Transcription of 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. 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 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, 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. 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 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.
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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 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. 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.
Dr. Lisa: As a physician and a small business owner, I rely on Marci Booth from Booth Maine to help me with my own business and to help me live my own life fully. Here are few thoughts from Marci.
Marci: To all the Special Olympians, their families and coaches, I simply want to say thank you. Thank you for showing us all that no obstacle is ever too big to get over. You are true inspirations. I’m Marci Booths. Let’s talk about the changes you need, boothmaine.com.
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Dr. Lisa: It is my great privilege to spend time with many wonderful parents here in the State of Maine. Today, I’m spending time with a parent that I have a lot of respect for. This is an individual who has impacted, not only the lives of her own children, but also the lives of many children in the greater Portland, Cape Elizabeth region and around the state. This is Karen Johnson who is a coordinator and coach with the Cape Elizabeth Special Olympic Program. Thanks so much for coming in and being with us and for all the work that you’ve done over the years.
Karen: Thank you, and you’re welcome.
Dr. Lisa: Karen, you became affiliated with the Cape Elizabeth Program through your son, Erick, who is 25. You have three children, Tracie is 27, Erick is 25 and Alyson is 21 and it was Erick coming into the world and being the person that he was that cause you to really decide this was an important thing for you.
Karen: He started doing Special Olympic events in kindergarten and in first grade and the school would sign up for different events and he would be part of it and they would bring a group of kids to, you know, whether it would be bowling, track and field, swimming or soccer and basketball. He would do it and I would help out sometimes when they needed it or I would be there, I would go and watch the different events and it was kind of hard. It was really pretty, just like any going to any sporting event, it’s really cool to see, but I really liked about it, I saw what these young kids and adults what their abilities were and competing on a team, competing within a group. They’re also kind of competing with themselves so that they can get better and better or progress in their sport which is always gives them a lot and gives everybody a lot of confidence when they can reach a certain level in whatever they’re doing.
Dr. Lisa: Erick has a diagnosis of autism is that right?
Karen: He does, yup.
Dr. Lisa: You have an older daughter and a younger daughter and then your middle child has autism, what was that like as a parent?
Karen: Very challenging, very frustrating at times. It was really overwhelming, but I just had to do what I needed to do at that minute. Whatever was facing me that day I had to do it. The good news is I had a lot of great people that I work with both privately and in the schools great occupational therapists, speech therapists, teachers, Ed techs and we all worked as a team. Even before we went in the public school, I had people working with them early intervention. As a parent, you go through a lot.
When you get a diagnosis whether it’s at birth or like for us it was two to four years later, you go through all just like anything. First you might be in denial about it and then you grieve it. Grieving, you need to grieve it, but then you have to get moving too. You have to find the stream to say what’s right up ahead of me and what can I do and who can I ask for help for this and who can support him. They eventually then will eventually support me to teach him what he needs to know and go forward and reaching all those goals.
Dr. Lisa: So you didn’t initially know that Erick had autism?
Karen: No. We didn’t. All the signs were there, but not knowing it and he was a little kid full of life, laughing and playing with his older sister. He kind of likes the parallel play but she could engage him and he didn’t end. A typical story, at age 2, he kind of lost his language. He had a lot of gibberish, but I could kind of understand it just because I was with him all the time. People couldn’t understand him. He had about 20 words at age 2 and that’s usually when kids start putting words together. The little signs of lining up all his engines and not really looking at you and not giving you that eye contact that doctors always ask “Does he make eye contact?” and I would said, “Well yeah he does.” I had Tracie before him but I forgot. Then when I had Alyson and he was four years old. When I had Alyson and she just took my eyes and locked on them, I said, “That’s what they’re asking me.”
Other people saw the signs before I did or I saw them but I didn’t acknowledge it. All these wonderful people who are working with me at the time were trying to lead me to where I needed to be and I did. When someone finally asked me straight out one day, “Does he have autism?” It was like a bubble burst and I said, “Oh my God.” I knew it but I didn’t really want to look at it. This person just, as a matter of fact, they asked me and that was probably the best thing that could have happened at that time because I always said, “Okay here we go. No we’re going to go. Now we’re really going to get that support that we need to help him.”
Dr. Lisa: It does seem from having spoken with other parents who have children with developmental delays, autism, other problems that there is the sense that at some point you just have to accept what it is and you have to move forward and you have to be strong and you have to choose to do things that maybe you thought you’d never have to do or maybe you didn’t really ever want to do. Because you still have a child that’s sitting there that you’ve given birth to and they need you.
