KIC S2E1 A Mother's Fight for Inclusion to Spin Challenges into Solutions Featuring Marcy Fantel

In this episode, Toby and Marcy discuss the importance of inclusion and advocacy for all students, regardless of their abilities. Marcy shares her story of how she has advocated for her son, Ray, who has a spinal muscular atrophy diagnosis. She talks about the challenges she has faced, but also the successes she has achieved. Toby and Marcy both believe that all students deserve the opportunity to learn and grow in a supportive environment. They hope that their story will inspire others to advocate for the inclusion of all students.

Websites with more information about the podcast:

Spinal Muscular Atrophy - John Hopkins
https://www.hopkinsmedicine.org/

Arc of the United States https://www.thearc.org/. The Arc is a national organization that advocates for the rights of people with intellectual and developmental disabilities. They provide information and resources to families, individuals, and professionals.

#TobyKarten #MarcyFantel #Karten’sInclusionConversations #KIC #Inclusion #InclusionMatters #DiversityAndInclusion #DifferentPointOfView #BreakingBarriers #UnspokenWords #EmpathyMatters #Acceptance #Equality #InclusiveConversations #OpenMinds #Understanding #InclusiveCommunity #SocialChange #Advocacy #ChangeTheNarrative #TheARC #SpinalMuscularAtrophy

For more information please visit https://inclusionworkshops.com/

Transcript

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Welcome to Karten's Inclusion Conversations Podcast. Welcome everybody to Karten's Inclusion Conversations. And I am very pleased this morning and honored to have a guest that I haven't seen in person since I think Marcy, you could correct me, 2018, a few years ago. And she has a son and her son is Ray and she has another son, Ethan, as well. She has two children. She is a mom and she is a wife and she is a lot of different things, a daughter. I think she is an excellent role model that I am so delighted that I have the opportunity to speak with her. And I think our listening audience in Carton's Inclusion Conversations will gain many insights. So officially welcome Marcy Fantel. It is a pleasure to be here. Would you tell our podcast listeners a little bit about yourself? Sure. Very lucky to have two children. Very, very blessed. Always wanted to. And I have an undergraduate and graduate degree. I was a professional until my son was diagnosed and life changed. And I can't say I'm a stay-at-home mom because I'm not really very oriented toward those things like cooking and cleaning and things, but I run the house like a business. And there's so much to do for Ray as well as my other children and balancing out being a wife and just taking care of everything. And we've had construction projects and I've managed those construction projects for Ray and all of his medical needs and appointments and therapies and such and the education piece, which has been a huge, huge thing. My mother was a teacher and I grew up thinking that and being told that the two things they could give us were love and an education. So passing that on to my children, that's always been a very important piece to me is education. And when my son Ray was diagnosed at five months of age with spinal muscular atrophy, which is unfortunately the number one genetic killer of infants, life definitely took a turn and thinking about the future and thinking about his education really became very important. So what does it look like and how do we do this? And so when we approached the school, because my mother said, when he's three years old, meet the superintendent, talk to them and get the conversation started. So we started early intervention and we started some mostly with physical therapy and occupational therapy. They didn't really go into speech at that time. I'm not sure exactly why because SMA affects all of the muscles. It's similar to ALS, but in babies, obviously, you know, muscles in the mouth and the vocal cords and all of that are very important. So we've had to find kind of that piece of it on our own, which I could speak to as well. So we, you know, started doing testing and you know, with the school district early on and you know, received feedback that I really didn't agree with and started to see that things were not going to be as easy as I had wanted. And I kind of think that that's been, it has been a rough, rough start for many years. And thankfully things have smoothed out and he's now in ninth grade and we're very, very blessed. Yes. And I'm blessed to have met your family and blessed to have met Ray. And you touched upon so many points, but you didn't start with Ray's diagnosis of SMA. You started with characteristics of yourself, of your children, of your hopes, of your aspirations. And yes, Ray has a diagnosis of OHI, other health impairment, specifically with the SMA. And a lot of, a lot of teachers, a lot of professionals never even heard of SMA. It wasn't on their radar. It wasn't on your radar either. Right. And you mentioned a lot of things about a few of my inclusion principles and the icons of a ruler for structure, or maybe the brain for awareness, like making everyone aware or