Changing Dynamics

We invite you to join us as we talk about the changing dynamics of friendships and relationships. We explore how things change with friends and family, and how you often find that whole new group of friends that support you. 

Transcript

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Welcome to Linked Together a family center program. I'm so excited to have you along as we share our stories Hello. I'm so glad that you're going to be with us today as we explore the changing dynamics of relationships how sometimes things change with friends and family, and how maybe you found that whole new group of friends that support you. So today, let's talk about the shifting dynamics of friends and family. I'm just going to kind of bring it over to you guys and kick us off right now, because, again, I feel like there's a lot to talk about around that. You know, I feel that some of our relationships have changed over the years, maybe not so much now, but maybe when the kids were smaller and it was sometimes it felt hard to have to explain everything. And so sometimes I felt it was easier to say no or I wasn't going to go then to like have to explain. Right. So, I don't know, has anybody experienced anything big or little or do you feel like you're relationships have changed? I know for me, I think our relationships have changed a little bit. Yeah. Because we have to really accommodate getting there. And so a lot of times I just try to say when we say no to stuff, it's not because we don't want to be there. It's because we don't want to be bothered with the production that it'll take for us to come. You know, getting equipment packed up the, you know, wheelchair and all this kind of stuff. And so sometimes it just it feels easier to say no Our families are amazing. We do have a really, really good family support system. Like Linda, when you were saying when you were living here, you didn't have family like where we live, we don't have any family around. Our closest family is about an hour and a half away. But but we still have really good support. You know, if we were to call on them for something, we know that they would be there. Yeah, but but events and friends and just that social piece, we we just really don't have that. I don't know if it's just because we don't really know how to navigate it. It's not something that we've really thought about. We just kind of stay with each other, I guess. I don't know. Yeah. How about you? Well, I think I'm fortunate. I've had a pretty good experience with family and friends, but there have always been moments where I feel the same way, or it's just easier to say no. I don't know how behaviors will be. Every day is a new day. So sometimes I don't know what to anticipate. And I just can't do it that day, you know? Or we have to plan for an early exit. You know, we always get to think about what's going to happen and if we need to if we need to go. How do we get out of here? So but I think that for the most part, I have had a pretty good experience. I do have my friendships now are mostly families who have children with special needs who understand, you know, even though we all have different journeys and all my friends have their children have different needs, we still understand the bottom line. What's underneath is that there's some days where we just can't make it. And I'm sorry I got to bail on you at the last minute. That's just how it is. I think that some of the struggles I've encountered with family is just educating, educating them on the diagnosis, what that means that they don't have to treat my children differently. But at the same time, they do have to understand that they have different needs so that I think that has been probably the hardest part is really explaining to both family, my husband's family and my family you know, just what that means. What is autism look like? Down syndrome. My daughter speaks, but a lot of it is unintelligible. So, you know, we kind of help them along understanding. But but I'm pretty fortunate. So for us, when our two children were born, we lived several states away from any family and we we did have especially with my mom and my mother in laws and my two sisters, when we knew Mac was going to be in the hospital for a long time, And so we would have them come and spell us so that I could be at the hospital more and or when a big surgery was coming. So that's they were really great at lending a hand, but they were also scared. They they didn't know how to even hold him when he was so little. And he had what, you know, all of the all of the what I call spaghetti of all the lines and then all the equipment around but eventually, over time, they got more and more comfortable. And everybody, you know, that's just Mac and that's how Mac rolls. Yeah. And but it took a long time to do that. And even still, because of his communication differences, because he uses assistive technology. Sign language was his first language. It's still a little hard for them to have full and rich conversations. And so I kind of bridge that. Right. And I notice the difference between my my family's relationship with my son and my daughter because of the communication. Right. The communication, the the telling of stories and exchanging of questions. My daughter still isn't there, whereas my son, he doesn't stop talking. Yeah. But so I was just I was just curious if you when when Mac when he had the cords and all of that, did