Has your parenting experience gone differently than you thought it would? Us too.

Welcome to Part 2 of my conversation with my husband Scott, where the discussion turns to parenting kids with disabilities.

In this episode we discuss:

• [00:54] - Navigating the grief and life-changing impact of our child's diabetes diagnosis
• [13:19] - A father's perspective on our kids' PDA autistic burnout
• [18:05] - Maintaining a Relationship while parenting children with high support needs
• [32:21] - Processing an autism diagnosis

Get ready for a heartfelt dive into parenting kids with autism and type 1 diabetes, from a dad’s perspective.

Links:

• Full show notes: maybethiswillbethecure.com/blog/husband-part2
• FREE "New Years" Planning Workbook: https://megangodardcardon.myflodesk.com/newyearsplanning
• Instagram: @maybethiswillbethecure

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Disclaimer: The information shared in this podcast is for informational purposes only and is not a substitute for professional medical advice. Consult your physician before making any changes to your health plan. The host, Megan, is not a healthcare provider. Always seek guidance from a qualified health professional for your individual needs.

Welcome to part two of my conversation with my husband, Scott, where the discussion turns to parenting kids with disabilities. In part one, we discussed navigating mental illness and chronic health issues as a couple. If you missed it, you can head back to the last episode and check it out.

In this episode, you'll hear a dad's perspective on the grief and life changing impact of receiving our son's diabetes diagnosis, navigating our kids' pda autistic burnout, processing an autism diagnosis, and maintaining a relationship as a couple while parenting children with high support needs.

Welcome to Maybe This Will Be The Cure, a podcast where the wisdom of a healing journey, meets the warmth of shared experiences. Join as we explore the topics of healing, living with chronic conditions, chronic pain, neurodiversity, mental health, and parenting kids with disabilities. I'm your host, Megan.

So in a few months, we're coming up on our son's second diabetes anniversary. It will have been two years since the time when he was hospitalized in the ICU for several days and diagnosed with type one diabetes. And when I started therapy again after our son's diagnosis, I was explaining to her how I was feeling and what's going on, and she said, “It sounds like you're grieving.” And I think sometimes we don't realize that you can experience grief with things other than the loss of a loved one. And as I was doing the research for this episode, I came across multiple studies that researched this parental grief after their kids' diabetes diagnosis. And in the abstract of one, it said parents of children with type one diabetes may experience a grief reaction at diagnosis similar to that normally associated with bereavement. And this particular study talked about how long–that the grief is long lasting. They were interviewing parents of children with type one diabetes seven to ten years after diagnosis, and they found that while parents had adjusted to the new normal of diabetes management, most had not come to terms with the diagnosis. Throughout their child's life, they experienced waves of grief, and even in those interviews, seven to ten years later, some of them were upset.

So I know how I've processed and dealt with the grief of that. But I wanted to ask, what was the experience like for you, starting from our son's hospitalization and his diagnosis up until now?

So it's interesting, at the time, obviously before he was hospitalized, you had been concerned, and there was a lot going on at that time in our lives. And I feel like I was really busy with work. And so this goes once again to the thing of, like, a lot of life is just happening. And you're really concerned about this thing. And I think it kind of was just going over my head.

So there are two things that happened when he was hospitalized. So I remember being on the phone with my sister-in-law because my brother and sister-in-law are both nurse practitioners. And so the night you took him to the hospital, we had been on the phone with them just kind of before you took him to the hospital, just kind of like, what do we do? This is the situation. I remember you had to go take care of something in the house with our oldest while this was going on.

So I was on the phone with our sister-in-law, and I knew nothing about type one diabetes. So I remember being on the phone and she just said, she was starting to be like, oh, they've come such a long way. Before you would have to be in the hospital for one to two weeks, but now it might be a couple of days or so.

And I don't know what I thought was going to happen. I guess in my mind, I was like, oh, if it is diabetes, then he'll go to the hospital, like, they'll give him some insulin, then he'll come home. I don't know what I was thinking. So that was the first thing that hit was like, oh, she needs to pack a bag. Oh, they might be there for at least a couple of days.

