Maine Adaptive & Special Surfers #289

Mark Stevens:

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, when they head out, they're heading out with exactly the just like you and I. And so that's really a phenomenal thing to see.

Nanci Boutet:

The surfing for special needs kids was kind of a new concept at the time and a good friend of mine was working with a lot of kids on the spectrum autism Asperger Spectrum and she asked me if I would take a few kids out surfing and I said yes. And I enlisted my husband and our and we took three kids out the first year and then the next year we started expanding the program right away and we went from three to 23 to gosh, we've had up to 95 kids and about 230 volunteers and once you do it, you're pretty hooked.

Dr. Lisa Belisle:

This is Dr. Lisa Belisle and you are listening to Love Maine radio show number 289, Maine adaptive and special Surfers. Airing for the first time on Sunday, April 2, 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

Dr. Lisa Belisle:

Mark Stevens is a board member at

Dr. Lisa Belisle:

Maine Adaptive Sports and Recreation. Nancy Boutet is the Executive director of Special Surfers and Kennebunk. Thank you for joining us.

Dr. Lisa Belisle:

It is my great pleasure to have with me Barbara Schneider and Mark Stevens. Barbara Schneider is the executive director of Maine Adaptive Sports and 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 Schneider:

Thanks for having us.

Mark Stevens:

Great to be here.

Dr. 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 Schneider:

Well, as the somewhat new executive director, what I know is the history, not personally, but by being part of the organization. But it was founded in 1982. A Portland orthopedic surgeon by the name of Kip Crothers had a patient who he believed would benefit from being involved in skiing and 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 well being. And 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, so my earliest remembrance of being involved in Maine Adaptive at the time was Maine Handicap 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. I was on the race team 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 this Ski a Thon and that was in 1985 and that was the first Ski a Thon which is coming up here shortly. So the program has just kind of grown from the early beginnings with Chip and Les and there was another Charlie involved, Charlie Roscoe. So really four founders and it's 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. So it's been really, really phenomenal to watch the organization's growth.

Dr. Lisa Belisle:

So you mentioned two benefits, one being the outside nature, the connection to that that you're able to foster, and people who take part in this. And then the other is really getting to know oneself physically in a way that can sometimes be limited for people who have different abilities. So how much science is there behind this?

Barbara Schneider:

Well, 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. And so there is some science that we all have to learn to provide the product that we do. But the idea 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. And 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. So, you know, 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.

Dr. Lisa Belisle:

And 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 Schneider:

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. So there'll be a lot of preschoolers and 4, 5, 6 year olds, and 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. So 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.

Dr. Lisa Belisle:

That's interesting. I had been aware that you dealt that you had people participating with different levels of ability, but I didn't realize you had older adults who might have at one point had, quote, unquote, normal abilities, but then have succumbed to whatever illness or infirmity that they've had. So 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. And we have a large group of what we call mono skiers or bucket skiers today, and they're very accomplished. And to watch these athletes move around on the mountain so freely when in their daily lives, you know, it's a struggle to get around. And then when they arrive with us, you know, they're out on the mountain just like any able bodied skier. And actually some of them move probably better than, you know, 80% of the ski population that's out there today. It's phenomenal to watch.

Dr. Lisa Belisle:

So it must have been interesting for you, Mark, as someone who has raced. So you were in a different, you were in skiing in a very different environment, you were in a competitive environment. Everything was kind of keyed towards going fast. How did your mindset shift when you started working with Maine Adaptive?

Mark Stevens:

Well, it's interesting because I still view all of our participants as athletes and 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. So that's the part that I just, I really get a kick out of, is watching, you know, those athletes move up through our program. Some of them come to us, had never skied before, and then they progress through our volunteer core and then move on to our race team and do very well, even at the national level. I mean, we've had an athlete, we've actually had two athletes go on to compete in the Paralympic Games. So it's pretty exciting for me as an ex racer and I still race a little bit, try to 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 and get these same, excuse me, opportunities that regular Aylewad athletes get every day.

