Gerry Arango Deely (00:08):
(silence).

(00:13):
Hey family member. Let's talk about what can help keep our marriages or long-term partnerships going strong - hopefully going stronger along the "Parallel Path". I've been reading up on this and I've been living it too.

(00:29):
So hello and welcome to season five of Our Parallel Paths: A Future for My Loved One with a Disability... And for me! I'm your host, Gerry, Dr. Geralyn Arango Deely. And this podcast is about just what the title says, the parallel paths of family members and their loved ones with intellectual disabilities. I'm a parent myself and I always have questions.

(00:53):
Our Parallel Paths is about nurturing and supporting ourselves as we nurture and support our loved ones with intellectual disabilities. Our roles as family members are ever-changing and evolving alongside our loved ones. So there's more than one path, more than one future to talk about, and that's why we are here. I hope the stories and perspectives of my podcast, guests, and me give you hope, information, and ideas for your path. So keeping any marriage strong is challenging. Keeping a marriage strong is work no one can do perfectly 24/7. But it's work that needs to be part of every day, kind of the baseline assumption behind every interaction we have with our partner.

(01:38):
I know this 'cause I'm married - twice, as you may know if you follow the podcast. What can I say about what can keep a marriage strong when we're also supporting a loved one with intellectual disabilities or autism? I'm a student of this myself. I'm a person walking the parallel path. I hope you'll allow me to share some of the things I'm learning, some of the things I'm validating to myself and perhaps to you too today about keeping a marriage going, peppered with a bit of my experience and some of the research that's out there. As I mentioned, I have been married twice.

(02:18):
I was widowed 11 years ago when my first husband Al died of cancer and I remarried eight years ago to Michael. My daughter's married, soon to have another baby. My stepson and his fiancée are planning their wedding. Marriage is in the air right now around here. What do the experts say to my daughter and to her husband about marriage? What do they say to my stepson and his fiancée about what happens after the reception is over? Not to be mistaken for what, when the honeymoon's over 'cause that's different. Um, beautiful young couples, these guys are. Couples you and I might have been years ago. Parenthetically though, I think people in marriages or long-term partnerships are experts of sorts. But one of my favorite more academic experts are Drs. John and Julie Gottman. Longtime researchers about healthy relationships. 

(03:07):
Back in 1999, with an update in 2015, Dr. John Gottman wrote a groundbreaking book called The Seven Principles for Making Marriage Work. So just to start today, these are the principles I put my spin on from Dr. Gottman to say to my daughter and her husband, seven years married. And to my stepson and his fiancée who are currently in a high octane wedding planning mode.

(03:42):
Um, and this is also though where I'd like to start with my own marriages. And with all of us on the parallel path who are married or in long-term partnerships before we look at the research on the extra challenges to our marriages when we're supporting a loved one with an intellectual disability.

(04:04):
So the First principle of making marriage work according to Dr. John Gottman is to, one, enhance your love maps. That's really about holding onto the information about your partner's life. That's just the stuff from the little things like you know, their favorite desserts, to bigger stuff.

(04:28):
Big, big stuff like their dreams, their stressors, and hopefully they're holding onto yours as well. 'Cause love is in the details in knowing what else matters in each other's worlds. I mean, I have to be careful with Michael's favorite desserts because he, he's a type two diabetic, but he is a very satisfying person to roast a chicken for. I always look back at my Al's health issues and I wonder if I could have done more as he went through cancer. So I know I try to support Michael in doing whatever he's trying to do to take care of his type two diabetes.

(05:07):
You know, I try to go with him to the doctor when I can, 'cause I know it's stressful. I would love to be, uh, better about football, but that I'm not quite there yet.

(05:19):
Number two, nurturing your fondness and admiration. Simply put, happy couples respect each other and like each other.

(05:32):
The third principle for making marriage work according to Dr. Gottman, turn toward each other instead of away. And Gottman calls this keeping a quote-unquote emotional bank account. If you have more good feelings and like positivity kind of stored up about your partner, so you're kind of holding onto that. It gives you a cushion for the rough times that all marriages inevitably have. You know, sometimes that feeling, you gotta say to yourself, "Oh remember, uh, even though I'm gonna strangle this person. Remember that they did this."

(06:07):
Number four, let your partner influence you. Happy couples try to work as a team and the team considers each other's perspectives and feelings as they're making decisions and they make these decisions together and try to find those common grounds in difficult situations. Letting your partner influence you is about realizing you can learn from your partner and it's not a weakness on your part, it's not a loss of control on your part. It's just letting them give you something to think about, letting them have an effect on you.