Then in the hospital, I don't remember if it was the first day or the second day, because obviously we have two children. You took him to the hospital. I stayed with the youngest. Luckily, obviously, your mom came up the next evening. So we were trying to balance, like, you were obviously at the hospital. I'm with the youngest, making sure he's okay and just kind of getting through everything.

It was either the first or second day he was in the hospital, and they're teaching us all the math in order to give him insulin and just all the things to do. And I remember they were doing the shots, and I remember it hit me like, oh, this is never going to be the same. We'll never go back to how it was before.

And once again, obviously, I didn't know enough about diabetes going in, so there was a learning curve. But I remember it hitting me. It's just one of those things where it's like, oh, it will never be the same.

And obviously it hasn't been the same. And things have gotten better because of certain technologies. We're not doing the shots anymore or anything like that. I remember that was the first thought that hit me of, like, I did not know what this was. It's never going to be the same, for him first, and then for us.

As we've gotten further from it, its one of those things, it's just a part of life now. That's what's so interesting, is like, the further we get from that experience, it's just more, I can't remember what was like before.

Oh, I remember. No carb counting, measuring food.

But that's kind of the way I feel like that's just always been the way my mind is. I don't remember what it was like before we moved to Vegas for law school. I don't remember what Vegas was like. Like, I just remember what things are like right now.

You live in the moment. I love that.

I just think now it's one of those things where it's like you're constantly learning. You're constantly trying to do the best you can do. There are definitely moments. It hit you different than it hit me. You were in the hospital with him initially. So I think there are things about the hospital. There are things that hit you. You'll just have a moment where it hits you or reminds you of being there.

Yeah, I get hit with waves of grief or flashbacks.

It doesn't hit me like that, obviously, once again. And these are the things you look back on. I was early in my career, I just passed the bar a few months earlier, so I was waking up at like four in the morning and going to work and then coming to the hospital at like ten or eleven, coming home, making sure that our youngest was doing fine. He was just kind of in his own world. And then spending the rest of the day at the hospital. And I was just kind of like, my mind was in like 70 different places and obviously there was a whole bunch of other stuff that was starting to happen. But that whole period of time was such a whirlwind.

So I think now I look at it and obviously it's changed our lives in so many ways. There's a sadness. I think the sadness is like, when he gets sad, because ultimately his life is the one that's ultimately affected by it. And so it's more the sadness of, like, I want both of our children to have all the things they want out of life. So I think that's been the biggest thing that brings me the biggest sadness–when he gets sad about it. Then there's a lot of those, like, this is unfair for him type feelings, but it's such a big part of our lives.

And like I said, I obviously remember what it was like to not have diabetes in our lives. But it has been almost a couple of years, and it has been so, because it's so ingrained, it's not just some little thing that just happens to be a thing that's being dealt with.

It's become the new normal, and it is a part of every minute of every day. How has it been working together to manage his–you know, shortly after his diagnosis, you took a job in Arizona so he could be closer to family. And you work from home now. So a lot of times we're tag-teaming the management of diabetes. What's your experience been with that?

So I think it's such a learning curve, right, like dealing with diabetes. I think at first it was really hard because he–and some of this has to do with the fact that because of technological advancements that we do have with diabetes, so, like, devices–but when he was first diagnosed, for the first month, it's like, oh, you're checking. You got to check his blood sugar. Here's when you do it, you got to give shots. Then it's like, oh, he has a CGM. Still doing shots. Then it's like, oh, he has this omnipod. And so now he has this pump system, and he has something monitoring his blood sugar. Plus, yes, we were moving.

