Transcription of Maine Adaptive & Special Surfers #289
Speaker 1: You are listening to Love Maine Radio, hosted by Dr. Lisa Belisle and recorded at the studios of Maine Magazine in Portland. Dr. Lisa Belisle is a writer and physician who practices family medicine and acupuncture in Brunswick, Maine. Show summaries are available at lovemaineradio.com. Here are some highlights from this week’s program.
Mark Stevens: That’s actually a very exciting model for us just because that’s really our ultimate goal, to mainstream our participants and athletes and not separate them so that when they head out, they’re heading out just like you and I. That’s really a phenomenal thing to see.
Nancy Boutet: The surfing for special needs kids was kind of a new concept at the time. A good friend of mine was working with a lot of kids on the spectrum, autism, Asperger’s spectrum, and she asked me if I would take a few kids out surfing. I said yes, and I enlisted my husband and our son. We took three kids out the first year, and then the next year we started expanding the program right away. We went from 3 to 23 to, gosh, we’ve had up to 95 kids and about 230 volunteers. Once you do it, you’re pretty hooked.
Lisa Belisle: This is Dr. Lisa Belisle, and you’re listening to Love Maine Radio, Show #289, Maine Adaptive and Special Surfers, airing for the first time on Sunday, April 2nd, 2017. Maine is home to numerous venues for outdoor enjoyment. Our forests, woods, and waters provide opportunities for not only connecting with nature but also for social, physical, and sometimes competitive pursuits.
Today we speak with leaders of two organizations that make these pursuits available to Mainers of all levels of physical capability. Barbara Schneider is the executive director and Mark Stevens is a board member at Maine Adaptive Sports and Recreation. Nancy Boutet is the executive director of Special Surfers in Kennebunk. Thank you for joining us.
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Lisa Belisle: Today it is my great pleasure to have with me Barbara Schneider and Mark Stevens. Barbara Schneider is the executive director of Maine Adaptive Sports & Recreation, and Mark Stevens is vice president of the organization’s board of directors. Maine Adaptive, based in Newry, is the largest year-round adaptive recreation program in the State of Maine for adults and children with physical disabilities. Thanks so much for coming in.
Barbara S.: Thanks for having us.
Mark Stevens: Great to be here.
Lisa Belisle: I really like this program. I like what it has to offer not only the children, but also the adults of the state of Maine. Tell me a little bit about its beginnings.
Barbara S.: As the somewhat new executive director, what I know is the history, not personally but by being part of the organization. It was founded in 1982. A Portland orthopedic surgeon by the name of Chip Crothers had a patient who he believed would benefit from being involved in skiing. He got in touch with Les Otten, who at the time was the owner and general manager of Sunday River, proposing to create a program for people with physical disabilities, at least starting with this young patient so that she could ski. He thought it would be good for her balance, for her general being able to be outside, her general health and wellbeing. That was the way it started. Mark actually can give a good bit of history because his father became one of the early founders of the organization as well.
Mark Stevens: Yeah. My earliest remembrance of being involved in Maine Adaptive at the time was Maine Handicapped Skiing, but now it’s been rebranded Maine Adaptive Sports because we do so much more than just skiing. I was conscripted at an early age. I had just graduated from Bates College. I was on the ski race team up there, and my father basically told me and several of my race ski team members that we were going to be doing the Ski-a-thon. That was in 1985, and that was the first Ski-a-thon, which is coming up here shortly.
The program has just grown from the early beginnings with Chip and Les, and there was another Charlie involved, Charlie Roscoe, so really four founders. Just been exciting to see the growth of the program, and now we’ve expanded into year-round programming. It’s not just skiing. We do summer programming, which involves biking, kayaking, geocaching, all sorts of different activities. It’s been really phenomenal to watch the organization’s growth.
Lisa Belisle: You mentioned two benefits, one being the outside, nature, the connection to that that you’re able to foster in people who take part in this. Then the other is really getting to know oneself physically in a way that can sometimes be limited for people who have different abilities. How much science is there behind this?
Barbara S.: There’s science in that our volunteers and most of our instruction is provided by a cadre of very dedicated volunteers, go through training where we the staff and outside trainers provide some background on disabilities and how they may be affected by cold or by movement patterns. There is some science that we all have to learn to provide the product that we do, but the idea is that people with disabilities can benefit socially, physically by exposure to sports.
There are so many examples in our program of young people who will start skiing with a device called a slider, for example, which is kind of like a walker with skis on it. They’ll hold onto a slider, but over a season they may begin to ski without holding on because they’ve developed some muscle tone, or they’ve shown some improvement in how their balance operates and their proprioception gets better. We don’t operate as a therapeutic program in a hospital setting. We’re a recreational program, but we try to understand what it is we have to do to tailor both equipment and the instructional process to the people who recreate with us.
