Voices for Voices®

My Story - Overcoming Challenges Through Artistic Expression with Jen and Mark | Episode 142

• Founder of Voices for Voices®, Justin Alan Hayes • Season 3 • Episode 142

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My Story - Overcoming Challenges Through Artistic Expression with Jen and Mark | Episode 142

Chapter Markers
0:05 Hearts for Music
16:12 Musical Opportunities and Inspiring Moments

Can you imagine a world where nonverbal communication transcends barriers and opens new opportunities for those with special needs? In this heartwarming episode of Voices for Voices, we welcome Mark and Jen to share their extraordinary experiences. Mark's journey with the Hearts for Music Special Needs Orchestra is nothing short of inspiring. Despite being nonverbal, Mark excels in playing music, skiing, cycling, and even learning new languages like Danish and Italian. Together with Jen, they shed light on the importance of recognizing the full potential of individuals with special needs, challenging stereotypes, and breaking down stigmas that society often holds.

We also spotlight the incredible work of Kitrael Chin, founder of Hearts for Music. Through various impactful events, including performances at the Peyton Manning event and the Miss Wheelchair USA event, Kitrael has created a platform for inclusivity and opportunity. We're thrilled to share what's next on the horizon, from an exciting upcoming gala to an awe-inspiring performance at the Vatican. Personal stories about overcoming nervousness and embracing authenticity enrich this episode, emphasizing the power of seizing every opportunity. Tune in for an uplifting and motivational conversation that champions the capabilities and potential within every individual.

Our Voices for Voices® TV show and podcast is all about teaching you insanely actionable techniques to help you prosper, grow your self worth and personal brand.

So, if you are a high achiever or someone who wants more out of life, whether mentally, physically or spiritually, make sure you subscribe to our podcast right now!

As you can see, the Voices for Voices® show publishes episodes that focus on case studies, real life examples, actionable tips and "in the trenches" reports and interviews from subscribers like you.

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Speaker 1:

Welcome to the Voices for Voices TV show and podcast. I am your host, founder and executive director of Voices for Voices, Justin Allen Hayes. Thank you for joining us today. Please like, share, comment. Helps us reach many people and we have that goal still as we're working towards it to help 3 billion people over the course of my lifetime and beyond. It's a pretty big goal. If you can help us out, it doesn't cost you anything. We'd really appreciate it. So in studio today, just an awesome guest that we have with us today. So first I'll introduce we have Mark and Jen, so thank you for joining us today.

Speaker 2:

You're welcome. Thank you for having us.

Speaker 1:

You bet how I had. The organization I got to learn about Mark and Jen was at a Hearts for Music event a couple months ago for the Peyton Manning Foundation that was held in Akron, where he was able to play the other musicians with Hearts for Music for the packed house, several hundred individuals. So it's pretty brave to be able to do that. And through the conversation with Jen talked about, hey, we'd like to have Mark and her on to talk about him, talk about Hearts for Music, which is you've heard us talk and seen us talk about Hearts for Music. You know Special Needs Orchestra just amazing work that they do, and I've been lucky to be able to have a friendship grow with the director, katrell Chin, and so that's how I got introduced to Hearts for Music.

Speaker 1:

And so, with that performance at the I think it was called House 330, where the old Tangiers is at, where the performance happened, and there's tons of exciting things that we're going to be talking about today. There's tons of exciting things that we're going to be talking about today. I just wanted to let you, our audience, our viewers, our listeners, know that we're grateful to have them in studio to chat, to talk, and we'll be having them on future episodes next year. So you can look out for that, probably in the May-June time frame. So after that long, long intro. Hearts for Music. How did Mark learn about that and have an interest in that?

Speaker 2:

We had an advocate call us and say that and tell us that Kachal Chen has started a special needs orchestra and he's looking for participants, and she thought Mark would be a great candidate for it, and so it was. It was pretty much right after he started that we joined. So I don't know how many years it it's like eight years maybe, I don't remember it's been so long but we've been with Hachal for the whole time.

Speaker 1:

So can you give a little background on Mark and I think I overheard you say he's the most verbal nonverbal person you'll ever meet and can you just talk a little bit about that?

