Transcription of Corin Swift and Rafael Adams for the show Special Olympians #124
Dr. Lisa: This is Dr. Lisa Belisle and you are listening to the Dr. Lisa Radio Hour and Podcast show number 124, Special Olympians, airing for the first time on Sunday, January 26, 2014. Today’s guest include Raf Adams and Cri Swift, parents of special Olympian Henry, and Karen Johnson, also a parent of a past special Olympian and a coach and coordinator of the Special Olympics Team in Cape Elizabeth.
The 2014 Olympic Games are soon upon us, this year being held in Sochi, Russia. While we are awed by the athletes who bring evidence of their talent and hard work to the worldwide stage, there are children and adults who cause awe daily. These are our special Olympians and the parents and volunteers who work with them. Today we speak with Raf Adams, Cri Swift and Karen Johnson who share their experiences with parenting and coaching the children and adults who inspire us in unexpected ways. Thank you for joining us.
Not so long ago, we did a program about Scottie Wentzell and the Morrison Center and the work that the Morrison Center is doing with people in this area who have disabilities of various sorts. Today, we are speaking with Raf Adams and Cri Swift, both of whom are the parents of two sons Dylan and Henry and Henry who is in first grade has down syndrome. Cri Swift is a partner in the law firm Sidley Austin and Raf Adams is the owner of the Soposup Shop in South Portland and, in fact, we’ve had Raf on the show before. Both Raf and Cri are long time friends of the magazine and we’re really happy to have you in today.
Raf: Thanks. It’s great to be here.
Dr. Lisa: So let’s talk about Henry. I’ve never actually met Henry, but I see a lot on Facebook, a lot of the things that your family does, a lot of the adventures that you’re out doing with Henry and Dylan. You’re really everywhere. You’re trying to give them some pretty good times I would say.
Raf: In every way, I think we’re just a typical family. We do whatever a typical family does, we go on vacations and we do a lot of stuff in the neighborhood and the community with Henry and Dylan.
Cri: And we like traveling I think ourselves, so we travel a lot and we think it’s important for our kids to travel and go everywhere.
Raf: We just got back from Costa Rica three weeks ago. It was a fantastic vacation.
Dr. Lisa: Yeah that was like a Thanksgiving type.
Raf: Thanksgiving in Costa Rica, exactly.
Dr. Lisa: All the pictures of the cousins I think, I was enjoying and and Henry is surfing. Actually, I guess you were doing some surfing maybe as well.
Raf: I got a little paddle boarding in when I was down there, but honestly I was missing Maine when I was there, when I was on the water at least anyways.
Cri: We did a lot of walking, a lot of swimming. Henry has been doing swimming in school, he did a lot of swimming when we were in Costa Rica.
Raf: Our house had a pool, so getting Henry out of the pool was the biggest challenge about the pool area once he was there and he wanted to stay in all day.
Dr. Lisa: With Henry, I’m assuming that you had an idea before he was born that he would have the diagnosis of down syndrome?
Raf: No. That was a total surprise actually.
Cri: I think most people do know now, but we didn’t. It was a surprise to us and actually it took a little bit of time for us to get the diagnosis. It was a surprise to us and after he was born here at Maine Medical we connected pretty quickly. We’re lucky here in the Portland area to have pediatric geneticists here who met with right away and who hooked us up with the Maine Down Syndrome Network and then also with Child Development Services because kids with down syndrome have a variety of delays including motor skills. So we started with physical therapy with Henry when he was about six weeks old and started just right away getting to know other people in the community and trying to get as much and many resources and support for him in our whole family as we could.
Dr. Lisa: So this is interesting to me because having taking care of pregnant women before, a big part of what we do is counseling for … It’s the quadruple marker screen and to see if people’s children have disabilities ahead of time, so we offered this and not everybody takes advantage of this. Was this something that you had decided not to get screen for or it wasn’t really an issue at all?
Raf: We had a screening and then there was one marker that show that there’s possibly going on and so we went to a second screening where they did a lot of measurements.
Cri: An ultrasound.
Dr. Lisa: So you went through all the normal stuff and you still didn’t know ahead of time?
