Jessica Fein: Welcome. I'm Jessica Fein, and this is the “I don't Know How You Do It" podcast, where we talk to people whose lives seem unimaginable from the outside and dive into how they're able to do things that look undoable. I'm so glad you're joining me on this journey. And I hope you enjoy the conversation. 

Welcome back to the show. My guest today is a former professional dancer, a special needs teacher, a medical mama, an advocate, and an author. And all of these roles have overlapped in ways she never expected. Joanne De Simone is the author of Fall and Recover, a memoir that captures how she used lessons of modern dance in her [00:01:00] journey through motherhood with two children with disabilities. When Joanne left the world of professional dance and pivoted to become a special needs educator, she had no idea that these two things, dancing and teaching, would together be the key to managing her own life when her first son was diagnosed with a rare life-limiting brain malformation, and then her second son was diagnosed with autism. 

In addition to teaching and parenting, Joanne is an advocate who with her son was instrumental in a legislative change that allows students with intellectual disabilities to participate in NCAA D3 intercollegiate sports.

Yet another example how fighting for what we know is right and fighting for our own children can make a difference in the lives of so many other people. It is my pleasure to introduce you to Joanne De Simone.[00:02:00] 

Welcome, Joanne. Nice to meet you. 

Joanne De Simone: It's so nice to meet you. I'm so happy to be here. 

Jessica Fein: Well, I'm so glad for you to be here and what an unusual story you have an unusual background and your background weaves in such an interesting way into your journey. And I can't wait to get into all of it. So why don't we start off by hearing a bit about your family?

Joanne De Simone: Sure, so I am married, just celebrated 31 years married to my husband, John, and we have two boys, Benjamin and Sebastian. Benjamin is 25, and he has brain malformation that's rare called Lissencephaly, so he has cerebral palsy and. Another very rare condition, it's a rare epilepsy condition called Lennox-Gastaut.

And my younger son Benjamin's 21 and he's on the autism spectrum. [00:03:00] And they're both awesome human beings. 

Jessica Fein: Wow, 25 and 21. It's interesting because we have spoken to all kinds of complicated families, if you will, on the show. And I speak of what I know, having my own complicated family. But it's interesting because so many of the people we speak to, their kids are younger and you have been on this road for a long time, 25 and 21. So let's go back in time and think about those initial diagnoses. And I'm curious how the second diagnosis that of autism was different for you than the first of Lissencephaly. And I imagine, you know, the first is like, Oh my God, my dreams, everything I imagined my life is going to be is not.

That has its own set of complications. Then your second is, how can I deal with anything more than I've [00:04:00] already dealt with, right? So that's what I imagine, but tell me, diagnosis one, diagnosis two, how did those two things play together? 

Joanne De Simone: So Benjamin was quite young when we got his diagnosis, like four to five months old.

And it was immediately devastating because at that time, I think the average lifespan for kids with Lissencephaly was two years. So, you know, it was crash, you know, immediately, like everything hurt, you know, you can't think about the future at all. Everything is just wiped away. And I didn't imagine having an experience that would sink me lower than I had been in that moment, you know.

With Sebastian, it was odd because he was developing perfectly fine. Up until he was about a year old. And then, you know, we noticed that the speech wasn't developing. And I was a special educator. So my flares were up, but I [00:05:00] was also very much wanting to just deny, come up with excuses, you know, no, no, no.

And I would listen, you know, people would say, Oh, but look, he does this, he does that. And I wanted to believe all of that because the idea of having two kids whose futures. I could not imagine or that were, it was so unstable. It was too much for me to sort of process. And my husband and I, I think really went back and forth.

Cause I think he just knew in his heart that there was something going on and he never sort of dropped that. He didn't let denial sink in, but I definitely had those moments. And our pediatrician at the time, you know, was like, Oh, don't worry yet. That the language isn't coming in, you know, his brother's not talking.

It's typical boys tend to be later. So it was feeding into my desire to not go there, you know? And then I think when Benjamin started kindergarten, we had a moment where we were driving and John and I were having this [00:06:00] debate once again about Sebastian's development. And John just like called out “Sebastian, Sebastian, Sebastian.”

