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Nov. 29, 2021

Raising A Child With Disabilities

Raising A Child With Disabilities

In this episode DJ talks with Clarissa about how to raise 6 children with different needs and desires when one of them has cerebral palsy; her life of frequent doctor and therapy appointments and her hesitance... then acceptance of respite care so she could use it as an opportunity to rejuvenate and take care of herself. 

Don’t miss this episode! DJ chats with Clarissa Nelson, mother of 6 whose oldest was born with cerebral palsy, to discuss raising a child with disabilities; how she manages her time, her attention and the clever ways she gets the older of the remaining 5 children involved in the younger children’s care and activities when she needs a helping hand.

Listen to this episode to hear Clarissa’s story of finding out her first born had cerebral palsy, how she and her husband handled that news and how a youth based charity called the Sparrow Club helped provide financial and emotional support for them during their time of need. 

Stay tuned for this episode! DJ talks to Clarissa about raising a child with disabilities... plus 5 more; how she has to remember to stop and breathe when it all seems too overwhelming, how her family steps in to help and how she makes it all work and keeps a positive attitude through her faith. 

BY THE TIME YOU FINISH LISTENING, YOU’LL UNDERSTAND how one couple navigates through life with 6 children, including one with disabilities, and how they strengthen their own relationship by ensuring each other’s needs are met when there is limited time. 

Are you raising a child with disabilities? Share how you cope when things become too much and how you find time for yourself to rejuvenate and tag us on Facebook or Instagram @littleheartsacademy

Link to Sparrow Club mentioned in the podcast: https://www.sparrowclubs.org/

Connect with the host:

DJ Stutz: https://www.littleheartsacademyusa.com/

Facebook: https://www.facebook.com/littleheartsacademy/

Instagram: https://www.instagram.com/littleheartsacademy/

YouTube: https://www.youtube.com/channel/UCOpphCRklDJiFXdS76U0LSQ

Transcript

DJ Stutz  0:13  

You're listening to Episode 23 of Imperfect Heroes, Insights Into Parenting, the perfect podcast for imperfect parents looking to find joy in their experience of raising children in an imperfect world. I'm your host, DJ Stutz and in this episode, I'm talking with one of my imperfect heroes, Clarissa Nelson. Clarissa and her husband are just simply amazing. And they have six kids, three girls, three boys, and their oldest is brinly, who was 13 and is severely disabled with cerebral palsy. And in our conversation, we talk about the pressures and the joys of raising such a family, and how they work to meet the needs of their other children. How they work together to meet each other's needs as a couple, and how others help and how good intentions can sometimes get in the way, there's so much to learn. So let's get started.


Before we get going, I want to tell you about our sponsor, my company, Little Hearts Academy USA. Coaches are a common part of our society. And we use coaches to help us lose weight to get in shape, to help us become better athletes better at our jobs, and the list just goes on. So why not use a coach to help us with the most important job we will ever do? Raise strong, moral and independent kids. Little Hearts Academy USA offers one on one and group coaching to help you create loving and lasting relationships with your children as you strengthen your family in a way that will impact generations. So give me a call. Our number is 720-989-6475. And let us discuss the best ways to make life better for you. And be sure to listen to the very end of the episode for a post credit scene if you will to get in on a special offer for those who linger longer. 


And if you enjoyed today's episode, please leave me a rating and review. Just so you know five stars is the appropriate number of stars. And I would really appreciate it. This helps my podcast to grow. It helps us to reach other families that could benefit from what we have to offer. So since we've recorded our conversation, Clarissa has given birth to a beautiful little boy named Owen. And I'm so happy to hear that she has lots of family nearby, along with friends who are there to help. You know, I am amazed by people who face hardships and challenges, but remain focused and positive. They move forward looking at what needs to be done, and the people they need to serve in the process. And Clarissa is one of those imperfect heroes that may not get it. All right, but don't give up trying. And we discussed what it takes to stay on top of Bryn Lee's needs and the needs of her other family members, how she and her husband chi work to support each other, and how they had to work to understand how to come together. It wasn't all easy peasy. And it took determination and some self awareness to get to the point where they are now they had to learn how to make assessments on what is important and what to let go of. And there's so much to learn. So let's get started. So I am joined here by one of the imperfect heroes that I admire so much. And her name is Clarissa Nelson. And I'm just gonna let Clarissa introduce herself.


Clarissa Nelson  4:05  

Alrighty, so I'm Clarissa. I'm married to Kai Nelson. And we have five children with our six. We will be here in a couple of weeks, hopefully sooner. So we have three girls, and then the last three are going to be well the last one is a boy too. So we'll have three girls and three boys. Our oldest is brinly. And she is 13. She has cerebral palsy. And this was happened at birth. So we didn't find out till she was about five or six months old. And then we have Casey's 10 Taylor is almost eight. And Porter is for chahti is two and then the new baby which we don't even have name for though.


