Special Olympians #124

Raf Adams:

Having Henry has caused me to be, I think, more compassionate towards other people, towards other adults, because I think in some ways I was younger before I had Henry. I was more naive, I was more innocent maybe. But I realized really, everyone sort of has probably something that's made their lives a little more complicated, and you don't always know what that is. But I think we all need to be open to the idea that we all have something going on. And if we all come from it from that perspective, I think we'll just be better people.

Cri Swift:

You know, in a lot of ways, we're extremely lucky and we have, we have a lot of resources. We're going to have options, a variety of options for Henry as he gets older, I think.

Karen Johnson:

So we're kind of reaching out a little more because these kids that they'll be competing against the other towns, some of them, when they become adults and leave the public schools, these are kids that they're going to be hanging out with, you know, whether in day programs or working side by side. So it's good to get that connection with them as early as we can.

Dr. Lisa Belisle:

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 guests include Raph Adams and Cree Swift, parents of Special Olympian Henry and Karen Johnson, also a parent of a past Special Olympian and a coach and coordinator of the Especial 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 a quiet awe daily. These are our Special Olympians and the parents and volunteers who work with them. Today we speak with Raf Adams Cree 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 Scotty Wenzel 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 Raph Adams and Cree Swift, both of whom are the parents of two sons, Dylan and Henry. And Henry, who is in first grade, has down syndrome. Cree Swift is a partner in the law firm Sidley Austin. And Raf Adams is the owner of the Sopo Sup shop in South Portland. And in fact, we've had Raf on the show before. Both Raf and Cree are longtime friends of the magazine, and we're really happy to have you in today.

Raf Adams:

Thanks. It's great to be here.

Dr. Lisa Belisle:

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, and you're really everywhere. You're trying to give him some pretty good times, I would say.

Raf Adams:

Yeah. I mean, it's been, you know, in every way, I think we're just a typical family. We do whatever typical families do. We go on vacations, and we do a lot of stuff in the neighborhood, in the community with Henry and Dylan.

Cri Swift:

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 Adams:

We just got back from Costa Rica three weeks ago, and it was a fantastic vacation.

Dr. Lisa Belisle:

Yeah, that was like a Thanksgiving type.

Raf Adams:

Thanksgiving in Costa Rica. Exactly.

Dr. Lisa Belisle:

All the pictures of the cousins, I think I was enjoying and all. And Henry surfing and Actually, I guess you were doing some surfing maybe as well.

Raf Adams:

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 Swift:

we did a lot of walking, a lot of swimming. Henry has been doing swimming in school, so he did a lot of swimming.

Raf Adams:

When we were in Costa Rica, our house had a pool. So getting Henry out of the pool was the biggest challenge about the pool area. Once he was in, he wanted to stay in all day.

Dr. Lisa Belisle:

Now, with Henry, I'm assuming that you had an idea before he was born that he would have the diagnosis of down syndrome.

Raf Adams:

No, it was a total surprise, actually.

Cri Swift:

I think most people do know now, but we didn't. It was a surprise to us. And it actually, it Took a little bit of time for us to get the diagnosis. So it was a surprise to us. And after he was born, here at Maine Medical, and we connected pretty quickly. We're lucky here in the Portland area to have pediatric geneticists here who we met with right away and who hooked us up with the main down syndrome network and then also with child development services, because kids with down syndrome have, you know, a variety of delays, including motor skills. And so we started with physical therapy with Henry when he was about six years old. I mean, sorry, six weeks old. And started just right away getting to know other people in the community and trying to get as much as many resources and support for him and our whole family as we could.

Dr. Lisa Belisle:

So this is interesting to me because having taken 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 offer this, and not everybody takes advantage of this. Was this something that you had decided not to get screened for or. It wasn't really an issue at all.

Raf Adams:

It wasn't. We had a screening, and then there was one. You know, there was one marker that showed that there was possibly something going on. And so we went to a second screening where they did a lot of measurements, an ultrasound.

Dr. Lisa Belisle:

So you went through all the normal stuff and you still didn't know ahead of time?

Raf Adams:

Yeah, we got back from that ultrasound, and they were like, you know what? We think everything's fine. At that point, we didn't feel like we needed to do any more testing.

