SPECTRUM SPOTLIGHT: featuring Marc Evan Labonne
As a part of The Answer Inc’s Commitment to de-stigmatizing society’s opinion of persons with Autism & Other Developmental Differences, our Spectrum Spotlight Series was created to shine a light on exceptional Children & Young Adults everywhere - who… in-spite of obvious limitations, are ever committed to living their best life.
This month we are shining a light on Marc Evan Labonne… a stylish you man who loves movies, theater, travel, biking, and hiking. And in this episode of Spectrum Spotlight, Marc’s mother - Mrs Georgina - reminds us to: look for that sweet spot and don't focus on what your child can't do… because a lot of times when people have differing abilities, It's like everybody's focused on what they can't do versus figuring out what they can do, and then… helping them to do that well and reinforcing that behavior.
ME: Tell me about the early stages of Marc’s journey, beginning with his diagnosis.
Mrs Georgina: Well, I've been thinking about that and I don't really have a solid recollection. I know he was very agile early, I mean Mark started crawling at like four and a half months - it was like this little ball who would be on the floor. And then, he took his first steps at nearly eight months - and he would fall and all the adults would be like, Oh my God, Oh my God… but he would get right back up and start walking. But… then we noted that he had delayed speech - so, you know, I took him to audiologist and all this stuff, and his pediatrician said the only way to tell if they can't hear is to stand behind them and say do you want to go to McDonald's and whisper that - so I did that one day and he heard it. So we said okay, it's not a hearing problem.
Then, we noted that he would start singing these songs from the television shows. He loved Jeopardy and Wheel of Fortune - and he would sing the same parts, and we would say Mark i’m so tired of you singing that part, sing the other part - and then he would starts singing the other part and he would go to the bridge. Then, one day, we noted that he was sitting at his little table and he started singing The Ring Around the Rosie song. So, it's like, okay… if he can sing he can talk.
So then, we took him to this very renowned urologist who was down at University of Illinois. And she conducts all this evaluation, asks all these questions, and you know, does this whole Health Analysis and all that. And then in her final report, she comes up and says well, you know, I really regret to tell you, but we look at kids who are displaying these kinds of behaviors and symptoms, and we find out that, it’s likely that they end up in the criminal justice system, and you know, they are not going to be able to do much at that point. I said, you know what… I don't need to listen to this woman anymore. My child is not going to end up in the criminal justice system and she doesn't know what she's talking about.
So when it came to Diagnostics, I never really focused on that. He simply started the public school at like three and a half - and because they have those Childhood development programs and we were fortunate that we had at home care for him for quite a bit of his early years - we never focused on diagnostics or anything, because I said unless you have a prescription for how to teach him I don't want to hear it and I insisted that he be mainstreamed in the classroom and that they give him an aid, and we just insisted that he be incorporated into the regular school curriculum and what he learns he learns and what he doesn't hey, he doesn't.
And then… in the later years in like grade school, we realized that he was a visual learner. With Mark if he saw it and if he could touch it and feel it then he could comprehend it - which was very good to know. Another thing we found out is that he loved Disney. So we went to Disney World every summer and he just loved that… and so he would watch the Disney movies over and over again on the television and I would put on closed caption. So he got to the point where if he saw the news it was on closed caption and so he learned to read because he was able to again - his learning process was if I could see it I could understand it. So he learning to read from closed captioning then after a while, he started putting on French and Spanish. So, you know, that was a way for him to like learn to read and do the association with the words and follow what someone was saying and that's kind of how we rolled. So… we never really focused on giving him a label, we decided not to focus on what he couldn't do, but what he could do. And that's kind of where we we are still today.
ME: What were some of the challenges/Victories along the way???
Marc: Well mathematics has always been a challenge, like other math. I can do it in my head, but sometimes on paper, it’s bit difficult.
Mrs Georgina: I would say that expressing himself is another noteworthy challenge, that we hd to He loves theater and especially musical theater, so he wanted to sing and so we found this guy and he was a baritone at the Civic Opera House and he said, you know, he would teach Mark… so after the first lesson, he called and he said well, I just want to be clear of your expectation because it was you know, it was it wasn't cheap. I told him I said, well, you know, I'm not looking for Luther Vandross, but if you get a little Rod Stewart out of him we would be ok with that. What ended up coming out of that was so much of a great voice, but he learned how to project his voice, he learned how to breathe from his diaphragm, and then we found out that it really helped him with public speaking. So when he had he had little school concert, and they had to sing and the other little kids they you know, they had all the nice voices and stuff -because this was in junior high so their voices hadn't changed yet - but one couldn't remember the words to the song and ran off the stage crying, the other little girl got stage fright and ran off and when Mark got up there, he sang, and when he couldn't - whatever he was not able to hit the note… he talked. He was like Rex Harrison in my fair lady and he had the hand movements, he walked across the stage when he finished, and he got a standing ovation and his dad had tears in his eyes. He did such a great job… he connected with the audience, he gave them eye contact, he went from one side of the stage to the other, and and so, you know, it was just a good experience, and it gave him a big confidence boost going forward when it came to expressing himself.