DJ Stutz  4:50  

Well, that sounds great. And then you've been married how long?


Clarissa Nelson  4:53  

About 15 or 16 years? I remember. You got six


DJ Stutz  4:59  

would that many Kids, I don't blame anyone for not being able to keep track of it. And son Kai is your sweetheart? Yes. Okay. One of the things that I guess I wanted to talk about is in a couple of the families that I work with in coaching and stuff that and they have special needs kids, they're nowhere as involved as your Brinley is, brenly is pretty significantly involved. But one of the things that I've noticed is there can be a rift or jealousy, kind of a thing with your typical kids that see all of this time being spent on the special needs kid. And that can cause a little bit of rift, how do you see that playing out in your family?


Clarissa Nelson  5:47  

Yeah, so I would, I would say notice that a little bit with my kids. Well, this is the starting of it, I would say, you know, there's times when I have to take care of Billy, and I'm trying to put Chauncey to bed or something. But brinly needs me. And so a lot of times, I can see, you know, with the younger kids, I feel like it's a little more that they're, you know, they're being more needy. So a lot of times, I'll try and help have the older kids help out. So my 10 year old and seven year old, I'll have them go read to John for your help scratches back while I get take care of really, you know, and I kind of incorporate them and have them jump in when they can. So


DJ Stutz  6:28  

I'm sure like any other family, there are times when they're really super willing to help out with that. And then other times, it's like, oh, again,


Clarissa Nelson  6:37  

right? Yeah, there's times when they're definitely like, Well, I really don't want to do this right. Now I just want to do my thing. So yeah, I do try and like have them at times help out. But then if I see that they're needing their own time, I try to let them have that as well. And then to spend that one on one time with them as well when they do that. So


DJ Stutz  6:58  

I think that one on one time is just so key. And whether you have a special needs child or not, that's just part of raising kids is making sure that you've got that one on one time with each kid, I think, especially as your family grows, when you're having a larger family like you that they can kind of get lost in the shuffle. Yeah, yeah. And so I'm really pleased to hear that you're doing that one on one time. So what are some of the things that you do with them during that one on one time,


Clarissa Nelson  7:27  

so we try to do things that they like, Casey like to do a shopping will take for some not all the time, but you know, I'll take her out shopping, or most flower, Taylor likes to bike riding. We've also started doing, Casey wanted to start doing exercising in the mornings, like doing the videos that I do on or going running or something. And so I started doing that before school, and I was surprised that she wanted to do that because it's early. Yeah. And then my husband started taking over when I was getting a little, you know, done with the exercising with being bigger pregnant. So he's kind of taking that over and, and is enjoying that one on one time with her as well. And I think they really appreciate that they, in fact, Casey especially she really thrives on that one on one. And there's times when Taylor will wake up and say I want to do it too. And Casey's like, no, it's just my time.


DJ Stutz  8:22  

so protective of it. Well, and to it's wonderful, because we know and there's so many studies out there that show the connection between a father and a daughter and how that relationship affects them. Not only as they're growing up, but well into their adult life.


Clarissa Nelson  8:39  

Yeah. Well, now it's another My husband also has started. Wait, he's been off and on our whole marriage, but lately, he's been doing a lot of reading with the kids at night, so and it's hard to do all of them all every night, but so we'll take turns with each of them every night reading whatever cases in the Harry Potter right now, so that's what


DJ Stutz  9:02  

Yes, I'm a Hufflepuff.


Clarissa Nelson  9:04  

Yeah, she's a Ravenclaw. She's already taken a test.


DJ Stutz  9:07  

I'm so jealous. I wanted to be a Ravenclaw. But no, I'm a goofy Hufflepuff. But that's okay. I'm taking it with pride. So, anyway, and so that's a really good thing that you're making sure that they're getting that individual attention. And well, let me switch gears a little bit. Let's talk a little bit now about the friends that your typical kids have. And what kind of questions or have there been any uncomfortable situations or comments or I don't know, how does that go for you?


Clarissa Nelson  9:45  

Um, a lot of times, they'll just asked what's happened to her their concern like what why she like this, why can't and I would say it's usually the younger kids, right? Like the older kids. They don't want to ask them just kind of, they're curious, but they're not. Usually I feel like like Casey's age 10 year old I feel like they don't usually ask as much depends on the kid to some of them are more outgoing. So, yeah. But the younger kids, I feel like they are the ones that are always more curious and willing to ask. And they usually ask is like, Why can't she walk? What's wrong with her? And, you know, I mean, I'm usually just answering Well, she just was born with it, and she can't walk. And there's something that happened to her brain. And so the connection is not there. And so she can't walk or talk to her. And I think it's hard for them to understand that a lot of times. So they ask more questions like, Well, why? Why can't they walk? Like, why? What's wrong with you know? Yeah, just trying to wrap get their heads wrapped around that?