Lisa Belisle: This is something that you’ve specifically decided that you’re going to be helping children and adults. You’re not just going to limit the age range.
Barbara S.: Right. We have children as young as four, and during the week it’s a really interesting mixture when you come to Sunday River, which operates a weekday program as well as a Sunday program. There’ll be a lot of preschoolers and four, five, six-year-olds. Then there are folks who are much older on the other end of the spectrum, people who have had Parkinson’s disease or incomplete spinal cord injuries or strokes.
It’s really nice to see that intergenerational activity between young kids coming to ski and older people, some of them returning to a sport that they had done before, but because they have perhaps low vision or limitations, need to have people with them and instructors to guide them.
Lisa Belisle: That’s interesting. I had been aware that you had people participating with different levels of ability, but I didn’t realize that you had older adults who might have at one point had “normal” abilities but then have succumbed to whatever illness or infirmity that they’ve had. When did that start to shift, or has that always been the case?
Mark Stevens: I think it’s always been that way. I can remember early on some of our early athletes that came to us had been hurt in motorcycle accidents and things like that. We have a large group of what we call mono-skiers or bucket skiers today, and they’re very accomplished. To watch these athletes move around on the mountain so freely when in their daily lives it’s a struggle to get around, and then when they arrive with us they’re out on the mountain just like any able-bodied skier. Actually, some of them move probably better than 80% of the ski population that’s out there today. It’s phenomenal to watch.
Lisa Belisle: It must’ve been interesting for you, Mark, as someone who has raced. You were in skiing in a very different environment. You were in a competitive environment. Everything was keyed towards going fast. How did your mindset shift when you started working with Maine Adaptive?
Mark Stevens: It’s interesting because I still view all of our participants as athletes. I think everybody has inside them some sort of athlete, whether it’s super competitive or just subtly competitive. We actually have a race team of kids today that compete both in disabled races that are geared towards various injuries that they have as well as some of these athletes actually compete against able-bodied athletes direct up and do very well. That’s the part that I really get a kick out of is watching those athletes move up through our program.
Some of them come to us, had never skied before, and then they progress through our volunteer corps and then move on to our race team and do very well even at the national level. We’ve actually had two athletes go on to compete in the Paralympic Games. It’s pretty exciting for me as an ex-racer. I still race a little bit, try to keep my body together, but it’s exciting for me to watch these types of athletes come through the program and know that the dollars that we’ve raised and the opportunities we’ve afforded them allow them to get out there and get these same opportunities that regular able-bodied athletes get every day.
Barbara S.: I was going to say, when we were talking about the goals of the program, whether it’s wellness, whether it’s socialization, whether it’s giving people appropriate risks to challenge themselves with, one of the barriers to accessing recreation for people with physical disabilities, it’s not just having the physical space that’s accessible or places to park that are closer to lodges. It’s the economic barrier. The equipment is particularly expensive. The buckets that Mark was talking about run about $5-6,000, so it’s not the kind of ski gear that someone can easily purchase.
By having it and providing that free of charge and providing the instruction free of charge, we eliminate a barrier to access. We are very unique in Maine and very unique across the country in that we’ve had phenomenal support over our 35 years from Sunday River that’s enabled us to put people out on the snow, volunteers and participants, without charging for lift tickets, without charging for lessons. That’s a phenomenal thing. For families who have additional costs because they have children with disabilities, for folks on fixed income, that’s made a big difference.
Lisa Belisle: How many people does your program help every year?
Barbara S.: It’s close to about 500 winter and summer. Some people will come because they’re visiting Maine for a week, and they’ll spend a week with us skiing. We’d love to encourage more of that in the summers too, and we’re starting to see that. Other people will come three or four times a season.
We have a bus that comes from Portland, generously donated to us by North East Ambulance Services. That bus will pick people up at the Iris Network’s housing center in Portland. Others will come there, and all these folks will come on Thursday to Sunday River. They’ll ski not necessarily every week, but we’ll alternate who gets to come with the bus. Folks will have the opportunity to ski a couple times a year.
Lisa Belisle: How many people have you served over the entirety of the 35 years?
Mark Stevens: Wow. That’s a great question. It’s got to be in the thousands.
Barbara S.: If we’re at about 400-500 a year, it could be up to 15, 12?
Mark Stevens: 12, yeah.