Barbara Schneider:

And I was gonna say one of the, 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, runabout buckets, five to $6,000. So it's not the kind of ski gear that someone can easily purchase. So by having it and providing that free of charge and providing the instruction free of charge, we eliminate a barrier to access. So 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. And that's a phenomenal thing. And for families who have additional costs because they have children with disabilities, for folks on fixed income, that's made a big difference.

Dr. Lisa Belisle:

How many people does your program help every year?

Barbara Schneider:

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. And other people will come three or four times a season. We have a bus that comes from Portland, generously donate to us by Northeast Ambulance Services. And that bus will pick people up at the Iris Network's housing center in Portland, and others will come there. And all these folks will come on Thursday to Sunday River. And they'll ski. Not necessarily every week, but we'll alternate who gets to come with the bus, and. And folks will have the opportunity to ski a couple times a year.

Dr. Lisa Belisle:

How many people have you served over the entirety of the 35 years?

Mark Stevens:

Wow, that's a great question. You know, it's got to be in the thousands.

Barbara Schneider:

It has. I mean, if we. If we're at about 4 to 500 a year, I'd say it's probably a good. I think it's probably up to. It could be up to 15, 12, 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. We are also, every once in a while, we'll do a little bit of programming at Camden Snowball, 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 And 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.

Dr. 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:

Well, that's a great question because we're all over the state. We have a van and we also have a trailer. And we can take equipment pretty much to a bunch of different venues. But we program. Our bicycling happens here at Back Cove. We do take day trips, not day trips, but weekend trips up to Acadia. So there's some pretty exciting venues that we go to. We also do kayaking up on Rang Pond as well as trying to think of the other venues where we.

Barbara Schneider:

Well, 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. There is the Androscoggin Council. The Androscoggin Watershed Council does a source to sea paddle every summer from the beginnings of the Androscoggin at Lake Umbag all the way down to Merrymeeting Bay. And so we'll take our adaptive paddlers on one of those river sections to paddle along with the folks that are paddling for the day. So that's a. A way to integrate adaptive programming with regular recreators. That's always a fun event, too.

Dr. Lisa Belisle:

This must cost quite a lot of money. How much does it cost per year to operate main adaptive and how much does it usually break down to per participant?

Barbara Schneider:

Well, our operating budget varies between about 600 and 750,000, give or take. Give or take. We. 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, this Ski A Thon raises about half of our operating budget between 350 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, and 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. And every once in a while, a foundation may get federal funds that they'll pass through and grant to us. But so 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. But we're fortunate. We have long time committed individuals, longtime committed corporate sponsors that really have helped us over the years.

Mark Stevens:

And I don't think we could not emphasize enough Sunday River's cooperation without their in kind support of lift tickets. And I mean, just everything that they do for us up there. They've been a phenomenal partner from the beginning and you know, just really fortunate to have that relationship and, and to be where we are. We're located right slope side. Our building is located slopeside on the Sundance Learning center, which has what they call a magic carpet, which is a surface lift. And you know, we just literally, our athletes just walk out of the building and they're on the hill and off they go. And you couldn't ask for a better setup or a better partner than Sunday river has been. And the last about 10, 12 years, 15 years, we've developed the same real relationship with Sugarloaf. And 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. And so 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 with exactly the just like you and I. And so that's really a phenomenal thing to see.

Barbara Schneider:

And it's in so many ways. The mountains are great. I'll give a couple of examples. We had a February 18, 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. And we had the shuttle buses to take the family members from our building at the Southridge Lodge. The resort's shuttles took the spectators to Barker. That was great. At the end of the season up at Sheriloaf, they're going to to be US Nationals and 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. And so these opportunities are great. They help us build exposure. We are 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. And we helped bring that organization there. And we're going to be the nonprofit featured partner for that event. So it's really fun to be connected to these resorts and help them by bringing families to the mountain. And they certainly help us by providing us with hill space and, 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.

