Down Syndrome Series: Getting The News

CAVANAUGH: This is KPBS Midday Edition. I'm Maureen Cavanaugh. When a child is born with a disability, parent vs. to change their expectations. But, once the difficult process is accomplished the future can once again look full of promise. And that's the case these days for babies born with Down syndrome. All this week, we'll be talking about what science and education can offer to children and adults with Down syndrome. And we'll see this through the eyes of San Diego parents who created support and information engineers. My guest is one of those parents, Colette Cosky. Colette is the mother of an eight-month old boy, Dexter; he was born with Down syndrome. Welcome to the show. COSKY: Thank you for having me. CAVANAUGH: And just so everyone knows, Dexter is here as well. He's sitting with mom. Can you start us off by giving us sort of a down syndrome 101? COSKY: In the simplistic terms, it's really an error that happens in cell division, and it's an extra copy of the 21st chromosome. CAVANAUGH: Okay. And what does it affect? What kind of problems or challenges does a child born with this syndrome have? COSKY: You know, it ranges, so there's definitely -- it can go from mild to severe. And it really -- when you're looking at it, there's some cognitive delay issues that might happen, as well as some developmental delays. CAVANAUGH: And there's a -- particular facial features that people can Down syndrome have. COSKY: Yes, that is common. CAVANAUGH: Now, the age of the mother is often seen as a factor in whether or not there is a risk of giving birth to a child with Down syndrome. But that wasn't the case with you, it was? COSKY: No. I'm not a spring chicken, but I definitely wasn't in -- I wasn't in a risk age where I automatically was given, you know, the information from the doctor, like, look, we should problem does an amniocentesis. CAVANAUGH: You were given a one in 64,000 chance. COSKY: Yes. MAUREEN CAVANAUGH: Risk of having a Down syndrome baby. COSKY: Yes. I had the second screenings that came back, the second trimester screenings, and it was a 64,001 chance of having a child with Down syndrome. CAVANAUGH: What did you know about Down Syndrome before Dexter was born? COSKY: Nothing. I knew what media had given me so far from television shows, I growing up, and seeing corky, to the TV now and seeing -- it just honestly, I will feel hike it's gone in the right direction, but seeing glee. CAVANAUGH: What kind of impression did that leave you with? COSKY: It was very simplistic, and I think overall, when I walked into the situation, just going back to those times, it left just such a simplistic, and I didn't know -- everything that was really involved in it. THE COURT: Right. Now, when you gave birth to Dexter, how did you learn that he had Down syndrome? COSKY: When Dexter was born, and I had him for -- he was born in the night, and I had him all night long, and into the morning, and in the morning we sent out our Facebook post and said good morning world. And my husband brought our daughter to meet him, and at the same time a nurse came in, and said he needed an immunization shot. When he was getting the shot, he wasn't very happy, and he turned blue. And she immediately started telling me, I needed to push a button, for the doctors to come in. And that was a traumatic experience in itself. CAVANAUGH: Right. COSKY: So they took Dexter away, and my husband followed Dexter. I had a C-section so I couldn't really do anything. Later on, the doctor had come back into my room, and he just started talking about Down syndrome. And I had no idea why he was telling me these things. And he looked at me, and he said what do you think, you know, what do you think is going on? And I said well, my son, they took him because he wasn't breathing. CAVANAUGH: Right. COSKY: And that's really what I know. And he was -- he was under the impression that my husband was going to come and talk to me and tell me first. My husband was just outside talking to his mother. Trying to get his hands around the situation how he was going to tell me the hardest thing he'd ever told me. So there was some uncomfortable silence between them, and at that moment, it was the beginning of what was so tough because all I was hearing was what's wrong, wrong, wrong, wrong, and I don't feel like I had an encouraging moment. CAVANAUGH: It sounds terribly traumatizing. COSKY: Oh, it was. Absolutely. CAVANAUGH: Tell us about the process that you went through as a parent from that moment, being confused and traumatized over this information to where you are today. If you can encapsulate for us COSKY: Yeah. You know, I was thinking about how do I simplify this? It's like a game of shoots and ladders. And when he was born, he was just my son. I didn't know right away. CAVANAUGH: Right. COSKY: That he had Down syndrome. And as soon as I was told that -- I hit the shoot, and I fell all the way to the bottom. And there were definitely some moments from then on, as soon as I was able to hold him he was taken from me because he had to go to the NICU, and then he got