Sunday, May 19, 2024

Episode #91: Marriage and Disability: Secrets for a Happy Marriage When Your Child Has Special Needs

In this episode, Kristin & Todd Evans, authors on marriage with disabled children, share their struggles and winning strategies. Open communication, avoiding assumptions, and professional help are key. Self-care, shared responsibilities, and celebrating small victories strengthen the bond. Though challenging, marriage can thrive with effort and support! Their book offers tools for couples on this journey.

80% Divorce Rate for Parents of Disabled Kids? Myth Busted! Here's How to Build a Rock-Solid Marriage Instead.
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80% Divorce Rate for Parents of Disabled Kids? Myth Busted! Here’s How to Build a Rock-Solid Marriage Instead.

Show Notes:

In this episode, Kristin & Todd Evans, authors on marriage with disabled children, share their struggles and winning strategies. Open communication, avoiding assumptions, and professional help are key. Self-care, shared responsibilities, and celebrating small victories strengthen the bond. Though challenging, marriage can thrive with effort and support! Their book offers tools for couples on this journey.

👉 Connect with Kristin and Todd:

To preorder the book:

👉Learn more about Kristin’s story: https://youtu.be/ZcMPo8sQBU0

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Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

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Thriving Together: Marriage and Disability – Advice for Parents of Children with Disabilities

Raising a child with a disability can be an incredibly rewarding experience, but it can also take a toll on a marriage. The constant stress and strain can lead to communication breakdowns, resentment, and feelings of isolation. But there is hope! In this interview with Kristin and Todd Evans, authors of the new book “How to Build a Thriving Marriage as You Care for Children with Disabilities,” we learn valuable strategies for building a strong and supportive relationship. (See the full transcript of the interview below.)

Building a Support System: You Are Not Alone

Kristin and Todd emphasize the importance of building a support system for yourself and your spouse. Feeling isolated can exacerbate existing problems. Look for online or in-person support groups specifically for parents of children with disabilities. Reconnect with old friends, or seek out new connections at therapies or conferences.

Communication is Key: Avoiding Assumptions and Building Trust

Disagreements about treatment approaches or parenting styles can be a major source of conflict. Kristin and Todd advise couples to communicate openly and honestly. Instead of jumping to conclusions, assume the best of your partner and believe that they have their child’s best interests at heart. If you can’t reach an agreement, consider seeking professional advice from a therapist or specialist.

Shared Responsibility and Respectful Delegation

It’s likely that one parent will take on the primary caregiving role due to appointments, therapies, and research needs. This doesn’t mean the other parent is uninvolved. Discuss childcare responsibilities openly and decide what works best for your family. The key is mutual respect and trust. If one parent is the primary researcher, the other parent can defer to their expertise when making medical decisions.

Finding Joy in the Journey: Self-Care and Celebrating Small Victories

Chronic stress can take a significant emotional toll. Prioritize self-care activities to avoid burnout. Schedule date nights, even if it’s just a quiet evening at home. Remember, a healthy and happy parent is a better parent. Don’t forget to celebrate the small victories, the moments of joy and connection with your child and with each other.

Marriage Isn’t Doomed: Building a Stronger Bond

The statistics may be daunting, but Kristin and Todd debunk the myth that marriage is doomed when you have a child with a disability. With focus and effort, couples can build a stronger and more fulfilling relationship than ever before. Their book offers practical tools and exercises to strengthen your communication, manage stress, and build a foundation of trust and mutual respect.

Remember, you are not alone on this journey. By building a support system, communicating openly, prioritizing self-care, and finding joy in the little things, you and your spouse can create a thriving marriage and a loving, supportive environment for your child.

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Todd and Kristin Evans are award-winning authors, speakers, and special needs parents. They are passionate about helping other special needs parents thrive in their faith, marriages, and mental health. In their new book, “How to Build a Thriving Marriage as You Care for Children with Disabilities” (Baker Books), they help couples build the tools they need to strengthen their marriages. Todd and Kristin have served together in fulltime church, adventure challenge, and retreat ministries. Kristin is a Licensed Master Social Worker experienced in Christian, family, couples, substance abuse, and crisis counseling. Connect with Todd and Kristin and explore their many free resources at DisabilityParenting.com.

 


Episode #91: Marriage and Disability: Secrets for a Happy Marriage When Your Child Has Special Needs

80% Divorce Rate for Parents of Disabled Kids? Myth Busted! Here’s How to Build a Rock-Solid Marriage Instead.