you did you find yourself protective? Just like extra protective? I know when when Elijah was born, I was such a safeguard. I didn't, I was afraid to even just let his siblings hold him. You know, I just. So did you experience that at all? Yes. I mean, we had standards. Please wash your hands before you come in. If you've had any hint of a sniffle, don't come to our home. You know, we can't take those chances. And everybody understood that I mean, when you have a kid on a ventilator with a trache, they kind of get it. But we also needed for Mac to have as much normalcy, even with all that equipment around him. And all those tubes and lines. We needed him to have that loving touch and know people. And so we we just felt like that was our balance of of how we could handle that. And then for friends, it was pretty interesting to see how quickly some friends faded because it was just a lot to handle and or, you know, just hard for some people to take that in or their little children that we we all knew were not interested in interacting with our children. And, you know, I get that. I know that that happens. And we so we lost friendships just because of that, those differences. But then we had other unexpected friendships come along with two of our best family friends and to our children. This day, were couples who didn't have children. And so they kind of became aunties and uncles for them. And that was great. And then, you know, we brought we brought friends to us. We were not portable. I mean, we were going with the whole red wagon of equipment at one point with Mac in tow. And so we brought everyone to us. We would have the big parties, we would have the celebration activities and and Mac would participate as much as he could. And Emily, of course, as well, that, that, that created friendship circles. And our church was very important to us. We were at a big old church, and we started one of the first disability ministries we helped to get that started in the area where we lived. And so that was another uh, another group that we were came to know. Yeah. And, you know, I think friendships in and of themselves, relationships take effort and work right? So sometimes it's just at the end of the day, you just don't have the extra whatever it is inside of you to like pick up and send a text or make a call or whatever that is. Right. Oh, that, that I'm totally lost in my relationships. I do say though, that you know, for me, you know, I, I do love hard. So you, you know, that, that love is there. Even if you don't hear from me. Yeah. You know, like, if it's, if we, if we're there and we've connected, you know that its there. Even if, if I never text or call because that's just I mean, it's just like you said, some days you just don't have the bandwidth. And I think before Elijah, you know, we just had a bunch of kids, you know. We had four. Right. And so so it was difficult to just kind of navigate all the kids to events. And, and then if it was an adult event, then you still had to find a babysitter. Well, when you live where you don't have family, that's difficult. But then after having Elijah, so we already didn't have that friendship circle anyways. So once he was born. Yeah, it was just I mean, we just kind of kept that same dynamic, I guess. Right. And kind of like Marisol was saying now after all these years, some of my dearest friends are friends like you all because you all get it. And there's not the need to constantly explain or to to give reasons for why I've fallen off the cliff for a little while and just can't, can't be in the moment and coming to event or whatever. So anyway, but it's, that's where I now gravitate. And for me personally, The other kind of interesting thing as on friendships is thinking about my kids because they navigate life differently. It was sadly interesting that although we always invited the entire class to birthday parties, I can count on one hand through all of those young years how many times my children are invited to birthday parties back. Yeah. And so that's another kind of tension that a lot of families run into and realize that they are not there's not that reciprocity of friendship when you're trying so hard to help build community and build those circles for your kids. And that's a really great point. I know for me, I've changed my perspective of what a friend is. Yeah. You know, you know, I think I think we grow up thinking a friend is the person that you talk to the most or the person that you you do all your stuff with. You hang out with the most. And and just as an adult, I realize that that that's a term that we've just kind of thrown and tossed out there. And we use it for people that we like for that moment. And I've just learned to to not label friends. Like for my definition of friends, y'all would be those friends because it's not about us living in the same space, in the same places. It's not about us talking on the phone or, you know, an occasional email is fine. Meeting like this is fine, but it took me realizing that that the concept of friendship was given to me all wrong as a kid. It's more than hanging out at your house all the time, you know? Although if we lived closer, you would totally be welcome, right? I'm just saying. Oh, oh, yeah. So on that vein of friendship. So all of us have multiple kids. So what about the siblings? Like, again, they're different, right? I I've got three kids. Two of my kids are deaf. So I've you