Barbara S.: 12,000, just thinking the numbers and thinking the years. Our ski program expanded from Sunday River to Sugarloaf, so we are there on weekends and some Fridays. Also, every once and a while we’ll do a little bit of programming at Camden Snow Bowl and at Black Mountain in Rumford. We do Nordic programming in the winter both at Pineland Farms and the new Bethel Village trail system that is operating out of the Bethel Inn. Several nonprofits in Bethel have come together to take over those operations for a community trail network, and we do Nordic skiing and snowshoeing in Bethel on Fridays.
Lisa Belisle: Mark, you mentioned also that summer was an important part of Maine Adaptive now. Where is your programming located in the summertime?
Mark Stevens: That’s a great question because we’re all over the state. We have a van, and we also have a trailer. We can take equipment pretty much to a bunch of different venues, but our bicycling happens here at Back Cove. We do take weekend trips up to Acadia, so there’s some pretty exciting venues that we go to. We also do kayaking up on Range Pond as well as, trying to think of the other venues where we….
Barbara S.: We’ll do an ocean kayak once a year out of Harpswell. We will do some paddling this summer closer to Bethel in an attempt to engage the community there and folks that may come to Bethel for summer recreation. We’ll do some river paddles. The Androscoggin Watershed Council does a source to sea paddle every summer from the beginnings of the Androscoggin at Lake Umbagog all the way down to Merrymeeting Bay. We’ll take our adaptive paddlers on one of those river sections to paddle along with the folks that are paddling for the day. That’s a way to integrate adaptive programming with regular recreators. That’s always a fun event too.
Lisa Belisle: This must cost quite a lot of money. How much does it cost per year to operate Maine Adaptive, and how much does it usually break down to per participant?
Barbara S.: Our operating budget varies between about $600,000 and $750,000.
Mark Stevens: Give or take.
Barbara S.: Give or take. The cost per participant is probably something I haven’t figured out, but we look at what our numbers are and where we think we can grow our programming. We have, as Mark talked about earlier, the Ski-a-thon raises about half of our operating budget, between $350,000 to $400,000. We do an annual campaign. We do a lot of grant writing where we’re looking to private foundations, to corporate sponsors. We’ve had tremendously good success with that.
We’re interesting in that we don’t take any direct federal funds or state funds, so we’re not applying for those governmental grants that have a lot of oversight and infrastructure requirements. Everyone once and a while a foundation may get federal funds that they’ll pass through in a grant to us. It is definitely an expense, and we’re always looking for opportunities to both raise awareness and raise funds as all Maine nonprofits are doing now. We’re fortunate we have long-time committed individuals, long-time committed corporate sponsors that really have helped us over the years.
Mark Stevens: Yeah. I don’t think we could not emphasize enough Sunday River’s cooperation. Without their in kind support of lift tickets and just everything that they do for us up there, they’ve been a phenomenal partner from the beginning and just really fortunate to have that relationship and to be where we are. We’re located right slope side. Our building is located slope side on the Sundance Learning Center, which has what they call a magic carpet, which is a surface lift. Our athletes just walk out of the building and they’re on the hill and off they go. You couldn’t ask for a better setup or a better partner than Sunday River’s been.
The last 10, 12 years, 15 years, we’ve developed the same real relationship with Sugarloaf. Actually, at Sugarloaf we don’t have a separate building. We actually operate mainstream right out of the base lodge, so our athletes, participants get booted up and suited up and out they go with the general population. That’s actually a very exciting model for us just because that’s really our ultimate goal is to mainstream our participants and athletes and not separate them so that when they head out, they’re heading out just like you and I. That’s really a phenomenal thing to see.
Barbara S.: In so many ways the mountains are great. I’ll give a couple of examples. February 18th, Saturday, we had a race where we invited athletes from adaptive programs in New England, and we had the hill space provided to us. We had the comps and events department set our course. We took over the race arena that morning. Our athletes came down and were announced. There were visually impaired athletes. There were athletes with cognitive disabilities in what’s called a Mills Cup competition. The physical disability athletes compete in a Diana Golden Series competition. We had the shuttle buses to take the family members from our building at the South Ridge Lodge. The resort’s shuttles took the spectators to Barker. That was great.
At the end of the season up at Sugarloaf there are going to be US Nationals. We’re going to be able to present medals to some of the athletes in one of the days of competition on behalf of Maine Adaptive just to recognize us as part of the Sugarloaf community. These opportunities are great. They help us build exposure. Coming up fairly soon is a World Pro Ski Tour that’s coming back to Sunday River, and that event will generate some interesting buzz and excitement at Sunday River. We helped bring that organization there, and we’re going to be the nonprofit featured partner for that event.