(06:52):
Number five, this one kind of goes with number six. Solve your solvable problems. Gottman says that there are two types of marital problems, resolvable and perpetual, which is also the unresolvable. It's important for couples to figure out which are which, which are the resolvable and which are the perpetual.

(07:19):
And sometimes telling the difference can be tricky. So according to Gottman, he'll say that one way to identify a solvable problem is that it seems less painful. It's less gut- wrenching or intense than the perpetual kind of unsolvable problem. And those are the gridlocked ones. Solvable problems are situational and there's no underlying conflict. And so it's kind of like picking a minivan or an SUV. It's solvable.

(07:53):
Number six, like I said, goes with this. Number six is to say overcome gridlock, because gridlock is when the problem kind of seems like it's unsolvable.

(08:07):
Gridlock is about unfulfilled dreams. And so Gottman says that the goal with the perpetual problem is for couples to move from gridlock. That place of like, "You know, some part of me isn't getting what I really dreamed of." To dialogue. And again, what he's saying is that that has something to do with unfulfilled dreams on one or the other person's part. Gridlock is a sign that you have dreams for your life that aren't being addressed or respected by your partner. So this is Gottman speaking. Happy couples believe it's important to help each other realize their dreams.

(08:45):
I mean, Al and I saw counseling a couple of times when that gridlocked dialogue issue was not resolving. So we took it to the next level and had somebody help us through. And, and, and what about the unfulfilled dream a couple

Gerry Arango Deely (09:00):
... might have had about, you know, in our case, retiring and spending their time traveling, visiting the grandkids, tending the garden, playing golf. I mean, I look at my own friends and I see them kind of some friends drifting off in that direction. You know? They're gonna be able to travel whenever they feel like it. They're gonna be able to visit and jump on a plane. They're gonna be able to do whatever whenever. And part of me feels a little, little jealous of [inaudible 00:09:27], because it is different when your adult loved one has a disability and you're trying to support them, especially in a commun- more community setting. This is not a slam dunk for us. Retirement isn't like, "Okay, I'm done. I'm off to do whatever I want."

(09:44):
So when you have that, um, gridlock, what is the dialogue then? And I don't know for sure, but the conversation, the effort to overcome gridlock, it needs to happen and it needs to be ongoing.

(10:02):
Gottman's seventh principle of making marriage work is to create shared meaning. Because marriage isn't just about the kids, it isn't just about the chores and the grind and it, and the sexy time. It's about something else too that is unique to a couple's life together, a level of meaning that comes from the life that you've prepared and that you've made for yourselves. It's the rituals, little stuff like eating together, reading to your children, or how you spend the holidays. And also, like an appreciation for the roles and the goals that link you and lead you to understand and treasure what it means to be part of the family that the two of you have become.

(10:48):
This is Gottman speaking again. Um, but in Michael's, in my case for example, it has become bringing everyone together for Thanksgiving. Um, you know, this late in life marriage where we're not reading to our children, maybe our grandchildren, but we're not reading to our children or, or whatever. We've found a holiday where we can gather almost everybody, almost all every year. And it ends up being big enough some years that we have to rent a place to do it (laughs) and otherwise we do it in the house. But it's great. It's tons of work and we're really punching, and our feet hurt when we're done. But we get the kids together all in one space and that's our shared meeting and we'll take it.

(11:37):
So I can already tell you that I have not always practiced any of these things that Dr. Gottman preaches all the time in his seven principles for making a marriage work. Not as well as I should anyway. But as I think about these two couples, my daughter and her husband, and my stepson and his fiancée, I do feel like they're off to a pretty good start. But really, at least in my experience, it's all about the actual journey.

(12:08):
The title of Gottman's book is Making Marriage Work, and I wanna exchange the word marriage with commitment for a second, because one of the things I've seen in marriages that work, and marriages that don't, is the level of commitment that is or isn't there. I believe that both partners have to be committed to the marriage. If one partner isn't fully committed, the marriage won't survive unless that somehow changes. If both partners aren't fully committed to the marriage, you know it's not gonna work. It takes two. And commitment is what you work from. Commitment is what you promise, wherever you take your vows. Marriage is work.