Raf: Yeah, we got back from that ultrasound and they were like, “You know what? We think everything is fine.” At that point, we didn’t feel like we needed to do any more testing.
Dr. Lisa: So when Henry was born, what was that like? Did you have a sense at that point that there was something that wasn’t quite what you expected?
Raf: I did. Henry has these ears that are bent down and I saw his ears and I remember asking right away. His ears are bent down, it looks a little odd to me and the doctor who had delivered Henry said, “Oh, that’s no big deal, they’ll fall right back.” And I sort of knew that it doesn’t look like those ears are going to fall back, so it was just something I remember seeing and wondering about. Then, some of the other signs like the telltale crease in the hand he didn’t have, so it took a couple of days I think for us to … I think we had an idea but nobody was really like, “Hey this is what’s going on.”
Cri: We had a couple different pediatricians come in and look at him and say and the other one who said yes they thought he had down syndrome, the one who said no and obviously the only way to tell for sure is to do a genetic test which actually takes a couple of weeks, days, I don’t know, it took a while.
Raf: They have to draw the blood and they really have a hard time drawing the blood from Henry, so they have to do that four or five times.
Cri: Then I think they forgot to send the blood in at all. It took a long time. I think it was a good week and a half before we got the results back.
Raf: But during that whole time, you sort of … In the back of your head, you’re sort of preparing yourself for the news. There’s something out there and there’s some questions, so what do we do if this is what happens.
Dr. Lisa: So what was that like to go from the mindset of, “Okay we have two sons” to “Okay we have two sons and one of them is going to need a little bit of extra help in his life.”?
Raf: It was really, really hard. Those first two weeks after Henry was born was tough as many weeks I’ve ever had I think. Looking back at this point, I feel not quite embarrassed to feel that way, but you look back and you think. I think the biggest thing that happens when you have a child at least from our perspective, a child that has a disability is not so much that … I think your sadness or your grief is more tied up with the idea that what you had hoped would be will not be. It’s not like what will be isn’t going to be any worse or any better. In fact, I think in many ways what has happened is even better than the alternative, but it’s just a question of letting go of what our expectations were and just accept the reality. I think that’s probably the hardest part, but once you get to that, it feels so much better.
Cri: And being able to kind of re-imagine a different future, letting go of what you had, but starting to fill up your head with other paths or other adventures for your family.
Dr. Lisa: So this maybe where programs such as the Special Olympics and the Buddy Walk and some of these other organizations that I know you’ve been involved in. This is maybe where some of these come in.
Cri: Absolutely. Henry was born in June and by July we had connected with the Maine Down Syndrome Network and I think we went to our first pool party which was great and overwhelming in some ways. Before Henry was born, I hadn’t really known anybody with down syndrome before, so suddenly it was just like jump in, meet everybody. Then September of every year is the Buddy Walk and the Buddy Walk is the Down Syndrome Network’s big annual fund raising and awareness event. There’s a Buddy Walk in Portland and one in Augusta and it’s a chance for the families all over the state to kind of come together, see each other. A lot of families in a state like Maine, people live really far from each other, but everybody comes to the Buddy Walk and you see friends and you meet with all these support people, doctors, physical therapists, occupational therapists, pediatricians who come and support the families. That has been really important to us.
Raf: Those groups are really interesting in a way because really the only thing we have in common is that we have a child with down syndrome. The families that are there are just … We’re all motivated to go to be in the same place and there isn’t really anything else that will bring back diverse of a group of people together. Any other time you get that many people together, it’s always because they share a common interest, whereas obviously having a child with down syndrome is a common interest as well. It’s sort of a different perspective. I think you got a much wider swath of people coming together. It’s really interesting to see that this really affects everyone.
Dr. Lisa: It’s an interesting world that we’re living in now I think with all of … We’re trying to encourage kids to go into sports and I know that your older son Dylan is very good sports. He’s in 5th Grade in Cape Elizabeth. That’s good because we want kids to be good in sports, but also because there is this competitive thing. I think that for some children it gets very difficult to be patient with other kids even if they don’t have down syndrome, they aren’t as fast, they aren’t as skilled, they don’t … They can’t pitch as well for example or they can’t throw a basketball as well. Do you think that having Henry as part of Dylan’s life, is this enabling him to learn patience in some way?