It’s really fun to be connected to these resorts and help them by bringing families to the mountain. They certainly help us by providing us with hill space and tickets and all the people from food and beverage who help cater our Ski-a-thon to the lift operators who are so conscientious about loading our bucket skiers on. It’s really a great relationship.
Lisa Belisle: It sounds like you also in addition to having people who help support financially your organization by doing the Ski-a-thon or by donating and in kind, you also have people who volunteer regularly in the program. What does that look like?
Mark Stevens: The volunteer population, we couldn’t do what we do today for the price of what we do it without the volunteer staff that we have. They’re just amazing. They basically do whatever it is that needs to be done, whether it’s giving up vacation time to come and work with these athletes. It’s pretty awe inspiring to watch how that all works. We’ve had volunteers that have been with us 20, 25 years coming back year after year providing the instruction and the athletic help to get our skiers out there on the hill.
We have a lot of volunteers that actually volunteer in the summertime as well. We’ve got a lot of crossover there. Skiing and biking and that sort of thing, it’s those two sports that dovetail each other from season to season, and so we see the volunteer pool shifting from winter to summer. We have north of 400 volunteers today that come in and help us do what it is we do. In addition to that, we’ve been fortunate to have some interns come in from UNE down there in some of the programs that University of New England offers. We’re always open to finding people from the various colleges that want to come in and perhaps do some clinical work with us or anything like that.
We’re very open to people coming in, and if there’s anybody out there that would like to volunteer, maineadaptive.org. I’ll put a plug in for it right now. Come to the website, give us a call. We’d love to have you come help us out. I think once you’re involved in the volunteer community, just the buzz from it, you just feel better about yourself as a person once you come through the Maine Adaptive doors.
Barbara S.: We talk about the benefit, the socialization benefit for our participants, the exposure to the outdoors. Our volunteers span spectrum and age too. We have a junior volunteer program, and then we have some medical students from UNE who volunteer. We have a great relationship with Gould Academy, which is located in Bethel. Every student at Gould has to spend time on snow. Some are competitive athletes. Some are on the prep team. Some participate in ski patrol. Some work in the ski school teaching community groups. We have this amazing group this year of four students whose time on snow every day but Friday is spent with us, and that’s been great. They bring a lot of energy, and it livens up our volunteer pool a little bit.
Socially, I think our volunteering is important for our volunteers. For many of them, they’re retirees. They may have had a lifetime of skiing. Many are instructors who have worked at Saddleback when they were younger or worked at Lost Valley or were on the staff at the ski school at Sunday River or Sugarloaf. This is a home for them. It’s really a nice community of participants, of volunteers. It’s great.
I have been there at Maine Adaptive only since October of 2015, and I spent some time in the ski school and have my instructor certifications. I have always been a child’s coach. I’ve started to do more training for our volunteers, and I have to say, there’s some amazing skiers who have even in a more advanced age of skiing have all those fundamental moves that they’re just beautiful skiers. They may not take the risks that young ski instructors take, but they know their stuff.
We are very committed to making sure through our training that we give all our instructors the skills they need in all the sports. We set up ACA paddling instruction courses to get people certified. We write grants to send people through wilderness first aid classes. We scholarship our volunteers to do Professional Ski Instructors of America certification exams and trainings. That’s very important, and it shows because the quality is very good in our instruction.
Lisa Belisle: It’s been a pleasure to spend time speaking with each of you today. I’ve been talking with Barbara Schneider, who’s the executive director of Maine Adaptive Sports & Recreation, and Mark Stevens, who is vice president of the organization’s board of directors. I really appreciate the work that you’re doing and have been doing as an organization for 35 years now. I’m sure that we’re going to be able to continue to do this for many more years to come.
People who are interested can go to our show notes page, and we’ll redirect to your website. I hope people will do some Ski-a-thon fundraising, some volunteering. It sounds like really there’s a place for anyone who’s interested in being involved. Thank you, Barbara and Mark, for coming in today.
Mark Stevens: Thanks for having us.
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Lisa Belisle: Today it is my great pleasure to have with me Nancy Boutet, who is the executive director of Special Surfers. She’s been bringing volunteers and special needs children and their families together for some good, clean fun, sharing the surf stoke at Kennebunk’s Gooch’s Beach for over a decade. Nancy’s boundless energy is only surpassed by her passion for Special Surfers. Thanks so much for having this conversation with me today.
Nancy Boutet: My pleasure.
Lisa Belisle: Nancy, obviously surfing is important to you because you also have had this affiliation with Aquaholics Surf Shop. Why did you first get interested in surfing?