compassion and collaboration and reflection from everyone. So Marcy, if you could pick one of these and maybe discuss a little bit more about how this relates to your journey with Ray to navigate and to ensure that he receives the services that he needs. Wow. Just, I have to pick one, huh? Well, you could pick more than one. You could definitely. They're all connected. I would say awareness and professional collaboration, I think are at the forefront of, you know, my strategy and, and as you mentioned, a lot of people have never heard of SMA. I had never heard of SMA until, you know, I, we went to children's hospital, Philadelphia, met with a neurologist and life got turned upside down on March 30th of 2009. Many people call it D day or diagnosis day. Yes, we've done awareness. And, and when Ray was young, we wanted to make children aware too, because at the time he was in a stroller, you know, or, you know, manual wheelchair we'll call it, but obviously, and then later on a power wheelchair. So when school started, we had learned from somebody out on the West coast that they'd done this with their child as well. We created almost a story book about Ray and we presented it to, you know, the teacher to present to the class of students. So they understood a little bit about Ray and what we were really trying to do was show people, show children that Ray is a kid, right? Go past what he can't do and, you know, and, and look at like the fact that he, you know, his favorite color is red, you know, his favorite baseball team is the Yankees. He likes dinosaurs. And, and so it almost was like an interactive story book where it would say, like, do you like dinosaurs or do you like, you know, have a favorite sport or, or things like that. And then as you know, he got up, grow older and we had some more experiences. We say, you know, we'd show a picture of him, like swimming with a dolphins and saying one of my favorite times was doing this. And have you ever been to Florida and swam with the dolphins or something? So almost trying to create the conversation and get beyond the fact that he can't move his body much and get beyond the fact that he has a lot of medical machines that come with him. And at the time a stroller nurse, you know, now it's a power wheelchair and a nurse, but just that I, you know, he's a kid and talk to him like he's a kid because that's what he wants. So I think the awareness in at different levels, right? We also used to send a letter home to parents as well that talked a little bit about Ray and also talked about how sensitive he was to getting respiratory infections kind of just trying to make them aware to hopefully, you know, not send their children's school sick or if they did stay away from Ray or whatever but just to kind of educate parents as well. So there was different levels of awareness and education that we did early on. And I have to say we were very lucky. And so I guess I should say that even going back a little further, the school district wanted us to go out of district. They wanted us to go to a special school and we fought to keep him in school, district and what that looked like for us is very, very different than their typical, you know, student obviously. And it was not easy, but it was something we wanted. We wanted him to be part of this community. He lives here and we didn't want people to be able to say to Ethan, who's that kid with your mom? I wanted them to know who Ray is, that he's part of South Brunswick and have typical friendships. But there's been some downside to that and we can talk a little bit more about that as well. Thank you. Thank you. And you use the verb you fought the school district and I always like to spin it in the positive is that you increase the awareness of the school district. You advocated and you have more awareness of what your son needs than people who just see him for a quick exam or an assessment, whether it's neurological or cognitive. And Ray has so many strengths and interests. I was going over some of the notes I had and I love the fact that you shared when Ray was learning to use the Bluetooth wheelchair and the joystick to navigate the screen. He was teaching the para and the nurse how to use it as a fourth grader. So he was able to not only understand what he needs under your auspices and the fact that you were a huge advocate for him, but you being a role model, what I saw, which what I loved and I think parents and families could pick up on this is that you modeled how to collaborate. You modeled despite a couple of challenges, despite differing opinions that I think were kind of based on less awareness of who Ray is and what he needs and the strengths that the school district didn't realize they had if they collaborated with others, be it a tech private evaluation and learning about tools that not only I think helped Ray, but I think you set the stage for other students with physical difference to succeed in school and you kind of raise their awareness. Okay, I'll get off my soapbox. I think it's important to know that, I mean, again, my parents taught us to go after things that we thought were important. It's just hard work, right? And so my job as a parent was