(Recorded March 25, 2024)

Full Transcript of Interview:

Todd Intro Clip: For couples facing the challenges of raising children with disabilities, the most important thing to remember about the relationship is that your relationship is the foundation of everything that everything else that you do in life is going to flow out of that. So, if it’s cruddy, probably the rest of your life is going to be cruddy too. So, put in the time and effort to make that relationship good.


Tonya Voiceover: Do you ever feel like your marriage is taking a backseat to your child’s special needs? You’re not alone. Many couples face incredible challenges when raising a child with a disability. But what if I told you your marriage could not only survive but actually thrive? In today’s interview, I’m talking with Kristin and Todd Evans, authors of How to Build a Thriving Marriage as You Care for Children with Disabilities.

They’ll share their own story along with practical tips and strategies for strengthening your relationship and rediscovering the joy in your marriage.


Tonya:  Todd and Kristin, welcome to Water Prairie Chronicles podcast today.

Kristin: Thank you so much, Tonya. glad to be here.

Tonya: So, I’m really excited to have you both here.

Kristin and I met in season one when she came on to share her own personal story. And there was a change in ministry happening at the time. And that’s why I’ve been looking forward to meeting you Tide, because I knew that both of you were moving in a different direction and listeners, if you’ve met Kristin before, or if you didn’t go back to see episodes 23 and 24, she shared her story there and she also shared some cool tricks and tips for helping your child stay consistent on schedule.

When their own breaks, whether it’s weekends, the holidays, or over the summertime. So, she really had, had some great information during those. But today we’re going to be talking about this new ministry. Todd and Kristin have a book coming out soon, and I’m really excited about this. I got a chance to see it, so, I’m going to hold it up here.

They can tell us more later, but I’m going to be digging from this and some of the questions that I’m asking them about. And first of all, Todd and Kristin, you did a wonderful job on this. I really enjoyed going through it myself and there’s so many tools within this. So, I’m looking forward to sharing just a little bit of what I’ve learned and digging deeper with it, but then also to have you share at the end with it.

So, listeners stay, stay with us. Cause at the end, they’re going to go into a little more detail about the book itself. But, um, but one thing that I noticed when we were going through it, we, we just kind of described the caregiving a little bit, but you mentioned at the beginning of the book that this adds a strain to marriage. Can you explain why that’s an added strain to a marriage for those that are caregiving for others?

Todd: I think from every perspective, it’s, it’s more of a strain. You know, we each have a kind of our own perspective and kind of view on the past. Um, for me, it was especially, you know, my kind of roles in the family were very much the financial aspects.

Um, so, the strain of, of, you know, having to care, um, for another individual that has lots of medical expenses and medical needs and all kinds of machines therapies. Um, so, that’s a strain obviously from, from my perspective, uh, as well as just time, um, for both of us really, that, uh, there’s just so much caregiving and so many things you just have to do that there’s, uh, just whittles away the time that you have for anything.

We considered normal in our marriage before that, you know, being able to go outside and walk together or bike or, um, you know, go out to the park or something, you know, all that just kind of changed with a lot of our circumstances.

Kristin: Yeah, and I’d say 1 of the biggest factors is whatever type of special needs or disability your child or sibling or parent has, um, that adds stress in different ways and added stress on the person.

Impacts the marriage, the added stress can create mental health symptoms. A lot of parents, uh, who have children that have had some kind of crisis, whether behavioral, medical, mental health have, uh, post-traumatic stress disorder, at least 20%. So, one parent is stressed, like Todd said, with finances or just trying to keep his job and make life work.

I’m stressed emotionally. And that stress on this individually really stressed our marriage. Um, and stress also does things to your body, um, that makes it difficult to connect physically as a couple. So, it, you know, the list could go on.

Tonya: Well, you mentioned in the book that the stress is there. We recognize that, but that can also allow for a deeper intimacy in the marriage.

How, how does that work?

Kristin: Working through learning how to work together to problem solve these very complicated problems, learning how to grieve together, learning how to manage stress together, learning how to find meaning and joy. In the present day and present moment, um, actually helped us create much deeper intimacy and growth as a couple, because we had those very difficult.

Dark days. Um, and once we began, now we did not do this at first.

Todd: We struggled. So, at first, it was more like a wedge.

Kristin: The first part of the book is us struggling. We have struggled. It

Todd: drove

Kristin: us apart. It can either drive a couple closer together or drive a wedge, any of those things. Um, and once we began to learn how and develop the skills, To work through that together, um, going through that emotional pain, those sometimes just seemingly crazy, probably the complicated nature of the problems we have to solve that shared misery ever heard, you know, shared misery it, it gave us this, um, opportunity to grow closer and develop a deeper connection than we could have otherwise.