Speaker 2:

Mark is like you said, he's nonverbal but he is. People have said he's the most verbal nonverbal person and he speaks like right now he's agreeing by nodding his head. He will also move his knees together if he concurs, if he agrees. And just he's 30, going on, 31 years old. I'm his mom, his main care provider is independent provider and I just know him Like. I can read his eyes, read his hands. He does not do sign language, as we all know, but he has his own signs of just reaching out and his needs get met and he has full range of emotions. So if we have made agreements and have not held up to those, we're told right away and it keeps us all in line and it helps him to get his needs met. And he is a full athlete downhill skier, water skier. He just finished water skiing a couple weeks ago. Yesterday he was cycling with 3trackersorg and he'll do kayaking and all different sports. He's an athlete.

Speaker 1:

And he also not only knows English, but there are other languages that he understands as well, to add to his repertoire.

Speaker 2:

Yes, he was born in Denmark, his dad's Danish and lives in Philadelphia and comes to visit regularly, and so his first six years was in Denmark. I was there for seven years. I'm from Wisconsin, and so he understands Danish. Yeah, you do, I know, and you're very good at it. And now what are we learning italiana? Right, because we're going to roma, yep, so we're practicing our italian and we practice phrases. So we'll say the italian phrase and then the english phrase, and that's how we learned the danish was phrase by phrase.

Speaker 1:

Wow, yeah, that's, that's incredible and I and I think it's it's eye-opening to a lot of people when they meet Mark, other individuals taking assumptions of whatever those stigmas are. I mean we talk about on the show a ton about the mental health side of things and how the stigma is around mental health still and recovery, and that I think that there's a lot of stigma around just people in general. And to learn that much about Mark, I think this speaks volumes and I know this is going to help a lot of people understand that they may know somebody like Mark, whether it's at their church, whether it's in a community gathering environment. And I say not underestimate the individual.

Speaker 2:

Exactly. I say that we're all special needs and some of my special needs situations are not very visible. I'm able to mask them where other people are not able to mask them. They're just more apparent. But they are also very clever and can do so many things if they're given the opportunity. So when we moved Mark was born in 93. In 1999, we moved back from Denmark and I became a single parent and his dad wanted to pick him up for the summer holiday and take him back to denmark for three weeks to stay with his, his grandparents and cousins and whatever, and they're a farming community. And I said you, we don't know danish, like we were there for seven years, but we were all doing the special needs, epilepsy. I didn't get a chance to really learn the language. I had heard it, I had seen it, subtitles, I was meshing it, but I couldn't speak it. And so I said to Mark you're leaving in two months to go without me over to Denmark.

Speaker 2:

You need to know Danish, because grandma and grandpa do not speak English, I know. So what did I do? I pulled out the language books and I just started speaking phrases, and within those two months we actually learned Danish. So the joke is we had to move back to the United States to learn Danish. Oh my gosh, yeah. And then he, he could understand. No, it's not a dance to him. I can understand it, but I see it to him. Yeah, that's right, I know you can. So we're working on our Spanish and we've now switched to Italian.

Speaker 1:

Yeah, so maybe you can talk a little bit about why. What's prompting the learning of Italian?

Speaker 2:

Yes, so Hearts for Music April 29th 2025, they will be in Rome playing for the Pope. So it's very exciting. Mark is one of the team that's going and I have to go because I'm his one-on-one, so that's kind of our joke too. And so, yeah, we're going to go to Rome and be there for nine days. We'll be playing one of the days, but they figure we might as well stay and hang out and do Rome, and so it's very exciting. So we're doing fundraisers now for that and have lots of performances coming up. We have a fundraiser, a gala, in December. It's heartsformusicorg. If anyone wants to go there and check us out and see how they play, and they have equipment that's there already. Cottrell just came back from Rome setting it up where we'll stay Security, hospitals, support teams, special needs, ground crew from Rome.

Speaker 1:

It's so exciting to have that opportunity to travel and to play for the Pope. I mean, it's very few people, individuals, have that opportunity. So you're you're gonna be on a short list of people who have played uh for for the pope and I I think it's. It's awesome and gives me like chills just to just to think about uh, think about having that opportunity and because what that experience is going to be like, and then to be able to, once that concludes, to come back and share and talk and inspire others Because I know that Mark's inspiring others right now, but he's going to continue to inspire others because we're going to have you back on and you're going to talk about the experience. We're going to have you back on and going to talk about the experience and that individual.

