Hodges Heroes
Making the Most of our Mess. Parents of a special needs child discuss setbacks and success along the journey.
Hodges Heroes
Marriage Stress with Special Needs Parenting
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Doug and Janan discuss some of the unique stressors that parenting a child with special needs brings into a marriage. All marriages are stressful, but if you are raising a child with specialized needs, hopefully this will be an encouragement to you.
Hello and welcome to the latest episode of the Making the Most of Our Mess podcast here with the Hodges Heroes. And today we are talking about something that we quite honestly haven't discussed with one another. Could wind up being an argument between the two of us. So if you don't see a lot of episodes after this one, just know that that's what this happened. But we wanted to talk today a little bit about the stress that relationships face when you are parenting a special needs child. Now, I am sure that those who are parenting children without special needs also have stress. And I can't really speak to what that kind of thing looks like, but I can tell you firsthand what kind of stressors come from parenting a child with special needs. So, Janae, what would you say is like the biggest um hurdle, obstacle, the biggest thing specifically for special needs as it relates to that when it comes to our marriage relationship?
SPEAKER_02So I know everybody's child is different or family member with special needs, but ours in particular, our son feeds off of emotions, really happy emotions, really what he perceives sad or mad emotions. And I will say if anyone who knows me knows that I am like energetic, I'm like naturally caffeinated, right? So when I come home, it's like I have to almost be so very even-tempered and very talk very slowly and talk very calmly.
SPEAKER_00So for me, I'll give you an example of what this looks like. We've been talking in the we'll be in the car as a family, going down the road and we're talking. And Janine will just get excited about whatever topic that she's talking about. And as she gets excited, I have to very gently tell her, like, watch your tone, be careful, calm down, because he he has a hard time understanding the difference between excited, happy versus excited, angry.
SPEAKER_01Right.
SPEAKER_00And so it's like it's all bunched into one like like collection of emotions for him.
SPEAKER_01Yeah.
SPEAKER_00And the only way he knows how to respond is to whatever he absorbs at like 10%, he pushes back out at like 100%. And so he can get very volatile, very angry, very quick, even though she's telling me something really great that happened at work today, and she's really excited about and wants to just celebrate it and be happy about it. And then when I say, Hey, watch your tone, calm down, shh, don't, you know, then that irritates her and that flips the script for her. Like, how dare you tell me to calm me down? Then it's like, really, watch your tone now because you're angry. And in the meantime, he's kind of ramping up a little bit.
SPEAKER_02And he'll be like, Dad, don't talk to mom like that, even though your tone of voice is not mean, I might not like it. But anyhow, so that's kind of like our example. So I think the biggest hurdle for me is not being able to have a conversation with you, just us completely like, you know, back and forth. Kind of like I do at work. I work in education, I work with a lot of women, and we're constantly like talking or um rebuttying, and it's just very back and forth. I cannot do that at home. Well, I can, but I don't want to deal with the fallout. So unfortunately, I I referenced in a previous podcast, we haven't been able to do a whole lot of our podcast episodes because we sound emotional, right?
SPEAKER_00Even just the level of intensity she's expressing right now is right on the threshold of being able to create problems.
SPEAKER_02But he's not here right now. So that's why we're able to do this. So I think that's been the challenging thing because I mean, the other night, Doug, we had to discuss some things like regarding his our son's care. And so we really, I was frustrated with this whole bureaucracy and system. And I had spent four to five hours on Monday trying to call and email and get everything, and I was hitting a brick wall. And so you said to me, Hey, why don't we go out on a date? Which the irony is, is we're going out on a date and we're tired and we're worn out and we're talking about getting resources for our child, but call it whatever you want. We were able to have a conversation and do it with emotions, not screaming or being angry with each other, but just like, I'm so frustrated. I don't know what else to do with this situation. So to me, the hardest thing is not being able to just be really who I am because this is who I am. I'm animated.
SPEAKER_00That part's pretty easy for me because I'm I'm like Droopy Dog. Like I can have my happiest day of my life.
SPEAKER_02They don't know who Droopy Dog is because you're too old.
SPEAKER_00Yeah, go go Google that. I think it's old Warner Brother. I didn't like that cartoon.
SPEAKER_02It was awful. Because he was so droopy.
