Other People's Words

Interview with Gina Marie Incandela and her mother, Michelle

Posted in Uncategorized by Tera on July 11, 2010

This is a transcript of the Autism Women’s Network’s interview with Gina Marie Incandela, an eight-year-old singer with autism, and her mother, Michelle.

[Music]

Sharon daVanport: Good day, everyone, and welcome to AWN radio. This is the Autism Women’s Network on Blogtalk Radio. I am your host, Sharon daVanport, broadcasting from the Midwest in the United States. Today is Saturday, July 10, 2010. Joining me now is fellow host, Tricia Kenney. Good morning, Trish.

Tricia Kenney: Good morning, Sharon. How are you?

Sharon daVanport: I’m finally feeling a bit back to normal after a very long week last week. We had The United States of Autism crew out here in Nebraska, and we just had a really great time with them out here and getting footage.

Tricia Kenney: It sounds real exciting. [chuckles]

Sharon daVanport: Yes, it was. It was a good kind of tired; it was very exhausting. But I was just so excited to have…Williamsburg Behavioral Psychology, We have an adults’ group with Asperger’s that meets over there and they were able to participate in some of the filming, so I’m just so proud and I want to just give a shout-out to my fellow Aspies over there at Williamsburg. I just think we did a great job in our group. We stayed on task and stayed on point. I just think it went well, and am just so glad that we were able to be a part of the documentary. I can’t wait to see it when it comes out. They’re just going across the United States like crazy. [chuckles]

Tricia Kenney: Yep. I bet a lot of people are very anxious for that to get finished so we can all see the finished product. Also, [there are] many friends that are going to be in this documentary.

Sharon daVanport: Yes, a very diverse group. That’s what I really appreciate about this film; it’s going to be a film that really centers on the diversity in the autism community, and how we feel.

Tricia Kenney: Yeah. And what’s the [unknown] in that?

Sharon daVanport: I think 16 or 17. I’ll have to look back, but I believe they’re going into the shooting of day 17. I’m pretty sure.

Tricia Kenney: Yeah, so they’re almost halfway done.

Sharon daVanport: [Laughter] Yes, so we were day 11. But anyway, why don’t you tell them about our guest today, Tricia?

Tricia Kenney: Sure. Today we have 8-year-old Gina Marie Incandela and her mother Michelle with us today. They’ll be talking about the remarkable story of how Gina was diagnosed, of course with autism, but how she overcame some pretty incredible odds and how she did that through music. So we’ll be hearing their really, really inspiring story today.

Sharon daVanport: Yes. It is really an inspiring story. “A story of hope” is how I’ve seen it worded on the Internet, and it truly is, especially when you hear this little Gina sing. It’s just amazing.

Tricia Kenney: [unknown]

Sharon daVanport: Oh, yes. I’m sorry about that. I didn’t mean to rush you, Tricia. That’s what we get for hosting a show online and we can’t see one another, right? [Laughter] We interrupt constantly—not that we mean to.

We did have one quick announcement that I wanted to just mention before we bring on Gina in the show. I heard from an online networking friend that they are going to be starting an autism support group in Pasco County, Newport-Ritchie, Florida. This support group will be open to any family members, caregivers and friends—just really anyone who knows someone with autism who wants to participate. After a few weeks of the support group being underway, they are looking forward to begin to include siblings of children with autism.

Their ultimate hope is to build a greater understanding of autism through shared personal experiences with one another, along with acknowledging and validating shared feelings and just hanging out. So we’re still waiting to hear back on the details of the address and exact start date, but we will be sure to announce it when we receive that information.

Tricia Kenney: That sounds really good. Let’s not forget to mention the b-Calm Sound system that we’re giving away this month. If you are in the chat room, your name will be added to the drawing. Also, we are still doing our GPS device through LifePROTEKT, and if you want to be entered into that, we’re going to be doing the July entries already. Get your information into our website at info AT autismwomensnetwork DOT org. Tell us your name and your story and how to get a hold of you, and we’ll put your name in for the drawing for that as well.

Sharon daVanport: Also, too, Tricia, I wanted to mention just real quick that we have a lot of guests who listen in through our switchboard via phone. They call into our switchboard, and I can see that we have several over there this morning. I wanted to mention we will take your phone number down, and if your number gets drawn, we will not announce your phone number online, but what we will do is we will let you know that a phone number was drawn. If you were a listener through the switchboard and you have area code such-and-such, we’ll ask you to contact us. That’s how we’ll let you also be included, because a lot of our listeners don’t have the ability to listen in through their computer, so they listen in through the phone. I think that’s it.

Tricia Kenney: All right. Well, let’s go ahead and bring on Gina. Hi, Gina. Are you there?

[silence]

Sharon daVanport: I think it’s muted.

Tricia Kenney: There we go. Hi, Gina. Are you there? Hi.

Gina Marie Incandela: Hi.

Tricia Kenney: [chuckles

Sharon daVanport: How are you, Gina? This is Sharon.

Gina Marie Incandela: I’m doing good.

Sharon daVanport: Doing good? Well, very nice. Well, Gina, I’d like to start out asking you a couple questions, if that’s okay. You are eight years old, is that correct?

Gina Marie Incandela: Yep.

Sharon daVanport: Yes, eight years old. And what grade are you going to be in when school starts back up, Gina?

Gina Marie Incandela: Third grade.

