The founder of the remarkable Hirsch Academy, Shelley Carnes, talks about the radical shifts that were achieved in her school when they simply started listening to Autistics.
Audio Transcription
Vaish:
Hello and welcome back to functional nutrition and learning for kids. In the midst of these slightly crazy and extremely unpredictable times, we’re back to our regular podcasting frequency and I will be seeing you every Friday with a new podcast. The guest of today’s podcast is Shelley Carnes, who is the founder of the very out-of-the-box Hershey Academy based near Atlanta, so she has over 25 years of experience in partnering with the artistic community. She is a licensed occupational therapist, a floor-time provider, and one of the co-founders, as I said of the Hershey Academy.
Now she’s also a passionate supporter and advocate for the neurodivergent community and is a voracious learner, of what more can be done to support and empower the beliefs behind neurodiversity. Shelley loves being a wife and a mom to two kids and two furry animals. She loves playing and exploring outside playing the piano, and she will dance any chance she can get. Now, just before this recording, I was telling Shelly that I was read, she would dance because I love dancing. And I just love hearing that about Shelley. But Welcome back, Shelly. Welcome to functional nutrition for kids. Thank you for being here.
Shelley:
Vaish. It’s so nice. And yes, anyone that knows me knows my love of dancing.
Vaish:
Yes. And one of the most unique things about the Hershey Academy, Shelley is that. we were talking about how we were talking about the envy factor, we’re talking about how much I had wished that said could go to a school like that. And I love what you’ve done with the kids where you respect them and treat them at an age-appropriate level. And I was wondering if you could share your journey with the listeners about how you started? And what got you to this position that you’re in right now?
Shelley:
Well, sure, I would love it’s one of my favorite stories to tell to, as you said, as you mentioned, I am an occupational therapist, and that’s what I have been doing for the past over 25 years now. And when I first started, I was working a lot in clinics and in different schools. And I even developed some sports programs and some different programs for the community. But one of the little guys I was seeing was at school, which was a really good school, who was just misunderstood there.
He was that kid. for example, he would go under tables when or go under a desk when he was overwhelmed. And the teachers saw that as bad behavior or they were confused by that. And they would try to reach down and grab him and he would you know, he would hit them. And then it would become a call to the parents of you know, this kid is attacking our staff, which means six years old, let me just.
Vaish:
Right, Oh, my God.
Shelley:
So really misunderstood. And I was trying to be his advocate, you know, trying to talk to the teachers talk to the administration, not only for him, but all my other students at other schools talking about, you know, there’s a reason why he’s doing that. And actually, I think that that’s a really smart strategy for him to go underneath this desk.
This is a kid that struggles with a lot of auditory input or a lot of movement around his body. And so he was trying to find a safe place for his body. And this was a long time ago, right? So this was. 20 or 18 years ago, when sensory integration, and sensory support sensory diet, really weren’t common terms back then. But and so the parents of this little boy came to me and said, my child deserves a school, my child, and children like him deserve a program where they are understood.
Vaish:
And connected to that, even that perhaps was very rare for a parent to realize that because I think at the time, we were all conditioned to believe that this was the best we could get.
Shelley:
Right? Yeah. And how bold and brave these, this set of parents in particular who had that vision and who still has an empowering vision for all children. And I loved that vision because, you know, I had, we had this little boy but we also had all these other kids or I had all these other kids on my caseload that it was a very similar story. And so I jumped in with them. We also jumped in with a floor-time counselor, who had who had little experience in the educational system too. And she was incredibly helpful. And we decided to start her shoe Academy, and that was 15 years ago. And so there was a little bit of a leap of faith there. If not a huge leap of faith by all of us. And we weren’t sure how to run the school. We weren’t sure.
How to support these kids? But we were sure that we were confident that we could be vulnerable enough to ask other people ask advice from other professionals that were specialized in, supporting autistic children, and autistic students. And so that’s where we started with four children in this program, and now we’re up to 30. And we’ll always stay No, no bigger than 30 students. But, you know, 15 years ago, when we were just starting, you know, we were asking educational consultants, we were asking all these professionals, what would you do?
How would you set up this program? How would you set up these classrooms, we got really good advice. And really, the advice of really respecting each child, you know, those were, those were really important. important pieces of advice, that state that stayed with us importance of the relationship with the children, making sure that we’re staying connected to the children, a lot of that is from the floor time philosophy, right, and what we learned from our counselor. but we still felt like, there were some things that we were missing. And again, we had that, you know, who else can we talk to? Who else could we learn from, we had a lot of questions. And we were, especially as it related to the curriculum, so we were teaching kids that were 1112 years old, and they’re these were children who had IQ scores, you know, they had taken IQ tests, and their IQ scores would put them at a, you know, four or five-year-old level.
We knew that they were, those scores were a little off, you know, we knew that, but we had no idea how off those scores really were until later in our journey. And but we taught them at that, you know, we’ve taught them at a kindergarten first-grade level, thinking that that’s a stretch for them. And, for example, we would repeat the cat would read these much younger versions of the fairy tales and things that we really felt were We were trying to have a meaningful, meaningful curriculum.
