S11 E7 The Infinity Rainbow Club Series: Jen Malia discusses the importance of inclusion

11:48AM Oct 26, 2023

Speakers:

Tim Villegas

Jen Malia

Keywords:

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autistic

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jen

Hi friends, I'm Tim Vegas from the Maryland Coalition for inclusive education. And you are listening to thinking inclusive, our podcast that brings you conversations about inclusive education and what inclusion looks like in the real world.

An autistic mom of three autistic kids. Jen Malea, is the author of the children's chapter book series, the Infinity rainbow club, and the picture book, two sticky sensory issues with autism. She is professor of English and Creative Writing coordinator at Norfolk State University and currently is pursuing a Master of Fine Arts in writing for children and young adults at the Vermont College of Fine Arts. Originally from Pittsburgh, she currently lives with her husband and three kids in Virginia Beach. Although I hear she doesn't miss a Steelers or penguins game. For this episode, Jen Millia discusses her transition from academic writing to creative writing. She shares how her autism diagnosis influenced her writing and inspired her to create stories about neurodivergent characters. Jen also talks about the inspiration behind her infinity rainbow Club series, and the importance of portraying neurodiverse young kids in everyday situations. She emphasizes the need for acceptance and understanding of neuro divergence and hopes that her books will reach a wide audience including educators and parents. This week, I'd like to highlight one of the sponsors for our narrative podcast series inclusion stories, the Council of parents, attorneys and advocates. COPPA is on a mission to protect and enforce the legal and civil rights of students with disabilities and their families. With over 3100 members across all 50 states and territories, they're making a significant impact their community lead, and much of their work is driven by dedicated member volunteers. Too many students face unnecessary barriers to learning. But COPPA is here to fight for them. They advocate for equitable, inclusive education for students of all abilities. They provide training, mentorship, and expert advice, ensuring that families and advocates have the support they need visit cop a dot o RG to learn more. We've got a great conversation for you today that will help all of us to think inclusive, make sure to stick around for the mystery question. And for free time this week, I respond to a video of an educator that argues that inclusion is setting up kids for failure. Don't miss it. We'll be back after a quick break.

Jen, Melia Welcome to the thick inclusive podcast.

Thanks for having me.

So Jen, I know that you're a professor of English. But have you always been a writer?

Well, it's interesting because I started out I got my PhD and English and mostly published like literary criticism. So I was more on the critical side. But I had an interest in creative writing. It just took me a while to sort of get around to publishing in that area. So I was always a writer of some kind. It was just like the types of things that I published changed over time.

Okay, so you did more, more academic writing before you went into children's books or middle grade books. Is that right?

Yeah. And there was actually a step in between there where I did more journalism as well. So I started out with doing more academic work, and it was actually my autism diagnosis that switched me over to writing personal essays reported pieces related to neuro divergence and autism. And then an opportunity to write a children's book came up because of that, and that's how that sort of launched into additional opportunities to publish books.

What's the inspiration behind the new series? I know you wrote to sticky and this seems you seem to be laying out more awesome story arcs and particular ideas for these characters. So with

actually even with too sticky and the Infinity rainbow Club series, I have always thought that there needs to be more books that aren't so much about autism, but about kids that just happen to be autistic, going about their everyday life. And so that was really the inspiration was more just let me put together stories that are about just people who happen to be neurodivergent that do the same sorts of things that anybody might do. So you know, the kinds of story arcs they're, they're just kids have that have an after school club, if you get together. And that's, that's the kind of thing you might see and other kinds of series of books that aren't specifically about neurodivergent. For me, it's more like there's characters that I have in mind. But the stories themselves aren't all that different in terms of the kinds of adventures that the kids go on

the characters in the Infinity rainbow clip series. Are they inspired by kids? Or people, you know?