I think, you know, the first couple months we were still in Las Vegas. I was going to an office every day. And as things changed, obviously the way you deal with diabetes changes. So this is another one where communication is totally key. Because while, yeah, we're both at home, we're both working, and it's become such a part of our lives, it's gotten so much better–but it was a difficult transition of, like, it is a full time job to manage diabetes. Especially for someone who's at an age where managing diabetes is just not, they're not there yet to be able to do that. So at times there's a lot of pressure felt because it's like, this is my child's health. And just a lot of stressful nights, obviously, of lows and highs and all those things with blood sugar.

But I do think like with everything, communicating just about every little thing. It's just like, all the things you don't think about, like, what has he eaten? And depending on what he eats, how is his blood sugar going to react? Right. Just keeping each other informed, and it can be difficult and it can be exhausting. Right. So there's a lot of other things going on in life as well. You're trying to balance. But I think we've gotten so much better and there's still obviously, I think, so much more for us to learn and to get better at. But I think the better we've gotten with communicating with each other, I think it's been going a lot better.

Yeah, I would agree. So both of our boys are autistic with a PDA profile. PDA stands for pathological demand avoidance. And one feature of PDA is a sensitive threat response. After our son's diabetes diagnosis, you know, we had a lot going on and then we moved on top of that and both our boys went into PDA autistic burnout, which basically means they were pushed past their window of tolerance over and over and over again and basically kind of get stuck in fight, flight, freeze. We were basically just in survival mode. It was a really difficult period for us. I'd say they're in recovery now. Still some things lingering, but I think we're out of the worst of it. Knock on wood. I just wanted to ask, what was that experience like for you?

Man, when we first moved here, it's funny, at the time, we didn't really know what was going on.

This was before they were diagnosed.

Yeah. So we didn't really know what was going on. I can't remember if you had just started learning about PDA or if that was later.

I suspected it at that point. I had been learning about it for a while.

But once again, it's just one of those things where it's always been a part of our lives. So it was really crazy because there was so much going on that had happened so fast. So two months before we moved is when our oldest was diagnosed with type one diabetes. Then I accepted a new job and we just had to move. So it was one of those things where in a two month time period, our lives are completely changed because of this diagnosis. Plus, both of our boys have this thing that we don't know what it is, at the time. We knew something was going on, we just didn't know exactly what.

And, yeah, we were moving back home. So I think there was a lot of optimism as well that we'll be closer to friends and family. But it's funny, I think back to when we first moved to Arizona again, and it's like I kept telling friends, you know, as soon as we get settled, like, we'll see you. And I think I had this whole picture of, oh, we're back home. We're by so many more friends and family. We both work from home. It's going to be so great, we’ll be able to reconnect with people and have more time for friends and things like that. But it's like there's really never a settling point. Life is just so crazy and everything happened so fast, and we kind of just had to make it happen.

Getting through the initial part, like getting down here, was just kind of one of those things, like, you just have to push through it. I think what's hard is once you push through, you can control something, like moving. So no matter how crazy it was, we had some control over the situation. We found a place to live. We figured out how we were going to move everything and when that was going to happen. I think the hardest part about something like their PDA diagnosis is like, that is not something we can control. It's out of our control. So there's no deadline date, as opposed to when we moved where it was like, well, this is the day we're going to move. There was no like, okay, and we're here and it's crazy, but this is the day where the craziness stops and life just gets back to normal and calms down.

We don't have control of their healing when they would come out of burnout.

There's no point of, things are settled in, now we'll go do all of this stuff, right? But looking back, it was never that way. It was just always a part of life. So, yeah, that period of time was especially hard because there was just so much that happened at once. And some of those things you can control, some of them you can't. And so I just think of all the things that we had to juggle those first few months and just how crazy it was.