Dr. 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:

Well, the volunteer population, we couldn't do what we do today for the price of what we do without the volunteer staff that we have. I mean, 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, and work with these athletes. I mean, it's pretty awe inspiring to watch how that all works. And we've had volunteers that have been with us 25 years. 20, 25 years coming back year after year, providing the instruction and the athletic help to get our skiers out there on the hill. And we have a lot of volunteers that actually volunteer in the summertime as well. And so we've got a lot of crossover. There's, you know, skiing and biking and that sort of thing. It's kind of those two sports that kind of dovetail each other from season to season. And so we see the volunteer pool shifting from winter to summer. And I have north of 400 volunteers today that come in and help us do what it is we do. And in addition to that, we've been fortunate to have some interns come in who from UNE down there in some of the programs that University of New England offers. And so we're always open to finding people that, you know 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 come volunteer, you know, mainadaptive.org put a plug in for it right now, Come to the website, give us a Call. Love to have you come help us out. And I think once you're involved in the volunteer community, just the buzz from it, you know, just the whole. You just feel better about yourself as a person. Once you come through the main adaptive doors.

Barbara Schneider:

It is a. It's a tremendously. I mean, we talk about the benefit, the socialization benefit for our participants, the exposure to the outdoors. Our volunteers span the spectrum in age, too. I mean, 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. But 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 from. 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 Sugarloaf. And this is a home for them. So it's really a nice community of participants, of volunteers, and 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. And I have always been a child's coach. And I've started to do more training for our volunteers. And I have to say, there's some amazing skiers who. 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. And 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. 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. So that's very important and it shows because the quality is pretty good. Very good in our instruction.

Dr. Lisa Belisle:

Well, it's been a pleasure to spend time speaking with each of you today. I've been talking with Barbara Schneider, who is the executive director of Maine Adaptive Sports and 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. So thank you Barbara and Mark for coming in today.

Mark Stevens:

Thanks for having us.

Dr. Lisa Belisle:

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 Kenny Buck'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.

Nanci Boutet:

My pleasure.

Dr. Lisa Belisle:

So 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?

Nanci 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 bodyboarding for a while and it just seemed like a natural progression.

Dr. Lisa Belisle:

And are you originally from Maine?

Nanci Boutet:

I'm from New Hampshire and then when I was in high school I moved to California and I stayed in California for a while and then I came home to New Hampshire and visited Maine and met my husband when I was 17 and the rest is history.

Dr. 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?

Nanci Boutet:

I have an affiliation with my husband from meeting him in Maine.

Dr. Lisa Belisle:

Oh, from meeting him in Maine.

Nanci Boutet:

Yes, in Old Orchard beach at the pier actually.

Dr. Lisa Belisle:

Excellent. So was he the one that was actually out in California?

Nanci 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 and it was nothing short of very interesting.

Dr. Lisa Belisle:

So did this influence in any way your interest in the ocean or your interest eventually in learning how to surf?

Nanci Boutet:

Not really. Actually I've played a lot of beach volleyball and learned to surf both in Maine and 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.

Dr. Lisa Belisle:

So you spend part of the year here in Maine and part of the year elsewhere?

Nanci Boutet:

Yes. I'm a little late for this interview because I was out surfing. I am living in Costa Rica in the winter, lucky enough to be in an oceanfront home with some good surf breaks very close by. So I had my husband run me up to the break with my surfboard on his motorcycle and then I just walked back. It's about a mile from our house to the where the waves are good.

Dr. Lisa Belisle:

So you have found something in surfing that you, that so appealed to you that you decided that you were going to do this program for special surfers?

Nanci Boutet:

Yeah, I think I can relate to these kids. I'm pretty hyperactive and I have a short attention span and 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 and they kind of get into the zone and they feel successful and it demands all of your attention.

Dr. Lisa Belisle:

You started Aquaholic 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.

Nanci Boutet:

Right. It's the surfing for special needs kids was kind of a new concept at the time. And a good friend of mine was working with a lot of kids on the spectrum, Autism, Asperger Spectrum and she asked me if I would take a few kids out surfing and I said yes. And I enlisted my husband and our son and we took three kids out the first year. And then the next year we started expanding the program right away and we went from three to 23 to gosh, we've had up to 95 kids and about 230 volunteers. And once you do it, you're pretty Hooked. If you're a kid or a volunteer and the parents have as much fun as the kids and we have as much fun as the kids, and everybody has a blast.