(12:57):
And I'm still gonna add in. There's even more to making a marriage or long-term partnership work for us, couples on the parallel path. You know, couples who are likely older than my stepson and his fiancee or my daughter and her crew, you know, and they have been couples like us who have been together longer perhaps. Although, you know, I was married once for 23 years and now I'm married for eight. My first husband, Al and I, were together through the school years for both of our children, through the challenging way-fun teen years. Um, Al and I were together during times when it was just the two of us, then it was the three of us, then it was the four of us. And that fourth member, that Nic, things got complicated. Serious illnesses from birth, behavior issues at home and in school, intellectual challenges. It got complicated. It challenged our marriage and our relationship with one another. And I mean, I always treasured that when Al and I realized that one of the reasons we were struggling as a couple was because we had such terribly conflicting schedules with all that was going on, and we really weren't even seeing each other enough because we were just making sure somebody was in the house to take care of the kids, we started going to lunch on my day off and his half-day off, just the two of us before anybody, anybody's the kids got picked up and before Al went off to his Friday shift. Um, and that really, that time together really helped to, to, to get things back on track because finally Al and I were together for the illness that took him from us too soon.

(14:49):
My second husband, Michael, is with me as my two children are age- have aged into adulthood, one who is completely left the nest and one who is has left the nest. Um, working on it. We're always working on it, my Nic, with lots of support. And Michael has three adult children of his own, all long gone from the nest. He is not my children's birth father, yet, in his own way, he has stepped into many of the roles their birth father did play, even though the decision buck ul- ultimately always stops with me.

(15:24):
The principles that Dr. Gottman lays out about making marriage work are true for us, true for all of us. But what else is there to add or perhaps to emphasize or perhaps to flesh out? This is the research I wanna share today as well. Based on life, when your loved one has an intellectual disability and the first research goes specifically to Down syndrome, like Nic, or to autism, my question is in the end, did I have a healthy marriage the first time? And if so, how did we do it? Do I have a healthy marriage now, and what do I need to do? What can any of us do to understand the impact of having a child, now an adult, with intellectual disability or autism on a marriage?

(16:09):
So here's me today here, going deeper and finding some additional ideas and wisdom to share from the Journal of Intellectual and Developmental Disability, the May Institute, and I hate to tell you, AARP. For many of us, building and maintaining a strong marriage is one of life's major challenges. Only about half of us even succeed. Divorce rates have hovered around 40 to 50% for several decades. You probably know that. The good thing was that the numbers started to decline a bit, um, in 2008, maybe because social norms are changing, maybe because people are marrying later, depends on what you're reading. Second marriage, divorce rates are higher than first, which I found out just before my second marriage. They're at like 60%.

(17:03):
But anyway, couples that have loved ones with disabilities often have more stressors that may impact their relationships. And yeah, the divorce rate for us too, similarly high, 40 to 50%. And yet many couples manage to keep their marriages healthy and strong, even as they attend to what sometimes feels like a never-ending set of needs of their loved one of the disability in, to, and through adulthood, whether they live in the home with them or not.

(17:34):
So the first thing I found was an article, just an article on Expressible.com by Alexis Irazoque, and she's a speech therapist. She wrote about a study by Isler Taylor and others from 2022 research in the Journal of Intellectual and Developmental Disability. And the article was entitled, Uplifts,

Gerry Arango Deely (18:00):
Respite, Stress, And Marital Quality For Parents Raising Down... Children With Down Syndrome or Autism. Big long title. I wanted to dig deeper though, into the study than just reading the article. So I took advantage, frankly, of my professor status to get a copy of the journal article from the university library 'cause I'm not a member of that, the, the, uh, organization that published it, but is a privilege of being a prof. Um, so I got a copy. I will tell you if you don't already know this, that a peer-reviewed journal article is often pretty long, pretty dry. But this one resonated with my question, so I was eager to get through all 19 pages of it. The article specifically discussed results of a survey they surveyed 213 couples, about half whose child had autism, and the experience of the other half couples whose child had Down syndrome.

(19:02):
So this is right up my alley, of course. What was novel about the study was that it wasn't about like husband's experiences or wives experiences. It was about the couples being studied together and the effects of what the article refers to as uplifts. Uplifts, they define those as perceived pleasant experiences that counter daily stress. The article also looked at respite care. It looked at stress and it looked at marital quality across these mothers and fathers of children with autism and Down syndrome. And they report the results by disability. So I'll share that with you. It turns out that when parents of children with autism reported more uplifts, remember that pleasant, those pleasant experiences, um, and less stress, they individually reported better marital quality. The wives of children with autism reported better marital quality when their husbands reported more uplifts and less stress.

