Finding Support

Join us as this season's co-hosts talk about where we find support. We will explore how you build community and make those connections that are vital in the successes of each of our journeys. Support comes in all forms and places, whether it's medical, parent-to-parent, families, friends. But today, we're really going to talk about the importance of parent to parent connections. 

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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 Thank you for joining us today as we talk about where we find support. We will explore how you build community and make those connections that are vital in the successes of each of our journeys. Support comes in all forms and places, whether it's medical, parent-to-parent, families, friends. But today, we're really going to talk about the importance of parent to parent connections. So right at the very beginning, if you guys think back, some of us have to think a little bit further towards that diagnosis time. And what did support look like for you then? So I don't know. Welcome, Sarita, Linda, Marisol, welcome back. And does anybody want to start that question off? Oh, wow. So I guess I can start. You know, for me, I felt like we had no support. We received our diagnosis at 22 weeks pregnant, and we were told to find a support group. And so we didn't know what that meant or what that looked like. Like, what does that mean to find a support group? How do you how do you is that just a Google search? is kind of how we were feeling. And and so that's what we did. And so we found an online support group that had over 3000, maybe 4000 people already in it. And so that was overwhelming because, you know, the moment I asked the question, my very first question, the first comment or response that I got, all the other comments was to that comment. And so my question was never answered. And so so for us, we really just found our support initially just at home, just with each other. My husband and myself, I drew a lot of my strength and support from him. And eventually, you know, when when I got more comfortable talking about what we were experiencing, I found more support from family and and and eventually, you know, close friends that I felt comfortable with telling what we were going through. But I felt like we were just kind of out there by ourselves initially. We, you know, to be on this journey and to be told to find something that you don't even know what you're dealing with. It was just it was really hard. So we eventually did find a support group. Folks like you all. So we eventually did find our support system, our tribe, as I like to call it. But but at the beginning of our diagnosis, I just don't believe it was as good as it could have been. Yeah, absolutely. Yeah. And again, you go out there and Google the questions. You don't even know how to who to ask or what to ask. Right. Right. Right. And even, you know, what am I looking for? And a support group like, am I you know, you've given me a life limiting diagnosis. So am I looking for bereavement? Am I looking for hope? Am I looking for, you know, conversations about medical questions that I need to be asking the doctors It was just it was a lot. And so I just had to turn it off. I'm still in the group. Yeah. But I am not an active participant. It's still just as overwhelming as it as it was. And this is five years later, but it's still it's too much. And I think it's because there's just so many people and your questions get lost. And so a little guidance on how to find support would have been great. So, yeah, I just we didn't have it as good as I think we could have had. So. Yeah. Well, thank goodness you did what you've done now because now you're lending that support to other people. Yeah. So for me, Google didn't exist when my child, my both my children were born there was no Google. So and we went through what's called in the world of genetics, the the diagnostic odyssey. We didn't know we didn't have a diagnosis. Sadly, the very first diagnosis that my daughter got was written in her medical records the day she was born. And it was a FLK. And I took it upon myself to to look and see what was being written about her, because we knew she was in some dire circumstances. And I asked the nurse, what is FLK? And I knew she didn't want to answer, but she did. And it's called funny looking kid. So they knew that there was something going on, but they didn't know what. Yeah. And so that started our journey from day one. And just as you were saying, Sarita, we didn't know where to turn and who to start relying on, except that it just so happened that my former boss and his wife were parents of somebody who was my age, who had significant disability challenges, and they were at the national level of advocacy and help to bring the ADA to fruition, the Americans with Disabilities Act to fruition. And they were some of our first people. They are visiting with us when our daughter was born and again when our son was born, which was an even more significant circumstance. So that was my first support. They had been through it. They were the seasoned parents and they were lending as much help as they could in those early days. We didn't have family in town we're here where we were living. And so then eventually what I started learning to do was network anywhere and everywhere, ask questions anywhere and everywhere and every doctor's appointment. I was talking to the families in the who were in the waiting room and started picking the brains of people that I could find out where where could we go know, what were their recommendations and their thoughts. And then we were in the very from the very beginning, we were covered under early intervention And that's the other supports. We just started leaning in on those folks who were the who were the professionals coming around us and alongside us in the process. And that was in the early going. And then eventually we our church, we leaned on our church. I started the first support group at my church for families with disabilities and and then went from there. But in that early in those early days, it's really hard. And then eventually Google came around for us again. But I as we found out, Google doesn't necessarily work, right? Not always. Yeah. It doesn't always have the answers. Marisol what about yourself? Oh, wow. So support for me has come in in many different forms. When my son was born, I'll tell you this story when he was born I went into the doctor's office. This was two days after our baby shower, and my sister and my mother in law were visiting from out of town. So I was really excited because I knew I was going to have an ultrasound. So