Expectations

Join us as this season's co-hosts delve into expectations today. These expectations can be influenced from the perspective of the medical community, the educational community, and from society at large. We will explore how the expectations of your child with special healthcare needs has affected our personal expectations and the way we've viewed our child. 

Transcript

0:00

Welcome to Linked Together a family center program. I'm so excited to have you along as we share our stories What a great day to be with us. We're going to be delving into expectations today so these can come from the perspective of the medical community, the educational community from society at large. What I really want to know, how has everyone's expectations affected yours and the way you viewed your child? Maybe start at the beginning, right? So you hear a diagnosis, you sort of you get that information. And I think it your impression about what's going to happen begins at that very moment based upon the way that information got relayed to you. Right. So it's sort of colors that journey for us per se. So I. I don't know. Do one of you guys want to open it up for me today? And talk about a little bit about that, about when somebody said, you know, here's your diagnosis, here's your condition, here's what we're think's going on and here's what the outcome is or what we think is going to happen and what their expectations versus. We all have a little bit of perspective now. It's been at a minimum five years since five and a half years, and some of that happened and. Yeah. Tell me how that's changed over the time. Oh, I'll go ahead. Yeah. So in the last time we had a conversation, I mentioned that we knew day one that there was something going on with our daughter, but they didn't put their finger on it. They just knew that she was having challenges And so that set the stage for us. The, the un-diagnosis - diagnosis. And so therefore, they they weren't certain how to set expectations other than as time went on and we learned a little bit more. And she was receiving she had craniosynostosis as well and some other medical challenges. We were being told things like, you know, she'll she'll probably be able to graduate from high school with a special ed diploma with with we have that hope for her. Sure. And I remember thinking, well, I've got a bigger hope than that. I have bigger expectations that maybe we can overcome some of those circumstances. So that was Emily, our daughter. Then our son comes along and we are told the expectation he might not make it. Then we were told children who are in his kind of situation usually don't live one year, especially if they're on a ventilator. And the expectation of you can make a decision to place a do not resuscitate order. He's in such dire circumstances if he does live, he won't know the world around him. He will never walk or talk. So now I'm going to fast forward because we had different hopes and expectations and prayers for our two children. Our daughter's 29. She has a master's degree in public health. She's married, she lives across the country from us in California. So she far surpassed getting that special ed diploma. Our son is 26 He still lives life with a trache and a feeding tube. He uses assistive technology for communications, but he is also an honors graduate from high school and an honors graduate from college and has a college degree. Now I'm going to talk about the world expectation because I do have this long journey. Yeah. The world's expectation is when they look at him, they see visible disability. They see this struggle to understand how to communicate with him in this fast paced conversational world of ours. And he has the high hope and expectation for employment. But that hasn't happened for him yet. So we also are working to help him towards that high expectation. But there's a lot of world expectations and expectations that most people don't see ability, don't see potential. And we we're constantly in the role of advocating you must have those high expectations because we need for them to meet as far as their ability to allow. So I kind of setting the stage for that whole broad range. But that's that's really that's been one of our biggest things is holding to those high hopes, expectations and prayers. Yeah. Yeah. And I love listening to your story, Linda, every time because it gives me a perspective of what may come for my children in the future. When my son was in the NICU before he was even born when I was in the hospital, they kept telling me it's touch and go touch and go, what does that mean? Oh, my God. I had no idea I was so nervous. And then when he was in the NICU he had a brain bleed. And they kept telling me that to expect some delays. We don't know to what degree that will be, but you can expect some delays. It was a grade level two, borderline three. So he just did have some minor physical gross motor skill issues. Still does, but they're minor. But that set the stage for me, you know, and I didn't know what to expect at that point. I didn't know whether I should have high expectations or low expectations. I didn't I didn't know. And I was a parent that questioned myself a lot at that time when he was younger. But I did eventually realize that, you know, he he's got a future ahead of him. Of course, he's going to do great. He's going to do fine. I have higher expectations now. Now that I know a little better, I know how to advocate for him more. And I don't doubt myself as much. He is in the gifted classroom right now. He's ten years old. He reads at a seventh grade level. He's doing amazing. We struggle with math. But but a lot of my focus on expectations has been more education wise than hospital. So although with my daughter, when I was pregnant and they told me she had Down syndrome, the expectation was that I was going to terminate and it was I was given an option. You need to decide now. You have four weeks to make this decision. It was very scary. And of course, I decided that I wanted her that we had planned to have a child. And this is what we're you know, we're going to have my baby. Like, there's was no doubt in my mind at that point. But the way that it was delivered was she's not going to be doing this you know, she's not going to be capable of having a job on her own. She's not going to be capable of talking