(20:10):
So appreciating the good things in our loved ones and recognizing the good things that happened on our journey led to a stronger marriage for couples who had a child with autism. And hearing about it, sharing the good between the two of them really, really helped. In this case, it, it seemed even more important for husbands to appreciate and share the good with their wives, with the moms.

(20:37):
Higher demands and fewer uplifts may cause people to view their marriages negatively. Communication matters, especially when there's something positive to communicate. And sometimes wives, moms really need to hear it from their partners, from their husbands, because moms are often on the front line day-to-day. Now wives with children with Down syndrome who reported more uplifts individually and along with their husbands, they reported less stress and better marital quality. So the wives noticed and even better when both noticed the good for taking down the stress and improving their marriage. As a parent of a young man with Down syndrome, I know my late husband, Al and I, we celebrated every milestone because they were just that much harder for Nic to attain. And we really worked hard to support Nic along the way. My homie with extra chromie, he met his milestones late. Nic met his milestones with a lot of support, but Nic met his milestones. And those uplifts, the day when he finally walked when he was three, the day he came home from a month in the hospital and seeing the look on his sister's face when we walked over to pick her up at school, I still remember those uplifts. They kept us going. Think about yours and, and, and think about them again.

(22:08):
So the research also talked about other stuff like when a loved one has a disability, how important and helpful it really is to have couples have the opportunity to get a break, more formally known in our world as respite. Getting respite was directly associated with marital quality for the parents of children with autism and indirectly associated with marital quality for parents of children with Down syndrome because it just reduced their individual stress. So take a break. It isn't easy. I know this and it's also, but it also ha... Is really easy to be afraid to take a break 'cause you know you're holding up the universe, but you do need that break. Your spouse, your partner needs that break. Your marriage needs the break. And you know what else? Your loved one probably needs it too. They may need a break from you.

(23:07):
As I kept looking for what's out there on marriage for those of us on the path, I read another article from May Institute in Randolph, Massachusetts. So according... In there, in that one, Dr. Nancy Gajee, the former director of clinical training, she said that parents of people with disabilities who have successful marriages have some things in common. They include accepting each other's strengths and weaknesses, which makes me think of Gottman's turning toward each other and that emotional bank account. They seek outside support and successful marriages, they make time for each other. So she says, "Parenting a child with autism spectrum disorder or other developmental disability, or a severe behavioral or psychiatric disorder is not intuitive." (laughs) That's what Dr. Gajee was saying and I'll say that's true for most of us. "The special skills that are required are not skills that we learned from our family of origin," which made me think, just a little sidebar.

(24:16):
I wonder if that applies to siblings. I wonder what siblings learn from us, their parents, in their family of origin. I wonder if it's different. I wonder if it's the same. Another issue that gets in the way of keeping marriage strong and intact according to Dr. Gajee is a perceived lack of support from extended family, from friends, from the community in general. Sometimes parents with a loved one, with a disability feel criticized, feel shunned or avoided by their own parents or siblings or friends or neighbors and I'll say even parents who have loved ones with disabilities. I found in my experience sometimes there was a pecking order there too, which might or might not have anything to do with the disability, but whatever it is, it can lead to a sense of isolation.

(25:10):
"When parents start to feel isolated," says Dr. Gajee, "It is important that they stick by each other and think about expanding their definition of family." That sounds like we're going toward the Gottman's shared meaning. It's a good idea to seek out other adults who will become allies, individuals who work with you and learn how to help you meet your loved one's needs. Families that do have they that, that do the best, they have a support system to help them. And that team is well integrated into an expanded family structure. And that team can include family members, certainly friends, professionals. In our house, we have professionals woven into so much of Nic's life that it does help Michael and me to kind of have a life, to get an occasional night away because Nic is with someone at the condo, with someone in the community, with someone at work.

(26:10):
Um, so, "With assistance provided by a trusted member of the relief team," as Dr. Gajee says, which is what just happens to us, "Couples can even plan an occasional date night so they can get away and enjoy each other's company." I would say do it. And it's sometimes really hard because the temptation is to use the time that you get away to clean your house or something, you know? We have professionals woven into Nic's life. It helps Michael and me to have a, a life to get an occasional night away because there's someone there and I try not to be practical in those moments.