Dr. Lisa Belisle:

And 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 Adams:

I did. I sort of. Henry has these ears that are bent down. And I saw his ears, and I remember asking right away, you know, 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 fold right back. And I sort of knew that it doesn't look like those ears are going to fold back. So that was just something that I remember seeing and wondering about. But then, you know, some of the other signs, like the telltale crease in the hand, he didn't have that. So it took a couple 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 Swift:

Right. We had a couple different pediatricians come in and look at him and say, you know, one who said yes, they thought he had down syndrome, one who said no. 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.

Raf Adams:

Yeah, they have to draw the blood. And they had a really hard time drawing the blood from Henry, so they had to do that four or five times.

Cri Swift:

Right. And then I think they forgot to send the blood in. It all. It took a long time. I think it was a good week and a half before we got the results back.

Raf Adams:

But during that whole time, you're sort of in the back of your head, you're sort of preparing yourself for the news. You know, you're saying, there's something out there and there's some question, so, what do we do if this is what happens?

Dr. Lisa Belisle:

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 Adams:

It was really, really hard. I mean, those first two weeks after Henry was born was as tough as any weeks I've ever had, I think. And, you know, looking back on it 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 somebody, when you have a child, at least from our perspective, a child who has a disability, is not so much that I think your sadness or your. Your grief is more tied up with the idea that what you had hoped would be will not be. And it's not like what will be is going to be any worse or any better. And 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 accepting what is the reality. I think that's probably the hardest part. And once you get to that, it feels so much better

Cri Swift:

and being able to kind of reimagine a different future, letting go of what you had, but starting to fill up your head with other paths, other adventures for your family.

Dr. Lisa Belisle:

So this may be 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 may be where some of these come in.

Cri Swift:

Absolutely. I think Henry was born in June. By July, we had connected with the main 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. And then September. September of every year is the Buddy Walk. And the Buddy Walk is the Down Syndrome Network's big annual fundraising 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, you know, a state like Maine, people live really far from each other, but everybody comes to the Buddy Walk and you see friends and, you know, when you meet with all these support people, doctors, physical therapists, occupational therapists, pediatricians who come and support the families. So that's been. That has been really important to us.

Raf Adams:

And those groups are. 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. And so the families that are there are just, you know, we're all motivated to go to be in the same place. And there isn't really anything else that would bring that diverse of a group of people together. You know, any other time you get that many people together, it's always because they share, you know, a common. A common interest. Whereas, you know, obviously having a child with down syndrome is a common interest as well. But it's sort of a different perspective. I think you get a much wider swath of people coming together, and so that's really interesting to see that this really affects everyone.

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Dr. Lisa Belisle:

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Cri Swift:

I think so, yeah. I think patience and I think learning that kids are different and different kids bring different things to the table. And some kids bring, you know, superior pitching skills, and other kids bring superior Pokemon card collections or, you know, whatever. It is different. You're gonna have your strengths and weaknesses. And I think it's. I think he has learned that.

Raf Adams:

I think following at least Dylan's. Dylan's sort of progress through sports. The biggest takeaway for me is that kids are a lot more understanding and patient than I guess I had thought they were. You know, when I grew up, I was never on sports teams and I was sort of the kid who was sort of hanging out on the side of the basketball court and not really paying attention, thinking, like, when is gym going to be over? I want to get out of here. So seeing 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 has been really eye opening for me. I think I assumed it was like this cutthroat environment, but 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. But I think we, you know, we maybe don't give kids as much credit as we should as far as that is concerned.

Dr. Lisa Belisle:

Do you think that there is something about living in Maine that has had a positive impact on your lives with Henry and with Dylan?

Cri Swift:

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 Raph's job when the weather's nice is to be outside all the time. And the kids do that. And I think that's gonna be very important for their health overall, that they're just. They're always on bikes or playing basketball. It's been great for Henry, you know, in terms of his motor skills and things. Kids with down syndrome are typically pretty delayed in walking, you know, walking a year, two years later than other kids. But, you know, if you keep your kid outside all the time, you know, near other kids playing basketball, they're gonna follow the other kids. And that's what we've done.