Karen: What I can say is it’s a journey, an individual journey for everybody. There’s some people who can just really grasp it right away and say, “Give me all the information that you can.” For me, it was probably denial. We got the diagnosis when Alyson was born, so I had three little kids and that was just kind of overwhelming, but yet I knew something was going, but the good news is we did work, the doctor told us to get an OT and a speech therapist, so we were doing everything that we would have done if we had the diagnosis so, but then when I heard that person asked me, that’s when I said we really going to, I needed to get that word and I needed to embrace.
What someone told me once and this is what I held on to and what I always would say is I don’t want to label them, but sometimes labels help you. If you have something that you can say this is it and this is what I need to do. It’s almost like you can look in a book now and say “Before when I wouldn’t want to look at it or I didn’t have a word or I didn’t even want a word, I was like grasping every where for help”. So, you take the label and you use it but you don’t say, “This is my autistic son. This is my son, he has autism.” You just say, “This is Erick.” Then of course people would say, “Okay, well he’s an interesting character,” or whatever, but he showed people who he was whether that was good or bad depending on the situation. It is what it is.
Anyway, once you can grasp that and not to say that’s it because there’s all times during his whole life when you’d be going along fine and then all the sudden you’ll hit a hill and you’ll have to climb up that hill and then you go down the hill again. Sometimes, you hit mogul and you go flying again. Then sometimes you grieve. You grieve when he’s not invited to a birthday party. You grieve at the kindergarten screenings because everybody has their kid and you’re chasing yours. You grieve at dances, you grieve at high school graduation, at college acceptance letters. I let myself do that but I couldn’t stay there long because you just got to keep going, but I think I had to do it. I have to do it because if you just push it away, it just festers. It’s that ‘you feel what you feel’ type of thing.
Anyway, I think it’s a personal journey for everybody when they can look at it and whatever struggle you have in your life, I think there’s just different paths you go to get there. I think with something like with autism, I will say the earlier you can get there, the better off he’ll be or she’ll be or you’ll be and that you can go forward. Then your goal is always like with your typical kids is obviously to have some type of a life once he leaves the public school as an adult. That’s always your goal. It’s just a different goal than your typical kid but it’s still that goal. You’d still take those steps to get there.
Dr. Lisa: The goal of the Dr. Lisa Radio Hour is to help making connections between the health of the individual and the health of the community. The goal of Ted Carter Inspired Landscapes is to deepen our appreciation for the natural world. Here to speak with us today is Ted Carter.
Ted: I am always amazed at how much the land speaks to us if we just stop and pay attention. I will very often place gazing rocks which I call gazing rocks because it’s a big huge slab of stone that I place in the landscape where you can line your back and look at the stars or you can reflect and dream about things and places you want to go to. But I often go to these places, they are called power places. My shaman that I work with in the desert for many years talked to me about power places and I go out there and leave the drafting table, go out to this special spot that I’ve created, line my back and instantly almost fallen to a dream state.
There’s something called creative visualization which I think a lot of people know about and I’ll just sort of turn that design slowly in my mind and look and see the design from different angles and create it in a very dream light state. Then I would turn back to the drafting table refreshed and ready to design. Time and again it’s never failed me that this is how some of my most creative designs take shape.
I’m Ted Carter and if you’d like to contact me, I can be reached at tedcarterdesign.com.
Dr. Lisa: The Dr. Lisa Radio Hour and Podcast understands the importance of the health of the body, mind and spirit. Here to talk about the health of the body, here’s Travis Beaulieu of Premier Sports, a division of Black Bear Medical.
Travis: Black Bear Medical serves many of the special Olympians in Maine. We take pride in helping these athletes be the best they can be. We like to say at Black Bear Medical, it’s your life, define it your way and we’re here to help. We all have challenges in life whether we’re born into them or find ourselves with difficulty as we get older. We all need assistance to physically and emotionally push through them.
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Dr. Lisa: It’s interesting to hear you talk about the stages of grief, denial, eventually acceptance, but the fact that it’s not that you start grieving and then you end grieving and then you move on. It’s a continual process through life and it is also interesting because I also have three kids. Even at the important milestones, I feel some grieving. I have my son who graduated from high school and I simultaneously was happy for him but grieved because he was living me. I have my daughter who is going to graduate from high school and all of these things.