Cri: I think so. I think patience and learning that kids are different and different kids bring different things to their table and some kids bringing superior pitching skills and other kids bring superior Pokemon card collections or whatever it is. You’re going to have your strength and weaknesses and I think he has learned that.
Raf: Following at least Dylan’s sort of progress through sports, the biggest take away for me is that kids are a lot more understanding and patient than I guess I had thought they were. When I grew up I was never on sports teams and I was the kid who was hanging out on the side of the basketball and not really paying attention and thinking like, “When is gym going to be over? I want to get out of here.”
It’d seem on the other end, as a father and watching my son be really involved in sports and do really well with it, but also seeing the compassion and the patience of the other kids on the teams. It has been really eye opening for me. I assumed it was like this cutthroat environment, maybe it’s just not as much like that as it was before or maybe there’s just something in the water in Maine, I don’t know. I think we maybe don’t give kids as much credit as we should as far as that is concerned.
Dr. Lisa: Do you think that there is something about living in Maine that had a positive impact on your lives with Henry and with Dylan?
Cri: I think that because of where we live, the kids are just outside all the time. That’s the way that we live. That’s the way our neighborhood is. Obviously, that’s Raf’s job. When the weather is nice, we used to be outside all the time and the kids do that and I think that’s going to be very important for their health over all that they’re always on bikes or playing basketball.
It’s been great for Henry in terms of his motor skills and things kids with down syndrome or typically pretty delayed in walking, walking a year or two years later than other kids. But if you keep your kid outside all the time near other kids playing basketball, they’re going to follow the other kids and that’s what we’ve done.
Raf: Maine is an incredible place to grow and to develop. The biggest challenge of living in Maine is probably finding a good job and as far as feeding your soul is concerned, it’s as good of a place as any.
Dr. Lisa: That’s interesting for me because I know that you own a stand up paddle board shop which is how we came to know you in the first place. Cri you’re an attorney but you do a lot of work out of state and somehow you’ve had to find this balance of work, life, family, in-state, out of state, do you feel like you’ve somehow come to a place of somewhat, I guess, balance?
Raf: I think so. Like any couple, you go out to dinner and you look at other couples and you say … You come away from dinner at the end of the night and you’re saying, “I wonder how they do it. How it look so good.” And then you’d always back on yourselves and you say, “I looked all the couples, do we look like we’ve got it all figured out?” I think generally we think, “Yeah, it seems to be working really well for us.” I think it’s a really good balance.
Cri: Yeah. Knock on wood. It’s just nice saying that because it’s something it will go out of balance immediately. It’s always a challenge to figure out how to spend more good time with your kids and we’re working on that all the time.
Raf: Cri and I are both fairly independent people and I think we don’t really like to have other people tell us how or what to do things. Both of us are able to follow our own paths, but at the same time, our paths are not usually incompatible.
Dr. Lisa: They are very different but I like that you’re able to somehow weave what you’re both doing together and together as parents. Somehow, you’re making it work. You’re not both lawyers, you don’t both own a stand up paddle board shop.
Raf: I think so. There’s a lot of traditional role reversal, but again that probably helps for the kids to understand that. There’s nothing that needs to be taken for granted. Sometimes, maybe my mom has to go our way for a week and she has to go work really, really hard and my dad is going to be home and he’s going to pick me up from school everyday. That’s just the way my family is. That’s not like all families have to be one way or another in the same way that my brother has down syndrome or Henry looks up to his older brother. Henry won’t feel everything. I mean, I don’t think he’ll ever think Dylan doesn’t have down syndrome, but I think it’s important for kids to just realize that there’s a lot of different ways that things can happen.
Dr. Lisa: When you think about Henry’s future, what does that feel like to you? When I think about my three kids, I kind of think about and then they go to college. I don’t know what happens to that point but I get them to place and I’ll still be their parent and in fact they have one in college now, one leaving next year. That’s where my mind works and I assume that Henry could go off and he could also do college or something. How does that feel to you when you think about his future?