Raf Adams:

Yeah, I mean, I think Maine. Maine is an incredible place to sort of, you know, to grow and to develop. I think, you know, the biggest challenge of living in Maine is probably finding a good job. But as far as feeding your soul is concerned, it's as good of a place as any.

Dr. Lisa Belisle:

That is an interesting. It's interesting for me because I know that you own a stand up paddleboard shop, which is how we came to know you in the first place. And Cree, 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 Adams:

I think so. I think, you know, like any couple, you go out to dinner and you look at other couples and you say, you know, you come away from dinner at the end of the night and you're saying, you know, I wonder how they do it, how it looks so good. And then you always look back on yourselves and you say, well, you know, how do we look to other couples? Do we look like we've got it all figured out? And I think generally we think, yeah, it seems to be working really well for us. I think it's a really good balance.

Cri Swift:

Yeah, you're gonna make me knock on wood just by saying that, because something will go out of balance immediately. But, yeah, I think we. It's. 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 Adams:

Cree 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, you know, so both of us are able to sort of follow our own paths, but at the same time, our paths are not mutually incompatible.

Dr. Lisa Belisle:

Well, they are very different. But I like that you're able to somehow weave what you're both doing together, and together as parents, you know, somehow you're making it work. You're not both lawyers. You don't both own a stand up paddleboard shop.

Raf Adams:

I think so. I think there's. I mean, there's a little bit of traditional role reversal, but again, I think that's. That probably helps for the kids to understand that there's nothing that needs to be, like, taken for granted. Like, you know, sometimes maybe my mom has to go away for a week and she has to go work really, really hard and, you know, and my dad's gonna be home and he's gonna pick me up from school every day. And that's just the way my family is. It's not like all families have to be one way or another in the same way that, you know, my brother has down syndrome, or Henry looks up to his older brother, and I don't know if he ever thinks 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 Belisle:

When you think about Henry's future, what does that feel like to you? Because I know that, you know, when I think about my three kids, I kind of think about. And then they go to college and that's sort of, I don't know what happens at that point, but I know I have to, I get them to that place and I'll still be their parent. In fact, I have one in college now, one leaving next year. But that's, that's where my mind works. And I assume that, you know, Henry could go off and he could also do college or something. But how does that feel to you when you think about his future?

Raf Adams:

It's marginally terrifying, I think.

Cri Swift:

Yeah, I would say 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. Raph 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 him because they're really. There aren't, you know, there aren't a lot of post high school educational opportunities for kids who have developmental disabilities. You know, there's strive here in Portland, which is an incredible school and it takes what, 12 kids a year from all over the country. So his chances of going to strive are slim, although we'll try and make that happen. You know, the, the adult here in Maine, through the Department of Health and Human Services, there are adult kind of day programs where people, you know, work on learning life skills and they have a place to go and da da da. And there's a two year waiting list for that. So if you have a 21 year old, 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 you know, hopefully that's enriching to their lives as well. And you're on a two year waiting list for community programming. So it's, there are not a lot of options. So maybe, you know, we'll see what Henry wants to do, but hopefully we can find him some employment. Maybe he'll love paddleboarding, maybe he'll love boats, maybe he'll love radio shows.

Dr. Lisa Belisle:

I don't know.

Cri Swift:

Well, you know, but we, you know, we'll deal with. That's a Long time away.

Raf Adams:

We gotta get him to first grade. It's really hard to know now what Henry will be like. You know, 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'd be very happy to have him at home if that's what it takes. But it sort of means that looking down the road right now our lives are not that different from, you know, any parent who has a 6 and a 10 year old. But in, you know, 18 years, our lives could be significantly different. Because instead of having our kids all go off to college and we only see them at Thanksgiving and Christmas and vacations, one of our children is living at home with us all the time. So 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 Belisle:

Yeah, I think for me as a parent, it really, it just strikes me that it kind of changes the way you think about the parenting role. I mean, obviously I'm still parenting my 20 year old, but in a very different way. And so just what it means to be a parent is, I guess it's more. It's just more interesting.

Cri Swift:

There's more. Yeah, more to think about. So that's why we try not to.