Tonya: There is a chapter in the book about stress management. So, I wanted to ask, could you share some tools that you found that helped to strengthen your marriage? Maybe give an example that our listeners could try themselves.

Kristin: I think it’s both. Individually learning to regularly de-stress on a daily basis and coming together and de-stressing relaxing as a couple. And for me and research shows for a lot of women, we have to, it takes a little bit more for us to de-stress and we have to continually find ways to do that throughout the day that men do.

But, um, it’s very important to do both. So, one thing, um, that we started doing. About eight or nine, maybe nine years ago is encouraging each other to care for ourselves more. And this is so hard for caregivers. Some people literally cannot get out of the house. And we understand that there were a couple of years, Bethany Grace was medically fragile that I didn’t, I didn’t get out of the house.

Um, but we started encouraging each other and sacrificing so the other person could get out and go jog. Um, Todd signed up for a half-iron man. Uh, I thought he was crazy at the time, but, um, you know, it took creative work to give him the gift of saying, no, you need to go run your business. today. You know, I got it.

Um, so, that was part, both individually finding ways, um, to de-stress and then as a couple.

Todd: Yeah. Um, yeah. Learning those skills and you kind of take it for granted, you know, all the time when you have that spare time and can do them and just kind of go out and do them. But, um, but yeah, the individual things, you know, Kristin was great about, um, saying no, take, Go take 30 minutes or 15 minutes, whatever, get out and, uh, and do that.

Um, but then also, like she was saying that it’s important to find ways together to, um, a lot of that does build, um, a sense of togetherness because the other person’s sacrificing for you. So, that, that does build your relationship. Um, but, but finding ways together and I’d say probably the biggest one for us, um, That, that means a lot to me and still does is that we kind of have a unwritten pact, um, that every night we work together, um, to get our daughter to bed and do whatever else we have to do.

And then we kind of crash at the same time in the bed. Um, so, it’s not like one person is overburdened trying to do something. So, it may be, you know, nine o’clock one night, it may be 10:30 another night or, or later, but, um, we keep working kind of together on what has to get done. Uh, but then we kind of crash in the bed together, um, usually try to watch a funny show.

That’s another big piece of de-stressing for us is, is watching a, uh, you know, one of the late night comedians who recorded from the night before. I can, we’re not staying up that late, but, um, or some kind of funny sitcom or something, um, that gets us laughing together. Um, and then we turn off the lights and say goodnight to each other.

And that’s kind of a routine and a rhythm for us that, uh, that just every night I know, uh, I get to go to bed with my, with my love and, and, um, get to just close the day out together. And then for us, that’s a way of de-stressing, um, all those things together.

Tonya: I like that. And that, and, and I like the example too.

It can be as simple as watching a show together. It doesn’t have to be. That you’re going out to a movie and getting a babysitter and trying to, to figure all those pieces into play as well. The, um, and I noticed when I was going through, you do have tips throughout the book, which is nice because you give a lot of, a lot of good things that, you know, The readers can pick and choose what they want to pull from that.

And, um, you had, you had some surprising ones in there that I never would’ve thought of. So, so,I thought, I thought it was, it was good. One of the things that I wanted to ask about, and we’ve talked about this before with some of our other interviews, but how important it is that we build a community around ourselves.

And, you know, I think those that are listening who are parents, they recognize how isolated you can feel sometimes. You may not feel that you can leave your child. If there’s a medical issue, or you may not feel like you can take your child with you, even as simply as going to the grocery store, because sometimes it’s just too hard to do those things.

So, our parents can feel isolated. How can we help them combat those feelings of loneliness? Any suggestions on that?

Kristin: Yeah, that that is a big one. And it’s so, so important for so many reasons. And especially if you live, um, further away from a major city, it’s probably even harder, uh, especially to find a church, um, that might have a special needs ministry or respite program or something like that.

Those are easier to find. Obviously, um. The closer you are to a larger, like we live 10 miles South of Nashville. And, um, I would say just keep trying, just keep trying to find support. Um, whether that’s, if you go to church and they don’t have a special needs ministry. We don’t like to ask a special needs parents for help.

And even when people offer a special needs parents, we don’t like to accept. But. We have to. That’s just basically what it boils down to, to lower our stress, to give us that emotional support, to make it possible for us to get out of the house together or have a moment together alone at home as a couple.

Um, we just, we have to. So, I would say If you feel alone, um, a lot of people don’t have the support of their family and maybe even friends they used to have, uh, or they’ve been, they’ve left a church, um, that happens a lot when they have a child with disabilities, I would say just keep trying, just keep asking for help because without that support, emotionally, practically, um, It’s almost impossible to thrive as a special needs parent

Tonya: When our children are first diagnosed, we’re just overwhelmed where, and there’s a lot to do.