perhaps, or being understood intelligibility will have struggles with so many different things when you're you know, you have this little baby who hasn't even entered the world yet. It's a very scary thing to not and not know what is going to be happening. And everybody is feeding you doom and gloom. And so it really does impact your emotion and how you perceive this moment. And so when she was born, I had already gotten in touch with our local Down syndrome organization. And I met some families who had children with Down syndrome. I wasn't nervous anymore at that point. I knew we would be fine. I've I've met lots of families. I've met their little ones. We can do this. And a nurse came into the room one day. We were in the hospital and said,"Did you know prenatally that she had Down syndrome?" And I said, "Yeah", I didn't even ask a follow up question. But I knew from her tone exactly what she was getting out. And so now fast forward, we're in kindergarten and my expectation is to be fully included, but we're not there yet in our state. Unfortunately, we're not fully included. So she is in a blended classroom. But every IEP meeting, I, I am always telling them this is where, where my expectations are. So if you're not up there, then let's figure out how to get you there. Yeah. Yeah. You know, for me, I think if I'm completely honest, I'm try not to get emotional. I know my initial it's funny that we talk about the information that we're given. Yeah. It sets the stage for what we expect being told that there was nothing but death. Yeah. Don't expect him to survive. Don't expect him to be born. Just don't expect it. So I didn't. My expectation was I was going to miscarry, or he was going to be stillborn or he was going to be born. And die shortly after birth, because that's the stage that they set for this story. Right it wasn't until I realized that even though science statistics and all of this says that this is what you're supposed to expect, I can expect something different, even if I still end up with that outcome. Absolutely. And that's what I needed for me. I had to know that even if he passes away, I can still hope that he doesn't. Even if he never is born. I can still hope that he is and that that's the assurance that I needed. And that's when my expectation started to change, when I knew that it's OK for them to give me what they know or what they think they know. It's OK for them to give me the medical statistics, but I can still hope for something a different outcome. And so I just expected him to be born. I expected to have a heartbeat. Every time we went to the doctor's office, I expected for them to do the ultrasound and still see movement rather than initially. When they gave it to me, I went and expected him to not be there, you know, not be alive. And so and so every doctor's visit I went in expecting him to be alive. And he was every doctor's visit, I went in expecting for a heartbeat, and he had one. And so we did have the opportunity to see him born and now he's five. Yeah. It also just. We learned that the prognostications of physicians are not always right. Yeah. And the younger a child is to make this lifelong prognostication and determination. I just learned very early on and thank goodness we had our daughter to learn, learn, the first time around and so that we were even stronger the second time around. You don't know everything. And for us, we leaned in on faith it was between God and Mac. And as much as we could do to bring the wisdom of the medical people around them, but God in Mac to determine when and how Mac was going to live life. Exactly. You know, and I think it's you know, when you when you think about it just again, setting the stage every time you experience something other than what they've prepared you for, they just give you another expectation. You know, it's like, you know, you just. Oh, so he did he was born, OK, so now you can expect him to not be viable right? You know, so to me, you met this expectation and we weren't expecting that. But now here's. Another look and here's another one. And and so that's what even even now, that's still what we experience. You know, we we just uncovered a new diagnosis for him he had to have an ultrasound and it revealed something that we didn't know that he had, OK? And so our pediatrician sent us to orthopedics and the orthopedic doctor said,"Oh, so he has Trisomy 18?" And I said, "Yeah, he does." And he says, "So I'm thinking we probably shouldn't worry about trying to fix this. I mean, for a kid that probably wouldn't walk anyways. I mean, why would you want to put him through that?" So there's that low expectation again, And what's Elijah doing now? A week ago, week and a half ago, Elijah started crawling and pulling up by himself. You know, he's taking stuff he can hold on and take steps from point A to point B. So you don't, don't fix his hip dysplasia, it's OK. Elijah says I'm gonna still walk. Yeah, I'll walk with the hip dysplasia. He's proven those physicians wrong. He is! They set up the stage for you. They set up the end before the beginning even started. Yes. And that is just wait. Say that again. That was beautiful. They set up the end... They gave you the end before the beginning even started. That's it. And that is such a difficult way to bring a life into this world. That little baby is just as valuable as any other child born. And I think that's that's all we wanted. We just wanted them to see him as valuable as we did. Yes, that was it. Yeah. You know, they they told us it's not worth the medical resources like they did. They said those words to us and all that's all we ever wanted was for them to see him just like the unborn baby that we did. Like, don't don't dismiss him before he's ever even given a chance. And so that's that's that was our our dealings with expectations. Yeah. That was a lot. you made that sound like. Yeah. Yes. And that's a lot to work through, right? Again, because we trust medical professionals, which we should but I know we've talked about this in the past outside of this conversation, but about that idea of that, you can give statistics, you can tell us, you know, the probability is not good here, but there always is still hope. Yes. You know, or even what that time looks like. Now, again, maybe you're thinking living in minutes, you know, when you meet those expectations and