Dr. Lisa Belisle:

Well, but taking every day as it comes. I mean, I think that that's basically what you're saying is 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, you know, finding the resources that you can and living your lives.

Raf Adams:

That's really what everyone does, you know, all the time. It's just more apparent when you have to. When your decisions seem like maybe not more consequential on a regular basis. But I think it's still everyone sort of comes around to that sort of way of living their lives.

Dr. Lisa Belisle:

I think you may be not giving yourselves quite enough credit. I see a lot of patients 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, you know, and manage them differently and because not everybody does. So I think the fact that you have needed to do that, and 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

Raf Adams:

as you might think, Yeah, I mean, but going back, I say that, I will say that having. Having Henry has caused me to be, I think, more compassionate and more towards other people, towards other adults. Because, you know, I think in some ways, I was younger before I had Henry. I was younger in the way that I had. I was more naive, I was more innocent, maybe, and I was sort of coasting, I guess. And then once I had Henry, it wasn't only that, you know, suddenly my life has become a little more complicated. But I realized by talking to other people and by, you know, by going to these meetings and by going to support groups or by going to the Buddy Walk and things, you realize that really everyone sort of has probably something that's made their lives a little more complicated, and you don't always know what that is. But I think we all need to be open to the idea that we all have something going on. And if we all come from it from that perspective, I think, you know, I think we'll just be better people.

Dr. Lisa Belisle:

Well, I appreciate your coming in and talking to us today. I know it's not always easy to talk about, 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 resources are fairly critical when it comes to having a child with special needs.

Cri Swift:

Absolutely.

Dr. Lisa Belisle:

We've been speaking with Raf Adams and Cree Swift, parents of Henry and Dylan, and we appreciate your coming in and talking to us today.

Raf Adams:

Thanks very much.

Dr. Lisa Belisle:

Thank you. As a physician and small business owner, I rely on Marcy Booth from Booth, Maine to help me with my own business and to help me live my own life fully. Here are a few thoughts from Marcy. 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 Marcie Booth. Let's talk about the changes you need. Boothmaine.com

Dr. Lisa Belisle:

it is my great privilege to spend time with many wonderful parents here in the state of Maine. And 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 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 Johnson:

Well, thank you and you're welcome.

Dr. Lisa Belisle:

Karen, you became affiliated with the Cape Elizabeth program through your son Eric, who is 25. You have three children. Tracy's 27, Eric's 25, and Alison is 21. And it was Eric coming into the world and being the person that he was that caused you to really decide this was an important thing for you.

Karen Johnson:

He started doing Special Olympic events in kindergarten and 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 be bowling, track and field, swimming or soccer and basketball. So 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 I was kind of hooked. I mean, it was really pretty. Just like going to any sporting event, it's really cool to see. But what I really liked about it, I saw what these young kids and adults, what their abilities were and that they, and what, you know, competing on a team, competing, you know, within a group, but also kind of competing with themselves that they can get, you know, get better and better or progress in their sport, you know, which is always, you know, gives them a lot, gives everybody a lot of Confidence when they can reach a certain level in whatever they're doing.

Dr. Lisa Belisle:

Eric has a diagnosis of autism. Is that right?

Karen Johnson:

He does, yep.

Dr. Lisa Belisle:

And what was that like to. You have an older daughter and a younger daughter, and then your middle child has autism. What was that like as a parent?

Karen Johnson:

Very challenging. Very frustrating at times. It was really overwhelming, but you have to. But I just had to do what I needed to do at that minute. You know, whatever was facing me that day, I had to do it. But the good news is I had a lot of great people that I worked with, both, like, 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. And as a parent, it's really. You go through a lot of. When you get a diagnosis, whether it's at birth or for us, it was two to four years later, you go through all the. Just like anything, first you might be in denial about it, and then you grieve it. And grieving, you need to grieve it. But then you have to get moving, too. You have to find the strength to say what's right up ahead of me? What can I do? And who can I. Who can I ask for help for this? And who can support him then will eventually support me, you know, teach him what he needs to know and go forward in reaching all those goals.

Dr. Lisa Belisle:

So you didn't initially know that Eric had autism?