Tricia Kenney: Wow.

Sharon daVanport: Third grade? Wow! Okay. So have you been enjoying your summer?

Gina Marie Incandela: Yep.

Sharon daVanport: You have. What is the funnest thing you’ve done so far this summer?

Gina Marie Incandela: I actually don’t know; I had so much fun.

Tricia Kenney: [Laughter]

Sharon daVanport: [Laughter] So much fun it’s hard to choose! My goodness!

Tricia Kenney: Well, what kinds of things have you been doing so far?

Gina Marie Incandela: Huh?

Tricia Kenney: What have you been doing this summer?

Gina Marie Incandela: I sang at Salvation at Fourth of July.

Sharon daVanport: Oh, you sing.

Gina Marie Incandela: And swimming. It was lots of fun.

Tricia Kenney: Wow.

Sharon daVanport: Did you get to sing the national anthem at the Fourth of July?

Gina Marie Incandela: Actually, yeah.

Sharon daVanport: You did.

Tricia Kenney: Yay.

Sharon daVanport: But you know what I would like for you to tell everyone? I’ve heard you sing the national anthem at so many different places on YouTube that’s recorded, and it’s so beautiful. But I would like for you, Gina, if you would, [to] tell everyone about the name of the first single you just recorded.

Gina Marie Incandela: I recorded “I Sing” and you can buy it on iTunes.

Sharon daVanport: “I Sing.” Very nice, and on iTunes, that’s right. So if anyone has not heard it, I just recommend you get over to their website. I know that when Michelle comes on, we’ll get all that information from her. But, yes, Gina, it is a beautiful song. “I Sing”—was that a song that was written for you to sing?

Gina Marie Incandela: Yep.

Sharon daVanport: It was. Because the words are so beautiful. It talks about how your mom had faith and belief in you.

Gina Marie Incandela: Um-hm.

Sharon daVanport: Very nice.

Gina Marie Incandela: [She] had belief in me, no matter what.

Sharon daVanport: No matter what. That is what it says in the song. That is so true.

Gina Marie Incandela: Oh, and Johnny Bulford wrote it.

Sharon daVanport: Okay. Well thank you for adding that and telling us that. Do you have another special event coming up soon that you would like to tell us about?

Gina Marie Incandela: I’m going to sing for the Mascot Games.

Sharon daVanport: Really? For the Mascot Games? Very nice. Well, we’ll make sure we get those dates from your mother.

Tricia Kenney: So how do you like being a star now, Gina?

Gina Marie Incandela: The day’s actually July 16, 2010.

Sharon daVanport: All right. So you’re going to be singing next time on July 16. That’s my cousin’s birthday, so that’s nice to know. I’ll remember that. Okay. I’m going to mark that down, Gina—July 16. Excellent. Is that going to be there in Florida?

Gina Marie Incandela: Yep.

Sharon daVanport: All right. Well, we’ll try to get those details from your mother. Is there anything else you’d like to tell us? I think Tricia asked you a question. What did you ask her, Trish? About being a star?

Tricia Kenney: Yeah, I asked her how she liked being a star now—being famous.

Gina Marie Incandela: Well, I’m very, very good with it, and I’m having so much fun.

Tricia Kenney: Good.

Sharon daVanport: You are very good with it, Gina. This is Sharon again. You are very good with it, and you handle it so nicely. I can see that your parents must be very proud of you. Is there anything you would like to tell our listeners before we welcome your mother on to the show? Is there anything you would like to say? Just anything you want.

Gina Marie Incandela: I would like to tell to the kids and all the people [to] follow their dreams, and you should never give up. So never give up on your dreams.

Sharon daVanport: Oh, Gina, that’s beautiful.

Tricia Kenney: Very, very good advice.

Sharon daVanport: Very good advice. Well, thank you, Gina, for sharing that with us. We know that you’ve got to get on with your day, so we’re just going to visit with your mom for a little bit, if that’s okay.

Gina Marie Incandela: Okay.

Tricia Kenney: Thank you, Gina.

Sharon daVanport: All right. You have a very good day today, Gina. Bye-bye.

Gina Marie Incandela: Bye.

Tricia Kenney: Bye, honey.

Sharon daVanport: Bye.

[Gina hangs up]

Sharon daVanport: Hello, Michelle.

Michelle: Hi. How are you?

Sharon daVanport: Hi, I’m well. This is Sharon. Oh, my goodness. My heart just melted.

[Laughter]

You must be so proud. Oh, I don’t even know where to begin. Where do we begin, Tricia? [Laughter]

Tricia Kenney: Right at the beginning. So, you went in. What prompted you to get her tested?

Michelle: Well, actually, Gina wasn’t speaking when she was two. That’s what started us on the road of the evaluations. There were a number of other signs, but at the time, being first-time parents and it was our first baby and newborn, we just didn’t pick up on any of those signals. So what really started the ball rolling was the fact that Gina wasn’t talking by age two.

Tricia Kenney: Mmm.

Sharon daVanport: Okay. Do you remember what some of those other, subtle signs were, so that you could share those with other parents who might be listening.

Michelle: Sure. Her socialization skills with other kids were not what they should’ve been. She really didn’t take any notice of other children. Little kids are generally drawn to other kids, and so when you have a couple of youngsters playing in the room and a little person walks in, they usually tend to go over and be drawn to them. Gina made no distinction; it didn’t matter to her.