Speaker 1:

That person might be down and uh, or maybe you need a little support and uh, I myself, you know, I have uh, depression, anxiety, low spectrum autism and and so, yeah, there's, there's so many things that we can't see that people are battling with, and to just to share and to help one person. That that was kind of the goal at the beginning for for Voices, for Voices, and we're well on our way to towards march and towards 200 episodes and I, looking back, it's like, uh, how, how did we do it? Because at the beginning it's like, okay, we're episode one and two. And then look back and go, oh my gosh, like, as they're, they're, they're coming out and I think that's a lot.

Speaker 2:

I know that's a lot. It's mind-boggling.

Speaker 1:

And the fact that, yeah, you're going to be I believe it's going to be episode 142 or 143. And that's exciting, and then next year will probably be in the 200s when you come back and a little, yeah, go ahead.

Speaker 2:

Well, what I was going to say is Mark was diagnosed at three months old. He was probably born seizing with epilepsy and by the third month, yeah, he went into a full tonic-clonic. And I remember we were at home and I had him in my arms and I said you have come to the right person. Yeah, because I will take care of you for the rest of your life. Right, and I said this is not going to stop us. I said he can seize at home or he can seize in a stroller, he can seize in a car, he can seize anywhere. It's not contagious.

Speaker 2:

We can go and just get adaptive equipment and just go and see. So what I say to him when it's something new, I'll whisper in his ear. What do I whisper? Just go with it. This is something new. You don't know it, you haven't done it before. Just go with it. I'm right with you. Yeah, yeah, just experience it. So three trackers have a joke and they said that um, mrs christensen, uh, we're going to go to mount everest. Do you want mark on the list? And mrs christensen says, of course, of course. Well, how are you going to do that? I don't know, we haven't figured it out yet. Yeah, just experience, just like anyone. Just try it, just experience it, just experience it. We had a walker and cross-country skis for him. We've got all this adaptive equipment that we use for just plain fun To get out and be with everyone else. He's been on the rock wall, he's a rock climber.

Speaker 1:

It's incredible. Yep, he's a, it's. It's incredible. And I guess to say rewind.

Speaker 1:

A few years during during the pandemic, I was at church, saw this gentleman had the very shirt that Mark has on. Uh, so, hearts for music and before voices for voices was an organization, we were, let's say, a once-a-year event trying to bring all different voices, all shapes and sizes and ways and manners, and I was looking to have entertainment and music and we were on the physical distancing and social distancing, but I saw Hearts for Music getting that. Or on the physical distancing and social distancing, but I saw hearts for music gettingorg on the back of the shirt. So when I got home after church, I Googled, went to the site, saw and I reached out to Mr Chen and I said, hey, we have this event. I don't know if you can do it, traveling, I don't know if it can happen, but we would love to have you come and bring your orchestra. And things come full circle as we're sitting here today, that Mark was at the very first Voices for Voices event. Yes, and that event not only helped our organization kind of get footing to say we want to do more and, to your point, we don't know how we're going to do all these things, right, but we're going to take steps. Obviously, if something's dangerous, we're not going to probably do that, but other than that, give it a try.

Speaker 1:

And as we are full circle, since then, there was a Channel 3 news special that was on that highlighted Hearts for Music among many other media opportunities, and I think that that is amazing, that you're the role model that you are like. This is something new. Just go with it. That, whether somebody is like Mark or not, needs to hear, because I think some people, or maybe a lot of people, they, they don't do something because, like, we're all afraid, we're all nervous. I mean, even doing this, having 100, some episodes, I, I'm nervous. Donna, you're probably nervous, he might be Mark a little nervous, but we just go with it and see what happens. And those are, I think, some of the most beautiful things that happen when you're just being yourself yeah, that's right, not trying to be somebody else. And it's just incredible how different opportunities come about and we go from, let's say, the first Voices for Voices event to the Peyton Manning event, to the what was the most recent event.