know, the majority of them and you know, that that's what I always say. And so there have been really great relationships with that sibling and being part of that and being part of that unit and stuff like that. What do you how do you guys feel about that and how the siblings treat each other? So I like to talk about that, answering that question, but linking it back to something you said to Linda is that I have noticed a difference between friendships with my son and friendships with my daughter. And it didn't really click to me until just a few days ago when somebody asked me, "Does your daughter have friends that come over?" and I said, "No, she doesn't have any friends that come over." I don't know any of her friends. And I don't know if I ever have like at school, her friends are from our Down syndrome organization, but they live a distance from us, so we don't see them that often. But I thought back to when my son was in kindergarten and even before that, and I had playgroups going, he had so many friends. We had parties that were huge for him. So that that, you know, really kind of broke my heart a little bit the other day. And then what you just said about how your children's and their your children, their experiences growing up with friendships so that's something that I really need to start thinking about for for my daughter. And, you know, it's OK if we're helping to build that. Those friendships circles for them, that's OK the older they get and the more that they know themselves, they'll they'll learn how to do that a little bit on their own too. I mean, it just and your son already is. But yeah. And I wouldn't say even today they have huge friendship circles, but it finally it finally worked out. And as far as the sibling situation that my two children have the strongest relationship because we were all you know it was just the four of us. We were all little our little tribe and for Mac... I always talked about it as like his big sister hung the moon. He was tied to his crib for so long, and so many hours of the day, and she would dance in and out of his room and his eyes never left hers. If she was anywhere in the vicinity, his eyes were always on hers. And it just it's a very special relationship. And it's an interesting one because I can remember when Emily was eight years old, she asked a very astounding question for an eight year old. She was kind of a precocious learner and very verbal, even though she's a person who's on the spectrum, but just that kind of precociousness and she said, "Mom, am I disabled like Mac?" She knew the word disability. We didn't we didn't use little euphemisms. We just talked about disability and medical stuff. And it was because she saw the very different life that her brother was already leading. And so just that understanding that this word disability has a whole spectrum to it and differences to it. And the fact that at eight years old, she was already realizing and thinking, you know, my brother and I both have a disability, but this you know, there are differences going on here. And so I think that also just the the what they've been through together and on their own with their own journey has strengthened that sibling relationship for them. I think it's the same for us. When Elijah was when we knew about Elijah initially, we withheld it because we were trying to wait and see and then I I think I think for them, I think the younger boys, they didn't know initially. So they were kind of just kind of following the lead of everybody else. And they slowly started building their own relationship. And so, you know, the boy, Jeremiah, right above Elijah he's the protector. He, you know, he's like, when we started the conversation about Elijah starting school, it was a you know, they, they, they better take care of him. You know, he was just that concerned about it. Josiah is the nurturer. He's the one who's is he OK? OK, OK, is Elijah OK? my big boy... Darn it.. my big boy. He he was going off to college when we learned that we were pregnant with Elijah and so. OK, so stop. There's a lot of trauma right there for a kid who's learning that his parents are having another child when he's going off to college. He had a lot to deal with. Right there because that's his first question. What are y'all trying to replace me? Oh, and we were like, no, but but but for him, I think it was because he wasn't there. He didn't experience a lot of the hands on. And he's so much older too, and he's so much older and so but but they have this this bond, because he's the oldest. Elijah is the youngest. He came home for Christmas, and he snuggled Elijah the entire time. Elijah snuggled up under him the entire time. My daughter, she's the only girl she is his protector. She she makes sure he's included. She makes sure he participates like I can't even explain how important to her, but that goes back to the keeping the eyes on his sibling. It is important to her that he's a part. The friends in the classroom. He just had a birthday. Yeah. And I was trying to decide if I should send cupcakes. I sent cupcakes for the other kids. But for Elijah, I question should I. Should we? Because he can't eat one. And my husband, of course, was like, well, I mean, if you want to do it, my daughter, she was such a champion. She is. She's such a cheerleader. She is always if they're watching movies. Come on, Elijah, even if one of the other boys say, you know, Elijah doesn't know what