She would basically not even notice other children in the room, and if she was in a group with kids, she was pretty much always on the outside of the circle. She was never involved in the activities; she wasn’t following along with what they other kids were doing. If we took her to a playground setting, the kids would be running around playing and congregating together, and Gina would be off fixated on picking up sticks and rocks and picking at the ground.

Tricia Kenney: [chuckles]

Sharon daVanport: Okay.

Michelle: Yeah, just hoarding items from wherever she could find them. [Laughter]

Sharon daVanport: A little scientist she was going to be, huh? [Laughter]

Michelle: Yeah, and that’s a lot of what we figured when we would see something. Gina loved puzzles; she loved things that she could put together and take apart, and stack and line things. So whatever we gave her to play with…she wouldn’t take two toy cars and do “zoom zoom” on the table with the cars. She would stack them and line them and put them into patterns. We just didn’t realize that that was of course a sign of autism. We just thought: “Well, she’s going to be an engineer. She’s going to do something mathematical; she tends to like patterns. She loves puzzles. Anything that she could put together, take apart and stack and line.”

But if you gave her a doll or a stuffed animal or a toy that required any sort of imaginary play, she didn’t know what to do with it. She would look at a doll and say: “I can’t take this apart and I can’t line it up, so it’s no use to me.” [Laughter]

Tricia Kenney: [Laughter]

Sharon daVanport: Oh, right. She needed that sequential [system?]

Tricia Kenney: When you get older you figure it out and cut Barbie’s hair. [Laughter]

Michelle: Yeah. We just, again, saw that she was just more mechanically-inclined, and some kids don’t like dolls. It just went right over my head of it being a symptom of anything. She had a lot of sensory issues that we didn’t pick up on. She never liked anything to be on her hands. She didn’t like Play-Doh. She didn’t like finger paints. Anything that basically would be a texture on her hands, she wouldn’t tolerate. We thought: “Well, she’s just a very neat little child.”

Tricia Kenney: [Laughter]

Michelle: We could take her outside and dress her in pure white when she was two, and when you picked her up, she would still be in pristine white. [Laughter]

Sharon daVanport: In pure white. [Laughter]

Michelle: For us, we said: “Oh, gosh! She’s such a neat child.”

Sharon daVanport: “She’s an angel!” [Laughter]

Michelle: You’re supposed to pick them up dirty, and they’re supposed to have their hands in everything. We were very, very lucky, because her eye-contact was not strong, but she did make eye-contact. So because it was just not as strong as it should’ve been, that didn’t set off any red flags for us. But then, because we started the evaluation very early, when we got her tested we went back, and of course they asked all these questions. Then, looking back on it and being able to do some research, we thought: “Oh, gosh! How could we have even missed this!” Every symptom, every sign, every red flag was right there. We just didn’t know what it was.

Sharon daVanport: Right.

Tricia Kenney: I’m sure you had heard the word “autism” before.

Michelle: Yes.

Tricia Kenney: Because everybody hears it; everybody sees it in commercials and PSAs and stuff. Do you feel like enough is explained about exactly what it is? Everybody’s raising awareness about autism, but do you think the message is actually getting out there about what actually it entails?

Michelle: Well, I think a couple of things. I think that there certainly is growing awareness, which is fantastic. But I think the reason why we were very close to missing the boat on this is because I was really not aware of how broad the spectrum was.

Sharon daVanport: Right.

Michelle: I think there’s still somewhat of a lack of understanding by the general public about just how broad the spectrum is, and how different it is from child to child. I think that’s what still is very problematic to people. They take certain signs and symptoms: We also saw Rain Man, and that’s what a lot of people thought was the only definition of autism. So everyone else that’s in that spectrum area, people just don’t really have an understanding of how different it is from person to person and child to child, and how some of the symptoms are mild and there’s any mix or combination of them.

So everybody’s aware now that autism is out there and it’s growing, but I think most people still have the understanding that everybody that has autism is in that more severe category. I think that lot of people on the spectrum who are higher-functioning and who don’t have as severe symptoms, the general public still doesn’t really understand. “Well, how can you have autism if you can talk?”

We get a lot of questions about Gina, and they say: “Well, how can she have autism? She’s talking and she’s socializing and she’s looking in my eye.” It’s a great opportunity for us to say: “Hey, this is a really broad spectrum and the symptoms are different from person to person.” It’s been a lot of opportunity for us to educate everyone the way that we got educated. I think that’s why what’s so important about Gina is that people will constantly tell us: “You must’ve been mistaken. The doctors must’ve made a mistake, because she doesn’t have autism.” We try to say: “Listen, this is the benefit [laughter] of early diagnosis and early therapies.”

Sharon daVanport: Right.

Michelle: “She has it; she’ll always have it. Just because you see someone that is able to verbalize doesn’t mean that it’s not there.” We’ve had a lot of people who have actually gone and done their own research not having anyone on the spectrum in their family, just because they wanted a better understanding of it. That’s a great blessing, that we’ve been able to do that and to reach people. Every person that hears Gina and researches her story and learns more about it is one more person that’s educated on the spectrum, and hopefully one person at a time eventually [chuckles] is wiser.

Tricia Kenney: Yeah.

Sharon daVanport: That’s right.

Tricia Kenney: That’s awesome. Did they actually say to you that she may never talk?