SPEAKER_00He never showed emotion. He was super happy. This is the happiest day of my life. And then he got really mad. Like, I'm so very angry and frustrated. Like he he it it was always the same for him. But I will tell you the thing for me that is probably the most challenging is the complete and total lack of a break. Uh that we we we have had to take breaks independently of one another.
SPEAKER_01Yeah.
SPEAKER_00And I will tell you, even for me, when I take a break and leave the two of them together, I know that it's going to be a level, it has the potential to have a level of chaos when I return.
SPEAKER_01Yeah.
SPEAKER_00Because uh he's challenging to be able to deal with, and because of some of the just the personality conflicts, uh, that there are times when he comes at me a little bit more than he comes at her. There's times when he comes at her a little bit more than me. And and so taking a break for me is is is just always a challenge point because it it I have to pay for it. Yeah, you know, either I gotta pick up pieces when I come home or you know, something along those lines, or even if I do take a break, my phone's blowing up the whole time. And you know, and and I have always desired to be the parent that the father that always answers the call when their kids when their kids call me. Uh however, I have literally had to block his number sometimes when I've left because the incessant amount of times that he will call me.
SPEAKER_01Right.
SPEAKER_00Uh to give you an example, we went away for our anniversary a couple years ago. Uh it was a big one.
SPEAKER_02It was number 20.
SPEAKER_0020 or 23, or whatever it was.
SPEAKER_02It was 20. We just did 23, babe.
SPEAKER_00Uh whatever it was. Um, it's been a long time. Whatever it was.
SPEAKER_02It's been a wonderful long time.
SPEAKER_00Glorious, glorious time. The uh, like I said, we're gonna start a fight on this episode. Uh we dropped him off on a Thursday at a family member's house that was gonna take care of him. He was doing better at that point, uh, picked him up on a Sunday afternoon between the two of us in that what, however many hours that is, I think it was 87 times that he called it. Sometimes it was uh, hey, I don't know how to get the water hot.
unknownRight.
SPEAKER_00All right, well, ask your aunt who lives at the house where you're at, how to turn the faucet.
SPEAKER_02But unbeknownst, but unbeknownst to the family member he was staying with, he didn't ask them because again, I think it's also a comfort level with us. Oh, let me just call mom, let me just call dad. Well, we can't have a break. So, yeah.
SPEAKER_00So the lack of break is a challenge, and particularly the lack of break that we get to take together is a challenge.
SPEAKER_02Yeah. I do want to say real quick on what you were saying about the phone calls and excuse me, that it's challenging when you get away because he'll call you. Sometimes it happens when I'm away, but if our son doesn't like what we say, the the one parent he's with at the time, that's typically when he's calling the other parent. Well, dad won't let me do this. Well, mom said this.
SPEAKER_00Making me get a shower because I went on a two-hour bike ride and I'm sweaty.
SPEAKER_02Right. It's like that type of stuff that honestly it's it's a bit irrational to be calling that much because you just don't like that one parent. And trust me, there have been times where people are like, well, just take the phone away. We have, we do, there's safeguards.
SPEAKER_00Right. So it's just there's always this sort of balancing act.
SPEAKER_02Uh what you were saying, yes, it is challenging for us to go for places for long periods of time. People are like, Oh, you just need to get away. What you don't see in a lot of special needs families, the if if the caregivers go away, away from the person they are caregiving for, there are hours and days worth of plans and weeks to get to that point. And to be honest, I kind of equate it to like, if you're a teacher and you are going to be out and you have to write substitute plans, think about that. Like when you're sick and you really don't even want to do that, but you put all this work in, but it's like times a hundred because you have to have phone numbers and who to call in case he gets in a certain mood. And let's let the neighbors know that a new car is there. It is, it's a lot of work. And not that it's not worth it, but sometimes the payoff having to come back to potentially a chaos bomb.
SPEAKER_00A lot of pieces that sometimes get picked up.
SPEAKER_02Right. And not just for him, but also for maybe a family member that's caring for him or you know, other people who might be living in the home. So go ahead, Doug.
SPEAKER_00So that for me is one of the biggest challenges, is that there just there seems to be no no break in the in the day-to-day. And and I know we've alluded to this some in our graduation episode, is that there's just no long-term hope that this is going, he he's not gonna move away and get married and get out on his own and support himself independently of us. Uh, we've we very much so are wrestling with the fact that this is our life moving forward and trying to find some some better solutions to be able to make the most of this mess that we're in. Right. Uh, but that part's really challenging for me.