Nancy Boutet: Oh boy. Our son wanted a surfboard for his middle school graduation, and when he got into it, we got into it. We were into body boarding for a while, and it just seemed like a natural progression.
Lisa Belisle: Are you originally from Maine?
Nancy Boutet: I’m from New Hampshire. Then when I was in high school I moved to California, and I stayed in California for a while. Then I came home to New Hampshire and visited Maine and met my husband when I was 17. The rest is history.
Lisa Belisle: Now, do I understand that you actually went to Hollywood at the age of 16 and to have an affiliation with your husband’s rock band?
Nancy Boutet: I have an affiliation with my husband from meeting him in Maine.
Lisa Belisle: Oh, from meeting him in Maine.
Nancy Boutet: Yes. In Old Orchard Beach at the pier actually.
Lisa Belisle: Excellent. Was he the one that was actually out in California?
Nancy Boutet: No. I was living out there with my sister and my brother-in-law and his entire band in a little three-bedroom house in downtown Hollywood. It was nothing short of very interesting.
Lisa Belisle: Did this influence in any way your interest in the ocean or your interest eventually in learning how to surf?
Nancy Boutet: Not really. Actually, I’ve played a lot of beach volleyball and learned to surf both in Maine. I never did either one in California. I think I surfed once at a trade seminar in California a few years ago, and that was less than exciting, too. There’s too many people out there for me. I can hardly go there anymore.
Lisa Belisle: You spend part of the year here in Maine and part of the year elsewhere.
Nancy Boutet: Yes. I’m a little late for this interview because I was out surfing. I am living in Costa Rica in the winter and lucky enough to be in an oceanfront home with some good surf breaks very close by. I have my husband run me up to the break with my surfboard on his motorcycle, and then I just walk back. It’s about a mile from our house to where the waves are good.
Lisa Belisle: You have found something in surfing that so appealed to you that you decided that you were going to do this program for special surfers.
Nancy Boutet: Yeah. I think I can relate to these kids. I’m pretty hyperactive, and I have a short attention span. I find that surfing requires a lot of focus, and it’s really great for these kids because it really does get them in a place where they feel comfortable. They get into the zone, and they feel successful. It demands all of your attention.
Lisa Belisle: You started Aquaholics Surf Shop in 2002, and it was really only a year later that you began getting interested in working with kids who have special needs.
Nancy Boutet: Right. The surfing for special needs kids was kind of a new concept at the time. A good friend of mine was working with a lot of kids on the spectrum, autism, Asperger’s spectrum. She asked me if I would take a few kids out surfing, and I said yes. I enlisted my husband and our son. We took three kids out the first year, and then the next year we started expanding the program right away. We went from 3 to 23 to, gosh, we’ve had up to 95 kids and about 230 volunteers. Once you do it, you’re pretty hooked if you’re a kid or a volunteer. The parents have as much fun as the kids, and we have as much fun as the kids. Everybody has a blast.
Lisa Belisle: This is something that you do once a month.
Nancy Boutet: It is on the third Tuesday of June, July and August. It’s always the third Tuesday. That’s how I remember it. It’s a free program. We have never charged for this program. We beg, borrow, and steal surfboards from anywhere we can get them. They have to be soft boards, so we try to maintain a level of safety. We need wetsuits because the water’s always cold, so we put almost every kid in a wetsuit. Some kids can’t quite cope with putting on and taking off a wetsuit, but for the most part the kids love wearing the wetsuit, so it works out great. We’re a little bit short on equipment.
Lisa Belisle: Initially when you were doing this, because you had Aquaholics, the surf shop in Kennebunk, you were able to bring a lot of rental equipment from there to the Special Surfers program.
Nancy Boutet: That’s right. When we owned Aquaholics, we used to use every bit of equipment we had. We had over 45 regular surfboards and about a dozen standup paddleboards and, oh boy, about 120 wetsuits. We used to bring everything down to the beach, but now I can’t exactly expect people to forego that rental income. They allocate some surfboards, and we have to go according to what we think we can get for borrowed equipment. We do have some equipment through the program, and we grow it every year, but we are nowhere near our 50 boards we need for just the kids that are already on the list, and we have a wait list.
I think the wait list is about 35 kids for each night of the year this year, and that’s 35 kids on the spectrum. They’re ambulatory. They can control their body muscles and things like that. Then we have six kids that we strap into beach chairs on standup paddleboards and take them out and rock their world. Those are kids usually in wheelchairs or with mobility issues, people who walk with crutches and things like that. We are kind of stressed for equipment, so hopefully we’ll be able to borrow or buy what we’re going to need.