So, I think it sneaks up on you that, that, that loneliness and isolation. Because you’re so busy keeping the appointments and you’re working with doctors, you have interaction with people, maybe not for yourself, but just in learning how, how you’re going to survive, and what those next steps are. So, maybe it’s been a few years, maybe they have a preschooler now.

And things are more at an even level. But as you say, maybe they don’t have those friends anymore because they haven’t been able to stay connected. Um, maybe they’ve, maybe they’ve not been able to go to church and they’ve been away for several years. Is it okay? Cause I’m thinking we may have someone listening who needs to know that they have permission to do this.

Is it okay for them to call up that friend again and try to reconnect? Is, is that something that you’ve seen? As you’ve ministered to other couples that they can, that it’s easy to reconnect. Or is, is it better to try to find totally new venues of where they’re going to find those, those connections?

Todd: I think really, it’s a, it’s a both-and thing.

Um, I think for sure to reach out to those, um, what we found and talking with people, and in our own experience, too, is that oftentimes those friends that have kind of become distant often that distance is created because they just don’t understand your situation. They don’t know how to be in your life.

And so, it’s easier to not connect than it is to ask those harder questions or then be you often find they’re afraid they’re going to hurt your feelings. If they ask about something, they’re going to say something wrong about your child or you and so they’re afraid to reach out oftentimes. So, if you take that 1st step, a lot of times that just opens the communication and can.

reinvigorate things with that relationship. Um, so, I’d say definitely, um, reaching out to maybe some people around you that have been close in the past. Um, I think there’s something that connects us all when we have something shared in our past that it becomes much easier to reconnect with just a little bit of effort.

Um, but also, uh, this is the both-and part is, you know, there’s a whole other community out there that you can connect with. Um, just thinking about going to therapies. Um, you’re sitting there with other parents in similar situations that may just be quiet because they’re exhausted or something else. But, um, if you can start up a conversation, um, that can be somebody you can text with or talk to when a, when a hard day happens, uh, to build those relationships.

Um, or there’s so many, um, other people out there that are struggling in similar ways that we don’t see each other. Uh, we don’t cross paths often because oftentimes we’re stuck at home. We’re not in the normal channels of, um, community events and, and sports and things like that. Um, but you know, for our daughter’s syndrome, there’s a whole society out there that, um, meets yearly.

Um, so, we on

Kristin: Facebook

Todd: and on Facebook. And so, we try to connect with some of those people and reach out and kind of get creative in that way and find other parents that are going through similar things. It may be the same disorder or disability, or it could be something totally different. Um, but you have that shared, um, experience of, of raising your child or helping your parent or your sibling.

Uh, and you can find them and build those relationships quickly because you have a shared core of what you’re going through.

Kristin: Even if your children have.

Todd: Um,

Kristin: and I will say I isolated for the first, probably, I don’t know, three years. And that almost didn’t turn out well, if you listen to my story and other podcasts.

Um, but it, it, it is scary. I will say it takes vulnerability. It takes energy, which special needs parents don’t have the thought of mustering up the courage and the energy to call or text someone. Um, even another special needs parent, it’s scary, but I would just encourage you, if you are listening, to do it. Pick up the phone, text. If you’re sitting at that therapy appointment and the other parent is quiet, they are probably going to be so glad if you strike up a conversation. They really are. Um, because connecting with. Other parents who are caregivers and sharing and, um, supporting one another actually rewires our brains as caregivers.

I’m a research nerd, and that was the coolest journal article I, I ever read. It really does. Um, so, I just encourage you to muster up that courage and energy. To connect with another parent.

Tonya: So, as you’re saying that I’m thinking back through the last two and a half years, and we’ve featured several different types of organizations.

So, if you’re listening and you have a child with Down syndrome, we’ve, we’ve covered Gigi’s Playhouse. You’ll see with that, that you have a huge group of other parents who completely understand where you, where you’re coming from and have advice to help you. We have even the Miracle League baseball program, any child that’s Who’s listening will be able to participate in that in some way, shape, or form.

And what I love about that type of environment, the parents sitting in the stands, that’s where I got the biggest value. My husband was coaching. My daughter was playing. My son was a buddy. I was sitting in the stands cheering on the team, but I met the other parents and not a single one of us had the same issue that our child was facing.