I think, as parents, it just keeps to hit us in the way that we don’t realize that they will. I think that that would be really intensified for you because you’re sitting with a lot of other parents who are kind of doing the normal grieving thing and you’ve got that one external layer on something on top of that.
Karen: In the way I look at it is, I don’t know your story. You can see my story because it’s right there, but who knows what’s really in your family. I’ll tell you this quick story when Erick was little and he would have a tantrum and he would be acting out and all these people would walk by me and of course I’m assuming they’re thinking the worst of me like, “Oh my goodness, what a terrible mother. Oh my goodness and couldn’t catch or handle that kid.”
We were teaching Erick that yes I’m his mother and he calls me mom but my name is Karen. So if you’re ever lost and someone says, “What’s your mom’s name?” “Karen.” So we would role model it back and forth and eventually he just started calling me Karen and I didn’t really mind because it didn’t really bother me. My husband said, “I’m your dad, call me dad.” And he would.
One day, it was time to leave a store and he just did a spread eagle on the floor and he was yelling and he’s telling me saying, “No Karen, no.” And all these people were walking by me and what I would say to myself is, “Isn’t she a nice woman taking that kid out to give his mother a break.” And I could let it go. I could let all that go. Then, I could pick him up, carry him out and go into the car. I was kind of like the hero. I just tell you that story because whenever I see parents in the store struggling with their typical kid and I say to myself, “Thank God it’s not me today.” Not so much now, they’re adults, but you can let it go if you have these little tricks in your head and everybody has something, everybody. That’s just what I assume now when he was younger or even now if I’m out and he’s having a tough time, they just, “Well, thank God it’s not me today.”
Dr. Lisa: That is actually a fair point. Even people who, at least, look typical, maybe there’s something not, that you just don’t about. In fact, I would argue that most people are atypical really, it’s just that some of them are blessed to look a certain way.
Karen: You know what the definition of a functional family is? One. There’s this function in every family, whatever it is, but we just all do the best we can at that minute.
Dr. Lisa: Special Olympics has been a way for you to help kids connect with themselves but also to help kids connect with other kids or doing Special Olympics and also for family members of these kids to connect with one another.
Karen: In our program, we have three schools, elementary, middle and high school. Right now, we have about 15 to 20 kids total and the elementary school is a little bit less organized as a middle and high school. Dave Croft is the other coach and he and I are kind of working on that a little bit, but we do schedule practices. If it’s like the basketball will be coming up, so we’re going to have a unified team which is, through Special Olympics, we have three Special Olympic athletes and then two partners. The partners will play basketball, but they will with the three Special Olympic athletes but they’ll feed the ball to the kids, to the athletes and maybe set up to play.
We’ll be having practices with that and then for the younger kids, they’ll be working on skills, so we’ll have practice for just working on skills because there’s a skills competition there. Then with the middle school and high school kids, it will be a little bit more of an organized team. Then some of the middle school and high school kids will also do skills depending on whatever they want to do or their ability at the time.
We do teach sportsmanship, what it’s meant to be on the team, what it means to win or lose, what it means to be a team player and all the social part of it too. Going with your team on the bus, what you do on the bus, what you do while you’re waiting for your game and then the practice right before it and then the whole game itself.
I think what we also try to do is, when we have them do these different activities, I think it empowers them but it also empowers the parents a bit because, not only are the kids realizing what they can do, the parents also realize what their kids can do and it kind of empowers them. To know that your kid can, not that they didn’t know they could do it, but to whatever level they’re at.
Our swim program that we have, kids will start them in elementary school all the way through high school and some of the kids are really nervous in the water and afraid. Once we get them in, and it takes a little while, before you know it, they’re doing laps with either a bubble or get off the bubble but it’s always self-fulfilling for them because swimming is the best, because once you can keep your head up above water and you’re not going to go under, then you know you can go a little bit further. So it’s instant gratification for them almost and it’s a wonderful activity for them to do.
Swimming is probably the best because that’s something they can bring on after they get out into the community and into the real world and that’s a life long activity that they can do and it’s great for their sensory systems. It helps organize everything for them. I think that’s one of our most successful programs within the program because we have the kid swim one day a week during school and we use that for practice too for the Special Olympics Swim Meet.
Dr. Lisa: Some of what the Special Olympics does really is just helping kids learn behaviors which are specific to sports but they’re not just specific to sports. They’re specific to social situations and the world at large.