Michelle: What they said to us when we met with the behavioral pediatrician, who was the person who really finalized the diagnosis…At that point, this was the first time that we actually heard anyone mention “autism.” It was a very long testing period. There was a number of evaluations that they did. They did occupational testing, MRIs, blood work—all sorts of physical tests. Speech therapists tested her. It’s a very long process.

The behavioral pediatrician said: “We’ve put all these tests together, and this is what we think she has.” We at that point were not educated at all. So the first question we said is: “Well, so what does this mean? When is she going to talk?” That’s really what we were focused on. We thought at the time that they were going to say that there was some sort of a speech and language delay, and that with speech therapy she’d be fine. The autism diagnosis came really out of the blue for us, because, again, all these symptoms were things that went right over our heads at the time. So when he said “Autism,” I said: “Well, what does this mean? When is she going to speak?” And he said: “I don’t know that she ever is.”

Tricia Kenney: Wow.

Michelle: “Everyone is different, and I can’t tell you that she’s ever going to speak. She may, she may not. But my advice to you is to get her into as intensive a therapy program as you can as quickly as possible to give her the best chances of overcoming this.”

Sharon daVanport: And she was two years old at this time, Michelle, correct?

Michelle: Yeah, she was just a little bit over two.

Sharon daVanport: I want to get into how you focused on music. I want you to tell everything—as much as what you want to share about the different things that you felt were very beneficial for your autism experience with Gina, but also, too, to get into the music. That is just what is so fascinating: how Gina has just blossomed with music.

Michelle: Right. As soon as we got the diagnosis, we did a lot of research, because we weren’t really convinced. Everybody said: “Well, were you in denial when you got the diagnosis?” Not really. I just wasn’t convinced that he was accurate. [Laughter] Then we just did a whole lot of research, and as part of doing the research, it went from not being convinced that the doctor was necessarily accurate to: “Oh, my God! How could we have missed it?” [Laughter]

Tricia Kenney: [Laughter]

Michelle: They are so accurate; it’s absolutely correct. So part of our research, of course, said that early intervention services are beneficial to so many kids. We really got together as a family. Gina’s very, very lucky, because we have a number of extended family members that live close by. We had gotten involved with UCF unknown Florida has a program that’s called CARD, and it’s the Center for Autism and Related Disabilities. We had therapists actually come to our house and give our family lessons: “This is what autism is.” All of us—Gina’s grandparents and aunts and uncles and friends and her dad and I—everybody was on the same page. We had to have an understanding of what we were dealing with, and what we needed to do to help her to benefit from all the services.

It was of great importance to her to have consistency in all of her environments. We were able to enroll her in a United Cerebral Palsy school for special needs in central Florida. They had wonderful programs that we were able to get her into rather quickly. We needed to provide a consistent environment from home to school to Grandpa’s house. Wherever Gina went, we needed to make sure that our reactions were all consistent. [Laughter] Gina sort of had therapy 24/7.[Laughter] Everyone in the family took on the roles of therapists, and she did quite well.

UCP has a number of different therapies [which were] offered during the course of the day. One of them was music therapy. They do music in the classroom, but they have a licensed music therapist that works with the kids there. She started working with Gina. We noticed that when Gina started singing…

Because she did start to gain some speech, and by around age three, she was able to articulate words. In the beginning when she started speaking and we did get some language out and some speech out of her, all she would do was repeat back whatever she heard. There was a long period of us modeling speech for her, so that she could grasp the language concepts. She was able to learn the words, but then the words had no meaning to her. So if we said: “Gina, do you want juice?” she would say: “Gina, do you want juice?” [Laughter]

The speech came, and then language was sometime after that. But she was able to grasp the concept of language somewhere along the line. We noticed that when she was home, even before she was able to articulate words very clearly, she would hum along to music. She would be watching her Sesame Street or her Elmo videos or whatever was on TV. I think there were some Disney programs that had a lot of musical content in them. We would notice that she would be humming and singing the vowels, because she could pronounce vowels long before she could pronounce consonants. She would be using vibrato when she would hold these notes, and she was three, four years old.

Sharon daVanport: Wow.

Michelle: And the notes would be very accurate. [Laughter] So I would be able to recognize the melody of what she was singing, even though she couldn’t articulate the words to it.

Sharon daVanport: Wow.

Michelle: And so we had some inkling when she was around three or four years old that she was going to be musically inclined. We just didn’t know what path that would lead to. We realized she really did have a love of music. She would hear music and you could tell that she would be able to feel and pull in the emotion from the music that she was listening to. It just touched her very deeply. We can recall that from a very, very early age. If you played an emotional song, you would see the reaction in her face.

Sharon daVanport: Wow.

Tricia Kenney: Wow.

Michelle: so we knew there was something very deep and very special there, yeah.

Sharon daVanport: So you tapped into that, then? As a mother, you instinctually saw that within your child. How did you begin helping her to expand on that talent? What did you guys do?

Michelle: She did stay in music therapy while she was in UCP, until age five. Then when she graduated from UCP, we had her in piano lessons. She would sing along at home. We just encouraged her to listen to whatever music she liked. She liked to listen to LeAnn Rimes. There was a tape of LeAnn Rimes that had the national anthem on it. By the time she was five, she was able to articulate well enough that when she sang the song, you understood almost all of the words. She would still leave off a letter or two at the end, but she was singing that song around the house.