we're watching she you don't know that. Like, she she just is so important to her that he's just a part. He's included, he participates. If it's a dance party. Elijah, come on. She just, I, I just I can't explain to you how proud that makes me. And what's her name? Ryan. Yeah, it just it makes me super, super proud. That, that she chooses to put up that extra effort, whether it's with her brothers, whether it's with other family members, whether it's with the classroom. You know, she's not in his class, and she'll say, I'll go with, you know, you got to go to school yourself. She just you never, ever know until you're in it, like how your kids might respond. I've heard her talk about programs at school, and we participated with the special, you know, the special needs kids today and different things like that. I've heard her talk about that prior to Elijah. But seeing her with him, I totally get it now. You have an advocate. Yeah. Well, she just is. And there's there's I mean, I can't tell you how many people has, again, been on this journey now for about 30 years, folks. Yeah. Yeah. And how many times we've met people who are therapists or work as a special educator or something. Their life touches the world of disability some way. And they have a story. I have a sibling. That's right. This is why I'm doing what I do, because I have a sibling. So who had something going on in their life. And that's what my daughter has chosen, public health and specifically disability studies. And she's tied those two together because although she's a person with a disability, she has a brother, right? And she's a sibling. And so she's a sibling advocate, too. And and that drove her decisions towards her studies and her work now. That's why, you know, I was just you were talking about just friends. Both of you are we're talking about friends. I remember Elijah, he got his first birthday party invite. And you know, you were saying how you didn't really think about it. I think I'm going back to expectations. I think I just expected him to not be included yeah. And one Friday, I open up his backpack just, you know, just normal check in the backpack after school. Right. And that was it. It was a invitation to a birthday party. I was going to say, I'm crying too. I remember those. I was a mess. I remember my husband. He, um. He laughed. He looked at me, and he was like,"I knew you were going to. I knew you were going to cry." Because I think I just I was so overwhelmed that that mother, you know, thought enough to, to include Elijah in the invitation. And so I was so overwhelmed that I sent her a thank you note in his bag. And because we couldn't make the party, it was just not not good timing. But I did buy a gift, and I wrote a note just thanking her. And she wrote me back and said, I just wanted you to know that we knew about Elijah. We knew about his accommodations, and we had already reached out to the place so they can accommodate his wheelchair. Oh. How cool is that? You know, like, just that's very cool. Yeah. Yeah, the unexpected joy. Yeah, yeah. That was just amazing. I, uh, I just wanted to bring it back to you, Marisol. Just a little bit, like, so you didn't get an opportunity I feel like we didn't talk about your, you know, your two and their relationship and stuff like that. You kind of heard about ours. Well, Gordon and Evelyn are like oil and vinegar. Which is probably a hard sell. Back and forth sometimes. You know, sometimes they mesh, but that doesn't doesn't last very long. They're always different, going in different directions. But Evelyn, she just. She loves her brother. She looks she looks up to him. She's the one who watches everything he does and tries to imitate him. And I don't know if he realizes how much therapy he's actually done for her that in that way, because she does want to do what he's playing with his friends. She wants to be in there. And he does include her for the most part. But, you know, they are oil and vinegar. So there's a lot of things that she can't do, like touching his trains. Yeah. But but they have such a sweet relationship. And those moments where they cuddle, they're we're big cuddlers in my family. I mean, I love to cuddle. We give hugs all the time. And and I have so many pictures of them hugging together. And I just it warms my heart because I feel like even though right now he doesn't always advocate for her, I think he will I think he will get to that point. And I know she advocates for him. She's an empath. The moment she sees you crying. She'll start crying with you. Oh, she feels everything in the room. If you feel excited, excited. She's excited right there with you. This was great. Thank you guys again for sharing so much of your story and and pieces of your heart. I think we'll talk some other time about I always say there's an emotional cost of like baring your soul and letting the world see it. Right. And stuff like that. And I think we'll talk about that at another time. But yeah. Thank you guys again for coming today and for being part of this. Thank you. The great conversations that we had today is supported by the Health Resources and Services Administration of the US Department of Health. And Human Services as part of the work of the National Genetics, Education and Family Support Program, the contents or those of the participants and do not necessarily represent the official views of nor an endorsement by HRSA, HHS, or the US government.