Raf: It’s marginally terrifying I think.
Cri: Yeah it’s super terrifying. I try not to think about it that much and I think we have, in a lot of ways, we’re extremely lucky and we have a lot of resources. Raf is self-employed. We’re going to have options, a variety of options for Henry as he gets older I think which is good because we’re going to need them because they aren’t a lot of post-high school educational opportunities for kids who have developmental disabilities. There’s Strive here in Portland, which is an incredible school and it takes what, 12 kids a year from allover the country. His chances of going to Strive are slim, although we’ll try and make that happen.
The adult here in Maine through the Department of Health and Human Services, there are adult kind of day programs where people work on learning life skills and they have a place to go and there’s a two year waiting list for that. If you have a 21 year old or a 22 year old kid with down syndrome in Maine and you, as a parent, work, you need to find a place for your 22 year old that is safe, first of all, but hopefully that’s enriching to their lives as well and you’re on the two year waiting list for community programming.
There are not a lot of options, so maybe we’ll see what Henry wants to do, but hopefully we can find him some employment. Maybe he’ll love paddle boarding. Maybe he’ll love boats. Maybe he’ll love radio shows. We’ll deal with that. That’s a long time away. We got to get him to the first grade.
Raf: It’s really hard to know now what Henry will be like. He could be really independent or he could need to live at home, we just don’t know and we love him to death, so we would be very happy to have him at home if that’s what it takes. It sort of means that looking down the road right now, our lives are not that different from any parent who has 6 or a 10 year old, but in 18 years our lives could be significantly different. Because instead of having our kids all go out to college and we only see them in Christmas and vacations, one of our children is living at home with us all the time. We’ll just have to see. We don’t know what it’s going to be like. But, it is something you think about at night.
Dr. Lisa: I think for me as a parent, it really, it just strikes me that it’s kind of changes the way you think about the parenting role. Obviously, I’m still parenting my 20-year-old but in a different way, so just what it means to be a parent is … I guess it’s just more interesting.
Cri: There’s more to think about, that’s why we try not to.
Dr. Lisa: But taking everyday as it comes. I think that that’s basically what you’re saying. You didn’t really know that this was going to happen. You had Henry, you didn’t find out what his diagnosis was for a couple of weeks after he was born and then every step along the way, you just kind of keep re-upping and being present and finding the resources that you can and living your lives.
Raf: That’s really I wanted for us, all the time. It’s more apparent when your decision seem like maybe not more consequential on a regular basis, but I think it’s still. Everyone comes around to that way of living their lives.
Dr. Lisa: I think you’re maybe not giving yourselves quite enough credit. I see a lot of patience and not everybody is able to do that. I think that you’ve described it perfectly when you said we had to examine our expectations and manage them differently, because not everybody does. I think the fact that you needed to that. I’m sure you’re not going to want to pat yourselves on the backs but I’m just telling you, it’s not as common as you might think.
Raf: Going back, I will say that having Henry has caused me to be more compassionate towards other people and towards other adults because in some ways I was younger before I had Henry. I was younger in the way that I was more naive and I was more innocent maybe. I was sort of coasting I guess. Then once I had Henry, it wasn’t only that, suddenly my life has become a little more complicated that I realized by talking to the other people and by going to these meetings and by going to support groups or by going to the Buddy Walk and things. I realize that really everyone has probably something that’s made their lives a little more complicated and you don’t always know what that is. I think we all need to be open to the idea that we all have something going on. If we all come from it from that perspective, I think we’ll just be better people.
Dr. Lisa: I appreciate you coming and talking to us today. I know it’s not always easy to talk about your family, but it’s something that I think people who are listening will get a lot out of and certainly for people who are listening who have children with down syndrome. I would encourage them to look into programs like the Buddy Walk and the Special Olympics and some of the other things that we’ve talked about today because it sounds like really community sources are fairly critical when it comes to having a child with special needs.
We’ve been speaking with Raf Adams and Cri Swift, parents of Henry and Dylan. We appreciate you’re coming in and talking to us today.
Raf: Thanks very much.
Cri: Thank you.