Tricia Kenney: Wow.

Sharon daVanport: At age five. [Laughter]

Michelle: Yeah, it was really incredible. You would be sitting in the next room, and she couldn’t pronounce all the words correctly, but you’d be sitting in the next room and you’d hear “land of the free” quite well. [Laughter]

Tricia Kenney: [Laughter]

Sharon daVanport: [Laughter] That’s amazing. That’s one song, the national anthem, that can be torturous. You can either sing it or you can’t. There are no in-betweens on that song. That is what’s so amazing when I first heard Gina sing the national anthem. There are just no words to even explain it. I just encourage everyone out there listening: to know the full effect of what we’re saying, you’re going to have to go to the website and listen to this and pull it up on YouTube. It’s amazing.

Where were we? I’m sorry about that, Michelle. I just had to put that in there. It’s just so amazing to me that this child is [unknown]

Michelle: Shocked, yeah. It was just as shocking to us, because there’s no musical talent or abilities in our family. [Laughter]

Tricia Kenney: [Laughter]

Sharon daVanport: There is somewhere in the line. [Laughter]

Michelle: Yeah, well it’s not on my side, I can tell you that. [Laughter] But she was watching a baseball game one day. On a Saturday afternoon or something, a game came on and there was a national anthem performance, and she recognized the song. She didn’t really understand the concept of what the anthem was and when it’s performed, and she said: “That’s my song!” [Laughter] “Why are they singing it at a baseball game?”

Tricia Kenney: [Laughter]

Sharon daVanport: [Laughter]

Michelle: We said: “Yeah. The sing the national anthem before sporting events. They do it at baseball games.” She said: “I want to sing at a baseball game,” and I said: “Well, maybe someday you will.” A few weeks later, we saw an ad in the paper that the Houston Astros have a spring training facility very close to our house in Florida. They were holding auditions for people to come and sing the national anthem at their spring training games. We said: “Gina, do you really want to sing at a baseball game?” She said: “Yes, I do.” [Laughter]

And we thought: “Well, let’s go down to the audition. It’s open to the public; we can let her do it, and this would be a really great way for our family to celebrate. We were thinking this would be the end of it—that this national anthem audition would be the highlight, and didn’t really expect it to go past the audition. Having singing ability is one thing, but being able to perform in front of people is a whole other talent in itself. [Laughter]

Tricia Kenney: Yeah.

Sharon daVanport: Yeah, that’s true.

Michelle: Especially at six years old, we just really didn’t think that she would ever be selected. Our whole family went down to the Houston Astros field, and she got up there and she took that microphone—she was just barely six—and she belted out that anthem, and she just wowed everybody.

Then she got selected to sing, of course, for the Astros and a couple of other teams. They had sent her video to two other teams, and she sang for the Cleveland Indians and the New York Mets that very first month that she auditioned.

Sharon daVanport: Oh, wow.

Michelle: And we were very concerned and scared, and said: “Well, it’s one thing to sing in front of 15 people, but these stadiums and these games have 7-9,000 people. This is a big crowd for a little kid.” She just takes that mike and gets up there. She’s actually more comfortable in front of large crowds than she is in small groups. She would prefer a performance in front of 20,000 people over a sound check in front of 10 any day of the week.

Sharon daVanport: Wow. She is a true performer. [chuckles] Wow, that is amazing.

Michelle: Yes, she is. And we work through that. I felt that the sound checks and the smaller performances, I think it’s much more intimate for singers to sing to small crowds. I think that that was part of the autism, that she prefers the separation and the lack of intimacy that you have in those smaller settings. That’s one of the things that we’ve worked on.

We saw it as an opportunity when she was starting to really work on social skills. The performing requires her following direction; being aware of cues; paying attention; being very focused on what she’s doing. Taking directions from different people—there’s always different entertainment directors and stage directors and whoever’s running the show, whatever the event is. She needs to be able to follow along, pay attention and take direction from lots of different people, and we wanted her to be able to do that.

We also wanted her to have the opportunity to socialize, and the singing lasts for 90 seconds. But then after that, so many people would come over to her and talk to her. It required eye-contact; it required speaking skills; it required concentration. [With] the performing, she just blossomed like a flower on so many different levels, because it went beyond the singing.

Tricia Kenney: Does she give out autographs as well?

Michelle: She does.

[Laughter]

Sharon daVanport: Oh, good for her.

Michelle: She gives those fairly often, yeah.

Sharon daVanport: Wow. She’s eight years old, giving out autographs. That’s just amazing.

[Laughter]

Michelle: Yes. She sang at a couple of events with Jordan Sparks and the Naked Brothers Band, which is a popular kids’ group. They do events together, and they have a lot of autograph booths set up. She’s gotten used to that from age six.

Tricia Kenney: She doesn’t have any sensory issues going on with the noise and crowds and the lights and all of that?

Michelle: She has come so far. One of the earlier games that she sang at was an arena football game, and it’s a very intense atmosphere, with pyrotechnics inside, loud crowd noises, blaring rock music. We thought: “Oh, gosh! She’s never going to get through this.” When she was three or four years old, you wouldn’t have been able to get her near that stadium. The lights, the sounds, the music, the smoke would have just been way too much for her.