And Sebastian never turned around to look at him. And my husband was like, that's not normal. Like that was it. Like the glass broke and I was like, Oh, but again, I was like, no, no, no. It's just speech. It's just a speech thing. We can, we can deal with this, you know, but I had a niece who was on the spectrum and lots of things that Sebastian was doing was very reminiscent of what I had seen in her when she was little.

So in my heart, I knew But I just wasn't ready to, like, accept that full challenge, 

Jessica Fein: So what got you ready? What made you finally say, okay, we need to figure this out? 

Joanne De Simone: Yeah, well, even in denial, I also go into action, right? So as a teacher, I'm like the problem solver, I'm the doer, let's fix, you know, whatever it is, right?

So I made plans in how to just address what I [00:07:00] saw in front of me. So I, I kept things like, okay. What do we have to work on? We have to work on pointing. What are we going to do about that? And you know, I set up a goal and many skills to get to that goal. So I just went into clinician mode. 

Jessica Fein: Clinician mode because you were comfortable there.

Joanne De Simone: Yes. Yeah. Extremely. And it was easy to see growth and progress being in that mode. And then, yeah, it didn't quite hurt so much. So I was in that mode for a while. We didn't get a formal diagnosis until he was two and a half. And at that stage, you know, he was already in school and therapy, whatever. We were like, okay, we just need to know how to move forward.

Jessica Fein: You wrote that you thought fair was a four letter word. So tell us about that because I can imagine there was a lot of this isn't fair. 

Joanne De Simone: Yeah, there's a lot of things in my life where I sort of apply that idea. In a book, I think I applied it to my mother. My mother was [00:08:00] widowed in her 40s. It wasn't fair, right?

In special education, there's also a lot of talk about what's fair, what isn't fair, and, you know, accommodating a child for their disability has nothing to do with being unfair to everybody else. It's what everybody needs to get up to the same plane. And to have access. So, yeah. 

Jessica Fein: Yeah, that four letter word.

Well, you are so honest in your writing. In fact, the very first sentence in your book says that ableism negatively impacted your experience as a mother. And I thought, okay, she is getting right into it. So, tell us about your feelings of ableism. 

Joanne De Simone: Yeah, I think it's so clear on this side of it, right, to see the culture that we live in tells us this is a bad thing to have a disabled child.

Bad. You should feel [00:09:00] bad, you should always feel bad, and you should know that everyone outside of your safety bubble is going to be looking at your family like you're aliens that don't belong here, right? The thing about my journey and why I put that up front in the book, is that it wasn't really something I thought about when I had my kids.

Jessica Fein: You were also a teacher. So you were working with populations of people who were different. 

Joanne De Simone: Exactly. And I wasn't viewing my students as having less value than anyone else. You know, I love working with kids. I love working with children who have disabilities. Everyone's got their own abilities and strengths.

And that's great. But when you're a teacher inside the classroom, you don't really, I mean, I didn't, I didn't think about what the parents were dealing with emotionally. I wasn't thinking about their day to day [00:10:00] and how difficult dealing with all of the agencies that they have to deal with. I was not aware of that.

It was the first thing I was aware of when I had my son and sat down at my first meeting. It was like, Oh, I didn't get it. I didn't get it. So I wanted to write a book. Yes, that was honest for the ableist thoughts I was having because I felt like I think it's important to validate your feelings, no matter how dark they are, because we all go there.

You don't even have to have a kid with a disability to have a dark thought about your kid. So I normalize it. It's, it's okay. You know, it's okay. And I had written an essay while I had this manuscript sort of going, I wrote an essay called bury my son before I die for brainchild magazine. And in it, I talk about having a son who might die doing absolutely everything I could to keep them alive.

And being terrified about what happens to him if [00:11:00] I die first. And the response was incredible. I heard from so many parents and one in particular, this woman said, For the first time, I don't feel like a monster for having all of these same exact thoughts. And it just shattered me because I thought, Oh my God, this is a woman who's doing everything she can to take care of a really medically complex child.

And she's shaming herself for having what I would consider really normal response and feelings to a difficult situation. And so it was really important to be completely honest and to let other parents know you aren't alone in all of these thoughts. You know, and I didn't want to write a book saying, Oh, I knew all along that this was not the way I should be thinking or no, it's okay to have the process and get there when you get there, [00:12:00] we all have our own journeys and there really shouldn't be shame in it.