SPEAKER_02Right. And and honestly, like we do have again some irons in the fire of getting some level of respite, but the respite that we are wanting is not exactly what will be provided in the way that we would like. So we're trying to just figure out what we can do. Doug, keep talking for a minute because I'm getting a phone call from him really quickly. Keep going, Doug. He is okay. He's riding his bike, but he's hot and sweaty and wants us to come pick him up, even though he wanted to ride his bike. So I told him to ride a little bit more and then we'll check on him. But he did this the other day and he was like right around the corner. So we're okay.
SPEAKER_00On cue, now he's calling me because he didn't like the answer that he got from mom to be able to uh, you know, more than likely wants me to come pick him up now.
SPEAKER_02Right. So that's an example.
SPEAKER_00Like we couldn't have planned that any better than what we were talking about.
SPEAKER_02So I don't know what you just said, Doug. Um, so I'm not exactly sure where we're moving forward to the next point.
SPEAKER_00Let me, because we're limited now at this point, because he's on his way home and we'll be here soon. Uh what has been the thing? We've been married like 23 years now.
SPEAKER_02Yes, we just celebrated last month.
SPEAKER_00Uh what has allowed us to maintain a marriage relationship? What have been what would you say in the midst of all the stress and the struggle? You know, we've talked about two of them. There are clearly a ton more. Uh, but what are some things that you would say has kept us married the past 23 years?
SPEAKER_02Honestly, I mean, I'm gonna go back to when like right when we started dating. I mean, I think foundationally, I mean, I made a list of the type of guy I wanted to marry, and mine had lots of things. And I think you made a list which only had three things, which is fine, cool, great. Um, but I will say that I think foundationally we are on the same page. We have um similar beliefs, similar goals. And quite honestly, we have been through so many challenges and not just with our special needs child, but losing loved ones, tragedies. We have moved how many times? Four, three, I don't know. We've had major moves and we haven't lived near family, not on purpose, but that's just where we believe that we needed to go at that stage in our life. And we've just been through it. And quite honestly, we do know a lot of special needs families who have been through divorces and breakups and they're doing it on their own or splitting custody. And I know how challenging that must be, but I'm thankful that we've been able to come through it. It has not been easy. And honestly, like there are days where most days where I'm done, either I've come home from work and we've done the family thing for dinner, and everybody's in a bad space or bad mood, and one kid goes to his room and the other kid goes to his room, and you sit on the couch and you put in what do they call your noise cancellation in ear monitors, in ear monitors, like and that's you have those connected to our TV so the noise doesn't set off the child with special needs. And I go in our bedroom and I binge dateline or like Netflix series. I mean, you know, no, anyhow. We won't even get into it.
SPEAKER_00We we follow the same beliefs, we serve the same God, and we have we've been doing that before we met each other.
SPEAKER_01Right.
SPEAKER_00Uh, but as as far as personalities and people go, we are about as opposite as you can get.
SPEAKER_02Amen and amen. Hallelujah.
SPEAKER_00And the things that she is really talented and good at, I am not. The things that I'm really talented and good at, she doesn't even understand what it is.
SPEAKER_02Like, for instance, he's really good with tech. And how many emails did you delete from my phone the other day?
SPEAKER_00I didn't delete them. I just marked your 27,000 emails as red so that you could then find some of the stuff that we're getting from Social Security and all these other places, they'd actually show up and you wouldn't miss them.
SPEAKER_02My phone, like, I couldn't even take any pictures because I have so many scenes.
SPEAKER_00We're using our son's phone right now to be able to record this because she has no more data left on her phone.
SPEAKER_02So that's been a little bit of source of contention, but it's fine. It's everything's great, right? So I I just are different.
SPEAKER_00And one of the things we have to be able to recognize, and I've had this conversation in marriage therapy a good bit, is marriage boils down to two things. Either your spouse is for you or your spouse is against you. Right. And and we've had to be able to choose, especially in the times when we don't particularly understand what our spouse is trying, what what each of us are trying to do, and maybe we don't even like what they're trying to do, right? But to recognize that is my spouse for me or is my spouse against me.