We did start working on that early, because theme parks, carnivals, any event where that was that much sensory stuff going on was painful for her. We would actually do parks and fireworks displays and things like that as part of her therapy sessions, to work her through that and get her accustomed to that. By the time she was six, she was able to go into those stadiums and do what she needed to do without any hesitation.

Now we’ll see her and we’ll still look back. She’s only been performing since she was six and she’s eight now. It seems like a very long time ago, but we’ll see her standing in the right center court, for example, at a Magic game, and there’s 20,000 people screaming as loud as they can. It is really intense. We think back to the fact that when she was five, if you tried to even get her in that stadium, she would have lost her mind when you got to the door. [Laughter] And there she is in the middle of it.

Sharon daVanport: What you’re describing reminds me of Dr. Paula Kluth. I don’t know if you’ve read any of her books. She has a lot of children’s books out and a lot of books for educators. She teaches people on inclusive schooling, and I had the privilege of hearing her speak at our state’s conference a few years back.

What’s so amazing [about] what you’re describing is that you took something that Gina loved and you worked her social skills development in with that. That’s how Paula teaches people…and by the way, Paula Kluth is going to be an upcoming guest of ours. We’re just so excited. She’s going to be on in a few weeks and explain to everybody how to tap into the strengths with children, and to help them even be part of the classroom.

That’s what I hear you saying. You couldn’t have got Gina near that stadium—the indoor football stadium that you’re talking about—before that. But because she knew she was going to do something she loved, she was able to give herself that confidence. Tapping in: Is that what you’re saying and that you really recommend to other parents, is that they really tap into what they see what their children’s likes and dislikes are, and really try to work with their strengths?

Michelle: Absolutely. We’ve always felt that music was the key to Gina’s door. Of course, not all kids [have a musical gift], although a lot of kids on the spectrum are musically inclined. We hear from a lot of parents who tell us that their children have musical abilities and a special love for music. But every child is different, and every adult is different.

Whatever it is that’s the key to their door, if you can find that, it can be very helpful. It’s their passion. This is her passion, and this was her goal. If they have goals and would get that positive feeling of accomplishment from what they do, that’s so motivating. Especially when you’re working in therapy sessions, the more motivated someone is, the better that they’re going to do.

Tricia Kenney: Right.

Sharon daVanport: Right.

Tricia Kenney: Do you try singing around her at all?

Michelle: Do I try singing? [Laughter] I like her too much to put her through that.

[Laughter]

Sharon daVanport: She’s got a great mom with a sense of humor, and that’s important.

Michelle: I just think it’s fascinating.

Tricia Kenney: It’s so funny. One of my sons, he’ll be watching some video or something, and one of them has a soundtrack of a Rick Astley song, that “Never Gonna Give You Up” song. He’ll be back here belting it out at the top of his lungs [chuckles] and he’s eight years old, too. But if I try to sing around him, he gets very upset. [Laughter]

Sharon daVanport: [Laughter] Uh-oh, Trish. That might be your cue. [Laughter]

Michelle: Yeah, I stopped doing that. One of the difficulties in teaching Gina was that, especially at six, she didn’t read music. So the only way that she could learn a song is she had to hear it. I was working with her a lot, and it was so difficult. I realized very early on I could not sing around her. She copies what she hears, and if I did, [her teacher] would think: “Why is she off on that?” And I thought: “Oh, my gosh. It’s because she listened to me.” [Laughter]

Sharon daVanport: Oh, no.

Michelle: So I stopped doing that a long time ago. We’ve joked around about it, and I’ve sung a song and I’ve said: “Well, what did you think of that?” She’s like: “I love you for trying, Mommy.” [Laughter]

Sharon daVanport: Aww. [Laughter] The blunt honesty—I love it.

Michelle: She’s thankfully very sensitive to other people’s [feelings?], because I definitely do not have the gift of perfect pitch.

[Laughter]

Sharon daVanport: Well, she definitely does. Now, Gina mentioned she has a performance coming up on July 16. Would you like to tell us about that?

Michelle: July 16, she’s going to perform for the Celebrity Mascot Games, which benefits the New Hope for Kids charity. It’s in Orlando at Amway Arena, which is where Gina usually sings for the Orlando Magic. It’s a great event, and another story of things that Gina’s overcome. She has also had a fear of mascots for a very long time, and we had to work around that at all these sporting events. But she’s been able to overcome that as well, and this is the first year singing with all the mascots around her. So she’s very excited about that.

Sharon daVanport: Oh, so this’ll be a huge accomplishment—a big barrier that’s going to be broken down for her.

Michelle: Most people don’t know that, because she sings at so many sporting events. But for the past two years, actually, we were dodging all the mascots. We wanted to work her through it, but not during the course of a performance. So we’ve been able to do that privately and now she’s kind of overcome it. She’s very proud of herself for that.

Sharon daVanport: Well, I think that this is just remarkable, what you’re sharing, because you’re helping everyone to understand your daughter. Many people who have different forms of autism…For lack of a better word, some people call it “higher-” or “lower-functioning.” I really don’t know what to call it. I really don’t think they have words, other than the PDD-NOS or Asperger’s or Kanner’s autism. But you talk about somebody with PDD-NOS, and they gain language skills like Gina did, and then people with Asperger’s…

We kind of consider ourselves, some of us, to have an invisible disability, where you don’t what’s going on inside and how much it takes out of us just to do…What little time you share with us, you don’t know how much it takes out of us to do that and accomplish it, and accomplish it successfully. So this is amazing, everything you’ve shared with us. Are there any other performances on the calendar that you’d like to share, or a place where people can go and look at her upcoming events on the website?