Jessica Fein: And also, it's kind of boring to read about somebody who's perfect from the outset. 

Yeah, but I'm curious about two things. First of all, I noted that part of your book as another area where you were so honest, where you do talk about these feelings of who dies first, right? And how, of course, we all know it's every parent's worst nightmare to outlive their child.

And yet, it can also be a horrible nightmare to think about what happens to my child after I'm gone when your child does have such intense needs. And you addressed that really openly. 

Joanne De Simone: Yes, I tried. Thank you.

Jessica Fein: Well, you know, it's interesting because you said a moment ago that as a special ed teacher had thought about the student but hadn't really thought about what the family is going through.

And so I'd like to know, once you yourself became that parent, how did that change the [00:13:00] way you educated? 

Joanne De Simone: Oh yeah. I took some time off when Ben was born. I took a couple of years off because his health was complicated. He had uncontrolled seizures for a while and it took a while to get that under control.

So I took some time off and when I went back to work, I was not in the classroom. I started working in early intervention. So yeah, then I was able to just get into the homes, work directly with the students. and work directly with the parents. And when you have someone coming in your home, they see everything, right?

There's no one's hiding anything. So it was a much more fulfilling job role for me and, you know, connecting with the families and helping them navigate the education system, helping them, you know, just talk to another parent. Who knew what they were going through was so validating. I think for both of us, honestly, all the families that I [00:14:00] work with.

So I felt like I definitely approach things differently. Even later, anytime I had an experience with my kids, like my son, Sebastian, he had a teacher and it was just this one year that like every day, every day she'd write in the book, something he was doing wrong, something he was doing wrong. And her frustration was building.

And then yeah. My frustration was building and I, I let her, you know, interfere with my relationship with my son. Like I was not liking him for a stretch of time. And I thought, wow, you know, I have to approach parents differently in these scenarios. It's difficult when you're dealing with behaviors, but I completely flipped how I approached parents.

Like parents are not the complaint center. That's not their role. So I made a real effort to say like, okay. I'm going to just give you a running record of what happened today. Like here's what happened in the moment. This is what happened before, during, after this is how I addressed it. It worked great. We found a [00:15:00] solution or it didn't work.

Have you seen these behaviors at home? And if so, what strategies have you used that work? So bringing the parents in as a partner and not me, like pointing my finger at them. And I also always thought. Before I even contacted them, like, what's my plan for tomorrow if this happens again? This way I could tell them, like, here's what my plan is, right?

So, sending the message that I'm not giving up on your kid. This is not the brick wall you're facing today because I never want a parent to feel like I'm their brick wall. 

Jessica Fein: They are so lucky to have somebody who gets it at that level. I'm struck because for a lot of people, and I know for me, working outside the home can be an absolutely incredible break, a way to get out of the intensity of what's happening on the home front.

But, your job was dealing with [00:16:00] the same kinds of issues that you were dealing with on the home front. Like, it just doesn't feel to me like a break. It feels like more piling on. Like, how did you separate what was happening at home and what was happening on, at work? I mean, I can understand that they were integrated in such a beautiful way, but sometimes weren't you just like, Oh, this is a lot.

Joanne De Simone: I don't remember feeling that way, only because I feel like I was so grateful for all of the teachers and therapists who came into my home, who I developed such great relationships with, and who I felt were really a vital part of my journey and helping me just function from day to day and get to some kind of acceptance on any level on any given day, right?

I say acceptance is fluid, right? It's not just a place you go to. And I honestly felt like working with other families and helping them in their journeys fed me. [00:17:00] So it didn't feel overwhelming. It, it lifted me. 

Jessica Fein: I know that another thing that really lifted you and that you said was a lifeline was finding other families through the support groups.

So I'd love to hear about that. And I'm also curious, what other lifelines you found? 

Joanne De Simone: Right, so Ben was born in 1999. We didn't even have a computer. There's no internet in my house, right? Yeah. Like, our doctors were like, we don't know what this is. 

Jessica Fein: There was no Dr. Google. 

Joanne De Simone: No, not at all.