DJ Stutz  10:51  

Yeah. Do they ever seem to worry about or maybe even your own kids worry about catching it? Like, you can catch cerebral palsy, but


Clarissa Nelson  11:01  

Oh, no, not that I know of anything. Not that they've expressed. That one hasn't been a thing for us. But yeah, I'm trying to think of what other questions they might have asked. Right. Yeah, the biggest one is just you know, why? What's wrong with her brain? Why was she born like that? Or? Yeah,


DJ Stutz  11:18  

yeah. That's really interesting. And so then let's move kind of backward in time. So you have your first little Darlene baby, how old were you?


Clarissa Nelson  11:31  

Oh, I was 22. When I had


DJ Stutz  11:34  

that's how old I was when I canvas. Yeah. 22. So you have your first baby. And you don't realize that something's wrong, right at first. Is that right? Wow.


Clarissa Nelson  11:45  

Well, for me, I was we didn't know that. We didn't know that there was something wrong until she was about five or six months. Like at first we just thought she had epilepsy or something going on. She was in the NICU for like 10 days after she was born. But we didn't we didn't know to what extent we just thought, you know, epilepsy and then that was it. But then things were not progressing quite well for her. She wasn't developing. And her head was growing. Anyway, the doctors told us about five or six months that there was brain damage and cerebral palsy. And they I think they even mentioned, quadriplegic, and I was just like, what does that even mean? Like, call the audible quadriplegic? What is, you know, so we were like, what does that mean? She's gonna walk and we're like, we don't know for sure what's gonna happen. So we didn't know if she was gonna walk or talk or be able to use her hands or anything. And so we just kind of took it day by day. And whatever happened happened, at least that's how I looked at it. And it was a little harder for Kai. When he found out he was, he's more like, kinda, what do we do with this? Yeah. How to handle this. And I, I've been, I mean, I'm the mother. So I'm more of a nurturer. But I've been the more of the caregiver. I think we talked about earlier how he started that cuz I try. Yeah.


DJ Stutz  13:07  

And that was the thing where he was trying to, I think, either bring attention to or, or something through triathlons. Right.


Clarissa Nelson  13:14  

Yeah. Yeah. He was just trying to do like a race for really basically. And he had people join in if they wanted to do it. Back on, opening so. And then we also did Faro clubs with it's a club that you do, and you can do in junior high or high school. But it's a club where you go out and do service, for every hour of service you do Despero family gets so much money to then go and use on medical bills or, or, you know, other needs for for the family because of their of their child's needs. And that was introduced to us from from Uncle Ted, your brother?


DJ Stutz  13:57  

Yes. So for everyone listening, that's episode three. Ted is an orthodontist up in Medford, Oregon. And he's amazing because he is super involved with not only with just his kids and family and his job, but his whole community. And so it's probably how he made that connection for you.


Clarissa Nelson  14:18  

Yeah, well, one of his clients was a mess, Samson, and everything. And he's the he's the guy who heads the whole spirit club, and he started out in Oregon, and they were trying to bring it down to Arizona. And he just happened to be talking to Ted about it when he was getting his teeth worked on. And Ted mentioned us and how we might be a good candidate for a sparrow and so Matt reached out to us and anyway, long story short, we were the first barrel for Arizona now it's kind of grown. I don't know how big it is now but they've had several schools doing it now. And Black Rock coffee shop is their sponsor too. They they donate like $2,500 to every squirrel and several sparrows every year now so nice once each school but several schools now so


DJ Stutz  15:08  

so the name of it is what? Sparrow clubs? Sparrow clubs? Yeah. Okay. I'll do some research and I'll see if I can't put their contact information or website in, in our episode notes.


Clarissa Nelson  15:23  

They would love that, I'm sure. Yeah. And if you want that there's actually a video of grilling on if you want it to YouTube it. It just look up Sparrow clubs Brynlee. And I'm sure it will come up somewhere,


DJ Stutz  15:35  

often. Yeah, I'll include that in our Episode Notes as well. Read a little bit. So yeah. That's really cool. That's really cool. So you got brinly and your other kids? And what kind of help or do you get help with brinly? Or getting her I'm sure she has a myriad of doctor's appointments and therapies and stuff? Yes. Yeah,