SPEAKER_02And I'm gonna say many years early in our our early marriage, like I'm a college athlete. I taught high school and middle school, physical education, sports, I'm an athletic director. I'm a very competitive person fundamentally. Like I want to win, like I want to be the best. And quite honestly, it's very hard for me to turn that off. And I've had to figure out other ways to channel that. Um, and that is one thing earlier in our marriage, Doug, it was almost like I thought you were competing against me, but I know now that you weren't. Remember the pork chop story from like when we were first married?
SPEAKER_00Yeah, we we could first get married, and and we come from very traditional families with very the ideas that there's very traditional roles. Traditional roles that you know her mom always cooked, her dad, the only time I went in the kitchen, was to clean it up after every mom cooked. Uh my dad has in later years had to learn how to cook, but I don't ever remember my dad cooking anything as a child. But I hung out with my grandparents a lot. And my grandmother, I don't think she sat out one day to teach me how to cook. I just hung out in the kitchen and before long I picked up how to cook. And so we had been married, I don't know, not even a year or something.
SPEAKER_02No, it was within a few months. We were in our apartment, our very first apartment.
SPEAKER_00And we were gonna go see a movie, and I said, Hey, I'm gonna go cook some dinner real quick. I'll I'll fry up some of these pork chops that we got the other day, and and then we'll just eat here to save us a little bit of money. Right.
SPEAKER_02On our George Foreman grill, right? Oh no, or did you do that or did you do the pan?
SPEAKER_00I straight up fried on an old school southern style.
SPEAKER_02Because you were southern iron skillet. Deep fried, man.
SPEAKER_00And Janine, I remember saying uh that you're right, like you know how to fry pork chops.
SPEAKER_02I don't remember that.
SPEAKER_00Hold on, my mic's been on mute the whole time. Yeah, my mic's been on mute. I don't know how for how long.
SPEAKER_02Okay, well, if you can hear Doug and you've been able to hear him somehow, some way, his mute, his m microphone has apparently been on mute. I don't know for how long or for how much of this podcast.
SPEAKER_00Yeah, we're still recording on here.
SPEAKER_02So we'll either way, and he's the tech guy. Anyhow, go ahead.
SPEAKER_00But uh, and I remember uh at that point, I I heard her mutter under your breath as you walked out of the room like like he knows. So I stepped up my game. I I grabbed the pork chops, I seasoned them, I battered them, I put up the oil, uh I made some biscuits from scratch, didn't even measure stuff, just made the biscuits from scratch. I had some what some other vegetable, I forget what it was.
SPEAKER_02I don't remember anything but the pork chop.
SPEAKER_00And and so everything literally gets ready within 30 seconds of each other. It comes out of the pan, comes out of the oven, comes, you know, I still can't do that. Was just glorious. And uh I I set it down, so hey Janine, dinner's ready. And Janan comes in, still like getting dressed, hair in a towel. She doesn't even use a fork, just picks up the pork chop, caveman style. Wow, that was and takes a bite out of it. And as she's chewing it, she just a level of disgust came over her face as she says, Just these stupid pork chops are better than what my grandma makes. Had to admit that these pork chops were the best thing she'd ever eaten. And but that's that mindset. And early on, it's like, how dare you come into my kitchen and cook my food? And and then finally, one of the senior adults at our church at some sort of women's event, as Jananne was recounting what a terrible husband she had that cooked dinner for her.
SPEAKER_02That is not true.
SPEAKER_00Uh, looked at her and said, Honey, if your husband enjoys cooking and he's actually good at it, I think I'd sit down and shut up and enjoy the meal.
SPEAKER_02Okay, I have no recollection of that happening. So I don't know if you're making this up. I could have amnesia because my brain is full of things. I really have no recollection of that, Doug Hodges.
SPEAKER_00Well, it happened.
SPEAKER_02But okay, and it probably did. But here's the deal is that that was my issue that could have become a major hindrance in our relationship. And every once in a while, that little competitive nature creeps up into something our relationship on my side, totally me. But that is one thing that I have, and Doug has said to me, he's like, Janine, I am for you. Everything I'm doing is for you, is for us. And truthfully, that has been the proof is in the pudding because I have seen this man beside me while I have had surgeries, while I have had babies, while I have been sick, uh, while I have been grieving extreme loss of family members.
