Transcription of Karen Johnson for the show Special Olympians #124
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 what … 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: 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: 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, it’s really, you go through a lot of …
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 you … 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 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 like 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 them. 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 and 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, probably I had a… We got the diagnosis when Alyson was born, so I had three little kids and that was … that was just kind of overwhelming, but yet I knew something was going, but the good news is we did work with … 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 … You didn’t say, “This is my autistic son. This is my son, he has autism.” You just say, “This is Erick.” Then of course he would … Then 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 when … 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: 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 that … I think 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 and that’s what kind of … 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 and not the … 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: I think what it does for … 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 we try to … 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 that they can … 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 … It’s 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 kid 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 just … 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 before we … I won’t be able to do this, 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, I don’t think we … 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.