Clarissa Nelson  16:01  

I Jabra is going to doctor's appointments all the time. Wow. therapies. And, yeah, so we get help. We do have respite and habilitation, which is kind of help with like therapies and stuff outside of therapies. And we had help off and on. We had help more reading beginning. And then I realized it was getting to be more of a hardship for me than a helpful thing. So I decided to stop and do some go with someone else. Anyway, long story short, I feel like respite is good. And it helps me but it was also kind of a, it was kind of stressful. If it's someone I don't know very well, because me personally, I'm not very good at telling people what to do or not to, not to do or don't like, what they're doing or, and so I was kind of been feeling stressed, like because they're in the home all the time. Not all the time. But when they hear that, and I felt like I was trying to change, not necessarily change my words, but like, put on a show for them. Like I had to be a certain way when they were here. And it wasn't all the time. But it was enough that it was stressful. And I would try to make it like it was nothing like okay, well, they're just here helpful, friendly. I'll just continue on. And I would but everyone's want would just kind of sneak up on them. I feel like Oh, I gotta be doing the dishes over here while they're here, because I got to make it look like I'm working or, you know, different things like that, where I would notice when they were there, I would actually, it wasn't intentional. It was just, I would catch myself doing it. Do I find I feel like I have to be a certain way. Yeah, for sure. And so it gets stressful. And so I've found that it's actually nice to have someone you know better than you feel like you can be yourself more. So right now we actually have my cousin doing it. And I'm very comfortable with her so, but she can like come on breaks because she goes to you for college.


DJ Stutz  17:58  

So she's coming to you. So this is your cousin. And she's coming to you when she's not busy with college.


Clarissa Nelson  18:06  

Right? It's mainly in the summertime and then for winter break. Got it? At school,


DJ Stutz  18:13  

so yeah. So then what do your other kids need extra help? Or how do you get like homework done and all those other pieces that are part of growing up? That was


Clarissa Nelson  18:26  

an issue. I remember when I was younger when we were all younger. Casey was just starting school. And I remember when she started getting homework, I was like, This is insane. Like why she was one of ours that was really struggled with homework. She kind of I don't know, she just It was dreadful for me. And but we'll leave it at that. So it was just the pain. And I remember thinking, I cannot do this, like why? What is the deal with homework? Why it anyway. But as we've kind of gone on, and we realized Taylor when she started school, she didn't have that same she was like, pretty good about doing our homework and not so right. So I don't know what the difference is maybe just personalities. I don't know. But maybe Casey was already doing it. So she felt like she I don't know what it was. But it got a lot easier. And it got easier for Casey to when Kate Taylor started doing it because Casey felt like oh, I'm not the only one doing homework now. Right? So anyway, maybe that's something I should have done is made Taylor do something homework. Like, while Casey was doing that she didn't feel like she was the only one. Oh,


DJ Stutz  19:37  

you know, 2020 is always great. Hindsight, but it's not always even accurate. Yeah, you know, I mean, sometimes it's just the personality of the kiddos. Yeah. Well, you have several kids, you know that you have several personalities. Nobody's the same and they all have different needs and desires and skills.


Clarissa Nelson  20:01  

Yeah, so anyway, years gone on and Casey still kind of struggles in school a little bit. She, I think we started her a little early, we probably should have held her back another year. But we've decided, especially with COVID. And then being, the more behind, I would say, with COVID, because of the school stuff that went on, and how we were online, it was just a lot more difficult. So anyway, we decided to do some tutoring at home. And I feel like that has made a big difference for me and for them for me, because I have someone else that's helping support me in trying to help educate the kids aside from school. Right, right. And so that has been a big up and they cost a little bit money. But it has been a big help actually, with those kids. And they actually look forward to it now.


DJ Stutz  20:51  

Often. Yeah, and sometimes it's just having someone that isn't mom.


Clarissa Nelson  20:56  

Yeah. That that is a big deal. Yeah. Because I think, especially with Casey when being, because I didn't really have homework with Brittany, it was. So with Casey, I think I was a little more stickler on. Oh, you got to do it. Right. You know, what's right. Why was fix it? You know? And I, I think, I don't know, it's just like a learning curve. I didn't do that as much of Taylor. So maybe that's why she loved the homework more, I don't know. But having the tutor be in there is a lot better than me. Because, you know, I'm not trying to tell him how to do it. Right.


DJ Stutz  21:33  

Right. It's right, right. Yeah, that's a great point to make is maybe getting that help when you realize that you need it. And then just managing to get that help the right time for your family. And then I wanted to ask you, do you have other like, just friends or I know you have your cousin that helped you? You come from a large family? But do you have friends that will kind of kick in and help or the responses you get from adults? Sometimes can be very childish?


Clarissa Nelson  22:09  

Yeah, may our help usually comes from family. Yeah, I'm gonna have some friends. But I'm not super close to a whole lot of my friends. Most of them are just in our church, and I'm just closer to my family. So yeah, and they will actually step in and help out like, the other day, my parents actually came and help clean the house a little bit and no mentioning anything. They're just like, hey, we wanna we want to come help you. So


DJ Stutz  22:36  

that's really nice. Do you ever feel like when they're coming over? It's like, Ah, you're not doing the house? Well, and where do you have to come help you? Or is it just let me take this off of your shoulders?