Karen Johnson:

No, we didn't. But, you know, all the signs were there, but not knowing it. And, you know, he was a little kid, full of life, you know, very laughing, you know, and he played with his older sister, you know, kind of like the parallel play. But she could engage him and he didn't. And, you know, a typical story at age 2, he kind of lost his language. He had, you know, he would. I can't think of the word, but he would, you know, had a lot of gibberish, you know, but I could kind of understand it just because I was with him all the time. But, you know, people. People couldn't understand him. And so he lost. He had about 20 words at age 2. And that's usually when kids start putting words together. And then he, you know, all the little signs of lining up all his engines and, you know, and, you know, not really looking at you and not giving you that eye contact, you know, that the doctors always ask, does he make eye contact? And I would say, well, yeah, he does. But then I had Tracy before him But I forgot. And then when I had Allison and he was 4 years old, and when I had Allison and she just took my eyes and locked onto them, I said, that's what they're asking me. So other people saw the signs before I did, or I saw them, but I didn't acknowledge them. And people. And all these people, wonderful people who were working with me at the time, were kind of, you know, trying to lead me to where I needed to be. And eventually. And I did. And when someone finally asked me straight out one day, does he have autism? It was like a, you know, a bubble burst. And I said, oh, my God. You know, I knew it, but I didn't really want to look at it. And this person just. Just matter of factly asked me. And that was probably the best thing that could have happened at that time, because I said, okay, here we go. Never going to go. Never going to really get the support that we need to help them.

Dr. Lisa Belisle:

It does seem, from having spoken with other parents who have children with developmental delays, autism, other problems, that there. 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, maybe you didn't really ever want to do, because you still have a child that's sitting there that you're, you know, you've given birth to, and they need you.

Karen Johnson:

Yep. All that I can say is it's. It's a. It's a. A journey, an individual journey for everybody. You know, there's some people who can just really grasp. Grasp it right away and say, you know, give me all the information that you can. And for me, it was, you know, whether it was probably denial, probably, you know, I was, you know, Had a. You know, we got the diagnosis when Allison was born, so I had three little kids, and that was, you know, it was just kind of overwhelming, but yet I knew something was going on. But the good news is we were, you know, we did work with, you know, 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, you know, the diagnosis. So. But then when we. When I heard that, had that person ask me, that's when I said, well, we're really gonna. You know, I needed. I needed to get that word, you know, and I needed to embrace it. And what someone told me once, and I. And this is what I held onto and what I always would say is, well, I don't want to label them. But you know what? Sometimes labels help you. Help you. If you have something that you can, you know, that you can say, well, this is it, and this is what I need to do. It's almost like you can look in a book now and say, you, you know, 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, you know, I was, like, grasping everywhere for help. But then. So you take the label and you use it, but you don't, you know, you didn't say, well, this is my autistic son, or, this is my son, he has autism. You say, this is Eric. And then. And then, of course he would, you know, then people would say, okay, well, he's an interesting character or whatever, but, you know, he showed people who he was, whether that was good or bad, depending on the situation. But, you know, it is what it. You know, it is what it is. And so anyway, just once you get once you can grasp that. And not to say that's it, because there's all times during your whole. His whole life when I, you know, you'd be going along fine, and then. And then all of a sudden you hit a hill and you have to climb up that hill, and then, you know, you go down the hill again. And sometimes you hit a mogul and you go flying again. But. But this. And then. And then sometimes you grieve. You know, you grieve when he's not invited to a birthday party. You grieve at the kindergarten screenings because, you know, everybody has their kid and you're chasing yours. Or then you grieve at dances. You grieve at high school graduation, at college, acceptance letters. But you. But I couldn't. And I. And I let myself do that, but I couldn't stay there long because you just got to keep going, you know, But I think I had to do it. I have to do it, because if you just push it away, it just festers, you know, so kind of, you know, this, you know, you feel what you feel type of thing. But anyway, so. But anyway, I think it's a personal journey for everybody when they can look at it and when, you know, whatever struggle you have in your life, I think it's just, you know, there's just different paths you go to get there. And then 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 and you'll be and that you can go forward. And then your goal is always, like with your typical kids, is always to have him have some type of a life once he leaves the public school or as an adult. So that's always your goal. And just like you, it's just a different goal than your typical kid. But it's still that goal, you know, and you still take those steps to get there.

