's still being different. It's still some type of form that is not your neurotypical child and the status quo doesn't apply to them. And it's good to connect with other people. For sure.

Sierra Stevens (28:55):

Definitely.

Mary Baudoin (28:57):

Let's talk about sickle cell awareness or sickle cell in general, because I know you are an advocate and you're also a patient of sickle cell, right? So we're going to talk about that now. The airing of this podcast is going to be in 2026, but September is sickle cell awareness month, and this is going to be forever. So we can talk about sickle cell awareness. Now you've talked about your own experience with sickle cell, so let's talk about your journey a little bit.

Sierra Stevens (29:26):

So I was diagnosed since as long as I can remember, since birth and my genotype, I hope I'm saying that right. It's SC, there are different forms, SS, SC, beta thalassemia, so on and so forth. And SC, a lot of people aren't familiar or they try to say, "Oh, so you have a trait." They're not knowledgeable. I've experienced a lot of doctors that has saw me as a patient and they blew me off as, "Well, you have a trait." No, it's not a trait. But basically I have learned in particular with my condition that although my symptoms is not as severe and my crisis is not as often as someone with SS, it has greatly impacted my life from how I eat, how I exercise, where I exercise, a lot of those different things that people don't realize. It really affects your whole life.

(30:38):

And for me, whenever I first went into nursing school, that was one of my objectives, to learn more about my condition, not only to help myself, but to help others. And I guess about 20 years ago, I was in the gym and I did a little bit of research and I was able to find out that whenever we go into a sickle cell crisis is what it's called, quote-unquote, we lack nitric oxide. And what the nitric oxide does is it kind of helps with the circulation and oxygenation in our bloods. And the crazy thing about that is I remember taking a supplement nitric oxide supplement, and this is while I was bodybuilding at the time, over 20 years ago, and I had been doing it at least five, six years, bodybuilding, and I had never had a crisis. And I remember going to the doctor and the doctor was like, "Are you sure you have it?" Because they even did lab work that'll detect it. And a lot of people say, "Oh, well, you're healed." Not necessarily, but moving forward, learning my condition, learning how to manage it through diet, exercise, it has changed. Meaning I've always looked to learn more about my condition because the more I learn, the more I know how to help myself and help others.

(32:10):

And my most recent, I don't want to say discovery, but my most recent experience this year led to my new diagnosis of sickle cell retinopathy, or they call it proliferative sickle cell retinopathy retinopathy. And working with the hematologist, which is something I would definitely say is very, very important if you do have sickle cell, because I did work and my hematologist said, "Your iron levels are regular, but your iron saturation is kind of low." Okay, well, whenever we dug into that, whenever I looked at myself, I told my husband, I said, do you know that you having a low iron saturation can decrease the, let me see, I want to explain this correctly. It decreases the oxygenation in the eyes and it'll make, they call it little formations in your eye, which ultimately blocks the flow and blood vessels and it causes it to pull on your retina. And that is what led to my retina detaching.

Mary Baudoin (33:28):

Okay, I was going to ask you about that. That was the point on my agenda to ask you about. So you had to have a surgery for that retinal detachment surgery.

Sierra Stevens (33:38):

I had two. The first one was a vitrectomy, which is where they extract the fluid that's in your eye, and then they go in and correct and redetach the retina. And I was in the process of healing from that one, which it was very extensive, but whenever my gas bubble, which is something that they extract in to keep the retina in place, started shrinking. It ended up shrinking faster than I healed per se, and I ended up having another retinal detachment.

Mary Baudoin (34:16):

Okay. Is this a fairly common procedure? Because I've not heard about it.

Sierra Stevens (34:21):

It's normal from what the doctor tells me. For someone with SC, it's more common. It's more common for those with SC to have visual problems. That's usually common. I don't know why.

Mary Baudoin (34:36):

Now. I was going to say, did you have to see a specialist here in Lafayette? Or-

Sierra Stevens (34:40):

Yes.

Mary Baudoin (34:40):

... did you have to travel? Okay.

Sierra Stevens (34:41):

So I was referred to two different retinal specialists. The specialist that ultimately performed my surgery was in Baton Rouge. So it was a lot of trips to Baton Rouge for surgery, doctor's visits, so on and so forth. But the second detachment he told me was due to my condition, but it was strenuous. It was very scary because going blind, it got to a point to where my second, my first procedure, excuse me, whenever I started seeing black dots, and usually that's a sign of an increase in your floaters that could lead to it detaching again. And the scariest part of that was not getting to the doctor on time. And my vision went out to where I couldn't see in that eye, which was-

Mary Baudoin (35:35):

Well, I'm glad you're talking about it because there might be someone listening if they've heard of someone having this or they might be experiencing it themselves. I mean, I have a few of those little floaties, but nothing that's ever turned black. So that would be a red flag for sure.

Sierra Stevens (35:51):

But I was grateful to get in after that. And at the time that I did, because the doctor told me that I wasn't supposed to have central vision, which is your driving vision right in front of you. And that was a scary thing for me because I wanted to be able to see my daughter and so on until forth.

Mary Baudoin (36:13):

Right. I wanted to ask you this because I'm sure I have some listeners who just can relate to your situation. They're a mom, a nurse, or in the working profession, you're a board member and you also are an advocate for people with disabilities. So how do you balance everything?