Clarissa Nelson  22:49  

Um, it can be both. It depends on their attitude about it, and also what I'm doing at the time. Like, when they came, I actually had a I told them I was like, well, we're gonna have a playdate. Like, we have someone coming over for a playdate. And the mom was gonna say, to me, we were gonna chat anyway. So anyway, but they were just like, No, it's fine. We'll just play over there. Ah, so that was like, for me, I was like, Oh, great. That's fine. I don't mind. Do what you want to do. And, yeah. But you know, there's times when it could be like, okay, just don't come over. You know, there's times when I'm like, I don't want to direct you guys and tell you where to put things or, you know,


DJ Stutz  23:33  

yeah, sometimes people's intentions are really good. And they really do want to help. But in that effort, it's more, it's actually more work for you. Do you ever find that's the case?


Clarissa Nelson  23:46  

Yeah. I mean, there's times when people have come over to help clean or whatever. And I'm like, well, they're half this stuff is piles of papers on the camera. I have no idea what to do with because I haven't gone through any of them yet. You know, so we just kind of have to go around it and, and just do what we can and not worry about the rest.


DJ Stutz  24:07  

Yeah. Yeah, I know, you mentioned that you go to church. Do you feel like faith really helps you through all of this?


Clarissa Nelson  24:16  

Yeah, I would say so. I mean, just the eternal perspective, you know, looking at a future and what it brings, and then, knowing that, and our faith, I don't know what your listeners believe, but in our faith,


DJ Stutz  24:32  

we believe we have a wide variety.


Clarissa Nelson  24:34  

So we believe that as a family, Muay Thai was sealed in the temple and so we are an eternal family, we will be together forever. So just keeping that perspective in mind has been good for me. I feel like we're gonna be together forever. So let's make a work together forever. Like this not make the little things Yeah, big.


DJ Stutz  24:56  

That's, that's actually that's really good. So How do you manage it when there's got to be days when it's just like, I can't do this anymore? Yeah. What are some things that help you through that?


Clarissa Nelson  25:12  

Um, yeah, there's definitely many moments or days that are like, but I just have to take a step back and take a breath and say, You know what, it doesn't matter in the long run. Let's just get through this moment, let's take a breath, let's, you know, Riku, especially when I find myself getting upset with the kids, that's when I feel like it's really hard. Like, I find myself starting to yell at them because of this or that. And I have to step back and realize, okay, this is not important. In the long run, let's just pull down, let's not, let's not make this bigger than it needs to be. And then, and then come back when I'm ready, instead of one then also realizing too, if it's just because I'm hungry, that I'm acting this way, or, you know, there could be other reasons, I'm not getting enough sleep or, you know, trying to take care of myself, too, you know, just looking for those opportunities to rejuvenate myself as well.


DJ Stutz  26:12  

Right? It seems to me, and this is just me, you know, in my personality. But that would be one of the key things that would help me get through it as being able to go and get my nails done or get a pedicure. I know you're not into that I am but but I mean, or to get a facial or what is it? But having someone come and say, you've got so much on your plate. Let me just watch the kids while you go and do x, just for you.


Clarissa Nelson  26:42  

Yeah, yeah, well, I think a long time and self time is definitely a big thing that you need. The kids need you all the time. And that's great. But you also need your time as well. And I think looking for that, you know, just an hour a day, even sometimes, like enough, but you know, just trying to make that time where you go, and I don't know what I do whatever you like to do, I like to exercise or not help. They kind of get through the day. So I right now I'm not doing it. But I usually get up early in the morning to do my alone time and have, you know, exercise and time to sing or


DJ Stutz  27:22  

whatever. Yeah,


Clarissa Nelson  27:24  

even reading a book or something. Or, you know, it does get hard though, because then there's other things that need to be done too. And I think setting that stuff aside, like housework, or if you have a job, you know, just different things. I think you kind of have to set aside that's not really self time. It's not stuff that you need me. I think that's kind of separate from yourself. But


DJ Stutz  27:48  

yeah, yeah, that would be key. And once again, that something that is key, whether you have a special needs child or not. You need to be able to rejuvenate yourself. I think that with a special needs child, though, then I think that for me anyway, as I imagined it, I mean, my special needs child was ADHD, it's just like yeah, but, but nowhere near to what you manage every day. But just having that time to go run, or I used to enjoy running now I'm old and fat, but but having that time, and and I get that you when you say I feel guilty about the housework that needs to be done, or all these other things that need to be done. But at the same time, this is really important, too, and needs to be on your list of things that you absolutely have got to get it done.


Clarissa Nelson  28:51  

Right? Well, that makes me think of my husband, he wouldn't exercise for longest time because he wanted me to have my time. And he felt like he went out he wasn't helping out with the family. But I think he finally realized that I need this time too. And so he figured out a time where he can go to and do his thing, because he needs that too. So Right. It's it's both of you need to take the time. And we both you know, as husband wife need realize that, too, and help each other out with that. So


DJ Stutz  29:22  

yeah, and isn't that a great way to show your love for one another and strengthen that relationship is saying that I understand you have this important need. It's a healthy need. And so you matter enough to me that I'm going to make sure that that happens for you. Right? Yeah. Yeah, that's all really good. And so talk to me a little bit about all of the appointments and how do you keep track of what's next for brinly? My, one of my big things as a teacher is finding out where Your kids are now and how people will get so caught up with what should be that they don't deal with what is. And so meeting my kids where they are, and then what's the next step? They may be way behind. But I can't teach them at this grade level, because they're just not there. And so I have to look at where they are. And what's that next step? What do you see as next steps for brinly?