to make sure that my child had what I thought and felt that he needed. The districts said that they thought he was slow processing when he was young. He didn't know things like a ladder and certain things when he was three years old, but he knew a stethoscope and different things, right? So his frame of reference was different and I knew that he wasn't a slow learner or anything like that, that you just needed to find the right techniques to kind of bring it out. But again, it taught me that things weren't going to be so easy and it was up to me to make sure that he got what I felt that he needed to be successful in the education that we wanted for him. And I think that you define inclusion and you helped others define inclusion. And a lot of times, you know, people understand certain differences, but not others. Students are more accepting. And you mentioned something earlier about the peers. He's just one of the other kids, you know, he likes Broadway shows. We're Facebook friends. I love seeing your posts about the different shows that he sees. Yeah, we've seen almost 30 shows in like eight years. It's amazing. And he needs to be a theater critic. That would be kind of right. We don't know if he's going to write Broadway shows, you know, thankfully due to speech to text, he is able to put his thoughts into some type of written documentation or whatever. So, you know, he doesn't know if he wants to do movies or who knows, you know, I don't know, but the technology that's out there is tremendous for people like Red that can't physically write. And I definitely did, you know, there's been so many pieces that have been so, so important and along this path, but inclusion has been tremendously, you know, helpful to us. Because again, you know, we want to make sure that he isn't kind of kept on the side or I remember in kindergarten, they did an assembly and they had the bleachers and he was literally on the edge outside of the bleachers. And that really burns me up when I see stuff like that, to put it lightly, but you know, that was something that we fought. And so some teachers were much more open and sometimes I had to be a little bit more finagling, but had the conversation about why don't you put children on the floor in front of the risers and around Ray, it just looks better and it makes everybody, it doesn't look like he's by himself. And if I showed you videos, you would see that children were actually turning their bodies because the risers are kind of pointing to the middle and then you have Ray on the outside. So in order for them to talk to Ray, they had to kind of turn. And so it's, it's not inclusive. And that was just one of the things that I was like, if this is, this is why I need to bring in an inclusion person, an expert, because sometimes the district doesn't take it from a parent. We're not experts. We're kind of, I don't know, we're the expert in our child supposedly, but not, we don't know enough about what goes on in schools and that an inclusion person, and that's why we were so desperate to bring you in and have you on part of the team was that, you know, you brought that perspective that this is not, this doesn't look right from a lay person's perspective. This isn't what we, you know, this isn't inclusion. So it kind of validates what we were saying. And I think that brings to mind also that piece of collaboration and collaboration just doesn't occur spontaneously. Sometimes we have to organize it. Sometimes we have to reflect what it is and is not. And I always tell people, I'm never the smartest one in the room because I haven't heard what you said. And I think part of the collaboration is listening. And then I was able to support what you knew internally with evidence-based practices. It's a sanity check as a parent, you're like, this doesn't seem right to me. Is this right? Or am I being, you know, am I asking too much, you know, is this realistic? And you've had, again, the school district has not seen a child like Ray. You may have seen a child like Ray in another school district or, you know, something similar. So you have more of a breadth of experience that you could bring to a school district to say, I think that we've done it this way here and then here and here. Well, you know, have you thought about this? So it's just, you know, maybe it's not, maybe what I'm proposing isn't the best option. Maybe it's just one option. And maybe you can bring another one from something that you've seen work. And that's what this is. It's all about collaboration and it's a puzzle and putting the pieces together and you bring a piece of that puzzle for sure. And technology has been huge, huge for Ray. And it continues to be. It is every time I think this is the latest and greatest, 10 seconds later, there's another tool or device that changes the outlook for, for Apple, you know, you know, I mean, even Pete, like, you know, pieces, you know, we're finding, you know, certain tools that are late people's tools that Ray can use. You know, I don't know if you're familiar, but you know, we, we got Ray an iPhone and you can make everything a number on an iPhone. So he can say, tap one, tap two. He sees it on his screen as like, you