But we all understood therapy appointments. Well, all understood working on IEPs in school. We all understood trying to find friendships for our children. Where they could actually be their true authentic self and not kind of feel like they were on the sidelines. And so those conversations were great with my daughter, because of her visual impairment, we got involved with a group for the blind that were playing the sport of goalball.

And that became her favorite sport. It was a safe sport she could play. And as we’re sitting there, not saying anything because it’s a silent sport. The kids could hear the ball, but we were whispering, All of these ideas though, that we were having and what we had tried or, and adults would come to watch who were blind and they would then share with us what their journey had been.

And so a lot of what I was learning as a parent was from those interactions. So, parents listening, there’s a lot out there, but if you feel like you don’t know where to even start. Send us an email. We will get you connected with someone wherever you are. There’s, there is a way to get you in there. Even if it’s a Facebook group to get you started.

I did want to talk a little bit about team building. We talked earlier about how those shared stresses can kind of draw us together and trying to build that community and all, but you address in the book, some of the. Challenges, maybe we’d say there are stresses, but they’re also challenges. And some that I thought of, as I was thinking of that were parenting styles.

So, he and she may have different ways of, of how they’re going to do it. You actually give an example in, in, I think it was chapter 11, uh, which, which was really a cute, cute intro. And I could see that happening in every family around the country, but then also you might have treatment approaches. One may be all for trying the next research method and the other one may be hesitant to try even a supplement.

So, how do you navigate those differences and, and keep your relationship strong?

Kristin: And to throw in there, typical parenting, uh, styles, techniques, discipline, don’t work with the child who has special needs. So, you throw that into the mix and, you’ve got, you know, Uh, an environment that just is going to breed conflict in couples.

Tonya: And if you have more than one child, parenting for those two children is going to not, and in a typical family, they’re not going to be the same, but they’re going to be closer to being the same than they would if we’re talking about a child with extreme needs and a child with maybe other extreme needs.

A lot of our families do have multiple, um, issues that they’re facing with, with different children.

Kristin: It gets complicated. I’ll let you take that one.

Todd: it’s kind of, so, it’s, we struggled with that, and we hurt each other quite a few times. Um, and just really got mad at each other and, and, said some mean things and you don’t care about our child.

I think we’d said those phrases multiple times, the different things. Um, and we finally kind of came to this realization. We both love our child and that is the most important thing and realizing we may have different approaches. Um, so, we had to talk this out and literally say this out loud to each other.

I know that you are thinking the best of me and for the best of our child. And. I’m going to keep that as my foundation. And if I know that, um, I know you’re always to think in short, think the best of your partner, um, and that they are trying to do their best and their situation that they can. And that foundational piece helped us, um, tremendously to not get so frustrated at one another, to think back to that, that we may not agree, but your heart is there, you’re thinking the best.

Um, And I’m going to think the best of you and I’m not going to jump to conclusions that you don’t love our child. You don’t do any of this stuff. Um, and that, that helped, um, kind of get us in the, in the right direction to, to working together better.

Kristin: And I, I think 2 other main things, um, 1, if we can’t come to an agreement, um, like we could not come to an agreement, um, about a certain, uh, treatment or care need getting a professional opinion.

Because it’s, then it’s not you telling each other, but you’ve got someone who’s an expert in it and working with children and diagnosing this, um, a lot of times hearing it from that expert. Whichever parent is hesitant or, you know, not on the same page, um, will that will help them understand more and maybe get on the same page.

So, I would say definitely like, with behavioral and discipline, and you just can’t figure out how to parent your child, um. It is worth the time and, and the resources, if you, if you can at all possible, um, spend them this way to get a behavioral specialist, because that is the parenting piece is a huge stressor on the marriage.

Huge. Um, and that breeds a lot of conflict. The worse the behaviors of the child, the more stress on the marriage. Um, so, I would say definitely the professional, uh, help. The other thing is it’s, it’s, it is very unlikely that both parents are going to be caring for the child the same percentage of the time now.

Occasionally that happens. Uh, but typically there is a primary caregiver who takes the child to the therapies. The appointments are at home with the child with either behaviors or medical needs. Someone is taking that primary role most likely. Um, and that. that in general has been me, um, ever since the kids were young.

And, you know, and I was doing all this research and, and so concerned and trying to present it to Todd and, and he just dismissed it and yes, it was very hurtful. It did do a number on our marriage and that, that was, that was one of the moments I look back to that really we’ve had to heal from that.

Um, but what he has given me is learned that, okay, you are the one who goes to these appointments. You’re the one who’s doing the research talking to the doctors. I’m going to defer to you. And

Todd: I’m still going to stay engaged, but I will defer.

Kristin: Exactly. So, like, if there’s a medical care decision, you know, that needs to be made, I’ll kind of be like, okay, this is what’s going on.

