#040: Down Syndrome Awareness Month: From A Mom's Perspective

In this conversation, Liz Church and Dasaya Cates discuss the complexities of parenting a child with Down syndrome, emphasizing the importance of early diagnosis, the need for informed healthcare, and the challenges of inclusive childcare. They explore the stigma surrounding Down syndrome, the significance of using person-first language, and the necessity of self-care for parents. The discussion highlights the evolving understanding of Down syndrome and the importance of community support and empowerment for families.

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- Liz Church, Host + Producer of The Atrómitos Way

Transcript

Liz Church: Welcome to the Atrómitos Way podcast. I am your host and producer Liz Church. In our latest introduction to the Atrómitos team, to the Atrómitos Way podcast, we're doing something a little different this episode to shine a light on this month's awareness. October, among other awareness declarations for the month, is also known as Down Syndrome Awareness Month.

Liz Church: And as quoted by the National Down Syndrome Society. It's a month to raise awareness and celebrate the many abilities of our loved ones with Down Syndrome. This is a time to continue to break down barriers and focus on promoting advocacy for people with Down Syndrome. And we're doing the same in this episode with our very own D Cates.

Liz Church: She is Atrómitos' Bid and Proposal Coordinator, but she's also a devoted mom to a child with Down Syndrome. And with her permission, I have the pleasure of talking to her about their lives, the challenges that they've faced, and how she's overcome them. So, without further ado, Hello! Hello! Let's go ahead and just start with the first part of this discussion.

Liz Church: Talking about healthcare and Down syndrome and, you know, what you discovered in your pregnancy with the benefits of early diagnosis and all the things that followed that. And 

Dasaya Cates: here Um, I think early diagnosis was 1 of the things that helped me prepare the most and I, I know that sometimes people are binary on this.

Dasaya Cates: They either really appreciate having access to early testing. And some people are just like, no, absolutely not. I don't want to know. And I think that's a A personal choice, but I think, but for me and my situation, it really helped me to plan. I'm a researcher and a reader at heart. So I research and read everything and just sort of having that time to like, sit with the understanding that things are going to be different than what you thought they might be.

Dasaya Cates: Like, you know, I don't think anybody goes in to their pregnancy, thinking about all of the things that may not be what they expect. I think some of that does cross your mind, but you know, the, the statistics are More so that, you know, everything's going to be perfectly normal and healthy. So I think when, you know, confronted with that and you have the opportunity to do something like noninvasive prenatal testing, it's great.

Dasaya Cates: And, you know, again, I think allowing me to be prepared and talk to people who. Had information. For instance, I met with a geneticist. I met with maternal fetal medicine specialists. So That preparation was key for me and then I felt like I could just really focus on Okay here's the joyful part that a baby's coming and like trying to prepare my mind for being a parent because I think that is In and of itself a huge job.

Liz Church: Yeah. Yeah, and obviously When you are a parent you have that moment of like I have a, I have a little human that, that they're relying on me for the rest of my life. And it's, that is a really scary thing to go through. And one thing that we were talking about, like preparing for this is that, I mean, like there's, there's only so many resources that you could have when you're becoming a parent.

Liz Church: But then if you're becoming a parent with Down syndrome, there's a whole avenue of things you really unprepared for. If you don't ask the right questions, you feel like You're alone in this kind of instance. And when you were talking about like having those questions and like being prepared, that's that, that research that going through the things that you were looking at.

Liz Church: And one thing you had revealed to me is that many doctors still today, they're not fully educated on down syndrome and they see it as a bad thing. So they deliver it as bad. Bad news. 

Yeah, 

Liz Church: and it was like I that's that's really upsetting and disheartening because that already puts the parent in a place that they in their position that they feel that they cannot do it, or they cannot do it right, or that there's something wrong in a way that really also pushes that stigma of what happens with children with down syndrome, which is also, um, Dishonor to children with down syndrome because it's just, there's so many different types as well.

Liz Church: And then, and I say so many, because a lot of people just think generally it's, you know, one type of syndrome. Can you go a little bit into depth on that? Cause you had, you're the one that educated me on this. And I'm like, I had to be like, all right, let me go look more on this. Yeah. 

Dasaya Cates: Yeah. I mean, to your point about.