Yeah, so they're like composite characters. So the first book, Nick is also named after my son. And so it's very, it is very much inspired by him. And in fact that the whole family situation setup with the mom, the dad, that two sisters is very much inspired by my family of five. And I think that's just, it still has that composite character kind of thing. And I think that's true of any book that you write, that's fiction, really, even if it's based on another character, to use the freedom of fiction to explore other aspects. And a story, I think, is just something that I really enjoy doing. Because I have written nonfiction personal essays, where you stick exactly to the story. But I really like writing what I think of as like autobiographical fiction, or even just fiction that's highly, you know, has elements of autobiography, if you will, because a lot of scenes that are in Nick in the brick builder challenge the first book in the series, a lot of those scenes are actually taken from interactions between my kids and their play room, like with the plastic brick builders that they use. And that's that very much was inspired by the 1000s and 1000s of plastic bricks we have in our playroom. So they have their own sort of brick builder cities that that fell our playroom. And so it very much came from those kinds of family interactions.

For Nick, is there a particular story in the book that was like this is the essential issue or problem?

Yeah, and it's so hard to pick because the way one way that I thought about the book was I wanted to show Nick interacting with family, and then also interacting with classmates and teachers. So there's kind of like two different plot threads that go through there. And I would say, some of the key interactions are like one scene that I really, it was actually really hard for me to write but I thought was really important to the book, as I showed how Nick's anger that he experiences at dinnertime, and then he sort of storms off and goes up to his bedroom and hides in his closet, like his safe space, I showed that interaction that he has, it was very much based on a typical sort of situation that we've had, where that's happened, he does have a safe space in his closet. And I as the mom been the story, deal, and have gone to the closet and sort of knocked on it to check on him. And then so very much that interaction where the mom and story actually lays on the closet floor with with Nick the character that has happened, and it's that bonding between the mother and child in those moments and waiting for the right time. So like a typical situation would be that he might not be ready for me to come in yet. And so it's like checking on him and then coming back and seeing if giving a blanket or a pillow or that kind of thing. And then in the story, he gets it himself, but it's just like that safe space, and eventually coming out of the closet to go finish dinner. But for me, that was really important because I don't think despite wanting to show a positive in every way positive experiences that autistic kids have, I think it's also important to acknowledge the challenges and how there are certain ways that that they could be dealt with and that I have found as a mother, who is also autistic, the kinds of things that I need, I need space, but I also need someone to help me sometimes when I'm really having a moment. And that's how I've found with my kids that they need sometimes extra support in those areas. But learning where the line is give the give someone space but also you don't want them to hurt themselves in those moments where they might be having an autistic meltdown.

You were diagnosed with autism later in life. So how has that changed your view of yourself in the world and also your children?

Yes, I mean, it was life changing in a good way for me because it was before the diagnosis and I was diagnosed at 39 Before then I always knew that there was something different about me, but it just didn't know what it was. And so I went through life always feeling my social interactions weren't quite right. Or I always I blamed myself more for the things that I thought were inadequate in the way that I dealt with situations responded to got overstimulated at times, all these things that I didn't know, I didn't have a name for them. But once I got diagnosed, it made a lot of sense to me, it was like I could look back at every moment of my life, every sort of decade of my life where there were different challenges. And what's interesting that over the course of my life, the challenges have been very different with each decade of my life. But not knowing until I was 39, there was quite a bit to look back on. And I think it changed the way that I parent as well, because my daughter and I, we were my middle child, we were both diagnosed on the same day. And I wrote about that for the New York Times, that was a personal essay that had reported pieces, but it was very much about autistic mothers, autistic mothers of autistic children. And I think that changed my life. Of course, like I said, it's for the better, but also, being able to understand more about my kids, I feel that my autistic identity is very much a part of me. And I want them to feel that way too, that it's not a deficit, but just a different and that they hopefully will be proud being autistic and not not feel that it's stigmatized. And the way that unfortunately, we see a lot. Yeah,

um, you said that the you and your daughter were diagnosed on the same day? So the process of being diagnosed, at least for your daughter? Did that also did the did it start for you at the same time as well for your daughter? Like, how did that play out?