Clarissa Nelson  30:26  

You know, that's a hard one. Because with her, she doesn't communicate very well with us. Mm hmm. I should say it's difficult for her because she can't talk and she can't function with her hands.


DJ Stutz  30:41  

So sign languages out.


Clarissa Nelson  30:43  

Right. And so for her, I mean, with her, it's, it's the therapies that we do. And I feel like the progression is so slow, that it's really hard to see it. Right. You feel like you got the same goal going on for five years. Right? Wow. I mean, that's what it feels like. And there's, you really have to take it, baby steps like incremental micros, you know, but then, so for her, I would say it's finding the things that she can do. And taking that to the next notch or finding out where she is, we can maybe try and be successful. So like for communicating, we started out with her therapies to try to have her have a communication device using switches, and try your hands at first, and we didn't get anywhere. I mean, it was, we felt like we got nowhere. She grew over time, but it was very minimal. And so we try something else after a couple years. And we tried doing it with her head, usually switching overhead. And we got some success. But again, it was just very minimal. So it's just then we tried an eye gaze device, and she can look at the screen and looks at it selects it, and then it'll say what she selected. And that has been some progress. But again, it's just so slow that it's like, can we really going to get anywhere with this? Not enough for her to communicate successfully, right? I mean, she'll say one or two words here and there that are sometimes in context and not. So with her eye gaze, I feel like it's kind of come some ways, but it's still not enough to talk, we were too jealous. So now we're trying again, doing what switches again with the eye gaze, but we'll see how it goes with that. So anyway, it's just, it's just trying different things. And that's kind of our next step with really is just seeing what things we can work with. And a lot of that has helped with our therapists who can help us find those different things that we can do to help your next steps and enter doctors help with that, too. Sometimes, you know, they'll, when we go in, they'll suggest something. And we can dry it out a lot of times medications with the doctors, but I don't always love but yeah. And then our teachers at school help with that, too. A lot of times they'll see something that I don't always necessarily see or that maybe I do see, but I don't think is a big deal. And sometimes they can help with that. Other times. It's annoying when they talk about it.


DJ Stutz  33:29  

Well, that's an that's an interesting,


Clarissa Nelson  33:31  

sometimes it's almost too much input. Yeah. It is told me I should go to this doctor. Teachers told me I should do this. And I'm like, Okay, I'll take that information. But I can't do anything. All right.


DJ Stutz  33:42  

That's got to be hard. Yeah. Yeah. You've got so much going on. And you've got these amazing kids and your family's growing and you're so busy with everything. I wonder, do you ever feel? I don't know. I mean, I guess they say there's a mourning process that goes when a child is disabled, similar to the death of a child because it's the death of the child you thought you were going to get and the realization of the child you have seemed relatable to you at all. Um,


Clarissa Nelson  34:22  

a little bit. Um, for me, it was a little bit more of a just, like a focus for me. I, I kind of accepted it. But more than my husband did. Yeah. I think for him, it was more of a mourning process, where he's like, I don't know what to do with this for me. I was just kind of like, Okay, what's next? Yeah, well, this and I think my I guess you can say my mourning process was delayed because, you know, some people don't cry right at first, right? It happens later. So I feel like mine was more like that if you want to relate it Do that. Whereas my husband was more weird at first was like, I don't know what to do. It's. So for me, it was more just as time went on. And as things got harder, that's when I was more like, okay, what are we gonna do this part? What am I gonna do this, you know, the struggle, whereas at first I was more like, Okay, well, what's the next step? Still daughter, she's not dead.


DJ Stutz  35:26  

Right? Right? And what kind of how did you go through the process of deciding even to have more kids?


Clarissa Nelson  35:36  

You know, at first we were like, was this genetic? And we're going to have more kids that are the rest of our children going to be like this will be should we have any more kids, right. And when we found out that it was not genetic, that it was just kind of a fluke thing, that's when we were kind of like, you know what, let's, let's not let this make our decision, or change the way we want to think of having our family because we always wanted five or six kids. And we're like, you know what, let's, let's not let this hurt us. In that way, let's, let's just keep going. We can make work. First, when we never were for sure on if we were going to have five or six kids. I knew I wanted at least for a ticket with one kid at his time. And we had the fourth one. And we're like, you know what, let's I think we can be known. And also, you know, after each one, like, why do we do this?