So I had a friend who worked in computers and we said to her, can you look this up? And she found like, One thing, they printed off this page and it was a website for ListenSappily support group. And it was really just an email support group, actually. So we bought a computer, got on the internet, joined this group.

And yeah, it was amazing, you know, to find families [00:18:00] across the world who were in our very same situation. And many of them were ahead of us too, right? So it was just, it was incredible. I mean, I, I don't know what we would have done if we hadn't found that because there were so many situations we had where we had to make really complex medical decisions.

Things about what medications, what surgeries, what doctors do you go to? Like what testing do we need? How did this work for you guys? Without having people who were really on the front line who had lived it, even the doctors that we went to who knew about it. It's not like they saw a ton of patients that had this condition.

Now there's really a much larger grouping of what's considered these neuronal migration disorders. So in Lissencephaly, the brain cells start from the center of the brain and migrate out to the cortex, the outer layer. And what happens in Lissencephaly is that these cells don't migrate to the right places.

So the [00:19:00] convolutions don't come. form. So there are a lot of related disorders as well. So they tend to get grouped now and I don't know what the numbers are, what they mean, but still listed as a rare disorder. It's like, even if I looked up today, Lissencephaly, it says that the average lifespan is 10, but I know that there are kids who are 40, you know, so it just depends on how severe the medical issues are.

Jessica Fein: Well, I was wondering about that because you mentioned at the beginning that at least at that time it was about a two year average span. And I wondered what it was like to be part of a group where everybody's really come together over this shared circumstance that is so unusual. And presumably many of the people you met were losing their children.

And then you're part of this community and here your child then becomes four, six, eight. What was that like for you? 

Joanne De Simone: You know, even to this day, it's constant. [00:20:00] There's always a family listing that their child has passed, and that is never not devastating. It's devastating. And I think, you know, you come to expect, like, okay, this could happen.

And yeah, the older Ben got, you know, the less I sort of had that lingering over me in the same sort of way. It's there, but it's a different shadow. It's a different shade, you know. Some kids just don't make it past two. The very beginning is difficult. And then puberty tends to be hard because the hormones kick in.

Yes. And the seizures are hard to control sometimes when puberty kicks in. And then there's all these kids that are, way older, 30s and 40s. And that sort of blows my mind, you know, because sometimes you look at these adults and say like, okay, well, they look pretty mobile. So I can understand that. And then there are others that are more like Ben who have, you know, no independent mobility.

And it's not something that I feel like I have to make sense out of. I saw one parent wrote something the other day, [00:21:00] like, oh, it's all the love and attention. I'm like, The amount of love and attention you give to your child in this scenario in my mind has nothing to do with how long they live. I get nervous when I see parents, you know, lean on that because I feel bad for parents who've lost their kids, you know, to hear that.

I'm like, no, that's going to make them feel terrible. 

Jessica Fein: Other than the support group, what else have you turned to over lo these many years? 

Joanne De Simone: Lo, these many years. One, I would say real life communities were definitely my next lifeline. Meeting families who were in different situations, but had kids.

So, you know, the parents I met at Benjamin's school when he was in preschool, we're still friends and building that foundation of support was so, so important. And then, honestly, for me, even though it was nothing I thought I would do, right, I never thought I would write a book, but sitting down to write the book, And thinking about my entire life and [00:22:00] realizing how my past as a dancer connected to special education and connected to my kids, that really ended up being the most healing thing for me because I was able to then really flip the script that was in my head and how I approached conflict.

Jessica Fein: In fact, each chapter in your book mirrors a dance lesson with the realities of parenting children with disabilities, which was such an interesting approach and you drew such powerful parallels between the two. Give us an example of one of those lessons that you learned from dance and how that applied to your situation as a parent.

Joanne De Simone: So the example that always comes to my brain first, when Ben was receiving early intervention services, I had gotten, uh, counseling as part of it. And this social worker would come over every day and say, Joanne, life is a one day at a time event. [00:23:00] Because all I could think about was the future. I was a planner and I was just like, okay, what is this going to look like?

Right? So I couldn't really absorb what she was telling me, especially when there were days that I did not want to be in that moment, right? Ben's having a seizure. I can't stop. I don't want to be here. Okay. But when I started writing and delving more and more into dance, there was this one lesson that my teacher used to talk about.