Yeah, so I, I was the one that sought out the diagnosis for my daughter and I so and it was challenging at this point that CDC recognizes that there's one in or one and 36 kids are now diagnosed with autism. That's what the research shows, and with, and there's about four times as many boys than girls who are diagnosed as well. And so it's actually because there's so many differences to one of the diagnostic criteria makes it hard and challenging for girls and women to be diagnosed. That's changing slowly over time. But I very much saw that in the in the way that I tried to seek out this diagnosis. It was my own research hundreds of hours of research to try to figure out what was going on with my daughter at the time, who was having very severe autistic meltdowns. And I didn't know that's what that was. But I knew that there was definitely something going on. There was more than just the language delay that she has. That's what everybody kept telling me that she has a language delay. And yes, she did have a language delay, but it wasn't just that. So you know, you go to the pediatrician, and you go to a developmental pediatrician. And I mean, even at that stage, I'm getting, you know, oh, like she's she because she was making good eye contact. And she didn't meet the stereotypical traits that they were looking for, to suggest the possibility of an autism diagnosis. But luckily, I'm still able to get referrals. And eventually, I saw it on a clinical psychologist who was more open to the different ways in which girls and women makes have expressed their autism differently. So yeah, the autism diagnosis for an adult is quite different than what you would have with a child. It's more like investigating what things used to be like for you as a child and, and how other other adults like your, you know, might might be able to respond to some things about you as well. It's just it's complicated, I think, to get diagnosed as an adult. But for me, it was important that, you know, I also knew that my daughter would be more likely to get her diagnosis if I were diagnosed because of the genetic component of it. So for me, it wasn't just, it was two, it was two prongs. For me, it was one I just needed to know that it. I just wanted to confirm what I always knew. But I just wanted to know, you know, to have that confirmation. And the second one was because I knew that it would make it easier for my kids to be diagnosed. My son got diagnosed the year after that, and then eventually my oldest got diagnosed as well. So

yeah, I want to ask you about the characters in the book and how you set up what school look like for them. The listeners of this podcast are very interested in inclusion and inclusive education, and what that kind of looks like for learners with disabilities. And I noticed that in the series, you set it up where the learners are in a classroom with two teachers, so a general education teacher, and a special education teacher And I'm wondering, was that an intentional choice, as opposed to how a lot of schools are set up where they have particular autism units that are set up to support learners? So I guess my first question is, was it? Was it intentional? And then what was your hope and how to frame the character's educational experience?

Yeah, so it was definitely intentional and very much based on the experiences that my own kids are having. What's interesting is when once I did get my daughter diagnosed my middle child, it took a while, actually, for me to realize that she I mean, she needed an IEP, but it wasn't, it wasn't that I, like I had a seek that out for her because it was a little bit different in terms of being able to identify her needs. She is autistic and dyslexic, and has dysgraphia, as well. And it's actually the dyslexia and the dysgraphia, and the reading and writing instruction that she needed special education for. But that whole process of getting her the IEP, and then also, the way that she's being instructed as a special education teacher doesn't pull her out of the room, but she's in the general ed classroom. And there might be a table where the special ed teacher is working with a couple of students. So it's very inclusive in that way that her her instruction, she has a lot of different accommodations, read alouds for assessments, she gets chunking so that our questions are broken up, and she doesn't have too many of them at a time, she gets extra time on tests. So she has a lot of these accommodations. And then on top of that, because she in fourth grade, she was still working on the reading instruction for a second grade level. So there was that gap with with that as well. So she would be working with a special education teacher for about 100 minutes a week, I think it was for reading and about 50 for writing. So all of that pullout time wasn't actually pulled out of the classroom, it was like pulled to a table. And so that's how I imagined the classroom and in these books as well, where the special education teacher would work with the students and pull them out for certain minutes. But they were also very much a part of that classroom, and that the regular teacher and the special education teacher would often be in a way, not necessarily team teaching at the same time, but they would there would be different, like the special ed students would also be learning from their regular teacher in the same subject areas, but might be pulled out aside work on a certain number of minutes on particular activities and that sort of thing.