they came and we were all cramped in this little room. My mother in law, my mother, my sister, my husband and me. And we're looking at the baby. And at the time, I wanted it to be a surprise. So I didn't know if it was a boy or girl. It was just baby Rose and everything was fine. They went back out. My husband, I went to see the doctor. I gave him my birth plan because it was time for that. Yeah. Three pages typed. I thought I had covered everything I could possibly cover. Yeah. And let me guess, you didn't cover everything. You know. He actually said, you know what? We're not going to need that. And I said. Well, what. Do you mean? I spent a lot of time and work on this. He said, You're going to have to go across the street to the hospital. There's something going on. And so I had placenta abruption, and I nearly lost my son. And my first experience with support was very scary because I didn't feel like I had support in the hospital too much until he was finally born. And then I leaned a lot on the nurses that were in the NICU. He was in the NICU for a month. They were an amazing support. And my family, of course, was an amazing support. When he was discharged, we started early intervention well, we had the early intervention. His come out to the home and all these different programs started calling us, making appointments. He needed this, he needed physical therapy. He needed eye doctor, he need all different types of specialists. So I was so overwhelmed, I decided not to do early intervention. We'll just do clinic we already have our appointment set up. I didn't feel like I had a lot of support with my therapist at the clinic. I'll be honest with you. And I started to slip into a depression so I started to have some postpartum depression probably nine months. He had craniosynostosis and he had a cranial surgery and that was pretty difficult. And I still felt lonely scared. And I had my family, which was an amazing support. But I also felt so many questions, so much so many different emotions, anger, fear. It was shortly after that that I started a playgroup locally because I said, This isn't working. I need to get out. I need my son to be out. We need to meet people because I'm like just too much in my head. And my emotions were were taking over. So I started a playgroup. I met some amazing mothers who I'm still friends with today. I'm so happy that they're part of my life. And then we started early intervention through our stay and that was at about 16 months. He was about 16 months old. He still had a number of things going on. My speech therapist is my fairy godmother. She's just amazing. She's such a blessing. And she was my son's speech therapist for feeding and my daughter's for feeding and for speech. And she was a huge support, encouraged me to get out there and do the playgroups that I was doing. She was proud of me and that made me feel good. And then when the early intervention program had a position available for a parent, I went and applied. She encouraged me to apply. So, so then I became part of being the support for families, but I still felt like I needed a lot of support myself. So it was kind of a strange moment I was learning a lot. I felt like I needed to learn a lot from my family, but at the same time I was helping families. So and that felt inspiring. And motivating. And so I continue to do that. When I was about a year into the program working for the program, I was pregnant with my daughter. I found out that our prenatal lead that she had Down syndrome. And so I already was a little connected, but I wasn't familiar with any children with Down Syndrome at that time. So one of my coworkers was actually the IT person there has a child with Down syndrome and he encouraged me to look into their local Down syndrome organization. And that has become a huge resource for me. And my family and having that support. So I've had support come in a lot of different forms, I think. Yeah, I think I think we all have and I, I always think back and I again, you know, you start to sort of start this journey and, and most of your support does come from your medical team because. Right. That's how you kind of get into this. And, but honestly, I have found some of the best support being from other parents. And so then when I could talk to them and ask some of those questions that maybe I was embarrassed to ask my pediatrician or my audiologist, like she's my how do I keep these hearing aids in this kid? You know, like like he just won't do it. Or, you know, some of the low moments where I remember, you know, almost physically like restraining him to put the hearing aids in and him crying and me crying and and it wasn't until you could talk to somebody else. And they went, you know what, I've done that, too. And and this is how we kind of move forward or this is how we think about it, that it really it really kind of helped with some of that. So so I know you guys kind of said a little bit, so I know your diagnosis came in utero. So mine was after birth I don't know about. So yeah, I mean, we they knew that issues were going on with my daughter, but it was a misdiagnosis in utero. But that meant that we were kind of on pins and needles through that pregnancy. And then as I said, when she was born, they knew something was going on. They just didn't know what. And so one of our first appointments after we got through the NICU, you and home and kind of on a roll, then one of our first specialist's appointments was with the geneticist to start that process of figuring out. And when our son was born, we had one day's notice that he was in very dire circumstances we were told very similar information. He probably won't make it through the birth process like you, Sarita. And if he does, we're just not sure how how he is, how he's going to do once he's here. He made it through the birth process, made it through all of the initial issues he was in the NICU for four and a half months. And when he came home, we had a NICU nursery, as they call it, with 24 hour nursing care. And I was the backup nurse to the 24 hour nursing care. I learned all kinds of skills. I never and that was my other group. Speaking of supports, those in-home nurses some of them became almost like family that were with us long term and they were such, such a needed support to help me know I was going to be able to do this. I had, I was the mom, I had to do it. And so the supports in all places and he was one of these miracle children, just like your cutie pie who turned five. My son is 26 and a half and he, we were told he will never walk, he will never talk, he will never know the world around him. And at about three months in we were even given the choice of a do not