Michelle: Yeah. Her webpage is usually fairly updated, and her YouTube page is where we post all of her videos. The Mascot Games, I think, is the 16th at 12:30. That’s a Friday in July. We’re hoping that she comes back to the U.S. Open in New York. The U.S. Open tennis championships will be September, and I think she’ll hopefully be making an appearance there again for the third time this year. That’ll be an event that we’ll post a lot of information about. It’s a great event, too.

Sharon daVanport: Please let us know, because we will post her events over on our events calender at the Autism Women’s Network. I know you’ve got mine and Tricia’s e-mail, so you if you just send us an e-mail any time with her events, we’ll be happy to post them and keep them up so everybody knows where she’s performing and what she’s doing. We’ll just be so happy to do that.

Tricia Kenney: I was just going to ask before we end. Now, she’s doing all these amazing things: singing in front of the crowds and everything. How is her life outside of that? Is she mainstreamed in school? Does she have friends? How is she getting along in that respect?

Michelle: She’s doing fabulous. We have been very lucky and very conscious of the fact that we wanted Gina to have a very typical, six-, seven-, eight-year-old life. So she’s mainstreamed in a private school and she’s going into third grade. She really has the activities that what you would think a typical eight year old would do: she has school, she has piano lessons, she has friends, she has playdates, she does all that stuff.

When we do other things, we squeeze in some pretty extraordinary activities in there. But we don’t have plans to take her out of school, because we don’t want her to miss out on that socialization. She’s just pretty much your typical eight-year-old girl that does all the typical eight-year-old girl things, with a few extraordinary things thrown into the mix.

Tricia Kenney: Wow.

Sharon daVanport: To say the least! [Laughter] Wasn’t there a huge basketball event? I saw a picture of her standing with the basketball team. Was there a huge basketball event that she performed the national anthem at? I know there must be several, but wasn’t there a huge one? Which one was that?

Michelle: Last year, she became the Orlando Magic good luck charm. They were actually in the NBA finals, which is the championship in professional basketball, and they asked Gina to sing at all of their home games. So she was internationally broadcast live during those games, and she’s continued to sing with the Magic. It’s a favorite team of hers. It’s a wonderful relationship, and she sings for them quite a few times during the season and at very special events.

She just sang at their Magic Dancer Final Audition night last night, when the final dancers for the team got selected. She sang her song there for them, so they have a great relationship. But the NBA finals is how a lot of people came to know Gina, because it was internationally broadcast. So we get e-mails from people from China, Yugoslavia, all over the world.

Sharon daVanport: You just didn’t know what you were signing up for when you signed her up for those music lessons, did you? [Laughter]

Michelle: We had no idea. We had no idea where this was going to take us. We will follow the path where it goes. As long as she continues to have fun and she’s benefiting from it, it’s not a pressure for her…This is what she loves and she never gets nervous before she performs. She’s excited and she’s dancing and hopping around before she gets to go on. I’m nervous—[Laughter]

Sharon daVanport: —but she’s not. She’s coming to calm you down. [Laughter]

Michelle: She’s not. Actually, Dad has had to leave the room a few times. She’s had to tell him: “Calm down; go sit down and take a break.”

[Laughter]

He gets very nervous when that crowd is there. It’s a lot of people, and that’s what she loves. As long as she continues to love it and it’s having a positive benefit in her life, we’re going to keep following that road.

Tricia Kenney: Are there any plans for things like America’s Got Talent, or any record companies or anything like that going on yet?

Michelle: She auditions for a lot of different shows, and she’s been on a few of the national talk shows. She really wants to be on the Ellen show. [Laughter]

Sharon daVanport: We’ll email this to Ellen. We’re just going to do that, Tricia, okay? We’re going to e-mail this interview to Ellen.

Tricia Kenney: Ellen’s a wonderful person, so I’m sure she’ll pick right up on this.

Michelle: Yeah, she is. I don’t think she’s necessarily in all the meetings. I don’t think she’s ever gotten our request directly. [Laughter]

Sharon daVanport: That’s okay. She responds on Twitter quite well. We’re going to Twitterpate her while we’re on Twitter, and Ellen’s going to hear from the AWN and all our friends over there. We’ll just be Twittering her the link. She does respond on Twitter to a lot of people in the autism community. She’s actually phoned a few people in the autism community—a couple people that I know. A couple people that Tricia knows quite well, she started following over there. So we’re going to get them to send her a Direct Message. I think you know [unknown], Trish.

Michelle: Well, it would be wonderful.

Sharon daVanport: That would be. That would be amazing. I’d love to see her on there.

Tricia Kenney: It would. It would be like: “We know her!”

Sharon daVanport: Yeah. “We know her! Go, Gina!”

Michelle: I feel the same way. I see her on TV shows and I get so excited. I go: “Oh, my God! I know her!” And they say: “Well, aren’t you her mother?” “Yeah, yeah! [unknown] I know her!”

[Laughter]

It is very exciting when you see somebody that you recognize. It’s a surreal experience. There’s only so much we can do time-wise with her, because we do have her in school, and we have to work all these things around that schedule. So she’s doing some recording over the summer; she’s working with some different producers. She’s not signed with a label, so everything is done individually, but she’s branching out into some different forms of music.