Yeah, we kept waiting for things to calm down. And you're right, I would say things are better now than they were, but there's this underlying thing that we've been dealing with our whole parenting experience. Long before we had an official diagnosis for both boys, parenting was always very challenging and draining, and we never got many breaks. It's harder now after–during burnout, it was especially intense–but it was always hard leaving them with other people. And so we're 13 years into marriage and we have not had a couple's trip together since our kids have been alive. And even dates are really challenging to get in because with the nervous system disability piece of it, unlike anxiety, where I think you can eventually develop a tolerance. So when we first just thought we were dealing with–my oldest was diagnosed with separation anxiety when he was probably about six. And so the mindset with that is, oh, with continual exposures, you develop this tolerance, things become easier. Butt they never got easier, and we could never get there to build up that tolerance. And now that we have the piece of PDA, which is essentially a nervous system disability, it makes sense why he only feels safe with us, and so it is hard to leave him. So there hasn't been a lot of breaks with parenting, and there's been challenges that I think aren't typical. How do you think we've been able to manage or keep our relationship going, even when we don't get a ton of time by ourselves?

So it probably helps that we both work from home so we have plenty of opportunities to see each other and take advantage of those five minutes here, ten minutes there. We can just kind of catch up on life. There are a lot of times that we will just wake up early and just spend some time together.

I even remember when you were working at your other job where you would get there really early, stay late. And we started doing where we would wake up early in the morning together, while you were drinking your protein shake, and we would just spend a few minutes of time just together.

Yeah. And I started calling you, like, in the middle of the day at lunch. I would call you and we would talk. And so I just think it's one of those things where it's like, find as much time to just talk about what's going on.

We go through phases. We always have a show that we're trying to watch. It used to be a lot easier to watch shows, but, yeah, I just think just finding little moments to just make time for each other.

But like I said, because we both work from home, I think it's in some ways, obviously so much easier, but in some ways, that structure is gone. So you kind of just kind of, sometimes it's easy to get lost in the day to day stuff of just things are always busy. I have work, you have work. Managing diabetes, like I've said, is a full time job. Helping them get through what they're going through is also a full time job. So just a lot of stuff can happen in a day. And you just realize, like, holy cow, it's nine at night. And you're like, I don't even remember what I did today.

So I think the important thing is just being intentional, trying to be intentional. I think we do a good job trying to be intentional, but I think everybody can relate to–life just happens, and sometimes the day just gets away from you. But, yeah, I just think taking the time, thinking to yourself, is this something that needs to be happening right now? Or can I take a few minutes to just spend time with Megan and I can get back to what I was doing in a few minutes and whatnot. So I think trying to be intentional is the only way. It's never happening on accident.

We haven't been able to do a couple's vacation, just the two of us, but we do carve out time for each other in the day to day. Even if it's like they're both watching a show, now we're going to spend some time together.

And we're both aware of, there's also plenty of couples, we're very privileged in the fact that we both work from home and we can spend time with our family all the time. And there's plenty of people out there who just don't ever see each other because they're working multiple jobs and they're trying to scrape by. So there's also having the awareness of, for some people, that's a reality. At least we're with each other and get to see each other.

I keep talking about communication, but that really is the most important thing, is communicating with each other and just kind of telling each other how we feel. But once again, it's such a part of our normal life that you kind of adapt and adjust. Right? So diabetes was a thing that happened, right? It wasn't always there. It wasn't like he always had diabetes. And it's like, oh, man, he has all these symptoms. It's something that happened. But with the PDA stuff, it's like they've always been the way they've been.

Yeah.

So it's always been, some things have always been a struggle. And so I think it's just one of those things where we had to constantly adapt and adjust how we did things in our relationship, because it was a thing that was always looming. It wasn't like we were like, oh, back when we used to be able to do stuff all the time.

And so I just think, kind of communicating, because you can get frustrated and it can be frustrating, it can be hard at times, but, like, communicating with each other and just trying. That's all you can do is just try the best you can and just hope for the best. And I think as we've gotten to understand more about what they're going through, then it doesn't always make it easier, doesn't make it easy, but you can develop an empathy for them. But you can develop an empathy for each other, of like, yeah, some days are going to be more frustrating than others and just understanding where the other person is coming from and that there's always a lot of emotions going on in the house, and there's things that have to get done. And so just kind of balancing being able to find time here or there, even if it's just for a couple of minutes, try to have a conversation with each other. And I think, obviously, some days go better than others, but I think trying to spend as much time as we can, no matter how small that amount of time is.