(26:53):
I found the last bit of wisdom on keeping our marriages strong while supporting our loved one with an intellectual disability or ... autism. Uh, yeah, a 2023 article in AARP.com. I have to say though, I'm glad they wrote about it because it's finding this information in common places, in places where typical folk go to. And so someone like me sort of tripping over it while I'm reading on this website, that's great. It's not in the special places, it's on all the places.

(27:25):
You know this article's by a caregiver herself named Lee Woodruff, co-founder of the Bod- Bob Woodruff Foundation. And she worked, they work with injured service members and their families. Anyway, this article is called The Challenges and Joys of Caregiving of an Adult Child With a Disability. Bingo. Through several family stories in this one, the author acknowledges, yes, ours is a full-time job, a full- I think it's a full-time mindset and headset wherever your child lives, with you or in the community or wherever. But marriage is a full-time job too. And Woodruff echoes some of what Gottman says, what the journal article says, what May Institute says, and some of what my experience says too, perhaps yours as well, that marriage is around the clock, lifelong commitment as is disability.

(28:20):
So find activities so you, you, can keep a sense of yourself. It could be exercising, meditating, or just going outside on the yard. Also, connect with parents going through similar journeys because that support and familiarity builds a strong community. I find that I love the person that I don't have to explain anything to, they just know because they're going through it in their way too.

(28:53):
Life goes by fast. Just as you make focus time with your loved one, make focus time for your marriage. If you can get respite, great. If you can rent a movie and drink wine at 10 o'clock at night, that's good too. Try to solve your solvable problems and if you're able, plan ahead, think about trusts and savings, things to help you with the problems that are also kind of perpetual, that we're always thinking about and always tweaking, um, because those really are in the back of all of our minds. What's gonna happen when I'm gone?

(29:36):
Keeping any marriage healthy, again, takes a lot of work. Keeping a marriage strong in the face of challenges brought on by raising a loved one with special needs takes even more effort. But overcoming these obstacles together can be rewarding and fulfilling and can strengthen a marriage if you give it the time and attention that it needs to thrive. Marriage isn't easy, you know that and I know that. I think my daughter and her husband know that, and I believe that my stepson and his fiancée will learn that too. When marriage works, it's a wonderful thing. It's a wonderful thing to the extent so much for me that I was up for trying it a second time.

(30:20):
So to conclude, I'd like to consolidate, maybe put it all together, what can help a marriage on the parallel path in addition to what helps any marriage. These are my takeaways from a bit of what's out there, a bit of what I've shared with you today. And I wonder what are yours, and please feel free to comment here or on the Facebook page. So these are mine.

(30:43):
Number one, our parallel path is a more challenging path than the path of those who are not directly supporting a loved one with a significant disability. It's a bit more challenging for some. A lot more challenging for others.

(31:01):
Number two, notice the good. Notice the uplifts. Remember those pleasant experiences, those pleasant things that happen regarding your loved one with a disability, and share them with your partner. Sharing this can really help your marriage. At the very least, it can help counter some of the stress.

(31:25):
My number three takeaway, consider your tribe, build your tribe. The friends, the family, the staffing you have who understand and care and can help if you need them. You and your partner al- not alone, and you're gonna find that you wanna give back in your own way to them as well.

(31:45):
Number four, recognize that you really do need to take a break as a couple, even if it means wine and cheese and Netflix at the end of a rough day. Remember, you are a couple first. It's so easy to lose sight of each other because there's so much to be looking at. The work isn't keeping our relationships on the radar no matter what.

(32:12):
My fifth takeaway, listen to your partner. Give your attention to their thoughts. Even if you don't agree with them all the time, it's a sign of res- the respect that you would want too.

(32:28):
Number six, we hope to always love our partners, but we've gotta like 'em too.

(32:36):
And number seven, my last takeaway, take care of yourself so that you can take care of all the other stuff too.

(32:47):
What would you add to this list? Listeners, thank you so much for spending time with me on today's episode of Our Parallel Paths. I hope you'll like and follow our podcast. I hope you'll share it with family and friends. And I really hope you'll return to listen and maybe learn from more stories of people like you and me and our loved one with a disability on Our Parallel Paths. You are not alone. I'd love to hear from you. Please feel free to comment. Please feel free to rate the podcast, feel- please feel free to join our Facebook group. Take care and I'll see you next time.

(33:26):
This podcast is produced by Networks for Training and Development. Thank you.