Dr. Lisa Belisle:

And this is something that you do once a month.

Nanci Boutet:

It is on the third Tuesday of June, July and August. It's always the third Tuesday. That's how I remember it. And 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 a wetsuit. So it works out great. But we're a little bit short on equipment.

Dr. 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.

Nanci 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 stand up paddle boards and, oh boy, about 120 wetsuits. And we used to bring everything down to the beach. But now I can't exactly expect people to forego that rental income. So they allocate some surfboards and we have to go according to what we think we can get for borrowed equipment. And 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 a, of about 35 kids for each night of the year this year. And that's 35 kids on the spectrum or with, you know, they're ambulatory, they can control their body muscles and things like that. And then we have six kids that we strap into beach chairs on stand up paddle boards and take them out and rock their world. So the kids usually in wheelchairs or with mobility issues, people who walk with crutches and things like that. So we are kind of stressed for equipment. So hopefully we'll be able to borrow or buy what we're going to need.

Dr. Lisa Belisle:

You have a fundraiser that's going to be coming up in March with Bayside Bowl.

Nanci Boutet:

Right. And 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. And we have a bunch of people running a bunch of fundraising programs. And that one's being run by Tom Reynolds and Holly Stonge from Portland. And 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.

Dr. Lisa Belisle:

So 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?

Nanci 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 you have. You need one experienced surfer and then one person to kind of direct traffic per kid. So 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 the kid when they get to shore and bring them back out to the surfer. Because with a hundred 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 get them as many rides as you can. So that's a lot of volunteers and it's a little bit of a zoo when it comes right down to it.

Dr. Lisa Belisle:

Where do your volunteers come from?

Nanci Boutet:

Oh, boy. We get. People come. 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 from. 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.

Dr. Lisa Belisle:

When I was there last August, I met a volunteer who I believe was

Nanci Boutet:

from Australia or New Zealand, 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, and she's in public service in Australia and this was just right up her alley and she loved it.

Dr. Lisa Belisle:

Yeah, I believe she told me she is a police officer.

Nanci Boutet:

Yes, she is an anti terrorism agent in Sydney.

[Unidentified voice]:

So.

Dr. Lisa Belisle:

So for people who are interested in volunteering, you don't necessarily need to be a surfer per se.

Nanci 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. So really surfing is. It's a big part of it in the logistics of it all, but it's a small part of it in the volunteerism.

Dr. 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, and he has been doing this for a while. He's on a. He was on a. In a wheelchair on a special surfboard. And I think there were six to eight people who are helping bring the surfboard into shore.

Nanci Boutet:

We call that the gauntlet. We want to keep those kids upright, people and kids. You're probably talking about Brian Binette. He's 40. Well, he's probably 42 now. He has been in a wheelchair all his life. He's non verbal 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 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. But we have a training program going into place and we have a of lot, lot of volunteers for the kids on the wheelchairs, trying to keep them going in a straight line and 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 and 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 dunked a bunch of times and 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.

Dr. Lisa Belisle:

So there doesn't seem to be any fear?

Nanci 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.

Dr. Lisa Belisle:

This is held at Gooch's beach in Kennebunk. And 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.

Nanci Boutet:

The people in Kennebunk have been great. The government has been great. The community's great. I mean, when we have that many people at the beach, you got to think about how many cars are down there, parking. And for years, I used to go put little notes on people's doors and mailboxes in their yards and stuff saying, sorry, you know, we're gonna. We're definitely gonna inundate you. But I've never had any complaints from anybody, and 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.

Dr. Lisa Belisle:

You've been doing this for more than 10 years now. So what lessons have you learned?

Nanci Boutet:

Never assume anything. Some of the kids 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. And 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, and I've learned not to assume anything. Like Brian Bennett, 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 and they find a way.

Dr. 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?

Nanci 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. And 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 know, 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.

Dr. 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 slots and then you have 35 more out there who are waiting to join the program.