SPEAKER_00So I know, just to give you an example, that sometimes being for someone means doing something they don't like. Uh I remember right after right after her uh one of her surgeries. Uh she had been in a lot of pain. And you know, I'm that was my neck surgery. I remember she's sitting in bed and she's like, I need you to pick me up and get me out of the bed. And I had to look at her with love and say, you know, honey, your doctor says you're capable of doing this. And I realize that you're scared. I realize that you're you're you have been hurt and you need to get out of bed by yourself in order to be able to heal.
SPEAKER_01Yeah.
SPEAKER_00And I I tell you this how to love. I know you're gonna hate me before it and you're gonna be angry at me, but if I do this for you, you will never be able to learn to do it for yourself and you're never gonna heal and recover and get better.
SPEAKER_02And and I remember that, and that was, and I I knew that you were in it with me because you had dealt with all the precursors to that, right?
SPEAKER_00So I do think, so staying on topic, I do think and and conversely, there's been times in her life where she says, You're not right. You know, your your mood's off, your emotions are off, you're way too quick to get frustrated and angry. You need to go get help. And and as much as I didn't want to hear that, that's something I had to take to heart and then go, okay, I gotta go, I gotta go get some help. Right. I gotta go talk to somebody, I gotta go deal with me, I gotta make get me in a better spot.
SPEAKER_02But I think the bottom line is is we have a friendship, and you're my best friend, you know, and I think that we have been in the depths of the bottom of the whatever, the barrel, together, just trying to at one point, like if you're way down there, I'm trying to pick you up and vice versa. And there are times when we're both kind of down there, but we're still together in it. And like we've been through way too much, man. I can't train somebody else.
SPEAKER_00Jananne could never leave me because she would never know how to log into iCloud. Like it would just be like I don't even know what the password is. She would not know any of her past if I die and first, like uh it's just God help the poor tech person on tech support that's gonna have to uh figure out how to help her log into all of her.
SPEAKER_02I literally said that to you this week. I'm like, Doug. Netflix.
SPEAKER_00I can't even like log into Netflix.
SPEAKER_02I know my Netflix password because you made it really easy.
SPEAKER_00But if it's something your network's password to your um to your profile, you don't know the full Netflix password if you had to set it up somewhere else.
SPEAKER_02I don't even know the password to our date. Like so, anyhow, so yeah, if just something did happen to you, like I wouldn't know any password. So anybody out there who's a hacker that could help me out if ever something happens, heaven forbid, um, I'm I'm I'm lost in the sauce. But yet I can remember phone numbers from like eighth grade. So and what I wore on our first date.
SPEAKER_00So the the point of what we're trying to say is it is incredibly stressful caring for someone with special needs, that there's a constant pressure that you always have you never can just turn it off. They never can trust that they can care for themselves no matter where they are, what they're doing. Even when they're with somebody else that you've set up and set up three backups for them to be able to go to, it's always a little bit of a nag in the back of your mind that this is that there's potential that this could end poorly at any point in time.
SPEAKER_02Well, and quite honestly, our situation is different from other people's. I mean, if if you have a child or a loved one who is very compliant and is very happy and is very easy to live with and get along with, perhaps it's easier. I don't know because I don't live in that situation, right? I mean, and maybe you're able to leave, or maybe you're able to take that person with you places, right? But over the course of the past few years, I mean, we have traveled with our kids and we've been on an airplane with our child with special needs. I think he's been on a plane twice, but that was back in 21 and 22. And I've said recently to people that his world has gotten smaller and his struggles have gotten greater. And so, you know, we're we're working through it. But I will say I have told people like, if I didn't have you, Doug Hodges, to go through this with, I just don't know how people do it without someone in their corner who's on the same page with. And I'm I'm very thankful for
SPEAKER_00That and I know that I don't always get it right, and I know that I'm not always the easiest to live with, but um and you know like any person that's growing, we facing our own struggles, you know, our struggles in our jobs, our careers, our health, you know.
SPEAKER_02We have another child, we have aging parents.