Dasaya Cates: how the diagnosis is delivered. I think if there, you know, is one thing that I could just really say to the medical community is to think about how that that conversation may be perceived and like what parents are going to be internalizing as they get these, these diagnoses. And I, I was surprised when You know, I went through this journey of being pregnant with my son at how much doctors didn't know, you know, I think we kind of regard doctors as, you know, having so much authority, I think, in the medical space, um, you know, not withstanding the fact that there's so many specialties and they don't certainly don't know them all.

Dasaya Cates: But I think even it was surprising to me. To, you know, have to say things or like really advocate for things that I felt like, oh, wow, I feel like you should know this and you don't. Um, but, you know, underlining the conversation I think that that specialists have in this, you know, I can't tell you how many.

Dasaya Cates: Moms and dads that I've spoken to where a lot of the times the first question comes after the diagnosis delivered is, do you want to continue this and so, you know, you have parents who are already like, you know, they're processing this diagnosis and then on top of that, it's layered on like, are you even sure that you want to have this child?

Dasaya Cates: And I think, you know, it just stems from years and years of like people being in a space where they really. either didn't know about a lot about it or they're using like dated information about people who have down syndrome. People who have down syndrome are just thriving so much. You know, they've also benefited from advancements in medicine.

Dasaya Cates: They're living longer. Um, you know, they they have access to treatments and the research is getting better, even though, you know, we still don't really know why it happens. We know what happens. We just don't know why. Um, And so I think, you know, kind of delivering it in a way that it makes it feel like it's, it's, you know, like the worst thing that could happen, um, like you said, is, is a dishonor and kind of a disservice to parents because a lot of people don't, don't feel that way.

Dasaya Cates: You know, I won't say that it's easy because there, there are going to be a lot of, a lot of speed bumps, but it really wasn't the, I don't want to use that language, but it, you know, for lack of a better term, it really wasn't the, the death sentence that, 

Liz Church: you 

Dasaya Cates: know, I was, I was first given that it would be.

Liz Church: Right. Right. And, and that kind of, that also goes into that, that stigma, like what I was saying with like the definitions and the, really the type, cause syndrome is. different based off of each person. 

Dasaya Cates: Right. 

Liz Church: And we all, if we're not, we are not educated on the topic of a certain thing, we all assume it's all one same, similar thing.

Liz Church: So when we look at the way that past data has shown Down syndrome to be, we have this preconception of like, like you said, that idea of a death sentence, that your child could not have a normal or happy childhood. Like it's going to be. Something that's going to be very wrong with it. And, and that's unfortunately that part of that stigma that goes with it, that I think from what I was able to find, especially with the resources that you found, like things are improving in a way where there's more understanding, more acceptance, and also to, Eradicate some of that ignorance that's behind it because of the old research When I was looking at some of the things when you were showing me that like the different types of down syndrome I'll put this in the notes because like you you and I were talking like not a whole hundred percent of an expert but like Yeah.

Liz Church: This is some things that I learned. Yeah. You know, when you were talking about it, but there's different types of Down syndrome. Like what happens when chromosome 21 breaks off and only one of the initial cell division. So some of the cells might have 46 while others might have 47. There's a variation with these different things.

Liz Church: So I think when. You look at the word syndrome. Yeah, I think 

Dasaya Cates: that's the key for people to remember. And I'm, I'm glad that you brought it up that way. And, you know, of course, yes, disclaimer, I'm not a medical professional. I'm just someone who's been dealing with this for 6 years and living in the community of wonderful down syndrome community that we have here.

Dasaya Cates: But, you know, you're right. Like this, the reason it's called syndrome is just because it's a set of conditions and. Not every person with down syndrome experiences it the same way. You know, yeah, there are some things that occur more than others, but, for instance, a lot of babies who have down syndrome are born with complex heart conditions and we.

Dasaya Cates: While he did have, uh, what's called a patent ductus areosis, which means the little hole in his heart that, you know, where your mom is breathing for you. Um, it closed up a couple days after birth, his didn't close up. So we had to close his with a device. But you know, that's just, I think one example of how this syndrome occurs differently in people.

Dasaya Cates: Um, and to your point about the type. So I'll break this down for you. Like, Trisomy 21 definitely is the most common type, um, and that's where the 21st chromosome just like duplicates itself across every cell in the body. Then we have a type that's called translocation. And so, 21 attaches itself to another chromosome and the total number of chromosomes remains the same, but there's still an extra copy of 21.