Vaish:
At the time, the information that you had was that these children, you know, were delayed, and the IQ score was taken as important at the time. Correct?
Shelley:
Exactly. And that’s what the professionals were telling us as well.
Vaish:
Right.
Shelley:
So we, but we have some questions about that. And but we weren’t sure what else to do with that. And I think a lot of educators are probably in that space of I know, this child can do more, but I don’t have the tools to take them to the next level. I know. So yes.
Well, the big turning point for us was when we kind of exhausted a lot of the professional resources of asking all those questions, and we were suddenly started dipping into the autistic community. So we started asking for the autistic self-advocates to come into our school and give us advice. And that was the game-changer for us. And that is the turning point for how her shifted, and this was about eight years ago.
Vaish:
Can I ask what is it that prompted you to get advice from autistics?
Shelley:
Well, I think that feeling of not knowing or knowing that we didn’t have all the answers, right. So I was in the position of the Head of School at that time, and I know we could be doing more, I just didn’t know what, and I was thinking who could tell us? We’ve talked to you know, top professionals. But who else? You know, what about these adults autistic adults that have been through revolutionary programs, educational programs, who was happy with what they received? And that’s kind of that’s what took me to the self-advocates that we reached out to. And that was where it all changed.
Vaish:
Okay, that is amazing, Shelly. But just before, before this conversation, Shelly and I were chatting about the fact that the entire philosophy behind Hershey Academy is rooted in both vulnerability and an openness to understand openness to know more and then also an understanding that we don’t know everything that nobody is an art expert, except the people that are better artistic, right. So I just, I just want to thank you and commend you for this incredible attitude, and. And I really wish that this would be more pervasive.
I know that a lot of schools are started by people who want to serve the community. So what do you think the gap is between a different school between schools that are still doing baby stuff with, with kids that are older, and between a successful school like arch Academy?
Shelley:
Well, I think it’s getting guidance from those who are the experts, I think that is, again, the game-changer for all of us. If, if we are supporting children with a different set of Neurology then we have so I’m neurotypical, I am not neurodivergent.
Yet, I’m in this position of leading a school of neuro divergence students. So who should be my mentor, it just makes sense that it should be someone from the neurodivergent community, and not only one, but many. And so that’s what shifted everything and some of some examples of what they offered when they came to visit. And there were different people at different times, and in different personalities, too. So they all had different pieces of advice. So some examples were, of course, you know, some of the structure of the building like the lighting was really off, it was really too bright in some areas. And that was an easy change. Then there was another self-advocate that encouraged us to move the routers, there were routers, we put in the hallway to make sure that the whole school had internet. And what they had told us is that you could hear it, there’s like a high-pitched sound coming from the routers in the hallway.
That was an easy change. And that was an interesting one because we had some kids that were stuck in the hallway, and we’re struggling in the hallway. And we made assumptions that were wrong. So we made all these assumptions based on our neurotypical lens of what could be getting in the way of this student. But when we change where the routers were, when we got them out of the hallway, the children were moving more smoothly in the hallways, it was things like that, that was so simple. And the one thing that they did agree on because we had a number of self-advocates supporting us, they all agree that the curriculum was way too low. And why weren’t we teaching age-level material? And that stumped me? I was like, well, that’s what their IQ score says. And that’s what the educational consultants told us. And, then I had all these, you know, feelings of doubt, and oh, my gosh, what if we’ve been wrong? And they said, Just try it and see. So we always tease that we’re like, kids in a treehouse here at Hirsch and you know, the staff here. And we kind of pulled everyone together. And we said, let’s try it.
Let’s just try going age level and see what happens. And you know, if it flops, then we know how to go low. Let’s just try it. And so we went from reading Pete the cat one week to reading Romeo and Juliet, the next was that much of a shift. Yeah. And we’ve never looked back. So we saw immediate, immediate changes. We saw kids staying in the classrooms where before they were running out, we saw kids managing their bodies a little bit more smoothly. So we had kids that were more regulated. We had kids, it seemed like they were just more engaged and happy
Vaish:
Wow, that that that is incredible. It’s not incredible. Actually, it is. It’s it’s now it is common sense to both of us. But I mean, at the time, I feel like it would have been incredible.
Shelley:
Oh my gosh, well, and we were just kicking ourselves, right? We were just oh, my gosh, it was it’s such a no brainer. They were they were bored. You know many of our kids were bored. But we still had the question of how do we know what they’re taking in many of our students are non-speaking unreliably speaking, how do we know what there what they’re taking in? How do we know what their questions are about this material? How do we know what they want to say to their peers? And that was the other game-changer was communication access that the self-advocates guided us into? And those were approaches that I know you’ve heard of, and I know that you experience yourself
Vaish:
You can talk about them too because I don’t think all the listeners might have heard about that.