Lisa Belisle: You have a fundraiser that’s going to be coming up in March with Bayside Bowl.
Nancy Boutet: Right. That’s a thing where we have a bunch of captains and teams, and on those teams they are raising money as teams to compete against each other, which really is more of a fun fundraiser than a competitive fundraiser. We have a bunch of people running a bunch of fundraising programs, and that one’s being run by Tom Reynolds and Holly St. Onge from Portland. I guess they’re both into bowling. I don’t do much bowling myself, but it sounds like it’s going to be a blast.
Lisa Belisle: You have a lot of people in the area that support your program. You’ve had up to 230 volunteers in one night that you said. How many volunteers have you had over the course of this program?
Nancy Boutet: Oh boy, probably a couple thousand. Usually surfers are a little hard to nail down as far as a schedule, so as we get closer to the evening that we’re going to need these people, I end up sending a bunch of emails and calling everybody I know and trying to get them to sign up and tell us that they’re going to be there. A lot of people tend to just show up and not register, which is kind of hard to plan for when we need one experienced surfer and then one person to direct traffic per kid.
You need an experienced surfer to push the kid and help the kid catch a wave, and then you need a helper that grabs the kid when they get to shore and brings them back out to the surfer. Because with 100 kids in the water, it tends to be a little bit of mayhem, and you need to keep them going in a straight line and focused on what they’re doing and getting as many rides as you can. That’s a lot of volunteers. It’s a little bit of a zoo when it comes right down to it.
Lisa Belisle: Where do your volunteers come from?
Nancy Boutet: Oh boy. I have someone that comes up from Connecticut just to volunteer, and then he drives home. Sometimes he stays in a hotel overnight, but he drives up for the event, helps out for the event. He usually donates a board for the event, and then he drives home. We get kids that come all the way, we’ve had from Toronto and Calais and Connecticut, New Hampshire, Vermont. It’s a program that the kids look forward to, the parents look forward to. The volunteers look forward to it. It’s a win-win situation.
Lisa Belisle: When I was there last August, I met a volunteer who I believe was from Australia or New Zealand.
Nancy Boutet: Probably both. In Australia one of my friends was up from Sydney, and she was here in August. She comes up pretty regularly, and she planned her trip so that she would be there in August. I think she’s been there for one other event too. She’s in public service in Australia, and this was just right up her alley. She loved it.
Lisa Belisle: Yeah. I believe she told me she’s a police officer.
Nancy Boutet: Yes, she is an anti-terrorism agent in Sydney.
Lisa Belisle: For people who are interested in volunteering, you don’t necessarily need to be a surfer per se.
Nancy Boutet: No. There are so many jobs we have. We have dry land jobs. We have administrative jobs. We have fundraising jobs. We have surfer jobs, and we have jobs for people who want to get in the water and interact with the kids but don’t know how to surf. Really, surfing, it’s a big part of it in the logistics of it all, but it’s a small part of it in the volunteerism.
Lisa Belisle: When I was there, I was watching a young man. Actually, I call him a young man, I think he’s around my age actually. He has been doing this for a while. He was in a wheelchair on a special surfboard. I think there were six to eight people who were helping bring the surfboard into shore.
Nancy Boutet: We call that the gauntlet. We want to keep those kids upright, people and kids. You’re probably talking about Brian Benet. He’s probably 42 now. He has been in a wheelchair all his life. He’s nonverbal, and if you saw him going down the sidewalk with his aide, you would think that there wasn’t much going on. He’s very intelligent. He is a college graduate. He’s sent me some very eloquent emails thanking us for the program. We try to keep those kids upright because they’re not supposed to go underwater, although we have dumped a few and it has not been serious as of yet.
We have a training program going into place, and we have a lot of volunteers for the kids on the wheelchairs trying to keep them going in a straight line. That usually keeps them upright. We have pontoons on their boards. We do everything we can to keep them from dunking under, but sometimes they dunk. Some of the kids dunking under is not a problem. We have a girl named Ashley Gray who has her own TV program in Biddeford. She dumped a bunch of times. Her grandmother told us we were doing too good of a job because she couldn’t get a picture of her upside down, because she thought that would be pretty funny.
Lisa Belisle: There doesn’t seem to be any fear.
Nancy Boutet: No. I don’t know, I guess you could be afraid of being underwater, but when every day is spent in a wheelchair, I would think that a little bit of excitement would be a good part of your life.