Yeah. And I also wanted to bring up the–I think when you're parenting kids with high support needs, each person has a lot on their plate, and it can feel heavy. One term that you'll hear in the PDA space is preferred parent. Generally, PDA kids have one person that's, like, the safest of the safe nervous system for them, and that's been me. And so there is a unique weight in that. In it is really hard for me to leave the house where it's easier for Scott to leave. I remember, you know, venting to you multiple times about that, and you've handled it really well. I feel like you've been good not to get offended, or at least you don't act offended. And then doing the things that you can do to support me carrying that weight.

I just think even a few months ago when, I don't even know if it was that long, but I had talked to you about it, and you started sleeping in our son's room, the youngest. And I've noticed even a shift with him feeling more comfortable with you and allowing you to do things that he used to only want me to do. So I just appreciate how you've been able to do that. And I don't know if you could speak to that–on how do you one support the parent that's taking on a lot of those caregiving duties? And then also, how are you not offended when you're already doing a ton and then I come to you with this weight, that's, and venting about it.

I think part of it is, like, recognizing that both of us have a lot on our plate. So recognizing that, even if I were like, I'm really offended by you coming to me with this weight that you're feeling, I don't know what good–there's, like, no argument that could be made to be like, you actually don't have this weight. So it's like one of those things where it's just kind of like, there are things that are unique to the weight you're feeling. And I'm here every day. And I'm seeing it. So I think that's part of it, because I'm seeing it. It's like a thing that even if you didn't say it, it's something that I have observed.

A lot of it is just like, things can either be made better or things can be made worse. Even if I'm feeling defensive or offended, that's probably going to take the path of making things worse and not better. And so it's the thing where you kind of have to set those emotions aside because there is a reality. Like, those emotions are always initial no matter what, to get defensive or to be offended by something. Because a lot of the times, it's like, especially with this, there is something real going on. There's a lot of autonomy I have that you don't have, and that autonomy, simple little things that maybe a lot of people just would take for granted.

There's no reason to fight or get upset about this. And someone's coming to you vulnerable about how they're feeling about something. I can take their point seriously, or I can just be like, oh, what are you trying to say about me? When you're not trying to say anything about me, you're trying to say something about you, in this particular case. None of this is easy. I don't want it to come off as like, you come to me, you're like, I'm feeling this weight of all these things. Can we do something differently? It's not like, oh, yes, of course. Oh, it's so seamless. Everything works out. It's like everything is trial and error. There is resistance because whatever inconveniences me is like, get that out of here. Doesn't matter what it is. A lot of my personality is like, I'm rolling my eyes a lot. I'm resisting at every corner to do anything. I'm doing these things, but I hardly come at things with a happy tone–like, I want to do anything that I'm doing. So I don't want to make it sound like, oh, this is like the easiest, everything is so easy. Fighting about stuff just makes things harder. But I just think, especially with this stuff, because I'm around it, it's like, I understand what's going on. You don't have to explain a whole lot of like, well, let me tell you what's going on with them.

So then let me ask you this. Our boys, they always have been who they are. And for several years, we realized that something was going on, something was different, but we didn't get diagnoses (diagnosis-es? I don't know) until this past year. And I'm curious, how did you process once we got official diagnosis for both boys?

Once again, nothing ever in the moment, mostly because it's like we had suspected it. So it wasn't like, when we had talked to the psychologist about what was going on, and they had given us official, they had given us the reports and whatnot. It wasn't like, oh, my gosh. It was kind of like, well, I would have been more shocked had they been like, actually, it's not any of this.

So it didn't affect me in the moment, oh, our lives are changed. Like, our lives are no different. Actually, nothing actually changed. Just like there's an official name that we can be–like somebody with expertise says it's this, and it's not just we read something on the Internet and we've self diagnosed this thing. So there's a credibility and validation.