What do you think? And we’ll talk about it, but at the same time, he’s going to trust me to have more experience in the knowledge to kind of defer to me to maybe make that decision while I gladly defer to him about finances and that’s one of the things that we talk about in the book is if, if we both did everything, we’d never get anything done.

Um, so, I would say definitely that thinking the best of one another. Entrusting your spouse, that they have the best interest for your child.

Tonya: Kristin, earlier you referred to mental health and we did, we talked a lot about this during your first interview, but I, um, I know a lot of our parents are going to be coming from a perspective of dealing with depression.

You mentioned the PTSD and I’m glad that you did because I don’t know that every parent calls it that, but we have a lot of parents who have that level of trauma that they’ve worked through and it’s not that they have a child that’s trying to harm them, but just the situation that they’re in can cause that level of stress.

So, some of them may have shame involved with trying to get help. Do you have advice for them beyond just calling a therapist, but how do they get past the hesitations they may have and to the point of being able to begin healing and to get the strength that they need?

Kristin: I think just realizing, first of all, if you are struggling with depression, anxiety, um, clinical levels or not, I mean, subclinical levels of, of trauma, you’re in the one in three of us, which I think is actually low.

It’s one, it’s about 33 percent that report of a special needs parents that actually report. that they’re struggling. So, I know there’s a lot more out there. Um, there is nothing wrong with you as a parent or a person. It is the chronic stress that you are under and the trauma that has caused this and the, and the chronic grief as well.

We, as special needs parents experience chronic grief, you combine all that and it is the perfect recipe for becoming depressed, which I was that I, I share about, um, and I did not seek help, uh, until I think Bethany was 16 months old, which was way too late, um, because I had already started experiencing the trauma, even during the pregnancy and delivery.

And then she was in the NICU and, and it doesn’t have to be medical trauma. Bye. It can be the behavioral, it can just be the effects of the daily chronic stress, but I would say that what finally, and Todd didn’t understand, and we talk about this in the book, he didn’t understand, he didn’t support me going for help, uh, for a lot of reasons.

Logistically, financially, he just, he just didn’t understand. And so your, your spouse may be saying, just think your way out of it. Just,

Todd: just suck it up.

Kristin: Do her bolus feed and her feeding tube stuff without getting emotionally sucked into La La Land, which it just, it was a stress response. So anyway, the thing that finally hit me was I had to not care about what other people thought I had to put myself first because if I didn’t, I wasn’t going to be there and be healthy.

to care for my child. And I think that’s what a lot of us moms, especially we have guilt. We have mom guilt. We feel like we’re not a good enough mom. We feel like we shouldn’t spend time on ourselves that ultimately in order for your child to be the healthiest and well-developed child, they can possibly be.

We have to be our healthiest and that’s what it boils down to is deciding I want, I want to be the best version of me for my family and I deserve to be healthy emotionally. And, um, I need to take this time to go care for myself, whether it’s just going to counseling, to grieve, to vent, to have somebody that you can talk to and not feel judged or, um, you know, afraid to talk to you.

So, I just want to encourage you, if you’re listening. And, um, you are struggling, especially if you are in serious depression. Um, don’t wait, don’t wait until things calm down. Don’t wait until, Oh, things won’t be as stressful next month because you won’t go, you know, um, you know, take a step today to go get that help.

Tonya: We’ve talked about some of the stresses. We’ve talked about some of the, just the strain that can be on a marriage, but I want to finish by talking about some joy. Because there is joy there. Parents are listening. If you’re in the middle of the stress, there is joy there. And I know Todd and Kristin well enough to know that they would also agree with that.

So, do you have any words of wisdom for our parents who are in the challenging times of how they can find joy and connection in their marriages?

Todd: Well, I think one thing to kind of realize is that joy doesn’t happen overnight. Um, you can’t just say I’m going to be joyful or anything else and will yourself into it.

Um, You, you have, it takes a sustained effort to work at it, to get to a point when you look back and you say, I’m a lot more joyful than I was. A month ago, a year ago, 10 years ago, and in different stages along the way. Um, so, that’s one of the biggest things. Um, but it’s finding joy in the little things.

Um, there’s all this stress of our daughter. Um, but there are some just absolutely beautiful moments where she just rocks our understanding of the world. Um, the things that we think are important or whatever, you know, she’s, Doesn’t care about, but yet she can bring out this joy of the, of the simplest things, you know, and when we see that in her, uh, and take a moment to stop in our own lives and just say, you know, all this other stuff doesn’t matter.