Dr. Lisa Belisle:

The goal of the Dr. Lisa Radio Hour is is to help make 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.

[Unidentified voice]:

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 lie on 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're called power places. My shaman that I worked 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, lie on my back, and instantly almost fall into a dream state. And 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 sort of create it in a very sort of dreamlike state. And then I return back to the drafting table refreshed and ready to design. And time and time 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@tedcarterdesign.com

Dr. Lisa Belisle:

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Raf Adams:

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Dr. Lisa Belisle:

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Dr. Lisa Belisle:

talk about the stages of grief. You know, denial and 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 that it's a continual process through

Karen Johnson:

it is through life.

Dr. Lisa Belisle:

And it is also interesting because I also have three kids and even at the important milestones, I feel some grieving. You know, I have my son who graduated from high school and I simultaneously was happy for him but grieved because he was leaving me. I have my daughter who's going to graduate from high school. And all of these things, I think as parents just keep, they hit us in a way that we don't realize that they will.

Karen Johnson:

Right.

Dr. Lisa Belisle:

But I would 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 extra layer of something on top of that.

Karen Johnson:

Well, but you know, the way I look at that, I mean, I think, I think the way I look at it is I don't know your story. You know, you, you can see my story because it's right there. But who knows, you know, what's really in your family and that's what kind of. And this is a, I'll tell you this quick story. When Eric was little and you know, he would have a tantrum or he would, you know, or 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 this, you know, oh my goodness. And couldn't, can't she handle that kid? And we were teaching Eric that, yes, I'm his mother and he calls me mom, but my name's Karen. So if you're ever lost, you know when someone says, what's your mom's name? Karen. So we would role model it back and forth. And then eventually he just started calling me Karen. And I didn't really mind because, you know, it didn't really bother me. My husband would. My husband said, you know, I'm your dad. Call me dad. And he would. But I. And one day it was time to leave a store, and he just did a spread eagle on the floor and he was yelling and all these people, 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, well, 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 of that go. Then I could pick him up, carry him out, and go into the car. And then. So I was kind of like the hero and not the, you know. But I just tell you that story because I. And whenever I see parents in the store struggling with their typical kid, and I say to myself, thank God it's not me today. Or, you know, 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, you know, everybody. And that's just what I assume that when. Now, when, you know, when he was younger or even now, if I'm out and, you know, he's having a tough time, they just, you know, well, thank God it's not me today, you know, so.

Dr. Lisa Belisle:

But yeah, that is actually a fair point. Even people who at least look typical, maybe there's something not, you know, that you just don't know 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 Johnson:

Well, you know what? The definition of a functional family is one.

Dr. Lisa Belisle:

I like that.

Karen Johnson:

So there's dysfunction, you know, in every family, whatever it is, you know, but we just all do the best we can at that minute, you know.

Dr. Lisa Belisle:

So the Special Olympics has been a way for. For you to help kids connect with themselves, but also to help kids connect with other kids who are doing Special Olympics and also for family members of these kids to connect with one another. Absolutely.

Karen Johnson:

Yep. And I think what it does for, you know, in our program, you know, we have. We do three schools, elementary, middle and high school. And we have about. Right now we have about 15 to 20 kids total. And the elementary school is a little bit less or not as, not as organized as the 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. So if it's like the basketball will be coming up. So we're going to have a unified team which is through Special Olympics. You have three Special Olympic athletes and then two partners. So the partners will play basketball with the three Special Olympic athletes, but they'll feed the ball to the kids, to the athletes and maybe set up the play. So we'll be having practices with that and then for the younger kids, they'll, they'll be working more on skills. So we'll have practice for just working on skills because there's a skill competition there. And then with the middle school and high school kids, there'll be a little bit more of an organized team. And 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 a team, you know, what it means to win or lose, what it means to be a team player and all the social part of it too, you know, going with your team on the bus, what you do on the bus, what you do while you're getting, waiting, waiting for your game and then the practice right before it and then the whole game itself. And I think what we also try to do is we try to, when we have them do these different activities, I think it empowers them and 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 that they can, you know, to know that your kid can. Not that they didn't know they could do it, but you know, to whatever level they're at. Because you know, our swim program that we have is kind of the, you know, kids will we start, start them when they're in middle, in elementary school, all the way through high school. And some of the kids are really nervous in the water and, and afraid. And once we get them in and it takes a little while, but then before you know it, they're, you know, doing laughs with either a bubble or by them without the bubble. But it's always, you know, it's self fulfilling for them because swimming's 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. And swimming is one of the. Probably the best, you know, because that's something they can bring on after they get out into the. Into the community, into the real world. And that's a lifelong activity that they can do. And it's great for their sensory systems. It just help organize everything for them. Anyway, I think that's one of our most successful programs within the program, because we do use. We have the kids swim one day a week during school, and we use that for practice, too, for the Special Olympic swim meet.