know, an application and it's tapped and everything is numbered. And so he says, tap one and it opens my Instagram tap to it opens his email. It's it's amazing shortcuts, shortcuts that people figure out here is something that we need to figure out how to do it differently. And necessity is sometimes the mother of invention and what you shared also goes under a very big umbrella of being willing to know that there are other things out there that we don't know about. You know, I don't have all the answers. You don't have all the answers. Let's look at Ray. Let's progress monitor. Let's see what he responds to. Let's hear what Ray has to say. And he just the fact that you shared, I didn't even know that about the iPhone and the shortcuts. Thank you. And if you have any other tools or websites that you think will help families, please share that and I'll list it with this podcast episode, because that's how we know and grow. And I think that it also defines collaboration and your can do must do will do with a smile attitude is needs to be cloned. And it's not always easy because families, as you shared that SMA wasn't in your vocabulary. And as you shared a lot of parents and families, and I'm sure you have met different people as well who have children with differing needs who go through various stages of acceptance and denial, hostility, shopping around for different things that are going to be the best, which are not always evidence based. There's a combination out there of things that help us and things that hinder the collaboration as well. And people that hinder sometimes. In what way? Unfortunately, I mean, you know, we've had people that just don't want to engage and collaborate. Raised in ninth grade. So in the nine years or 12 years or whatever of his education, we've been through three superintendents that I've interacted with. And I say this, you know, because each one of them has been a little bit different. Some are more engaged and some are more understanding. And we're very blessed that the current one is very open. And I actually just had a conversation with him last Friday because handicapped accessibility to the high school is a concern right now for safety. And so I have taken videos of how Ray gets into and out of the building and the fact that there aren't some ramps where there should be at the end of walkways and things along those lines. And so I presented it to the high school principal and, you know, and I understood that it wasn't something he could do. It's a capital project. And so he was like, OK, but, you know, that's not really my wheelhouse. So, you know, go to this person in the school district. And so I did and I didn't really get a response. Quite honestly, I did get a response was like, oh, we'll look into it. And I was like, well, can we partner? And it was like, well, we'll take care of it kind of thing, or we'll do what we got to do. And they made very slight adjustments. And I happened to be at National Honor Society induction for Ethan and and the superintendent was there. And I was like, oh, you know, at the end of this, I'm just going to go and bump into him, say hi and, you know, and see what we can do about this. Right. Just you have to use your opportunities, opportunities, you know, wisely. And so I presented and I said, you know, I'd like to and he goes, oh, he's like, interesting. Send me some information. Send me an email and let's get it on the calendar. So we met on Friday and now we're working in a deficit, you know, funding deficit next year. Huge one. We more than we had anticipated. And so funding is extremely tight. But I showed him, you know, four different areas, walkways that need to be addressed or modified or even just developed. And he's he sees it. He understands. And so the question is, what does this look like? I don't think he's ever done anything like this. I also said that we've been very lucky that we've had construction projects at the house and we have received different donations. And I can say that we've received donations from two different companies of cement. And I offered that I would reach out and see if we could get cement donated for this project. I offered that, you know, I've got masons that I don't know if they would donate their time. And but again, we run into some logistics that they need to be state approved and this and that and the other. So. But again, we're collaborating. We're seeing a project we're seeing and we're bringing our strengths to the table and we're just brainstorming and seeing what we can do to make this work, because, again, this is the safety. And I said, you know, this is for rice. So I feel like and he says, I know, but this is for my students. And that's what he said. I said, you know, but my concern obviously is, you know, for right now. But he says, you know, there's going to be other students. And that's the case. And that is the case. And I love that attitude. And I'm very lucky that we're at this point because it wouldn't it wasn't like this when he started. And when you got involved back when he was in elementary school, it was a very different conversation. But you made this happen with the steps, the motions and the planning and