Yeah, so the so the general, a special education teacher are really collaborating and working together. As opposed to, these are your kids. And these are my kids type of thing. Yeah.

And my son has a 504, which is a little bit different. His 504 has more combinations that are very different actually than my daughter's in a way because he doesn't need the chunking and the extra time. But what he actually needs is he gets overstimulated in the classroom, he needs like flexible seating, he needs the teacher to be close to him. So he needs that adult just supervision in a way that's just encouraging him to stay on task. He has trouble with unstructured times. And there's a lot of time like that, whether it's at gym class or recess, or even just when the teacher says, Okay, we have some time, we're going to independently read and things like that. So he just needs a little bit more of those accommodations that aren't necessarily special education, but that are that are put in place in a very legal document to give him the assistance that he needs in the classroom.

Right. Right. So the club that is in the book is is that patterned after something? Or is that just something that like, it would be great to have, you know, in real life?

If you ask that question, because it really was the ideal, you know, I really wish every class or every school I mean had a sensory gem because I have I've heard of them. I've seen them when I go on you know, I was doing the research for the book, you can find schools that do have these sensory gems, but they're so rare. And how what great would it be if kids not just neurodivergent kids but any kids that need they get overstimulated in the classroom or just or just need breaks brain breaks as my my school that my kids go to. They always call them brain breaks, whether they're whatever they're doing to just basically reset like to have a space like that. How wonderful would that be? So that part of it the idea of having a sensory gym in an elementary school that was very much the ideal situation. And also the club again, it was just an imaginary kind of, oh, wouldn't it be great if there were a club or stems were accepted and where people could just meet other like minded we think of there's so many books like series that have clubs, think about it. grew up with babysitter club books. And my kids love things like cat kid comic club, and all those kinds of just the kind of club series, I think are just really popular. And I just wanted there to be something like that for neurodivergent kids especially.

Yeah, yeah, um, well, I just want to keep putting it out into the universe, that schools absolutely should have a sensory room or a safe space and every school, so. And I also want to encourage you to because I actually know of school districts that it in fact, I just visited one in Maryland that has a particular room, it's called Student Support Center. In every school, every school in their district has a Student Support Center is open to everyone, not just students with learning difficulties, sensory needs, or anything like that. Anytime any student needs a little extra, that room is available. And it's staffed. It's staffed. It's not staffed by special education teachers. It's staffed by the counseling department. So how wonderful is that? If you could have every school in the country have a Student Support Center, to you know, support the social, emotional and sensory needs of kids, right? It's just amazing. What do you really hope for this series? And who is the perfect reader for this series?

I'll answer the perfect reader. First, I think neurodivergent kids are the the target audience. However, I really hope that teachers and parents and other kids that aren't neurodivergent will also want to learn more about there's one in five kids now, or at least one in five kids that are neurodivergent. So if you think about a classroom, a typical 25 student classroom, at least five of those kids are going to be neurodivergent. The idea that, you know, that being autistic or having ADHD or dyslexia, these things are so common that I think it's very important that everyone have a better understanding of not just understanding, but be accepting of other neurodivergent kids. And I think also that my goal was writing this series was, as I mentioned, at the beginning, I didn't want it to be so much a book that's, that's about neuro divergence as a book about kids who just happen to be neurodivergent. And I think that is a big part of the acceptance component, that if you realize that kids that might be autistic or have ADHD also do the same things that other kids might do participate in brick builder challenges, or the second book is about working on volunteering in a natural history museum and working on augmented reality, dinosaur exhibits. These are all things that we may not think about when we're talking about autism or ADHD. But these are the same thing with kids any kids would be interested in. And I think that finding that common ground, and making sure that that it goes beyond just being aware, but also accepting of neuro divergence,

and for educators who may be stocking their classroom libraries, how do you want educators to view this book as a resource as just something fun to have in the classroom? Like, anything that you want to share with educators?