Um, let’s just have joy in the moment and enjoy this little thing, um, whether it’s, uh, looking at a flower outside or, um. Every time we see a, you know, a rose or other flower going by and smelling it. Um, you know, just yesterday, you know, we were a little bit stressed out about things and a lot going on right now in our lives and taxes do.

Um, but you know, it’s like, all right, Beth, let’s get in the car. We’re going to go to the dump and then we’re going to go to the tractor supply company. I had to return some stuff, but you know, what was it? The tractor supply was chickens. So, little baby chickens. Um, so, just to. Take that extra five minutes.

It took to put her in the car, um, and another five minutes to get her out of the car and, and, uh, into the store and, and everything, but, oh, she was just shaking, um, she was so excited. And to hold her hand while she was shaking, just anticipating the chickens coming, you know, walking across the parking lot and going inside, um, there’s moments like that, that, that are just.

You can’t, um, replace with anything else. There’s nothing else more joyful in life and those kinds of things. Um, or it’s working through with your spouse. Um, like we’ve said, when you get through something together and they’re there to lean upon and to listen and to. Be there to support you. Um, that’s, that’s one of the foundations of joy is, is knowing that long history of, I have someone that loves me and cares for me, and I’m going to be that to them and they are that to me.

Um, and that builds joy. Um, so, those are a couple of key ways of, doing this is really appreciate the little things and just. Continue to work with one another and value those times. Don’t just, uh, don’t just try to struggle through it. That’s what we did the first couple of years really was, it was more like a, something we had to bear through and that we kept hoping things are going to get better.

And we had to come to that realization that. This is the way life is, and we’ve either got to accept it and, and find a way to enjoy it and be a part of it, or we’re just going to feel worse and worse and degenerate into something that we’re not happy with, with ourselves,

Kristin: which we did. Yeah. But as he alluded to, we began to, um, realize that.

Joy is not about circumstances. It’s about choosing to live in the present day and being grateful. And some days it’s hard to find something to be grateful for. Maybe. Um, there were, there were years that if both of our children were not in the hospital and we were all home together, that’s all we need in life.

I mean, that’s still true, but there were years that literally trying to find something we were grateful for. Was we have a new morning together as a family. Bethany and Grace is smiling no matter what’s going on and just taking those special moments to celebrate and enjoy life together and just express gratitude.

Tonya: Well, we’re going to change gears here a little bit this season. I’m asking my guests to share some words of wisdom by completing some different statements. And because I was interviewing two people on this one, I thought it might be easier if I gave. It to them to decide which ones to say, because I wasn’t sure how I was going to direct it.

So, I sent Todd and Kristin a few statements for them to choose from. And, um, would you mind sharing those with us now?

Todd: Why don’t you go ahead? Oh, okay.

Kristin: Um, all right. We wish more people understood that raising children with disabilities has taught us the profound importance of. I feel like I kind of just said that, but I’ll elaborate just on living in the present day because, um, truly that is, that is where we are going to find meaning, um, and joy and purpose.

And, um, you know, we have to plan for the future, obviously, especially for our children. But at the point we’ve done all we can do to plan, Uh, it kind of becomes counterproductive and it starts to increase anxiety. The more we kind of spin our wheels. Um, so, I just, I would encourage people to just take a deep breath and look around at what’s going on in the moment and just be in the day.

Todd: Well, for couples facing the challenges of raising children with disabilities, the most important thing to remember about the relationship is that your relationship is the foundation of everything. That everything else that you do in life is going to flow out of that. So, if it’s cruddy, probably the rest of your life is going to be cruddy too.

So, put in the time and effort to make that relationship good. That even if that means, um, taking some time for yourself as a couple, um, you know, there’s times where we might’ve felt guilty, um, given our child a, little bit too much time. Preferred activity like a, uh, what do you call it? Tablet, um, and, and she kind of felt guilty about the screen time, but we need 30 minutes.

Um, that our child can sit on the couch, look at the tablet that we can just kind of. Have a time to watch a show together or to cook together or do something, um, and not feel guilty about that because your relationship is that foundation. You’re going to be better parents, you’re going to be better work in your workplace or whatever other environments you’re in.

If your relationship is healthy and growing.

Uh, then another one here, um, One tool that’s been the most effective in helping us navigate the stress of caregiving and strengthen our marriage is I mentioned it earlier, but it’s thinking the best of each other. Um, that, that really is one of the core things that we do for each other. Um, is I’m not going to talk down.