Speaker 2:

Well, the Wheelchair USA, that was phenomenal. That was phenomenal. It was wonderful. We were three times. We were there to play through the event and we were up on stage and Mark was with the ladies. He really enjoyed that, all dressed up sparkly and, yeah, he really liked that. He was in his suit coat.

Speaker 1:

Yeah, he looked sharp.

Speaker 2:

Yeah, you were looking sharp, Mark yeah.

Speaker 1:

And I think that, coming back to when I met Cottrell Chin for the first time and checked out the heartsformusicorg website, was to learn a little bit about the organization, how it got started, uh, where, uh, mr chan was at a performance and, uh, there was a child nearby and was telling you know the parents, you know I, that's going to be me someday up on stage yes and, and mr chan he Chen said I might not have the opportunity, and there's lots of.

Speaker 1:

They hold people back for whatever reason and they don't want to include because they're afraid or they just don't know. So we go from Mr Chen's starting hearts for Music and then not only at our event did Mark and the orchestra play, but also were able to integrate four-string quartet from the Akron Symphony, and so it went from an idea in K Cottrell's mind of an experience that he had to yep, we're gonna play this event to the Miss Wheelchair, usa event of being on stage the very place that that little girl so many years ago, and parents didn't think that would be possible. So this is just, it's incredible 360 to come from. You know the idea, the inception, and this is happening. This isn't still in like mind, this is actually occurring, yes, like mine, this is actually occurring, yes, and you, just you mentioned going forward. Uh, have the gala coming up? Uh and uh. I don't know what the date's been said, but it's coming at the latter part of 2024.

Speaker 1:

And then the trip to rome, and I remember sitting down for, uh, mr Chin for breakfast one time, and this was, I think it was the end of last year or first part of this year, and he said and we were just throwing ideas around, kind of like dreaming like we'd like to do this and he said, yeah, I reached out to the Vatican and found out there's this set of holy days and he's explaining and he's like, yeah, I just sent an email and said, yeah, if there's any way that we could be a part of it and play.

Speaker 1:

And I started thinking that's why I love surrounding myself as much as I can with people like Mr Chin, because he's gone that extra mile. He's not saying, okay, well, we're just going to be in this particular area, we're going to at least give it a shot. We might not get a response. The response might not be favorable Reach out to us next year. There could be all these different things, but if we don't try, there could be all these different things, but if we don't try, the answer is going to be no. And so let's try. And to see just that conversation and, uh it, it gives me goosebumps to think that you know that that initial email and submission. And then he reached out and said you'll never believe he's like I got this official invitation from the Vatican.

Speaker 2:

And it's like what Right? I know.

Speaker 1:

And he's like I had to pinch myself, and that stage is going to be even bigger internationally. Obviously, being in Italy, in the Vatican, vatican City, with the Pope and all the people that gather from around the world, I'm just so excited for the orchestra and the music and I'm so excited that I'm going to join.

Speaker 2:

Yes, we're so excited that you're coming along. That's fantastic.

Speaker 1:

Yeah, and we were chatting a little bit off camera about instruments and Cottrell just got back from Italy trying to get all the specifics and everything nailed down, so it's as smooth as can be travel-wise and I asked him, I said, which guitar do you want me to bring? And he's like, oh well, don't worry about it, they'll have it, just bring yourself and some guitar picks, if you want, and a capo. And it was just like oh my gosh, like this is like very, very cool. And I know that there are there's a wide range of people in the orchestra, from what what they're they're working with, from like a personal standpoint and like myself, I, while I'm not, I would say, official Hearts for Music musician, I like to think of myself like, well, I'm dealing with a lot of things internally that individuals might not see. So I was like I think I fit in pretty good.

Speaker 2:

Yes.

Speaker 1:

And that's one of those things. Just give it a shot. There's so many other things you could do, you could try, and you look at those once-in-a-lifetime opportunities when could that happen? We don't know how long we're going to be on Earth. There's all these unknowns that happen and occur that we can't really control. So why not give it a try? So why not give it a try?