moved to a different headlight. So the further he was away from me, the more it was just a syndrome, and the baby was removed from the equation. And the baby wasn't there. So the first big stunning point was holding him. And he was my baby! That was my first ladder. And other shoots that kind of happened are when you're finding out some of the medical things that get listed off that you need to be cash concerned about, and getting those tests knocked off. CAVANAUGH: One of the things that you said, I think, Colette, is that the beginning -- everybody was telling you bad news. Nobody was saying good stuff. Like there are interventions, and there are things that we can do. It was just bad stuff from the medical professional, bad stuff from the Internet COSKY: Yeah, I feel lick it was setting expectations for a different life, and different meaning bad. And really, the earliest -- I feel like the earliest intervention, I don't know what the word is, was for my pediatrician. She was desperate to see us because she had a good friend who has a daughter with Down syndrome. And she's amazing. And she does all these great things. And she just want happened to get with us as soon as she could. She was on vacation when I had Dexter. And as soon as she came to my room, and she spent such a good deal of time with us, and it really helped. That was my first instance of feeling not 100% of negative things coming at me MAUREEN CAVANAUGH: CAVANAUGH: I want to leave you -- to make you stay in that negative just for a moment longer. What were your fears and concerns for Dexter when you were just getting introduced to this world of Down syndrome? COSKY: My fear, I was so afraid of -- it can be a really cruel world. And I was afraid -- you automatically start thinking not of him a day old but him being 16, 18, 21, like things that you don't think about right when you have a baby. And I thought about all those struggles that he was going to have, and quite honestly, I worried about the struggles that my family was going to have, how we would manage it, and affect our daughter, and our life in general. And if it was going to be a negative impact on our life CAVANAUGH: I know that you have had a huge turnaround in the eight months since Dexter was born. We have to take a short break. When we return, I'm going to continue my conversation with Colette Cosky. And we're going to be talking about some of the things you've learned and the blog that you've started, and this networking program that you've started with other parents to get all this information in one place. And this is just the kick off of a weeklong series about Down syndrome here on KPBS Midday Edition. I want to have the even know it's 12:34, and you are listening to KPBS Midday Edition. Are my guest is Colettete Cosky, she and her family live here in San Diego. And eight months ago, she learned her newborn son, Dexter, had been born with Down syndrome. From that the time till now, Colette has gone through an incredible learning experience. She even suggested we run a series on Down syndrome on our show. And we'll be doing that all this week. Talking about the new therapies, and interventions that are helping kids all over San Diego. So welcome back, Colette. COSKY: Thank you. MAUREEN CAVANAUGH: Tell us about your blog. And I want everyone to know if they don't already, that Dexter is here with us today. He's playing the headphones and the microphone and squirming around and having a great time. Colette, tell us about your blog, down right awesome. >> Well, it's conspired by Dexter and milo. And we met another family in San Diego through teacher resource that comes to our house and helps every week. And we both felt like, look, there's so much really hopeful information out there, not even just hopeful. Amazing information out there that people need to be able to access and know that's going on. So down right awesome was really a place for us to talk about and post that information and get it out there in a central place for people who wanted to learn more and get educated. MAUREEN CAVANAUGH: What kinds of things will somebody find? COSKY: They'll find links to anything from the latest New York Times article that was done about the research and clinical trials that will be starting for the cognitive delay. Posts just about our general life. Our picnic when we're going out and hanging out, and just doing regular, typical everyday things and just showing that life is awesome. And it goes on, and it's not as maybe bleak as when I first had found out. I thought it was going to be the opposite of that. We want to make sure that that is getting out there, and also just talk about any kind of concerns and things that are happening that people need to know, and they need to be advocates. CAVANAUGH: What are some of the things that you're excited about in Down Syndrome research? COSKY: I'm specifically excited about the research that's happening at -- with doctor Mobley CAVANAUGH: Who's going to be on our show later this week? COSKY: Yes. There have been -- a lot of people don't know that there have been -- this all this research