He would say, live in the movement. And he would stand in front of the class and he would just glide his hands over the space in front of him. And he'd say, as if you're touching the surface of water, make something tangible. And I started thinking about, you know, what did that mean? Well, you know, he was trying to slow us down and appreciate the moment that we were in, not think about the movement after that and the one after that, because if your brain is there, you're not fully attending to the movement you're [00:24:00] performing in that moment.

Right? Like wishing everything all away, right? So it was like a big aha moment. That's a simple one that always comes to my mind. 

Jessica Fein: You talk a lot about your performing of Jose Limon's There is a Time. So first of all, bring everybody up to speed on There is a Time for people who aren't familiar with that particular passage.

Joanne De Simone: Sure. So there is a time is based on Ecclesiastes three To Everything There Is a Season in that Psalm. They're talking about opposites, a time to be born and a time to die, that kind of thing. So this experience I had in college with this dance was life changing. After I did that, I was like, I have to dance Limon.

I have to study this technique. I have to work with this company. I was so driven. It just, spoke to me in every level. And when I was writing the book and thinking about this experience I had with this mom writing to me about feeling like a [00:25:00] monster, I started to put this all together. Like, Oh, not only do I have to be brutally honest, but I have to talk about the conflicts that I'm experiencing.

So then I started to think, okay, the whole book is conflicts. And then it was like, Oh, well, dichotomies and parenting dichotomies in the psalm, that has to be the structure of the book. And so I sort of looked at each part of the psalm and came up with my own idea of a dichotomy that fit with that part of the psalm and then a dance lesson that could address it.

And through the book, it's really a journey of rediscovering dance as well. So in the beginning few chapters, I set dance as a completely separate part. because I wasn't aware that this connection could be made. And then in the next section, I'm talk more about dance in an integrated way, but I'm not really using the lessons in an effective manner.

And then in the last section of the book, I'm very consciously using the dance lessons to [00:26:00] manage the conflicts. 

Jessica Fein: You went from being a dancer to being a special educator. I'm wondering, did you ever use dance in education? 

Joanne De Simone: I always saw being a teacher as like being on stage, right? 

Jessica Fein: Yeah, totally. 

Joanne De Simone: Yeah, I mean, I started teaching gymnastics when I was 14.

So I was working with kids for a really long time. And the whole reason why I even went into special education was because I had a lot of stuff to do. in my gymnastics classes, whose parents would bring them in and say, you know, they've ADHD and the teachers are telling us to get them into some kind of movement class.

. 

Jessica Fein: Funny. For us, it was always karate

Joanne De Simone: Yes, that's very, very popular. So then my niece was diagnosed with autism and my boss and I, we created a class just for students who were on the spectrum for, I think they were like three year olds. We did a preschool class and invited the families to come in [00:27:00] and, and work with us together.

And so I was so interested now when working with kids that have different types of different disabilities, I felt like. I was getting somewhere in the gym with these kids, and I just wanted to understand it better and know what I was doing instead of just winging it, you know? So to me, it was a very natural progression.

Jessica Fein: So you went from dancer, special educator, intense parenting on the precipice, and you also became a And one of the things that you did was you worked to change legislation to allow students with intellectual disabilities to participate in NCAA D3 sports. First of all, what is NCAA D3 sports? Sorry for my ignorance.

And tell us about that. 

Joanne De Simone: So on the college level, sports are divided into Division 1, Division 2, and Division 3. Okay. So my son Sebastian, in an effort to make friends starting [00:28:00] in middle school, he decided he was going to do sports and he chose running, you know, he wasn't a runner. So we really just followed his lead and supported him and he continued through high school, made varsity by his senior year.

And being with these group of kids that were going off to college and some aspiring to be collegiate athletes, Sebastian wanted to follow suit. So we started researching early on in his high school years, okay, what kind of programs could he go to? Because we knew he wouldn't necessarily be a degree seeking student, but fortunately More and more colleges are developing inclusive programs for students with intellectual disabilities.

But, many of them I called said, Oh, no, no, no, he won't be able to compete for us because he's not going to earn a degree. And as an advocate, I don't take no for the final answer. No, I feel it's very important. We [00:29:00] know in advocacy, right, you have to educate yourself. 