I’m not going to undermine or say, “why did you do that?” You know, I can’t believe you did that. What were you thinking? You know, those, those phrases have gone out of our, out of our vocabulary. Um, and instead it’s things like, “I don’t understand why you made that choice. Can you tell me more about it?” Um, or it’s other times saying, “you’re a really good mom. You really love our kids.” Um, and supporting one another in each of those ways, because I know that is your true heart and just reinforcing that in each other has been a huge tool for us.

Kristin: And the message of hope we want to leave listeners today with is your marriage is not doomed. The 80 percent divorce rate statistic isn’t true.

It is not founded on research. And as we spoke about earlier, by learning new skills and recommitting to your relationship and thinking the best of one another, You could actually build a deeper marriage relationship, a stronger marriage than you could ever have imagined.

Tonya: Excellent. That’s, that’s fantastic advice.

I appreciate you both taking the time to, to read through those for me. And, um, I know our listeners are going to really get a lot out of what you’ve shared with us. The thing I wanted to talk about now was we’ve, we’ve alluded to your book in and out of this whole interview. And I wanted to give you a chance to tell our viewers and our listeners about What you wanted to share about the book, but also how they can get their hands on it.

Kristin: Yeah. So, the first thing we want to share is we know you don’t have time to research one more thing and to read a book that’s wordy. Um, and it’s hard to get nuggets out of. So, the way we have designed our book, how to build a thriving marriage, as you care for children with disabilities, it’s very practical.

Um, As I said, I’m a research nerd. It is based on research, but you would not know it if we didn’t tell you because we boil it down to one simple phrase of do this and this is going to help strengthen your marriage and then we give some practical, practical ways to do that at the end of every chapter.

Um, there are. Uh, exercises that you can, um, pick one to do together to commit to strengthening that part of your marriage or building that skill. And, um, yeah, so you can, it’s not a book you just read through.

Todd: Yeah, we’ve kind of designed it as our thought, kind of in writing the whole thing was, um, what is this marriage survival guide?

Um, how do you survive a marriage when you’re raising children with disabilities? And so thinking about a wilderness trip, um, that you might have this book with you and you come upon this thing, a snake or a bush or, and you flip to the right page and say, all right, how do I deal with this situation?

That’s kind of how we think about our book. Is it, um. There’s some key skills that when you come across problems and you have things in your marriage, just flip to that chapter, um, read it. We’ve got some examples. We try to be storytellers and tell from our own experience because we’ve stumbled through a lot and we don’t want you to make those same mistakes

Kristin: and wander around like we did for years

Todd: and

Kristin: We have to build advanced skills as special needs parents.

It’s all special needs parents, not just married couples. We have to, we have to learn how to adapt. We have to build these special skills and it’s the same thing, uh, for married couples raising kids with disabilities. There’s some more skills you need. We learned that the hard way. Um, but we want to just, let’s say here they are.

This is how you can do it now. Go build them. Um, so yeah, so the book is available um, at most retailers, uh, Amazon, Target, Walmart, Barnes and Noble, um, Baker Books has it right now for 40 percent off in free shipping. If you pre-order, um, it releases May 14th. So, if you get your pre-order in, um, you’ll get it 40 percent off and, uh, the links, all the links are on our website, https://disabilityparenting.com. And, uh, we’re also on Instagram @disabilityparenting. So, please, uh, follow us, but also contact us and let us know if there’s some kind of question we can answer. It’s not on our website. We’d love to hear from listeners.

Todd: Which wants you to ask in your own mind, who do I know that has, that could benefit From a book like this, you know, I may not have a child with disabilities.

Um, if you’re listening, who could you get this for and give it to, uh, that’s really what we want this to be is, is something that you can give as a gift to somebody as well, um, to encourage them and their walk and their faith and just their struggles of every day.

Tonya: Well, for joining me today. I wish you well in the launch of this book, and I pray that the couples that get their hands on this, we’ll just find the guidance that they need and be able to, um, to use this tool as they need it. Wander through their own wilderness here. . .

Kristin: Thank you so much, Tonya. We enjoyed it.


Tonya: Don’t forget to sign up for the Water Prairie Newsletter for updates on what’s happening at Water Prairie, special promo codes available for our Etsy shop, and updates on our Amazon bookshelf. You can sign up at https://waterprairie.com/newsletter.

Thanks for joining me today, and I’ll see you next week.

Tonya Wollum

Tonya

Tonya Wollum is a disability advocate and host of the Water Prairie Chronicles podcast which connects special needs parents with resources to help them navigate parenting a child with a disability. She is the mother of 2 college-age children who have each grown up with a disability. That experience, along with a background in education, led her to create the Water Prairie Chronicles to help share what she has learned with parents of younger children to help them know how to advocate for their children.

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