Yeah, I hope it'll be something that they would, as I mentioned already, that kids, I think a lot of kids in classrooms are neurodivergent. So having that resource for them, specifically is important, but also other kids as well. And I tried to incorporate a lot of humor in the books. And I was actually a little surprised, but very happy when my publisher listed the different categories of my book, humor was one of them. And I was like, Wow, that's amazing. Because I mean, I don't really think of myself as a humorous writer. But I love that there's enough humor in it, that it was identified as one of the, one of the components of the books, because a lot of people don't really think about if you're writing a book, it can. Like I said before, these things I hope are fun for kids to read. It's not a book, like let me tell you about autism, or let me tell you about ADHD. It's a book that just happens to have autistic kids and neurodivergent kids and they're having lots of fun, and participating in challenges. And like that was really what I wanted to do to was a big goal of mine, like my kids have a lot of fun and we do everything that any other family might do. We're all neurodivergent in my family, all five of us, but we do the same things that other families do. And so I just wanted to show that and share that in the books.

So how many books in the series have been planned?

So there are three books that are under contract and I'm hoping there will be more but at the moment there's Nick and the Brookfield Our challenge is the first book that's coming out in September. Then in October violet and the Jurassic land exhibit Right, and then in the spring will be Connor and the taekwondo tournament.

Fantastic. Best of luck with the Infinity rainbow Club series. And I hope if you're an educator listening to this, make sure you're stocking with your libraries with this series, it's going to be a wonderful adventure for you and your students. Stay tuned for the mystery question right after the break.

So every interview, I pick a random questions like a mystery question, and we both answer is, Are you up for that? I don't know what it's going to be it so far. It hasn't been anything, you know, inappropriate or anything. So let's see. Oh, Harry. Okay. So what's the most annoying bill that you have to pay?

And it's interesting, my husband pays all the bills in our household. So as an autistic person, honestly, that's one of those weaknesses that I have just keeping track of bills. He goes out of town bills don't get paid separately. Yeah. Yeah, that's a hard one. But, you know, I don't know, because I don't even know the extent of all the bills. I mean, I think of all the immediate ones. Right, but Well, water bill.

Yeah. So the only thing that comes to mind for us is we have in Georgia, like, I'm originally from Southern California. And in Southern California, you did not really have to pay like a monthly exterminator bill. And when we moved to Georgia, everyone was like, you have to get one. Like there's so many bugs. And the termites you just eat like you have to get a termite bond. And like all this stuff, and I'm like that, it's just doesn't seem right. Well, I think we lasted one month without an exterminator. And we're like, nope. Like, you know, bugs are crawling in our house. You know, we got cockroaches, and we have ants, and we have mosquitoes and and then we're very thankful that we got the termite bond, because I think I've lived here for about 15 years. And I think the first or second year we lived in this house. I was in the bathroom. And there were termites, you know, boring under our hardwood floors. And I'm like, Oh my gosh, and so fortunately, the company came and took care of it, and it was all covered. But that is a very annoying bill to pay, because it's a lot of money. But you have to have it.

Because we have that too. And Virginia like we that was another like we have a termite person come in quarterly. And you know, all that. So I wholeheartedly agree with that. Having the termite person come in, that was not something when I lived in Pennsylvania that we did.

Right? Yeah, I guess it's the, I guess, I guess, Virginia considered the South? I don't know.

Yeah, especially because Virginia Beach is like a south as you can get really, really near the border of North Carolina.

Jen Malea, thank you so much for being on the inclusive podcast. Thank you so much for having me.