the prep and the perseverance, resilience. Shall I go on and on luck? And a lot of migraines and stress, humor and some people don't like that. So here I'm going to ask you a question. Ray is your child. But what is your ray of sunshine as well? I know it is Ray and Ethan. I know that. But also, how do you take care of yourself? How do you make sure that Marcy Fantel is taking care of her children and at the same time, happy and smiling? What do you do for you? I like pedicures very much. And I like massages. They're kind of necessities. When are we going? When are we going? Yes. Whenever you have time. But I like just, you know, I like to catch up with friends still. I like to, you know, have coffee and or lunch and, you know, and just pick people's brains. I love hearing what's going on in the world from people's different lives and stuff and just catching up with people, family, friends. Yeah. And I think, you know, my mom passed away a year ago and I think it's become even more important to me that connection COVID with the distance that we had for so long and not being able to see people and face to face, I think was hard and made me really want that again. And so I don't know. That's what I think. I love spending time with my boys and my husband, too, but I just love it. I love going to shows as a family. I love going to Ethan's baseball games and cheering for him. Yeah. Just, you know, I just it's yeah, it's I don't know. I'm pretty simple in some respects. I think that you were pretty wonderful in many respects. And you have something that understands not only your son's perspectives, but the perspectives of others. And I'm not saying that you can always move mountains, but you figure out how to make the mountains accessible, how to circumvent what others would view as an impasse. And you were able to figure out, well, what else could be done? And I think that that in a lot of ways defines inclusion. It's not a rubber stamp. What you have done for Ray might not be what someone another family member has done. But the characteristics that you have shared with our podcast audience of advocating for your child, knowing what's out there and what your child needs and knowing the players, who to go to, how to persevere in some ways and how to just stay the course. It's hard, though. And staying the course is very difficult, especially for myself. I'm used to putting my head to something, you know, writing something and getting it something done. And I've learned in the school district, it's not that easy. It's not very it's not a quick fix. This has definitely been a project and it continues to be. As you can see, there's new things that come up, you know, with this, you know, handicapped accessibility to the building, you know. So there's a constant conversation and yeah, and I just think it's really, you know, communication and relationships. But patience has not been not been one of my strong suits ever. Well, hello. I think it is and a little reflection on how you might perceive patience as a weakness, but you figured out how to patiently support your son while collaborating with others. And you mentioned giving up. I mean, that's the thing, right? Because you have given up on myself and I'd be giving up on my child and I and I just can't just can't like, I don't know, that's just not how I was raised. You just don't. Right. So it's just keep it's find another path. It's you know, make another friend in a different area. But it's hard, you know, I mean, it's hard to put yourself out there. And try to have conversations with teachers that may be against some of their administration, because, you know, I felt like there were times when I have conversations with teachers and I would be completely honest. And I know that that was getting back to people that didn't support what we wanted to do for Ray. It's just it's hard. So it's it has it's been a lot of challenges and and I can't sit there and say that we're smooth sailing. I mean, I hope. But you know, every relationship is very, I don't know, fragile, right? And at this moment, I'm very happy with where we are. I mean, and I also think that elementary schools are lean, you know, man in a manpower or woman power wise. So I think that some of the things that we were asking were just nobody wanted to take additional responsibilities on. And I mean, I'm talking about like scanning documents for Ray, so they didn't have paper based assignments, things like that, that think the teachers, a lot of teachers in elementary school just didn't want to add to their to do list. And I just think that it's, as we've seen, just it's as there's more people as the middle school had extra resources, it kind of finagle things a little bit better. And we're seeing it now in the high school as well. And I think the world has evolved in a lot of different ways and education has evolved A lot of teachers are burdened with so much on their plate and they're thinking, when can I carve time for this? But honestly, when I talk to many professionals now, if you do this now, you'll be saving time later. The setup is different. Maybe it's something you never did before, but wow, isn't that great? You learn something new. And