look and see what that looks like later. But there is always that hope. And that's when they strip that all away sometimes. And when they're dealing with rare conditions, which is what we represent to one degree or another. I mean, my son is in the ultra rare category. There were 20 people diagnosed with what he had when he was born. How did they know those expectations? They couldn't know all about that diagnosis because there was so little to go on. There was one journal article, bit of research, and I also just cannot forget when we were we've used the word transition a lot. So this was a transition where he was getting ready to start kindergarten and we went to the planning meeting when he was still in preschool in the spring, ready for kindergarten where his big sister went to school. And it was a meeting of 35 people, including one of the lead people in the county for special education. And we brought our doctor our nurse my mother was there, my husband and I were both there and all these professionals, and we decided we're not going to let them start to set the stage we're going to set the stage. From the very beginning he was there, his sister was in circles around the room. He had his feeding pump going. He was suctioned multiple times during the meeting and they saw all of this. And I said, I want to tell you something."What you're looking at is a little boy who's going to grow up and going to go to high school and he's going to go to college. He's going to work and he's going to pay his taxes and he's going to help his mom and dad when they get old." But I just we had to set that stage for them because we knew that they were seeing something and thinking, there's never been a student like this in our entire county. And we were one of the first students in that entire county. He was one of the first students in the county who was going to full nursing care. But we just needed to just help them see possibility. And that's such a great point. I know we're probably getting close to time, but that's such a great point. We we actually did that exact same thing when we learned that Elijah was eligible for to transition into our school system. We learned a year before he was eligible, I reached out to our school district and I did that exact same thing. I called I emailed the superintendent and I said, you know, hey, you know, we know about this program. We know that there's a process, but we want to prepare you just in case he's accepted. And they invited us in. I ended up speaking to the entire special education department. They said, "Can you throw some slides together?" Yes I can! And but it was it was just that, because if you if you if you Google search his diagnosis, it's scary. It's scary. And so we wanted them to see him and have that opportunity to interact with him. Rather than look it up on a piece of paper and decide that we probably shouldn't bring this kid in. And he was accepted. And that's where he's in pre-K right now. Wonderful. Yeah. We well, we were choosing schools for Jack, our oldest. We we had decided to not go to the public schools. We went outside because it was expectations, because every time I would bring him in there, you know, deaf kids have a poor statistic for reading for language. There's lots of language delays and stuff like that and very real facts, right? Like I do not dispute those statistics and all of that. But every time we would talk, they would say, oh, he's doing really good for a deaf kid. And I'd be like, yeah, but how's he doing as a kid? Like, let's take. And so their expectation was that, well, geez, if he meets and exceeds those statistics, he's doing really good. And I was like, well, no, but what if he's, you know, we want him to exceed those. We don't want that to be his sentence or, Only standards. What he's going to do. So we found success in actually bringing him and sending him to school someplace else where there was zero expectations about what, you know, the his reading level should be. When he graduated, they didn't know what that statistic was. So and have you mentioned, Molly, what your kids are doing now? Yes. And my kids are older. I have my oldest, Jack. He's graduated and he's working as a civil engineer. I know he's all excited about that. And yeah, so he can take care of his mom and his dad someday. Well, we need that repay all those therapy visits and all of that. Right. Like all that effort. And then my younger two are in college right now, so. Yeah, yeah, it is amazing. And again, it's not even when I talk about expectations, it's not that I want to put my kids in honor student on the back of my car or anything. Like that. It was never about that. It was, what is their potential? Where do they fit into society? What does he want to do or she want to do? And where do they fit? You know, like it's not society saying, Yeah, we just think of your ability as this. And so that's what you guys are. That's where your value is. But it's so much more. And so that's what we always wanted it to be, was that honestly, at the end of the day, we just wanted them happy. And, you know, doing what they wanted to do. Right. And not those soft expectations of of a low of a low expectation. If you have low expectations then you have nothing to work towards. Yeah. You have nothing to rise up to. And we need to have our children rise up to their full potential. So, you know, the schools or health care expecting the worst, expecting nothing. You know, it's it's sometimes deflating and you have to push them to understand that there's so much more there's so much potential in your child. And, you know, having them understand that it's not, you know, maybe you have to do some learning. Maybe you need to switch some of the way you think or you approach your education format. For this child. But there is so much potential. Yeah. So and honestly, I think it's conversations like this that help people understand that and see it in a different light. And I can't wait to continue some of these conversations as we continue down this journey together and learn more from each other. Thank you so much for sharing. There was so many beautiful things said today, and I'll take them with me. So thank you. Thank you. Thank you, Molly. 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, the official views of nor an endorsement by HRSA, HHS, or the US government.