That chime means it's free time. So normally, I don't respond to these kinds of things. But a listener reached out to me directly on Instagram, and shared a video. Now I'm going to play the audio, and then respond via my preferred medium of choice, this podcast. And after this episode is published, I'm going to reach out to the video creator directly. And I gotta tell you, she's not exactly wrong here. But I think her conclusions are where we differ. Here's the clip

educators, I want to dive into this idea of inclusion not promoting diversity, like we thought it was going to, let's get into it. So when I was going to school to be a special ed teacher, a lot of the stuff we were hearing about, oh, it's really important for kids to be included. I'm like, I hear you. But here's what's actually happening. We are making children that do not do well. And big groups being forced into classrooms that they are uncomfortable in, and they are acting out here, once their classmates are going to remember that it's like establishing a core memory. And so this idea of diversity is not going to be oh wow look like we can coexist. It's quicker to remember that child and class that had special needs toward the classroom. This is what it's teaching kids about kids with special needs. And I'm not saying all I think about a 567 year old where this just becomes normalized. And think about what that's doing as they get older and when they start seeing people that are placed it would put a really bad taste in my mouth and that's what I was learning. When I was a kid is Like, Oh, this is what they do. And then on the flip side children that have emotional needs that are still very cognitively with it, like, how do you come back from that if I was in the workplace, and I had a mental breakdown in front of everybody, and I would be mortified, so to think about a kid that has these episodes, and you're putting them in a class that you know that they're gonna have episode, like, don't you think those kids didn't forget that like, they're going to remember that I remember when fifth grade when someone so blah, blah, blah, the kids are remembering all these things. And so we're setting up the kids that have the emotional needs up for failure, because

her video cut out at the end there. So I'm not sure what she was going to say after that. But here is where I think we agree. Usually, when people talk about inclusion, what they are really meaning is inclusive placement. Students with disabilities are included or present in a general education classroom. And I think that is what the creator of the video means here. But then she goes on to say, Here is what's actually happening. Kids are being forced into classrooms, where they are uncomfortable. And yep, I totally agree. As an educator who wants to see all learners authentically included, I don't want to force learners into a space where they are not welcomed, feel like they belong, or planned for. But you see, that's just the thing. We can't expect for learners with sensory communication, or emotional behavior support needs to simply be present in a general education classroom, with no thought of how we are making them feel welcomed, or planned for and call that inclusion. It's not inclusion. Inclusive Education means that every learner is a general education student is welcomed, feels like they belong and is planned for, and if they need something more or specifically designed for them, that is their special education. Fortunately, more and more schools are realizing this and moving toward inclusive practices, though is still hard for many, many learners to find school systems where they are authentically included. But it doesn't mean that inclusion isn't something we should strive for. And when we see a learner who is struggling, not to say that they don't belong, but how can we set up the environment to actually support them? Thanks to the listener who tagged me and for the creator of this video, I'd love to have a conversation about this and any other issue related to inclusive practices.

For more information about inclusive education or to learn how you can partner with MCIE on school transformation or professional learning opportunities, visit MCIE.org. Thanks again to the Council of parent attorneys and advocates for being one of our amazing sponsors. For inclusion stories. We could not have done this project without you love, think inclusive. Here are a few ways to let us know. Grade us on Spotify or leave us a review on Apple podcasts. Become a patron for extra stuff like these fine people. thank you to Aaron P Gerrity joiner a, Kathy B, Mark C, Gabi M Kathleen T and Paula W. We appreciate your continued support of thinking cluesive think inclusive is written, edited, designed, mixed and mastered by me to Vegas. Original Music by miles credit. Additional music from melody. Thank you for your time and attention and remember, inclusion always works.

Show that my family and I love to watch is Lego masters. That's something that you is prominent in your family.

Yes, definitely. And I would say that if you want to think of this book that I wrote is really a fictional version of like Junior Brookfield or masters. These kids are very much like participating in competitions like that.

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