Lisa Belisle: This is held at Gooch’s Beach in Kennebunk. When I was there, I noticed that you had a lot of community support. There were people that were standing watching the program, and it seemed like a pretty appreciative crowd.
Nancy Boutet: The people in Kennebunk have been great. The government has been great. The community’s great. When we have that many people at the beach, you got to think about how many cars are down there parking. For years I used to go put little notes on people’s doors and mailboxes and in their yards and stuff saying, sorry, we’re definitely going to inundate you, but I’ve never had any complaints from anybody. I’m sure it has been an imposition on some people.
We get people from the dog walking monitors to the town manager and the assistant manager and the parks and rec director. Everybody is very supportive. It’s really great to see that everybody is so into the community spirit that this brings up.
Lisa Belisle: You’ve been doing this for more than 10 years now. What lessons have you learned?
Nancy Boutet: Never assume anything. Before this program started I used to think that if I saw a kid melting down in the grocery store or somewhere, I thought maybe they were bratty. Now I realize that a lot of people are just overwhelmed when they get too much stimulation or when they’ve been pushed beyond their limit. I’ve gotten a lot more accepting of different behaviors from different people.
I’ve learned not to assume anything. Like Brian Benet, when he sent me such a wonderful email, I realized that I had assumed that he was non-communicative because he didn’t have anything in there, but he’s quite communicative, and he uses his computer to do it. I can’t even imagine not being able to communicate what’s in my mind to someone that I would meet on the street, and these people are amazing individuals. They find a way.
Lisa Belisle: You currently are offering this program once a month in the summer. Have you ever considered expanding it and offering it more frequently?
Nancy Boutet: Yeah, we’d love to do that, but there’s a lot involved. It’s a lot to put together, and we would need more equipment. I think we just need to be financially a little bit ahead of where we are now because it’s really a lot of work, a lot of energy, and it’s a lot to ask of the volunteers that help. You figure especially our administrative volunteers put a lot of work into that one night each month, and to ask them to do it more times a month would be almost like asking them to take on another part-time job.
Lisa Belisle: Your hope is to be able to bring kids in off the waiting list. You said that you have 56 kids in the regular spots, and then you have 35 more out there who are waiting to join the program.
Nancy Boutet: Right. That 35 is just as of yesterday when I checked the list. We leave that open. What we do is we can look at the date that you’ve signed up, and in the past I have usually when the event gets closer, I just tell people to come on down and we’ll figure it out. Now we have an official board with official rules and official insurance and all kinds of regulations and all that kind of stuff. Now I have people that I have to bring into these decisions and stuff, so it’s going to depend on how much equipment we have. It’s going to be sad, but I think there are going to be some people that are not going to be able to come because we won’t have the resources to tell them to come on down.
Lisa Belisle: Your goal would be to raise enough money to be able to continue to keep this free for everybody who’s involved and also bring more people in.
Nancy Boutet: That would be great, and I don’t think I would have any trouble getting the number of volunteers we need to handle the kids when we get more kids in the program just because once someone has come, they tell everybody how much fun it is. It’s just a magical experience for anybody that comes to it. The people that watch go crazy. The people that participate go crazy. The parents go crazy. It would be great if we could take more kids. It’s going to take a lot more equipment to expand the program.
As it is we have about 20 boards that we own and about 22 wetsuits. Some of those are just wetsuits that were donated, and the sizes are not exactly something that’s very popular. When you think about the fact that even if you just stick to the kids that are on the regular registration list, we have to have a couple of wetsuits for each kid to make sure we have wetsuits to fit everybody, so we need more than 50 wetsuits.
We absolutely need 50 boards for the kids on that program and then three more boards for the kids in the wheelchairs because we do two time slots for that just because there’s no way we could put six kids on wheelchairs out there and have a core group of 36. We call that special ops, and then we have people standing in a line all the way to shore trying to keep the boards going straight. It’s a lot of people. We pretty much fill that bay at Gooch’s Beach.
Lisa Belisle: The day that I went it was also not great weather, but you didn’t want to cancel it because this is something that everyone looks forward to for the entire summer.
Nancy Boutet: Right. For everybody to rearrange their schedule, that’s about 300 people, not including the parents of the kids, that you want to try to reschedule and rearrange and everything. I don’t think we could make it work. We just go and plan on it. Then if we get thunder and lightning, that’s the only thing that holds us back. We do it in rain, drizzle, everything like that. I can tell you nobody even notices. You’re already getting wet.
The people standing around watching might be getting wet. A lot of them bring umbrellas, but everybody has a great time whether it’s raining drizzling or sunny. If it’s sunny, everybody shows up. Some of the kids on the spectrum won’t come if it looks like rain or if it looks like weird weather just because that’s one of their triggers, so we just run it. Plan it, run it, and if we got to leave, we got to leave.