But I think the way I feel the impact of things is the day to day things as I see them. So it is things like, as we make future plans, maybe with finances or whatnot, and then you think about what this diagnosis might mean for their future and how that affects how we look at our future and plans we have and things like that. Not just in a sense of financials, but just a sense of what maybe you thought their future would be or what you thought being a parent would be to them, and having this family. You kind of learn to put those things aside.

And maybe in the moment, I'm not feeling impacted by it. I think maybe because the day to day is just always so busy. I don't reflect. I think you're really good at reflecting on life. I just don't think I do it at all, really. And then it might hit me in certain moments, but I don't think I reflect on what setting aside some of those things means. And then there are little moments where it's like, okay, yeah, maybe they won't play sports, or maybe they won't. The way I grew up is not going to be the way like they grew up. And that's not necessarily a bad thing or a good thing. It's just a thing, right. And part of that is the expectations we set. We set up expectations and then it's like, well, people have their own lives to live.

So I think for me, the impacts come randomly, but in the moment, it's more of a validation thing. And I think you felt that a ton. I don't know if I, I probably wouldn't ever be like, oh, they're autistic, they're on the spectrum, if not for somebody officially being like they are. And that's more, I think, just out of respect, even if I suspected it. Even if I researched it enough to be like they probably are, it's like, out of respect for people who are. I'm not going to go around touting.

Which is tough because I do know that a lot of people don't have access. I mean, for years we didn't have access to evaluations, they can be very expensive. And so I do understand there's this push in the autism world of self diagnosing and allowing that to be valid, at a level. I can understand the validity of that. But I can see what you're saying, for you, wanting that someone who has trained to be able to make that diagnosis, give that stamp of credibility.

Sure. But at the same time, I just always look at things as like, how does this change? Does this change anything? And in that moment, it didn't change anything. We got those reports and I think I got up and went back to working and you had to sit with it. But most of my life is like, oh, big thing happened, whatever. But I just sat down and someone asked me, make a plate of nachos. And it's like those things impact my life. Let's talk about how those things impact my life. It's like I just sat down. I was up, I was in the kitchen and I know you wanted nachos when I was up, but then 10 seconds later after I sat down, now you want a plate of nachos. Those are the things that impact my life.

Other PDA parents would understand. A big thing with accommodating PDA children is making food for them and bringing it to them wherever they are. And it feels constant. They don't eat on a normal schedule. And so, yeah, asking for plates of nachos, right when you sit down.

I was trying to make the point. I make it sound like I'm not affected by anything. It's just anything that inconvenience me affects my life. Anything that doesn't inconvenience me is just kind of like, okay, whatever. So if you're driving too slow in the lane, that is something that we need to talk about. I might voice my opinion, but what are you going to do?

Well, yeah, it is funny, I think because we had already suspected things for so long and we had already been adjusting and living different because we had to. So, yeah, when we get the diagnosis, we had already been adjusting as parents because we were parenting the kids that we had. But for me, I think, yeah, it was that validation. And the emotions hit me.

What was interesting with you, is seeing how, I see what you're saying–it's in the situations. So we're doing financial planning, and you're getting stressed about our retirement accounts in the future. And I'm like, why? We're so young. I don't understand this stress, but I think because you process things differently, so you're seeing ahead. Like, we don't know how independent that they're going to be, and we need to be prepared for that. And so it's in those moments where I think maybe you're affected more.

With all the things that we've gone through, I feel really grateful for our relationship. I am so grateful that I've had you to lean on through all the stuff that we go through. I'm grateful that we're able to communicate well with each other. I think that's been really pivotal. Is there anything that you wanted to say before we wrap things up?

I've said all that I need to say and more.

I just want to thank you for being the first guest on my podcast and for supporting me with this new hobby, that is taking up all of my time, at this point. And I really love you, and I'm so grateful for you.

Love you, too.

Thanks for joining us today. Where dreams are nurtured, challenges are met with resilience, and every tiny step forward is a victory. Hit subscribe so you can easily find new episodes and join this community, because maybe this will be the cure. Close.