Dr. Lisa Belisle:

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 Johnson:

And that's what we try to stress, too, is the, you know, the social part of being out there in the community. Even, like being on. Like I said before, being on bus, being safe on a bus. Daily living skills, you know, we work on fine motor skills with them. You know, you have to lace up. You have to lace up that skate or you have to tie your shoe or, you know, now you need to, you know, put on your jacket or whatever. And then the gross motor is just. Well, that's what the activity is. You know, teaching them how to. Or encouraging them to run that extra, you know, you know, 50 yards or skate or ski or. And then they can realize that they can do it so they can go a little bit further.

Dr. Lisa Belisle:

Which isn't really that much different than coaching what you've termed typical kids.

Karen Johnson:

Oh, right, right. It's just. That's true. But I think sometimes with the kids we work with, typical kid just might learn it by just seeing it by. By seeing somebody do it. But, you know, with. With these kids, sometimes you have to break it down so they. So that they know what they're doing and why. Even why they're doing it, you know. But other kids kind of typical kids might just not. Not all the time, though, so difficult kids. You have to tell them. But, you know, a lot of typical kids will just. Because there's that peer pressure, too, to do, you know, like someone like Eric with autism, they don't get that peer pressure. They don't. It's all, you know, it's all like a theory of mind thing where it's, you know, they. They don't feel all that pressure that like a typical teenager would, you know, to conform to what the Norm is

Dr. Lisa Belisle:

there, you know, Karen, I'm sure there are people who are listening who would like to get more information about Special Olympics in mame. Some Special Olympics in Cape Elizabeth. Is there a website or is there a place you would.

Karen Johnson:

If they're interested in Special Olympics, they can go on the Special Olympics of Maine website. And that's s o m e. No, I'm sorry, it's specially. And they can see everything that the state, that the state Special Olympics offer for kids. And then there's a couple of people contact people on there and if they wanted to find out any information about Unified Sports, there's a contact named Ian Frank who can give you information about that. And 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. Bocce too is coming up and coming. So they do a lot, you know, just throughout the year, not just with the actual like, you know, events that they have.

Dr. Lisa Belisle:

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 benefited from your work are.

Karen Johnson:

And if I could say one thing before, I wouldn't be able to do this, Dave, and I wouldn't be able to do this without all the staff that's at school, the teachers, the ed techs, the social workers, the occupational therapist that works at the elementary school and she's worked with the older kids too. We wouldn't be able to do this without them. And also with the parent, support is key. They support us 100% in what we're trying to do. And without all of that support, I don't think we wouldn't be. We wouldn't have what we have in capable of it.

Dr. Lisa Belisle:

Well, since I haven't had a chance to meet all these people yet, I will thank them now and hopefully I will have a chance to meet them in the future. And I, 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 Johnson:

Oh, you're welcome. Thank you.

Dr. Lisa Belisle:

You have been listening to the Dr. Lisa Radio Hour and podcast show number 124, Special Olympians. Our guests have included Raph Adams, Cree Swift and Karen Johnson. For more information on our guests and extended interviews, visit Dr. Lisa.org the Dr. Lisa Radio Hour and Podcast is downloadable for free on itunes. For a preview of each week's show, sign up for our e. Newsletter 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'd 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 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.

Cri Swift:

Sa.