She’s previously only performed ballads but now that she’s getting older, she wants to do some more upbeat music, like hip-hop. So she’s expanding her music a little bit. We get requests for performances all across the country, so I don’t know where she’s going to be popping up next, but wherever it is, it’ll be—

Tricia Kenney: [Unknown] those more popular Top 40-type songs. Taylor Swift, stuff like that.

Michelle: Yeah. When they start so young, I don’t want to box her in to any style of music. I want her to be able to choose what means the most to her. I don’t know. Is she going to be a country singer? A rock singer? An opera singer? We don’t know, and I’m really trying hard to allow her to find her own genre. But she likes all different kinds of music.

Tricia Kenney: Good.

Sharon daVanport: And it’s really all hers for the choosing, because she can carry a tune, that vibrato that she’s got going, everything. Gina’s going to be able to just choose whatever she wants. It’s just an amazing story, and we feel so privileged that you came on to AWN radio and shared it with us.

Tricia Kenney: [I enjoyed?] talking with Gina.

Michelle: You’re very welcome. It’s wonderful saying that we’re so happy to have had the success with Gina. It’s so wonderful to be able to receive letters from people who say: “I wasn’t thinking about this in my child. But when I read Gina’s story, my child has some of the same things going on, and now I’m going to get him or her evaluated.” So Gina’s not even realizing it, but just the fact that her story is out there and people read about her, [they’re] recognizing things early. I think that because of her success there’s a lot of people who are going to benefit and have their own success and be able to reach their own goals. So how wonderful is that?

Sharon daVanport: Right.

Tricia Kenney: Very inspiring.

Sharon daVanport: I’d like for you to end the show for us today, Michelle, by just sharing whatever you would like to share with parents, with other people on the spectrum. Just whatever you would like to share. You’ve had such a wonderful experience as a parent parenting a child on the spectrum, so just anything you would like to share.

Michelle: First of all, anyone who has a child who’s diagnosed, don’t look at the dark part of it. Educate yourself, find out information that you need to, but don’t give up. Reach out to people in the community. There are amazing support groups now—online support groups, community support groups, information that we have access to that people didn’t a number of years ago. There’s so many resources to help you find the plan and the path.

Absolutely, the more family support that a child has and the more consistency, children or adults, anyone in their family that can get everyone to understand their issues. Educate your family, educate your friends, so that everyone knows what that child is experiencing, because we don’t. And now we have wonderful people like you that are on the spectrum [and] can share so much insight as to what the child is experiencing, that you just can’t know as an outsider. So take advantage of the resources and reach out, and do not ever give up hope. Whatever your child’s dreams are, just do what you can to help them reach their individual dreams and goals. Just never give up. Gina’s been saying that ever since she could talk: “Never give up on your dreams.”

Sharon daVanport: Oh, beautiful. Yes, that was so beautiful when she shared that with us. It was priceless. This is my favorite show. [Laughter] It was just priceless to have her on and just share what little bit she was able to do with us. I know she has such a busy weekend coming up. I really appreciate her coming on and sharing the first part of the show with us. Pass on our thank-yous to her, Michelle. Be sure to e-mail us the information, and we’ll get her schedule up on the events calendar at the AWN, okay?

Michelle: We definitely will do that.

Sharon daVanport: Okay, thank you so much, Michelle.

Tricia Kenney: We want to go ahead and end the show with playing her song: “I Sing.” Hopefully, the audio will sound good as I play it through. But is there anything else we need to say before I go ahead with the music?

Sharon daVanport: Where is that, Michelle, that they can purchase the song?

Michelle: They can purchase the song from iTunes, and a portion of the proceeds will be donated to the Autism Society of America.

Sharon daVanport: Wonderful. All right. Thank you, Michelle.

Tricia Kenney: Thank you, Michelle.

Michelle: Thank you, guys.

Sharon daVanport: Bye-bye.

Michelle: Bye.

[Michelle hangs up.]

Tricia Kenney: Okay. We’re going to go ahead with the song, and this is Gina Marie Incandela singing “I Sing.”

Lyrics:

To dream, that's the easy part.
Chasing is much harder.
To fail could break your heart.
We all have that one thing.
If you [love whatever you do?],
It'll always make you happy.

I sing, and I
Am proof it can be done, if you really try.
Believe that life
Will be all that you want it to.
It just takes time.
So as long as someone's out there is listening,
I'll sing.

I walk
A very different road,
With my head above the clouds.
I'm always dreaming about [shows?]
Mama knew
That I was blessed.
She had faith in me,
When no one would've guessed

I sing, and I
Am proof it can be done, if you really try.
Believe that life
Will be all that you want it to.
It just takes time.
So as long as someone's out there is listening,
I'll sing.

Ooooh.

I sing, and I
Am proof it can be done, if you really try.
Believe that life
Will be all that you want it to.
It just takes time.
So as long as someone's out there is listening,
I'll sing.

Oooh.

I'll sing.
I'll sing.

Sharon daVanport: Thank you all for joining us today on AWN Radio, and a very special thank you to our guests and our listeners on the switchboard. We will see you again back here next week on Saturday the 17, when we welcome Gordon Hartman from the amusement part in Texas, Morgan’s Wonderland. We will see you then. Thank you all for joining us. This is AWN radio with Sharon and Tricia. Goodbye.

[End]

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