Karen: Absolutely. That’s why we try to stress too. The social part of being out there in the community even being, like I said before, being on a bus, being safe on a bus, daily living skills. We work on fine motor skills with them. We have to lace up that skate or you have to tie your shoe. Now, you need to put on your jacket or whatever and then the gross motor, that’s what the activity is, teaching them how to or encourage them to run that extra 50 yards or skate or ski and then they can realize that they can do it so they can get a little bit further.
Dr. Lisa: Which isn’t really that much different than coaching what you’ve termed typical kids.
Karen: Right. That’s true, but I think sometimes with the kids we work with, typical kids just might learn it by just seeing it, by seeing somebody do it, but with these kids sometimes you have to break it down so that they know what they are doing and why they are doing it. But other kids, typical kids might just, not all the time though. Some typical kids you have to tell them, but a lot of typical kids will because there’s that peer pressure to do like someone like Erick with autism they don’t get that peer pressure. It’s all they got. They’re a mind thing where they don’t feel all that pressure like a typical teenager would to conform to what the norm is there.
Dr. Lisa: Karen I’m sure there are people who are listening who would like to get more information about Special Olympics in Maine, Special Olympics in Cape Elizabeth. Is there a website or is there a place that you would refer people to?
Karen: If they’re interested in Special Olympics, they can go on to Special Olympics of Maine website. It’s specialolympicsmaine.org and they can see everything that the state Special Olympics offer for kids. Then there’s a couple of people, contact people on there. If they wanted to find out any information about Unified Sports, there’s a contact name, Ian Frank, who can give you information about that.
Special Olympics in Maine also offers programs throughout the year. They offer, not only the events that we go to but they have like unified programs in the fall and in the summer and they have golf, they have soccer, they have basketball. Bocci too is up and coming so they do a lot all throughout the year and not just with the actual events that they have.
Dr. Lisa: We’ve been speaking with Karen Johnson who is a coordinator and coach with the Cape Elizabeth Special Olympic Program. I thanked you at the beginning of the program for coming in and speaking with us and for doing all the work you do, but I really just, I can’t emphasize enough how grateful I am and how grateful so many people who have benefit from your work are.
Karen: If I could say one thing, Dave and I wouldn’t be able to do this without all the staff, the teachers, the ed techs, the social workers, the occupational therapists that work at the elementary school and she has worked with the older kids too. We wouldn’t be able to do this without them and also with the parents support is key. They support us 100% in what we’re trying to do. Without all of that support, we wouldn’t have what we have in Cape Elizabeth.
Dr. Lisa: I haven’t had a chance to meet all of these people yet, I will thank them now and hopefully I will have a chance to meet them in the future and I know that our community and our state is better for having them and you in the world. So thank you for being here.
Karen: You’re welcome. Thank you.
Dr. Lisa: You have been listening to the Dr. Lisa Radio Hour and Podcast show number 124, Special Olympians. Our guests have included Raf Adams, Cri Swift and Karen Johnson. For more information on our guest and extended interviews, visit doctorlisa.org.
The Dr. Lisa Radio Hour and Podcast is downloadable for free on iTunes. For our preview of each week show, sign up for our e-news letter and like our Dr. Lisa Facebook page. Follow me on Twitter and Pinterest and read my take on health and well-being on The Bountiful Blog. We love to hear from you so please let us know what you think of the Dr. Lisa Radio Hour. We welcome your suggestions for future shows. Also, let us our sponsors know that you have heard about them here. We are privileged that they enable us to bring the Dr. Lisa Radio Hour to you each week.
This is Dr. Lisa Belisle, I hope that you have enjoyed our Special Olympians show. Thank you for allowing me to be a part of your day. May you have a bountiful life.
Speaker 1: The Dr. Lisa Radio Hour and Podcast is made possibly with the support of the following generous sponsors. Maine Magazine; Marci Booth of Booth Maine; Apothecary By Design; Premier Sports Health, a division of Black Bear Medical; Sea Bags; Mike LePage and Beth Franklin of RE/MAX Heritage; Ted Carter Inspired Landscapes; Tom Shepard of Shepard Financial; Dream Kitchens Studios; Harding Lee Smith of The Rooms; and Bangor Savings Bank.
The Dr. Lisa Radio Hour is recorded in the studio of Maine Magazine at 75 Market Street, Portland, Maine. Our executive producers are Kevin Thomas and Dr. Lisa Belisle. Audio production and original music by John C. McCain. Our assistant producer is Leanne Ouimet. Our online producer is Katy Kelleher.
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