DJ Stutz  36:31  

Yeah, I'm sure there are days when you think, what have we done? Yeah, yeah, I relate to those days really well. My kids are all grown, I still relate to them. You know, your kids are your kids, and you give them the best shot. And that's


Clarissa Nelson  36:55  

when you try to think about life without them. And it's, you know, it would not be any better. So,


DJ Stutz  37:01  

well, that's what a great statement that life would not be any better without these other kids. And what a great outlook to have. So speaking of having little kids and all these kids, as you look around, and from your perspective, how would you define a successful parent?


Clarissa Nelson  37:22  

A successful parent, let's see, I think anyone who has the heart to love their kid is successful. I mean, the desire is there to help them out and you're willing to do the things that required you to be there for them. And I mean, there's definitely times when you're gonna feel like you're not successful, because you're not selfish, or, but that's part of life. And I think it's okay to be selfish at times. Right? So I think someone who's successful, just anyone who has the low heart to below their kid,


DJ Stutz  37:58  

early, yeah, that's lovely. And I, man, I like it. I like the simplicity of it, too. I kind of like breaking things down when people get too convoluted and, you know, into all of these other ideas, when it could just be a simple answer. I'll go for simple every time.


Clarissa Nelson  38:20  

That's what I like. I try go for simple. It makes sense again.


DJ Stutz  38:26  

Yeah, for sure. For sure. And for me, it makes things more clear cut. Yeah, too. So anyway, that's me.


Clarissa Nelson  38:35  

It's hard to keep it all in line. So yeah,


DJ Stutz  38:39  

exactly. Well, Clarissa, you are a parent extraordinare. You are just an amazing person. And I love seeing you and Kai and all the things that you guys accomplish. And so maybe we'll check in down the road down the years and have another check in and see how things are going with that amazing family. Yours. Oh, okay. Thank you. Yeah, thank you.