Dasaya Cates: And then there's mosaicism, um, which is another lesser common type. And this happens when chromosome 21 breaks off in like one of those early cell divisions. And so some cells have 46 chromosomes, some have 47. And so, you know, again, it, it happens differently. And I think part of the need for additional research is to find out why.

Dasaya Cates: But yeah, I'll leave that to the embryologists and the geneticists. 

Liz Church: Yes. And I think I found, I found two that were really, really helpful and two resources, two resources are really helpful in breaking it down. They hit infographics. I was like, this is phenomenal. So I'll share those in the episode show notes.

Liz Church: That way for folks, they can look more, see more and more in depth on it. But to kind of pivot into a little bit more when I was talking about like the different terminology was the right way that you put it earlier, breaking apart past assumptions. And one thing that was infuriating is a lot of, how can I phrase this without phrases correctly?

Liz Church: Looking at somebody and assuming and saying to yourself or to others that they have down syndrome and correcting to establish person first empowerment. And it wasn't until you had said that to me that you were, we were talking about this, that I was like, I actually didn't think about changing the narrative, the way that we interpret things.

Liz Church: And then like the, I had had said like, okay, this is something that like. We've all done because that's like the perception of like, how does someone appear to us and I had to train myself to get out of that habit. And unfortunately, it was just because of something that was taught to me. And I think by changing this, this does help kind of break that harm to also give those, those folks in the community that empowerment to be themselves.

Liz Church: Yeah. And actually be like, I'm an individual. I'm not my, you know, I'm not the condition that I, I have. So it's kind of going back into like not stereotyping folks to ensure that they have the same respect as another person would. 

Dasaya Cates: Yeah. I definitely agree with all of that. And I think that it is applicable.

Dasaya Cates: Across the entire community of differently abled people in that, and I, and I also say, I think the language that people use and are comfortable with, just like anything else is going to vary. Right? Some, some things people. Aren't bothered by, I think just. For me, um, and maybe this is because I'm very much an empath, it's important to me to recognize the person first.

Dasaya Cates: And that's why I've also adopted language, like, differently abled, you know, there are a lot of things that people in all communities can do that others can't do. And we just, we do that differently. But I think framing it with the person first language, um, is critical to, to actually recognizing the individual for who they are, um, breaking down those stereotypes.

Dasaya Cates: You know, I think I shared this too. There are times when my son. His name is Aspen, by the way. He surprises me with, with certain things that he does. You know, for example, his speech is delayed. So his expressive language is a lot less further along than his receptive language. So, you know, it dawned on me one time that he was picking up on, like, context and sarcasm and things like that, because sometimes he'll give it back.

Dasaya Cates: And I'm like, But why would I think that, you know, that things that are going on in his mind are any different than, you know, an average six year old sometimes. I think it's just, you know, having that, that mindset, you know, again, because I've even had to stop myself of like, Oh, he's not ready for that yet.

Dasaya Cates: Or you can't do that yet. And then he proves me wrong every time. So I think when we're, we're open to that, then we can more readily see that in other people. 

Liz Church: Whenever he joins us on our calls, I love it because he's just so happy and just, I love when he comes over and he just hugs you and he's just hanging out with you.

Liz Church: He's a fantastic little guy. I love him. He makes me smile every time we have our meetings. So kind of like, let's close out talking about the healthcare segment. You had said you'd recommending to see a specialist at a Down syndrome clinic. And I, if you wanted to go in depth on that, that would be fantastic.

Dasaya Cates: Yeah, so I think you, you know, as a parent, you have to recognize that they have higher risks for certain health complications like diabetes thyroid issues, hearing loss vision issues. So, when we. Made it a point to continue with the Down syndrome clinic here in Columbus at Nationwide Children's Hospital, which is phenomenal by the way, you know, just having a specialist who can walk through all of those things and remind me as a busy mom, like, Hey, gotta make that appointment to see the ophthalmologist.

Dasaya Cates: Um, you know, it's just important to keep on a schedule of screening screenings, um, throughout their lives because they do need to be seen by those specialists. 

Um, 

Dasaya Cates: And additionally, in order to, you know, I think, address the developmental delays, there'll be speech therapy, occupational therapy, physical therapy, um, just to, you know, work on mobility issues.

Dasaya Cates: Um, so I, I will say that having, um, a specialist either at a developmental clinic or a doctor who's been seeing Down syndrome patients for a while and are, you know, keeping abreast of some of the latest research is very important. 