And as a his mother, that is exactly what I would like for Marc to do is to gain more and more confidence so that you know, he can really excel. When he did this audition for this TV series, what the guy said is that he was in a room with several people and they videotaped him and they asked him questions and what the guy shared with us was encouraging. He said you wouldn't believe that we've seen all these experienced actors coming here and he did a really really good job - and it was a green lighted series with Courtney Vance and and because of the pandemic, you know all pre production halted and I don't think maybe he would have gotten it anyway, but you know, it really showed him that you can do what you want to do and and you just gotta have the confidence and do it.
Our biggest challenge at present is that he is afraid to learn how to drive. He has practically memorized the driver's manual. So I'm like just go and take the driver's test and and then the written test and then you know, you can go out on the road. He used to work at a golf course, so he drove golf carts all around but then they want him to take the driver's test, and he’s like nope. So, you know, I know it's hard… all of us have challenges, you know, all of us have things that we can't do, all of us have fears that sometimes overcome our better judgment, but sometimes we got to, you know, figure out how to get beyond that. So we keep trying to get marked to do that. And and I told him I said everybody has an issue. I don't care who it is, everybody has a disability. Anybody that you might think is perfect, I guarantee you that they are not perfect. They they have an issue same as you… it just might be something different - but just like you, they are gonna have to figure it out, and develop the confidence to do something about it.
Marc: Let me put it this way. Sometimes auditions come up, and sometimes I get a little nervous and then I calm down and then I say… this is what I want to do… then I say I am gonna do it.
When you think about Marc’s future, what are some of the things you think about???
Mrs Georgina: Well, I'm concerned about his ability to be fully independent. He says he wants his own apartment. He wants to live downtown and he wants the safety of a doorman building. and my only concern is that he can't afford it because he only works part-time and the kind of jobs that he's been able to get have been basically minimum wage, you know entry level jobs because people don't see beyond the differences in order to consider him for for other kinds of of jobs. So yeah, that's that's my concern, you know, and when he has to be on his own he has cousins he is Godfather, but you know at some point he will have to On his own and the concern is how is he going to be able to really fully function in society and and feel good about it, you know my ideal with for him to find a mate. I know he has love interest and you know, he needs to be realistic. You know, I tell them the princess wants a prince so, you know you and also trying to find a second job right and and you know No, there was one time he had two jobs. I said, you know having a second job doesn't hurt your single. You don't have any responsibilities at this point so you can work and you know save up money and stop spending money on things like movies and you know stuff like that. So, you know, you can have a decent savings so that that's my concern basically is his ability to function without his parents. And you know really be able to live a full and productive life. So so that's our concern and we are trying to prepare him to do that is then I were just talking the other day about maybe you know, we should try to have put them in an apartment out here in the burbs is close to us so we can see how that works out. We all are considering moving to the city. So if we move to the city, you know, maybe he would have a studio where You know if he still need to do laundry or some like that he could you know walk to where we are and he is even acknowledged that he doesn't mind living on his own but he doesn't want to be far away from us. So we get it so he is realistic in that point of view, but he wants to fall in love or he's or he wants to follow with someone who will be falling in love with him and he loves the fairytale and he wants to live happily ever after.
Marc: I know. Yeah, someday. I'll be on my own the future the future is finding a job that could that what we pay my rent and mortgage.
ME: in closing, What advice you would like to share?
Marc: Control your behavior… Come to take a good look in the mirror…. Be yourself and don't worry about how other people are feeling… That's what I would tell him. And… if they're having a bad day - it's okay, it happens, you got it, don't worry.
Mrs Georgina: I think I would just say to other parents that, you know, look for that sweet spot and don't focus on what your child can't do… because a lot of times when people have differing abilities, It's like everybody's focused on what they can't do versus figuring out what they can do, and then… helping them to do that well and reinforcing that behavior.
I would also say to parents with young children, you know, the the school system is is designed for so-called normal people and normal people are never exceptional. They don't do anything exceptional… that's your C student, you know, the normal student is your C student. So… don't focus on your kid not being normal or not display normal skills, they have a gift and it's God's gift and it's up to the parent and that individual to try to figure out what that gift is and exploit it to its greatest potential and the sky is the limit.