Because people get used to what they've been told and they don't do their research and they don't realize that there's another answer.

And that's what I think a lot of schools, that was their situation. They didn't realize that it was a possibility, right? So, um, We were fortunate and found a college who was willing to partner with us, and I just gave them all the research that I had done. I also hired a consultant who specialized in eligibility, and he gave me a lot of really good ideas about how we could basically work to get a yes.

And I fed that to the college as well. And they agreed to go ahead and contact the NCAA and work to get a waiver. I knew there were waivers in existence, but no one was really applying them to students in Sebastian's situation, so they were willing to do it. [00:30:00] And the NCAA said yes, and then they said, you know what, now this is the precedent.

So all the students at your college can use it without asking for a waiver. And then they said, you know what, everyone in the country in this situation, children who can compete and are in one of these inclusive programs and in a Division III school will be able to do it. 

Jessica Fein: Applause to you, and I gotta say, it takes one parent, one mama on a mission to make change.

Do both of your kids still live with you now? 

Joanne De Simone: Yes. I mean, Sebastian goes away to school, so he's out of state, but yeah, they live here. Benjamin was graduating right when COVID hit. So he lost his last few months of school and, you know, all the adult day programs were shut down and they've opened, but they're still understaffed and there really aren't a ton of programs that [00:31:00] specialize in kids with high medical needs.

You know, we tried to have him go to a program like two days a week last summer, but on day eight, they called us and said, Oh, you know, he's crying and yeah, he was hurting. Something was hurting him. And that happens. I get it. I mean, Ben broke his femur in school once, you know, like things happen, but they had no clue what the problem was.

And in my mind, I was like, if you don't have the ability to observe what's going on to him while he's under your care, this is not a safe space. 

Jessica Fein: You've been at this for such a long time, if somebody's listening to this show or reading your book and they're saying even maybe they have one child who has a condition, a diagnosis that makes them feel scared, overwhelmed, what are three pieces of advice you'd give to somebody who came to you and said, I don't think I can do it?

Joanne De Simone: My brain is filled. But one, I would say absolutely find community. You have to find [00:32:00] other people who can validate your experience and who know that they're not there to try to solve it, but to share in that experience with you. Two, as hard as it is, and I know It might not sound like I'm the example of it, but it is good to try and fill your time with something that defines you other than just the mama, right?

And three, give yourself time and space and grace to go through the journey and to do something that just makes you happy on a regular basis. 

Jessica Fein: I think that's great advice. That one, that last one is great advice for anybody, any age, any circumstance. So thank you so much for writing this book Fall and Recovery for sharing your story with us today.

It's been such a pleasure speaking with you. 

Joanne De Simone: Oh, the pleasure has been all mine. Thank you so much. 

Jessica Fein: Here are my takeaways from the conversation with [00:33:00] Joanne. Number one, find your people. Don't try to go it alone. Connect with those who get it, who can validate your journey, and who won't try to fix it. There is such strength in community.

Number two, don't forget that you are more than a caregiver. Let something else define you too, whether that's hobbies, passions, or independent relationships. 

Number three, fair is a four letter word. Fairness has nothing to do with this journey. Ditch the idea that life is fair and focus instead on what you and your family need.

Number four, feel it all. Give yourself permission to ride the emotional waves from fear to joy to anger. Each feeling has its place. Honor it. 

Number five, advocate relentlessly. Don't take no for a final answer when it comes to your child's needs. Educate yourself, seek allies, and advocate with persistence. Your dedication can change not only your child's life, but may also pave the way for others facing similar battles. 

Number [00:34:00] six, practice living in the present. This one is not my forte. But I am still working on it. Avoid getting lost in fears of the future by practicing presence. Embrace the beauty in living in the moment. Just picture Joanne doing that dance. 

And number seven, share honestly. Nobody learns anything. from someone who had it all figured out right from the start. 

Thank you so much for listening to this episode. I'm so glad that you are here with me as we speak to all of these people who are faced every single day with people saying to them, I don't know how you do it.

To stay up to date, follow me on my new sub stack, which is called Fein by me, F E I N by me and visit me at jessicafeinstories. com. Have a great day. Talk to you next time.