Shelley:
Well, there are different forms of AC alternatives. augmentative communication. And basically, it’s its different tools to help our students communicate their thoughts. And we are trained in spelling to communicate, which has a very rigorous intensive training protocol with Elizabeth Vossler, and growing kids therapy, and I ask, and we’re also getting trained in Facilitated Communication. through the wellspring, Gil, and some of the folks over there, and all of these methodologies are helping our kids communicate. And that is that has been the other big huge shift that we needed to make is not only teaching them at age level but also how to support their communication access. And that was a huge, huge game-changers for us. So now, we have a curriculum of Common Core. But we also have physics, we have a philosophy, we have creative writing, we have blog writing, we have a new show, we have a very rich, rich curriculum, that that not only is his Common Core but a lot more.
It’s actually more of a gifted program in some of our classes,
Vaish:
I bet and you’re just made me like 10 times more envious, but yeah, that is fantastic. I love that you have that. And one of my questions was going to be if Do you see every child as being capable of an equal education? And you kind of answered that question, and I know you do. But what are some of the common arguments that you encounter out in the real world, even when I’m advocating for said, is that we don’t know.
How do we know? So we are starting from? Is it true that we’re always starting from a state of presumption?
Shelley:
Yes, yes. And I also feel like no child really fits into one cookie-cutter mold. And I really feel like our neurodivergent students are the canaries in the coal mine, I think that they are letting the world know that this educational system that is the most traditional setting, is not working. It needs to be more individualized. Yes. So it just doesn’t work for most kids. And my wish, is that every child is surrounded by educators who want to understand who takes the time to understand how that particular child takes in information, how to identify and partner with that child to figure out what supports work for that child, and I’m talking about every child, and so that they can access learning and access communication. That’s my wish.
Vaish:
That’s a lovely vision, I’m guessing that involves moving from a very mass-based educational system to a very individual education system.
Shelley:
Exactly. I really think it can work was amazing, because giving the tools it’s giving the tools to the educators, it’s giving them tools to the administrators of these schools of so that they can train their staff it’s really in it all boils down to believing that their students can do it.
Vaish:
Yeah. What about the parents, so if you had three things, or even one thing to tell a parent who’s educating a child, and not just a child with autism, it could be a child with any disability, Down syndrome, cerebral palsy, anything that sometimes comes with a label of intellectual delay or of, of just being exposed to an education system? That’s not good enough for them. But what would you tell a parent that’s going through this process?
Shelley:
That’s a good question. I think I would really encourage them to appreciate and realize their own lens, meaning if their child is neurodivergent, and they’re neurotypical to understand that and appreciate their differences and appreciate the similarities.
I really think that if you have a child with a certain disability or challenge to find that self-advocate community that is similar to your child, they are out there I guarantee. So I would, you know, really emphasize Yes, the professional team that guides you is so important from early on when your child is young, but make sure you’re including the self-advocate community into your team, and I guarantee they will be the most helpful.
I feel like you know, knowing that every child wants to be part of something. They want to have friends and they want to have joy and they want to have they want to see people like them. So it’s really important to us at Hirsch and to, you know, for thinking about how to build a more inclusive community, but really, really pairing those adults with autism or adults with disabilities, with our children, so they can see the future. You know, there’s all these opportunities that our kids can see at a very early age here at Hirsch when they are mentored by an adult self-advocate that they’re in relationships, and they’re in college, and they have jobs, and they’re, they’re happy. And I think that’s really important.
Vaish:
A couple of things that I have really taken from you. And I’ve already said this before, but they’re really sticking in my mind as pieces of advice. Not just for parents, but primarily for people that are for providers and for patients is that behavior is communication, and thinking of it as anything else is perhaps devaluing the child. And the second thing is that nobody’s an autism expert, right? I mean, no, no professional who’s neurotypical is an autism expert anyway. And the idea is to constantly be open, and understand that we will never know everything. And then we have to keep asking.
Shelley:
We’ve got to keep asking. Yes. And we’re only scratching the surface, I guess. Yes. All the things that we could do.
Vaish:
Yes. And thank you for being this example of this. You know, ego, less professional. I really like that. Is there anything else you want to share? How can parents reach you if they, you know, either they want to enroll their kid in fish Academy or they just want to reach you? Do tell us anything else about the school if something comes up?
Shelley:
I would I would love that. I think what I could help out with the most is to help parents reach the self-advocate community. So if someone is interested, that’s listening to this, that really wants to find a self-advocate mentor, and they’re just not sure where to start. Reach out to me and I will help you.
Vaish:
Okay, and how can they reach out to you, Shelly,
Shelley:
you can reach me through the website or Hirsch academy website, www.Hirschacademy.org. Or you can email me at s Carnes. ca r and s at jeem I’m sorry at Hirschacademy.org.
Vaish:
Okay, and which academies both h AI R sc h. academy.org. That’s us. Yes. Thank you so much, Shelley. This was really eye-opening. Thank you for taking the time to come here and talk.
Shelley:
Thank you. Thanks for having me. It’s been a lot of fun.
Vaish:
Function and nutrition and learning for kids were brought to you by a two-person team. I’m your host, Dr. Vaish and the music was composed and performed by Maitri Gosh, my daughter by look forward tremendously to meeting you again next week with a brand new podcast. That is next Friday and I’m hoping to be addressing vitamin C and immunity next week. Until then, bye.