resuscitate order. So he's here 26 and a half years later, really glad we didn't. Choose. That route. But that support system is everywhere and it's the peer support. That's why I did the sitting at the NICU every day and, and going to more doctor and therapy offices that I could ever count. And but talking to parents that those peer to peer conversations. You know, I think I think maybe that's why I didn't find a lot of value in the online space of peer to peer support because it was never offered in person, you know, like I never had that that in-person opportunity. It was the conversation was enjoy your time. He'll probably pass away soon. And so there was that was never an opportunity to meet another family outside of social media. Right. And so that just seemed so impersonal. Of course, now we're living in a remote space. Everything is virtual. But but five years ago, I think maybe if I had had something more tangible, a family that I could touch or it may have been a different experience for me, but just in the social media space, I found absolutely no value in peer to peer support in a virtual platform. Yeah, no, that's it. So that kind of leads me to my next and last question that I have is that, again, I think we make our support as we go through this, right? We try to find it. Sometimes it works, sometimes it doesn't work. So you kind of talked a little bit about that, about like not being able to find maybe that peer to peer support within the social, you know, that social media piece of it. But have you guys found that you had to change your medical team or a therapist because they didn't feel like they were support or or maybe you when you started out the journey, you were a little bit less sure of yourself. Right. Because, again, a lot of this we're not experts in this, at least not in the beginning. Maybe towards the end, we you know, after you've been in it a while, you kind of are. But, you know, have you did you have to say to like, oh, you're not on my support team and. I know I have, right? I'm actually going through that right now. Yeah. My son's first doctor, his pediatrician, I had to change because I felt like she wasn't listening to my concerns and the difficulties that I was having with feeding him. I was trying to nurse him. But at the time, he also was tongue tied, so he wasn't nursing and she wasn't listening to me at all. So that was one of the reasons why I switched from her. But currently we're looking for another ENT for the same sort of reasons. I don't feel that they're really listening to my concerns. They have this diagnosis, they have their process and what they expect to do. And that's what that's what they typically do. But in my case, I would like a second opinion. I would like to look at, you know, other avenues if possible. So and I think that's important. I know for us, we've had to fire a therapist, and I say we and that's what I say... We fired them. Yeah. You know, we had a... after we after we transition from hospice is it's kind of when we transition into early intervention all of that was withheld from us in the beginning. And I was wondering that. Yeah, it was it was all withheld from us in the beginning. And we all we had was hospice care and the bereavement folks are who came to our room to talk to us at the hospital post delivery. The therapist who started coming to the house through the early intervention. She asked one day,"So how long are we going to feed him from this bottle?" He had he had reached maybe 14, 15 months. and I said, "As long as he needs to." Because he was born with bi lateral cleft lip and palate. And so we were looking for, you know, doctors who would be willing to close it. Yeah. Because again, high mortality rate, doctors didn't want to touch anything. So, um, and so I said, "As long as, as long as he needs to" and she says,"Well he can't eat from a bottle forever." And I said, "Well he can if he needs to." Right. And we had maybe two or three different exchanges just negatively with her. And I just, I reached out to the coordinator and said that is just is not working. It is not working. She has we clearly don't have the same goals for Elijah, so she is just no longer a good fit for us. And so, so we had to fire her and ask her not to come back. And, and even with, with physicians, we've had to just decide, you know, if, if you don't believe Elijah is worth the medical resources, then you are not the physician for us. Because we want a doctor who's willing to at least explore. Yes. The, the opportunities for him. And so, so we've had to fire doctors too. But but I'm empowered now to do so. I think that's a part of the support. Like I yes, I think initially I didn't, I didn't feel like I could do that. Yeah. I don't have that problem now. Yeah, I'm sure you don't. And same thing for us. Very similar to what Sarita is saying. And nurses, too. We with home nursing care we, I would sometimes know within a couple of hours, this is not going to work. And I'd just say, "Thank you and I'll take it over from here." Yeah. And just, you know, honor, honor the person, but yet take care of my child. Right. And children too, for that matter. But you, you learn that expertise is wonderful. But if the bedside manner, so to speak, and where they are viewing their their perspective and it's not taking into consideration the partnership for that child and the family as a whole, right? Yeah. Then it's not going to work. Yeah. So that is such a great point. I'm sorry that. Just their perspective, right? Like you get caught. You walked in already closed, right. To something other than what you think is the only solution then I already know you are not a good fit for us, but I have to have you thinking differently than that. Yeah. Yeah, absolutely. I yeah, I. Was kind of getting that too, is like, they just they'd see the diagnosis and they, they know what they're going to do because this is a diagnosis and this is what they always do, right? But every child is different. And every family has different needs. And so that is so frustrating. Yeah. So we're very supportive. Yeah. Well, and that's honestly that's what I'm excited about because I think that really segues well into our next conversation, we're going to talk about expectations. So it is it's that expectations of people when they walk in the door, when they whether it's medical, whether it's school, whether it's family, there's all kinds of stuff there. So yeah, what society has expectations versus what we do as parents and family. So thank you guys for opening your hearts and sharing with me today. I really appreciate it and can't wait to continue this conversation. 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.