Liz Church: And it kind of also goes into our next little segment of talking about this, whether you're going to seeing a specialist, it's also talking about inclusive childcare.

Liz Church: So this is something that I didn't realize how. Difficult and expansive it was and not in a way of me being ignorant, but like I for some reason thought there would be a lot more Options, I guess if that's the right word for it. So talking about how Childcare in the United States is hot mess for lack of a better word 

Dasaya Cates: completely unsustainable the path that we're on right now.

Dasaya Cates: Yeah 

Liz Church: Yeah. And I, and I also have to give the disclaimer, I do not have children. So like, this is completely foreign to me and I'm not going to pretend that I'm wholly knowledgeable on it. 

Dasaya Cates: I mean, I think you, you said it all in the beginning when you said a hot mess, because even for typically developing children, you know, parents are just struggling with this.

Dasaya Cates: And one of the things that I took a look at in preparation for our talk today, just because, you know, I'm also a data nerd. So I wanted to get some statistics and I took a look at and I know that you'll, you'll share these, these links with listeners. But just taking Ohio, for instance, we have nearly a million kids who are of the age that they need childcare centers.

Dasaya Cates: So almost 70 percent of them who are under six have both parents who are working. We don't have enough workers to care for those kids. The ones we do have are not being paid enough. You know, we don't have enough centers to like really cater to them. And then, so you layer on top of that, some children who have special needs, whether it's medical conditions, Down syndrome, developmental delays of other types.

Dasaya Cates: And so just, you know, acknowledging for families, children who have those special needs. It's, I think, you know, incrementally worse because the demands that they have. So if we don't have medical professionals who still don't understand everything about Down syndrome, like we are expecting child care workers who are, you know, You know, unfortunately, poorly paid to try to keep up with this research as well, and then not to rely on outdated assumptions.

Dasaya Cates: They're assessing children as to whether or not their program is a fit for them. So, you have those things working against you, you have sort of ignorance and how to include those children in child care programs. And so, because people don't have that information, and they feel like they can't do it. You meet that resistance, regardless of whether or not, um, they have to.

Dasaya Cates: And so, you know, I'll just I'll just underline that as well. You know, for any parents who may be listening and sort of wondering, you know, it is it is the law, the Americans with disabilities act does cover child care and it doesn't allow for discrimination of children have special needs and child care facilities.

Dasaya Cates: So, you know, there's, there's that, and they, they do have to comply with that. And so I think it's the legal thing behind the law, you know, it's just as, as parents, we do have to be aware of it too, because if you get that pushback from them, you know, a lot of times you might just be tempted to say, okay, well, that won't work for my child.

Dasaya Cates: Well, You know, wait a minute, there isn't really a substantial accommodation. I'm asking you to make for my child. So it's a balancing act and and it's a knowledge and information game to some degree to, you know, just even if parents could could do it, I think, you know, financially, you Can't always like, I'm not an early child care expert.

Dasaya Cates: You know, I know a lot of things. That's not one of them. I'd like to leave that to the professionals. So, you know, I think it's just better for children to have that socialization when they can, you know, everything that we can do to. Help parents who want to work, allow them to work and not have to make that choice.

Dasaya Cates: I think we'll be better for it as a society. 

Liz Church: I wholeheartedly agree with that. Absolutely. So then actually let's kind of like dive into the, I don't want to say this, like the fun part, but like, I really loved what the things that you gave me when I asked you, or what's important as your role as a parent, like that helps you get through so that way you can support Aspen.

Liz Church: And. The big thing was, you know, staying mentally strong, your mental wellness, physical wellness, emotional wellness, and things like that. So what advice do you have for other parents that go through this? What do you do that you think would be helpful for others? 

Dasaya Cates: I would say the first thing is to ask for and accept help.

Dasaya Cates: I am not good at that. I'm still learning that. And unfortunately for me, it has gotten to the point sometimes where I was really overwhelmed before I was sort of like, okay. Okay. I'm crying uncle. I need the help. Don't be like me and accept the help, you know, recognize that you need that support and seek it out.

Dasaya Cates: So, you know, even in spaces where. You don't think that you could normally be that honest. Now, obviously you have to judge whether or not, and you reveal certain things and how far you can go, especially in like in the workplace. I feel like I'm super fortunate, you know, that I have understanding people around people who have children or understand that.