Nanci Boutet:

Right. And that 35 is just as of yesterday when I checked the list. We leave that open and 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. But now we have an official board with official rules and official insurance and all kinds of regulations and all that kind of stuff. So 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 and 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.

Dr. Lisa Belisle:

So 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.

Nanci 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 and 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. And some of those are just wetsuits that were donated. And the sizes are not exactly something that's very popular. But 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 need, 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 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 board sewn straight. So it's a lot of people. We pretty much fill that bay at Goches Beach.

Dr. 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, right?

Nanci Boutet:

And to. For everybody to rearrange their schedule. That's about 300 people, not including the parents of the kids that you want to try to re schedule and rearrange and everything. It just. We. I don't think we could make it work. And we just go and plan on it. And 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. And I can tell you, nobody even notices you're already getting wet. You know, 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 gotta leave, we gotta leave.

Dr. 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.

Nanci 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. And they are all concerned about our safety. So I have a program that I've used for surf lessons through the years through Alcoholics Surf Lessons. We've done tons of lessons through that. So we're going to integrate some safety procedures from that and from Terry Farrell, our medical director, Tom Reynolds, our neurologist, and Holly St. Ange, our occupational therapist. And we will probably get some video made up and, you know, some literature, and we'll try to get that out to all the volunteers so we can try to make it. We can keep our record of safety because we had an amazing run and we've been very fortunate.

Dr. Lisa Belisle:

How much do your volunteers understand about kids who are on the spectrum?

Nanci 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. And 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. And a lot of it is just has to do with communication and how to communicate with them. They're very literal. So you gotta be very clear in your direction with them. And some of it is you just gotta 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.

Dr. Lisa Belisle:

And what percentage would you estimate do you have of kids who are on the spectrum versus or who have Asperger's versus other types of special needs?

Nanci 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 has 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 they have. A lot of the kids have multiple, multiple diagnoses. And 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 rock in the world.

Dr. 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?

Nanci 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 kind of 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.

Dr. Lisa Belisle:

Well, 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. And also we'll put a link on our Show Notes page. For the radio show, I've been speaking with Nancy Boutet, who is the Executive Director of 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 Scooches 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 with all this putting all this positivity out into the world.

Nanci Boutet:

Well, thank you for calling and thanks for having us and thanks for spreading the good word.

Dr. Lisa Belisle:

You have been listening to Love Maine radio show number 289 being adapted and Special Surfer. Our guests have included Barbara Schneider, Mark Stevens and Nancy Boutet. For a preview of each week's show, sign up for our E. Newsletter and like our LoveMain Radio Facebook page, follow me on Twitter as DRLISA and see our LoveMain Radio photos on Instagram. We love to hear from you, so please let us know what you think of Love Maine Radio. We welcome your suggestions for future shows. Also let our sponsors know that you

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Dr. Lisa Belisle:

This is Dr. Lisa Belisle. I hope that you have enjoyed our main adaptive and special Surfers show. Thank you for allowing me to be a part of your day. May you have a bountiful life.

[Unidentified voice]:

I've taken down your pictures you gave me back my key I threw away the gifts that you had bought for me but what's the use I still can't sleep Cause I'm drowning in the thought of you I can't keep my head up above the sea I used to think you'd come about but now I got it figured out I am giving up the life the memories of you and I Too much crying on my pillow Too much staring out the window I'll be moving on cause you're already gone but tries to make it up to you there's nothing I can say or do it Too much thinking about my problems too much wishing I could solve them it's just too much for me to bear it's just too much for me to bear.

Nanci Boutet:

O

[Unidentified voice]:

keeping myself busy to take you off my mind but late at night when I lay down the pillow still remind me of the truth the awful truth I can think of anything and find a way to bring it back to you you I wonder if you think of me but I presume you're angry if you do. Too much crying on my pillow Too much staring out the window I'll be moving on cuz you're already going I tried to make it up to you there's nothing I can say or do too much thinking about my problems too much wishing I could solve them it's just too much for me to bear it's just too much for me to.