Lisa Belisle: Is there any sort of education that you do with volunteers around some of the special needs that these children and adults have?
Nancy Boutet: We’re putting together a program right now. We have a few people on the board who are professionals. One is a medical director for the Big Wave Surf Tour. One is a neurologist. One is an occupational therapist. They are all concerned about our safety, so I have a program that I’ve used for surf lessons through the years through Aquaholics surf lessons.
We’ve done tons of lessons for that, so we’re going to integrate some safety procedures from that and from Terry Ferrell, our medical director, Tom Reynolds, our neurologist, and Holly St. Onge, our occupational therapist. We will probably get some video made up and some literature, and we’ll try to get that out to all the volunteers so we can keep our record of safety. Because we’ve had an amazing run, and we’ve been very fortunate.
Lisa Belisle: How much do your volunteers understand about kids who are on the spectrum?
Nancy Boutet: We try to discuss that before the event. Usually I stand up on my truck and try to yell to all the volunteers that are working with the kids that are not mobility challenged. I think a lot of people come into it not knowing what to expect. When you connect one-on-one with these kids, you learn so much. You learn so much about yourself. You learn so much about the world. You learn so much about these kids. I think it doesn’t take long for you to figure it out.
There are a few key things that you want people to know when you’re working with kids on the spectrum. A lot of it just has to do with communication and how to communicate with them. They’re very literal, so you got to be very clear in your direction with them. Some of it is you just got to let them go. I tell people I’m not worried about if they stand up, if they surf, whatever, as long as they’re having fun. That’s what it’s all about.
Lisa Belisle: What percentage would you estimate do you have of kids who are on the spectrum or who have Asperger’s versus other types of special needs?
Nancy Boutet: We have kids that have every kind of diagnosis. We have kids that have multiple diagnoses. We don’t have any requirements anymore. If you feel like your kid is special needs and they belong in the program, if your doctor says it’s okay, we take them. We have kids with very rare syndromes. We have kids with Down syndrome. Most of the kids are on the spectrum, and a lot of the kids have multiple diagnoses.
Some of the kids you would never know that they had any kind of diagnosis unless you spent a few minutes with them or an hour with them or a couple hours with them. Some kids you could never tell, but we just want everybody to come and have a good time and feel like they’re rocking the world.
Lisa Belisle: What is it about surfing that has really made this so important for the kids and adults that take part in this program? What is it about the water and the experience?
Nancy Boutet: I think the fact that it completely demands their attention on every level and it’s every second their mind is engaged. There’s the movement of the water, the movement of the board, their focus on being balanced, everything moving so fast. They can’t be distracted. They are so focused, and I think that is a relief for them to have just one thing for their mind to be tunnel vision, paying attention, enjoying and watching happen all around them.
Lisa Belisle: I encourage people to learn more about Special Surfers. We’re going to have an article about your organization in Maine Magazine, so people can read about that there. Also, we’ll put a link on our notes page for the radio show. I’ve been speaking with Nancy Boutet, who is the executive director of the Special Surfers and who has been bringing volunteers and special needs children and their families together for good, clean fun, sharing the surf stoke at Kennebunk’s Gooch’s Beach for over a decade. Thank you so much for having this conversation with me today and for all the work that you’re doing putting all this positivity out into the world.
Nancy Boutet: Thank you for calling, and thanks for having us. Thanks for spreading the good word.
Lisa Belisle: You have been listening to Love Maine Radio, Show #289, Maine Adaptive and Special Surfers. Our guests have included Barbara Schneider, Mark Stevens and Nancy Boutet. For more information on our guests and extended interviews, visit lovemaineradio.com. Love Maine Radio is downloadable for free on iTunes. For a preview of each week’s show, sign up for our e-newsletter and like our Love Maine Radio Facebook page. Follow me on Twitter as Dr. Lisa and see our Love Maine Radio photos on Instagram.
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Speaker 1: Love Maine Radio is made possible with the support of Berlin City Honda, The Rooms by Harding Lee Smith, Maine Magazine, Portland Art Gallery, and Art Collector Maine. Audio production and original music have been provided by Spencer Albee. Our editorial producer is Paul Koenig. Our assistant producer is Shelbi Wassick. Our community development manager is Casey Lovejoy, and our executive producers are Kevin Thomas, Rebecca Falzano, and Lisa Belisle. For more information on our host production team, Maine Magazine, or any of the guests featured here to today, please visit us at lovemaineradio.com.