is happening and that there's so many drugs that are in clinical trials that can significantly improve, potentially, the categoryingtive delay, and sometimes maybe even eliminate it at some point of the that's huge! That's a big deal. And our goal is to have our children to be able to do the most, to be happy, under line happy. And I know he's going to want to drive a car and do all these things. That's important to me. So that research in itself, if I'm focusing on anything, you know, that's it for me. CAVANAUGH: How early do interventions start now to try to counter October any cognitive delay that kids with Down syndrome might have? COSKY: You know, I want to say that Dexter was a few weeks old when we started. So we had someone coming into our house once a week. Aaron Gettenberger. She's our resource. She'll come into our house, and really helps walk us through things from an occupational perspective, physical therapy, and speech. And things we never would have thought, how speech is more than just the words that come out of your mouth. It start it is much earlier. And actually food is related to your speed, and how you eat, and all these tiny things. So really helping us to make those sort of guides and understand that. CAVANAUGH: Right. Now, when you think about Dexter's future and getting into school, how often are kids with Down Syndrome mainstreamed these days? COSKY: I hear not enough. I haven't experienced it yet. I know there's some conversations going on blogs about how hard it can be, and other people saying it wasn't difficult at all CAVANAUGH: And then he smiles COSKY: But it's definitely our goal. We thought at first, is he not going to be able to go to school with his sister? And that's a pretty big deal. His sister go to the French American school, and we're adamant about that. We actually think that learning two languages will be great for his cognitive development. So it's a goal, I know it's aspirational. But we have a no limits policy with him. CAVANAUGH: A no limits policy. COSKY: No limits. If we start putting up barriers, it just means we'll do les work. And we're not about to do that. CAVANAUGH: How does Eloise get along with Dexter? COSKY: The best thing ever. She loves him. And she's actually an example to us, one of the first examples of just seeing past the Down syndrome. Because she didn't see it. Anyone she met, the first thing out of her mouth, this is my baby brother, Dexter, isn't he the best? And she couldn't tell enough people. I think looking at a child, and seeing how their perspective and just indifference in general is a way to follow. CAVANAUGH: We see kids and adults in movies and TV shes, there's a character with Down syndrome. Is that a good sign? I mean, what kind of an impact does that have? COSKY: Well, I mean I definitely think it's better than not having it. It is a good impact. I think it's getting it out there, making it more normal. To see. And I think that's the thing, and just addressing it is -- I'm always open with folks about -- look, just acknowledge there's an elephant in the room if there is. And let us talk about it, and really want to be accessible to people. I feel like people being able to engage with Down Syndrome more and understand it more, and the more people see it, the more it becomes everyday, and that can only be good for Dexter as he gets older. CAVANAUGH: Speaking of Dexter, when he gets older, you talked about having a traumatic realization from the doctor that Dexter was born with Down syndrome. And you said that your mind raced ahead. I know a lot of parents who have children with Down syndrome think about, well, how are they going to take care of themselves? And they worry about that. I wonder how you're dealing with thoughts that come up like that. COSKY: I can say in the beginning, the first thing we did was a special needs trust for Dexter. It was a big concern for us. And we felt like we had to -- with what we know, be prepared for it, plus there's a lot of information that you hear that you have to be prepare forward them to be dependent on you. Our goal is for him to be independent. And again, that's why we're so excited about the research that's going on. And in general, as people, my husband and I, we don't want really want to depend on other people to get things done for us. We just were raised that way. So the thought of Dexter having to rely on even society in general to take care of him is not something we're comfortable with. We know that he's going to want to do things on his own William. So it's our Jerry Browns as parents. And if it means becoming an advocate, that's what we're going to do. Because we know that's what he'll want to do in his life. CAVANAUGH: Well, we're going to be talking so much about this through the week. And I know Dexter has places to go and things to do. So we've got to wrap this upright now. Tomorrow, on KPBS Midday Edition, our Down syndrome series is going to continue. We'll look at community support available for families and we'll hear from a man who typeset tells us what it's like to be able to live independently with down syndrome.