that's how I think that interchange of exchange of ideas helps everyone and families and teachers. We are collaborators. We need to have the same outcome, successful inclusion, not only in school, but in life. And that is formulated by staying the course. That's formulated by trying things that you never did before. That's formulated by listening to others. I don't have to agree with everything that a family member might say, but I'm going to write it down and I'm going to look over that list and say, well, maybe this has some validity. Oh, I didn't think of it through that lens. You know, it's growth or in a family member, you could do the same. Someone might suggest something to you that you're looking at it through a different lens. And the inclusion lens, there's different different ways of going about this, but I don't have to have my way as the best because I haven't heard how together we could make it even better. But something else that's unique and I forgot to mention is, I guess the last eight years, well, you know, Covid was different anyway, but cold and flu season in about mid October through the end of March, Ray was always homebound for instruction. So we had a teacher in our home for much of that time period and they would teach him. And but we always wanted him to connect to the public school and do different things. And that was even a struggle because, again, it was very new. So we had a Vigo since he was in kindergarten. We've had the beam since then because there's been issues with the Vigo. But we've always had that connection at some level. And this year, I'm for the vice, you know, after many years of getting the advice from his pulmonologist at CHOP that he not go to school during cold and flu season, we received the recommendation that we try and stay. And so this is the first year that Ray, knock on wood, will be in school in person the entire year. So a very, very different experience for him. And that has impacted, I think, some of his social stuff, though, too. And I don't know if you can catch up, but, you know, having him home for those almost six months of school every year has been difficult. I know that, you know, socialization is has always been an important thing. You know, he's a social child and he loves to chat. He loves, you know, people and kids and joking around and everything else. And so the socialization piece has definitely been difficult. We're trying to do what we can do to make it work. You know, in middle school, they invited Ray like we had something with the case manager where even during cold and flu season, we would bring him in maybe once a month or so to a conference room and he would pick some friends and they would go and have like lunchtime chats, which was phenomenal in person so that he got that socialization. So we've had to brainstorm this year, just I don't know why, but I guess because we were kind of thinking that he would be home at some point. He's done something with the seniors. So he's a freshman and he hangs out with, I don't know, six or eight seniors for social hour every once in a while. I had, I think, three or four of them. I think there's the last one is coming up on Monday. And, you know, I guess the again, the case manager has reached out to different children, students, and they volunteered. It wasn't like she forces them or anything. And they just, you know, then Ray comes home and he enjoys that experience as well. So again, you know, out of the box thinking and collaboration and asking the questions of case managers is like, is this possible? How do you think, you know, how do you feel about this? And would this work or has really helped us a lot? And Marcie Fantel, I thank you so much for sharing your insights with our listening audience, and I think you really define what inclusion is and the importance of not just physically being included, but meaningfully being included and how the research now is out there that it says it's growth, not just for the child who might have an IEP with specially designed instruction, but for the other students in the class, the peers that will be his co-workers as he advances and graduates in a successful post-secondary options are there for him. That's because of the planning and the prep from you and the collaboration from the school system. And growth is wonderful. And you have germinated those seeds to make that happen. Marcie Fantel, thank you. You know, Toby, I had to say that I want to thank you as well, though, because you've helped me. Right. So this is a it's every thing is a two way street. And and I've learned from you and you've helped me and to kind of guide through this process. And so I appreciate that a lot as well. So thank you very much for your help. And Karten's Inclusion Conversations Podcast audience appreciates you. Thank you so much, Marcie Fantel. He can feel the stairs and hear the words unspoken, not so unaware of a world that thinks he's broken and who never even knew the kid with the different point of view. No, they never really knew the kid with the different point of view. Copyright Mmxxii Karten's Inclusion Conversations. Thank you for listening. Check out other episodes on all major platforms.