Dasaya Cates: You know, family is very important, very rooted people. Um, so I don't have that issue. And I think that if you are a person who recognizes that that won't be a deterrent for you to have some flexibility or asking for help, I say, definitely reach out and go for that having that village and that network is key.

Dasaya Cates: And this is why earlier when we were talking about health care, I am just such an advocate of having a specialist if you have 1 near you, because I think that extends to other services. Those people are going to be. Heed into what's going on in the community. So, if you have, like, a down syndrome community in your area, or if you don't, you know, find one online, talk to other parents, there's so much sharing of information.

Dasaya Cates: And then 1 other thing it reinforces is just that I'm not doing this by myself. Other people have walked this before. They have advice for me. They've. Like figured out all the things and they can say, Hey, here's some things that you can try. I think that's really important. And then just sort of having people who get it, you know, I, you know, experiences also with some friends who have children who have an autism diagnosis as well.

Dasaya Cates: And there are just certain things that, you know, when we all talk to each other, we're like, yeah, we get it. We get it. When. You know, we're like, oh, we have to leave the party early because we're all on sensory overload. Okay. Bye. It's been great. You know, so

Dasaya Cates: yeah, but I think, you know, it's prioritizing that self care. Well, being the other obvious things, right? Eating well, sleep. Sleeping, getting your exercise. Remembering that as you become a parent, regardless if your children are neurotypical or neurodivergent, you know, to, to make time for the things that you love to do, those things that you are passionate about, taking some time to yourself.

Dasaya Cates: Sometimes for me it's a nap. I, I seriously, I, I know I told you this before I tell people naps are my superpower, right? I do them very well. I love them. I call myself a gangster napper and it's real. Like, I love that so much. It is so real. I don't know what it is about napping, especially if you can get one, like on your lunch break or something in the middle of the day.

Dasaya Cates: And it's just the most, So yeah, just, you know, finding ways to rejuvenate yourself because You know, parenting is hard, and parenting a child with special needs, it's even harder. And I, you know, I just think you need to try to keep yourself in, in top form. 

Liz Church: And when you were talking about having hobbies and passions, what's your favorite?

Liz Church: What's your favorite hobby? Like, besides sleeping, you can't say sleeping, no naps. 

Dasaya Cates: I know. Mostly creative stuff. So, I write, Bake. Um, I am, I am a big fan of interior design too. Um, actually doing a refresh on a couple rooms in the house now. So that has me a little bit energized. Um, yeah, I do like to work out like, you know, Like taking a great hike every now and again when I can get out.

Dasaya Cates: So yeah, just using those things to connect with myself. I'm definitely a water baby. Being by bodies of water is like really refreshing for me too. 

Liz Church: So. I like all of those. We should, when I start, like, when I finally move, if that happens ever, anytime soon, when I finally move, I'll send you some things I'm thinking about from my rooms and, like, get your input.

Liz Church: That would be fantastic. I would love it. 

Dasaya Cates: Now, be careful because I'm in my maximalist era, but, like, yeah. Right. Yeah. Callers and yes, so. 

Liz Church: Oh, we got to talk about that offline. I can't, we can't expose everybody to it on the podcast. Yes. I'll make a note of it after all, after we're done. But then, as we close on the things, what is something that someone had said to you that changed your perspective on everything that we discovered that, well, that you discovered and what everyone now has discovered?

Liz Church: What's something that has changed your perspective? 

Dasaya Cates: Gosh, there's been so much, but I think one of the things most recently, so I follow an Instagram account. It's called We The Urban started by Willie Green. He's a writer. And one of the things he shared was that there's happiness and letting go. And I 

Dasaya Cates: think there are a lot of ways that you can look at it, but I think especially as it relates to my parenting journey and my personal growth journey, I see it as, like, giving myself permission to move into a place where I am completely open to the possibility of.

Dasaya Cates: Of what things are without having expectations. 

Liz Church: And 

Dasaya Cates: I feel like I've been happier that way. 

Liz Church: The art of letting go. Good stuff. Thank you for coming aboard and talking to me, D. As always, it was a pleasure. Thank you for listening to this episode on The Atrómitos Way. This podcast is a production of Atrómitos, a boutique consulting firm with the imperative mission of creating healthier, more resilient, more equitable communities. Follow the show, leave a review. You can find previous episodes and more content on our website, atromitosconsulting.com/atromitos-way. That is (a-r-t-o-m-i-t-o-s). We'll see you next time.