Speaker 2:

Why not give it a try? So when Cattell was thrown around the idea and he had gotten the confirmation, since we lived in Denmark and I'm from Wisconsin we would travel once a year, mark was there for six years, and we would travel back to the United States once a year, and I just figured somebody else has done it, we'll figure it out six years and we would travel back to the united states once a year, and I just, you know, figured somebody else has done it, we'll figure it out. And so we had flown and traveled in europe with mark around. And so he said it is it difficult? And I go, it's easy, it's easy.

Speaker 2:

The airports accommodate so well, they'll have carts there, they'll, they'll take all the passports. You go to the front of the line. You know, it's just, they are phenomenal, the airports are phenomenal, and they put the wheelchairs down below and they have special chairs that will go in between the aisles and they'll set it up and there'll be people in there that will lift him up and put him in the seat. Oh great, right, the whole works. Yep, and all the way down to food, everything will be planned out ahead of time. Yeah, so, and it's quite fun. Um. So when cattell heard that he's like, yeah, we'll figure it out, I said yeah, and then other people were concerned too and I, you know, like one, um, young lady has a shunt, and so I just did a gurgle switch Do people with shunts travel on airplanes? Yes, there was like yes, yes, yes, yes, yes. I was like no problem.

Speaker 1:

So so yeah, and.

Speaker 2:

I was going to say that I remember when we first met you at your, at your event and it was COVID, like you were saying, and Mark couldn't wear a mask because he has pica, which means he puts everything in his mouth and swallows it. We say that his middle name is Heimlich, so what I ended up getting was a weather pod. I don't know if you remember that, but it was a blue square pod that had some openings to zipper, but you put it right over the top of them, so he was in like. So if you look through those episodes and you see Hearts for Music playing at your thing, mark is in the weather pod.

Speaker 1:

And I remember that when he said that that jump like from, I was like oh my yeah.

Speaker 2:

Right, and then he can move his arms around and talk and whatever he uses an iPad, he plays strings on iPad and, to start out, his arms are in this position and what I do it's we have, we use GarageBand and there's a series of chords on the device the iPad and so we'll either go up and down or we'll tap on the variety chords and then Cottrell. He's playing the keyboard in front of us and he'll say C or he'll say cat for C, and then I will take my hand to go up and down if we're doing this or if we're doing this, and Mark feels it and he sees it and he hears it, and then midway he starts to put his hand on top of mine. So now we're doing it together and by the end of most performances or practices his hand is underneath and I'm just guiding it along and he's playing on that and that's pretty much. I mean, you're really good at it yes yes, you're really good at it now.

Speaker 2:

Now he does play in drum circles. He has his own drum. His dad got it for him, baba Jabal, who's the renowned drummer in Cleveland. We went to his garage and Baba played a variety of drums and the ones that he reacted to the most of the bass. He made a drum specifically for Mark in that tone. It's so cool. Yeah, it's made out of cherry, it's gorgeous, and so we do drum circles. And then we also have what we call $5 guitars and you buy them at guitar stores and there are just $5. And because Mark likes to, he has the strap on his guitar and he'll do a little of this, but he likes to grab the strings, pull it and then use it as a drumstick. Okay, the $5 guitar, and then he wants to put it back on again, and then he'll do this.

Speaker 1:

Oh my gosh.

Speaker 2:

Why not? Yeah, for $5, smash away. Wow, he loves it. You're really really good at it.

Speaker 1:

And when?

Speaker 2:

that one falls apart, then we go get another five dollar guitar. Yeah, well, we're at our time.

Speaker 1:

Oh, yes, oh my gosh, that is so fast and there's so much more uh to to get into and and to talk about. So we're definitely invite uh, marg and jen back next year after the trip to Rome and talk about the experience and some more topics to keep inspiring people. So thank you for coming in today, jen, and thank you, mark. You're awesome. You're inspiring to me and all our listeners and our viewers.

Speaker 2:

Thank you for having us. This is really fun to be here and, like you said, and to inspire others. That's just just give it a try. Yeah, yeah.

Speaker 1:

And thank you our listeners, our viewers or checking out our transcript Another awesome episode. They keep getting better and better and better, so look next April for Mark and Jen to be in Rome playing for the Pope. So until next time, I am Justin Allen Hayes, founder and executive director of Voices for Voices, and be a voice for you or somebody in need.

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