SPEAKER_00Yeah, there's all kinds that all that stuff is is still there in the background, but it's just this other level of not only now do we have to to provide care for someone for as long as we can possibly imagine, right? Uh we also have need more in different types of care, and we have to interact with different systems. And every one of the every one of those those things creates a level of stress and struggle of trying to then figure out what are our next steps, how do we divide that up, who takes over what? Just organizing the folder that we store all the files in online is you know, we have different concepts as to where and how files could be stored, and named. And and so you look in this folder and there's 13 of the same file in 15 different folders, name three different things, but it's the same file because my someone's brain, and I'm not saying whose, needs it to be in a certain way, a certain spot, and they free it for one thing, so they move it and do it, and that and it's like, what where is why which one's the the right one?
SPEAKER_02I tried my best.
SPEAKER_00So the point of what I'm trying to say is that it there's a partnership that has to be able to happen. And if that partnership doesn't have a foundation that's pretty solid on which to be able to build, it's gonna get really challenging to be able to be successful in the venture. Right.
SPEAKER_02And honestly, at the same time, like I've got to do the work on me with all the other stuff I'm dealing with, and you've got to do the work on you, and that will look different. Yes, we've got to do the work together and on each other, and we've got to have those real raw conversations, and we've had to have those, and those are hard, those are emotional, but we've created this family.
SPEAKER_00I will say, I think one of the things early on that we learned really well how to do is how to communicate with each other and how to say what we were really thinking and feeling, with knowing that sometimes it might be painful for the other person to hear it, but recognizing that as a a love expressed to you, I need to tell you what the truth is, and or at least what I perceive the truth to be.
SPEAKER_01Correct.
SPEAKER_00And then be willing to sit down and listen enough to recognize I might be wrong in how I have have, you know, conceptualized something on both sides, both is wrong in the hearing of it, both wrong in the saying of it, and work through the fact that even though I'm telling you something that might be hurtful and painful, I'm telling you because I'm for you. I'm not telling it if I was against you, I wouldn't tell you at all.
SPEAKER_02And then being willing to hear that and maybe even digest it and maybe not take it so well the first time, but realizing that we are for each other and we're not just saying something that could be potentially hurtful or brutally honest just for the sake of being mean to one another and to throw like a hand grenade, right? Um, so I definitely think uh back to what I was saying a minute ago is I'm also trying to do work on myself, in addition to you working on yourself and the way that you work on yourself. I'll speak for me. The way I work on myself personally, professionally looks different from you. You know, the way I reset and the way I rebound and the way I rest is completely different from you. And so we have tried to respect each other's space for that.
SPEAKER_00It took us a while to figure that out. Oh, yeah. Uh for Janine, being around a whole bunch of people is energizing. For me, being around a whole bunch of people is draining. And recognizing that we come home from a party, I am wanting to go to bed and tired and go for a walk with a dog and be by myself, and she's wants to talk and be happy and this and that, you know. Like, no, I'm done. Right. And there's also been times where she's had to encourage me, go away, leave, get out of here, go by yourself somewhere, take some time. You know, it's it's okay to do that.
SPEAKER_02Right. And so, you know, we we figured that out over the course of our currently 23 years of marriage. But again, the way that I've had I've had to figure that out because it's not that you are being mean to me like Janine, I just cannot talk anymore. I really just need I need quiet. And for the longest time, I'm like, well, he doesn't love me, which I know he did. I know you did, but oh, he just doesn't want to hear me. Well, he's been with me all night. He's been with all these people and he's peopled out. And to be perfectly honest, once I hit, once I get home from those events, I am my head hits that pillow and I am where you tend to need to like watch something or read something in quiet or headphones canceling everything out to decompress. So, you know, you live and you learn, you figure out what what you know best suits you and your loved one. And and we don't always get it right. I mean, I fail every day. I have to ask, you know, say I'm sorry and ask for forgiveness from all the men I live with because I mess up, right?
SPEAKER_00And get a dog, that always helps.
SPEAKER_02You didn't say that you should you apologize too when you do things wrong.
SPEAKER_00If ever I do things wrong, I apologize.
SPEAKER_02Here we go.
SPEAKER_00But I think our son just got in from his bike ride. That will probably be the end of this episode. And uh, we will see you next time.
SPEAKER_02All right. Also, in the chats, if you've got some advice and you and your significant other work out things a different way and have some suggestions, we will take it. All right, we'll see you next time.
SPEAKER_00Bye bye.