Clarissa is just amazing. She has so much on her plate. But she has such a great attitude. And it can't be easy. And there are times when it is all just so exhausting. But she had some key ideas that helped her get through and continue to help her. So one is being honest about where you and your family are. Clarissa was able to say that she could see a rift occasionally, with the typical children being a little jealous of brinly and the time it takes to take care of her that level of honesty and really looking at our kid, not judging them, not getting angry with them, but just seeing, Oh, this is where they are, then they might need this help or that help. And I've got to meet Burnley's needs which are significant. So how am I going to do that? And just take that inventory, if you will, to help you and your spouse, know what steps you need to be taking. She said that she realized the two girls, the older ones take up a lot of slack at the ages of seven and 10. And so she and Kai, make sure they have special time with each parent doing things that they love to do to help support them. Understanding that they are having to take on some responsibilities much earlier than someone from a more typical family might have to. Another thing was understanding that different people in the family will have different reactions to wrapping their heads and their hearts around having a child with disabilities. Clue versus reaction was very different from Kai's. And it's important to allow and support each other through their own process. And I know many couples break up when a child with disabilities comes into their family, because they're frustrated that the other person doesn't understand what I'm going through, right. But we fail then often to understand and put the effort into what they're going through, and what their processes. And so I just thought it was great that Clarissa and Kai, they did need some time to work that out. And to understand how each one was dealing with this information and the changes that it meant to their lives differently. And they both had different ways of wanting and being able to help. And to make it work. Clarissa was able to stay home and take care of all those needs. Because that's just a lot going on in Chi went on to do, you know, taking care of the finances and doing that and then helping in a way that he felt he could do doing that. Because I try and the triathlons and moving forward to bring awareness in his own way. It's so important that we give people the right and the ability to be themselves in how they manage it and not be judgmental about it. Because they're not doing what I want them to do. Well, chances are, you're not doing what they want you to do either. So just kind of being loving and kind and understanding in the process, I think that's really going to be helpful. I was really excited to hear about these barrel clubs. I'd never heard of them before. So there are groups and associations that are there to help other families dealing with such issues. And they need help emotionally and financially. So I will have a link to the website for Sparrow clubs in the show notes, as well as a link to a video about brinly on YouTube from the sparrows club, they have a total of three videos, they're on brinly, I'm just going to link you to one of them. But it's kind of fun, you get to see her and the family. And I noticed that when I was looking at these videos, there's only four kids. Now there are six. So keep that in mind as you're watching. One of the things that I thought was very important for us to think about and that Clarissa mentioned, was that when you offer to help a family or a friend who has a child with a disability, please make sure it's helped that they really need not just something that you think they need or something that Oh, well I can do this. Well, maybe that's not quite what they want. It was interesting to hear Clarissa talk about how sometimes she felt like she couldn't be herself when other people were in the house. And sometimes they did things not in her way, putting things away or managing the other kids. And it was hard for her to say, Gee, I'm glad you're taking out this big chunk of your day for my benefit. But that's really not what I need you to do. And it was hard for her to say that. And so really getting to know the family, getting to know the parents and seeing what is it that would honestly be helpful to them, not just something that makes you feel good. I thought that was an important point. Know, families tend to get a lot of help when their child is new, or the disability is just been manifest. But as time goes by, that help tends to fade. So it might be important to just make sure that it continues in a way that they can manage it. Sometimes it's let's go for a run together, you know, or let's go to a movie or go out to dinner or a lunch or something but realizing that it's going to take some organization to be able to do some of those things to get that parent or couple out of the house so that they can have a relaxing time. And maybe it you being there with the kids while they go out. But at the same time you being there with the kids, it's kind of hard, especially when there's a disability, to make sure that you know exactly what needs to be done in that time. And so that if something happened, or what are the possibilities, and what do we do and all of that, it makes it a little harder to just say, Hey, let's go out to dinner. But it may be something that they could really use. And when it's you that have a child with a disability, it is really important to assess where you are and where your family is. And where you really need help. It's honestly okay to ask for help. And in fact, it's really nice when you can be very specific in the things that you need, instead of speaking in general terms, then the chances of them accomplishing something that is really valuable to you, instead of just thinking, Oh, I'll do the dishes. And wait, that's just what you need. But realizing that if you put everything away in the wrong place, it's a little frustrating, isn't it when someone comes and does that. So think about those things that is okay to ask for help. Make sure you're taking time to take care of yourself. I see that Clarissa was getting up early until she was pregnant to do so. But she was getting up early to make sure that she had some time to work out and to get that physical burst of energy there to wake her up and to help her get ready for the day. And really, honestly, be sure to take time to take care of your relationship with your spouse. This is important. Whether you have a child with a disability or you don't taking care of that relationship is really key. And I could so it really just be sure to take time to take care of your relationship with your spouse. And this is important. Even if you don't have a child with a disability, you should always be aware of what you need to do to really take care of that relationship and be appreciative of the things that are being done. And the and the ways that they are trying to help be forgiving, be gracious, it's a lot easier taking care of kids with two parents than to be a single parent going through this. I don't know how you would manage that. That's something pretty amazing if you're doing it alone, but it's just so much easier when there's two of you. And then also respect each other's process. And understand that probably not going to be the same as your process. So look for ways to support them in the way that they're managing through. And then even speak up and say, Hey, I could use this. Or I could use that in a kind way, not an accusing or angry way. I know we get frustrated sometimes. And it's just often because we're tired, we're exhausted, we have all these worries on our mind, and all of these things that go on that the more gracious we can be with our spouse, and respecting them and what they're going through as much as what you're going through is really going to help. So that was just an amazing episode I really loved talking to Clarissa. So you may notice that I have basically three types of episodes, I have the ones with just me alone, talking on a subject, sometimes I'm able to get an expert in, which is always fun to talk to. But my favorite episodes are the ones with imperfect heroes, with everyday parents going through everyday problems, or sometimes very big challenges and how they manage through that. And so you'll see when I'm posting and dropping these episodes, when you see me imperfect hero, and then I'll give a name, you know that that is a parent that is going through many of the things that you will be going through or you have friends or family that are going through that. And I love the imperfect hero guests that I have on the show. So remember that this podcast is the product of Little Hearts Academy USA. So check out our website at WWW dot Little Hearts Academy usa.com and sign up for my free newsletter. And you're going to get insider information about the podcast and programs that we have coming up. And if you enjoy the podcast, I would love for you to post about it on your social media. Just tag me on Instagram. I'm at imperfect heroes podcast on Facebook. I am at Little Hearts Academy USA and we are continuing to grow. So we now have listeners in 10 different countries and we're up to 25 states. So I'm officially halfway to my goal of having listeners in all 50 states and the more you share the more families that We can reach, you're always able to get ahold of me on Facebook, or Instagram. Or you can just email me at DJ stats at Little Hearts Academy usa.com. So in Episode 24, I am talking to another real life imperfect hero. His name is Matt Ballard. And he is the father of two amazing kiddos. And we sat down and had a great conversation about how to help your child focus in on the spirit of giving, rather than the spirit of getting. And it was so inspiring to hear his take, and the great ideas that he had. So learn what I mean by tuning in to the next episode. And until next time, let's find joy in parenting. linger


longer hours. So here's your big chance to try and connect with a parenting coach. Whether you're looking for one on one coaching or group setting, just give me a call at 720-989-6475. And let me know that you are a linger longer, and you will get your first two sessions free. Yep, I set it free. So if these work for you, then you can move forward with a monthly program that will help you build your parenting skills and your relationship with your family. We know you want to and so remember that I still teach school. So if you call and I don't pick up, just leave a message and I will get right back to you. And the number again is 720-989-6475 or you can email me at DJ Stutz s t u tz at Little Hearts Academy usa.com So enjoy your week, and I'm gonna go now


Transcribed by https://otter.ai