Sierra Stevens (36:38):

If I'm being honest, it's a struggle every day. It's something that I constantly pray about and have to manage. I'm always putting my kids first. I'm very selfless person. I always tend to do more for others than myself sometimes. But when it comes down to my health, like I said, recent things, that's whenever I begin to say, "Okay, I need to be proactive," because mommy's no good. I can't take care of the kids if I'm not in good health.

Mary Baudoin (37:09):

No, that makes sense. Definitely that makes sense.

Sierra Stevens (37:13):

But I mean, to balance it, me and dad kind of work as a team with his work schedule. And then a lot of times it's learning our children's dos and don'ts, what things trigger them. I hate to use that word, but meaning there's certain things that Michael will do to aggravate Myla and certain things she will do to aggravate them, I mean, aggravate him. So once we learn that and then learn how to balance time management, spending time together, it's a constant back and forth, something that we have to work at. And I think that varies from family to family, if I'm being honest. Ours is tough because we're limited on outside help. Like I said, it's just me and my husband, but we do it and we pray about it. We're very consistent with being there for our children, spending time together and doing things that they like, and we're not afraid of staying home for us. I think the biggest thing is we prioritize our sleep so much.

Mary Baudoin (38:29):

Oh boy. I love that.

Sierra Stevens (38:31):

I can sleep all day, but a lot of people, I don't think they understand just how important sleep is and getting rest, especially whenever you're caring with someone that requires more needs, it can be very draining mentally, not just physically.

Mary Baudoin (38:49):

Yeah. You've definitely touched a chord in me and probably a lot of our listeners as well, because my daughter, Lexi, she's 28 years old, but she doesn't necessarily sleep every night. Sometimes she just wakes up and wants to party it feels like. She's just ready. And Lexi does not have a trach, but she does have to be suctioned whenever she has a certain amount of sputum. And then she'll start coughing. And of course we have a monitor, so we'll listen. So my husband and I will get up and do whatever and to go suction her. And then sometimes I can fall back asleep and sometimes I don't. And sometimes that might be one night a week, that could be three or four nights a week. And so on the weekends on Saturday, it's like, okay, I'm going to prioritize sleeping because I have a nurse. I have an LPN that comes to the house every day. Thankfully I don't have 24 hour care for Lexi, but sometimes on Saturdays I do. And it's like, okay, I'm going to take advantage of this and I'm going to sleep when I can. But it would be great to sleep eight hours a night. And that's a goal for sure. So I'm glad you touched on that.

(39:59):

I know we're getting to the end of our interview, so I wanted to ask you, are there any kind of final thoughts or anything that you want to leave our audience with today?

Sierra Stevens (40:13):

There's so much.

Mary Baudoin (40:13):

There is a lot.

Sierra Stevens (40:14):

So I'll say this, and the only reason I think I believe I should share this because of all the different things that's going on in the world. So for me, seeing a mom, I mean, seeing children that have been diagnosed with autism are constantly being, I don't want to say neglected, but a lot of them are dying due to we don't know the cause. I mean, the news puts it out there. That's not my job to say what this mom was doing wrong. However, what I would say is that if you do have a child that has special needs, please reach out to someone for help. It is a very overwhelming thing. It's a very overwhelming, I don't want to call it a job, but it is very, very hard. And a lot of times people don't seek help. That's something I can tell you that I also need to work on. But in the event where it comes down to harming a child or elopement in particular.

Mary Baudoin (41:32):

I was about to say, elopement is a big thing, especially water, bodies of water nearby, whether it's a swimming pool or a lake. And of course we live in Louisiana. There's bayous and ravines here and there and everywhere. So that couldn't be a troublesome thing to have. And like you said, I think reaching out to other people is so important because you can learn other things. You might think, "Well, I've done everything I could." Well, maybe within your realm you've thought you have, but maybe learning, you can learn something new from somebody else that might help you. It could be life-saving.

Sierra Stevens (42:12):

Right. And as far as something else I'm going to say, because I noticed a lot of parents who do not have autistic children, they're constantly bashing other moms who are and saying, well, why didn't you watch your child? So I can speak from experience. Our son Micah, has been an elopement risk since he's been little. He would run away. He would run out in the street no matter where we are. But even though that was a very challenging thing, it didn't stop me from saying, I'm going to do whatever it takes. I'm going to look up whatever tools, resources, it is. I need to keep my child safe because we can't just say, oh, well this is this, or, well, I'm just going to deal with it or let it go. Even though it's overwhelming, we have to keep fighting. It's hard. But for us, we just kind of learned what works for him. Learn what works for your child and do the best that you can, but never give up on them. Reach out for others who may need help. And another important thing, in case there are other moms who aren't aware of this.

(43:26):

But there are a lot of alarms, safety features you can implement into your home for children like this. One thing in particular for us was when we go out in public, we have an arm band that attaches to us and attaches to him.

Mary Baudoin (43:45):

Nice.

Sierra Stevens (43:46):

And I mean, it's not expensive, but it has greatly helped decrease those chances and also allowed us to feel comfortable and sleep at night knowing we have alarms and cameras everywhere, because if something happens, we'll know.

Mary Baudoin (44:09):

That's great advice, Sierra, again, I want to thank you for sharing your story, your family's story. We've learned a lot today. So thank you for being here. All right, everyone that's going to wrap up this edition of This Ability podcast. So thank you all for listening and be sure to like our social media pages and follow us on Apple Podcasts, Spotify, YouTube, and all of those other podcast platforms. So thank you for listening and thanks again, Sierra, for being here.

Sierra Stevens (44:36):

Thank you.

Mary Baudoin (44:37):

All right, you have a good afternoon. Thank you.