Parenting Perspectives: Raising Children with Disabilities

podcast
Written By Pandemic Parenting

with Jennifer Neumeister & Nisha Gutierrez-Jaime

Parenting comes with joys and challenges. And for parents of children with disabilities, those joys and challenges look…. well, different. Whether your child is neurodivergent, has a chronic medical condition, or lives with another form of disability, you know that the journey with your child has additional twists and turns than that of other parents or caregivers. Many of those discrepancies became even more apparent throughout the COVID-19 pandemic. 

This episode is the first in a two-part series examining the intersection between parenting and disability. Dr. Amanda Zelechoski and our producer Carmen Vincent talk with Jennifer, a mother of an 8-year old and a 4-year-old who, in her words, happens to have nonverbal autism; and Nisha, a mother of twin 7-year-olds and a 3-year-old who is battling a complex congenital heart disease.

Included in this episode with parents of children with disabilities:

  • Deciding when to advocate and educate others as a parent with a child with a disability

  • Self-care tips for parents with a child with a disability

  • Coping with uncertainty during tests, diagnoses, and treatments

  • The challenges working parents face in caring for their child with a disability

Additional Resources for Families of Children with Disabilities

Children’s Books About Disability

Resources for Parents of Children with Disabilities

Bite-Sized Excerpts from This Episode

 

A Message to Parents Whose Child Just Got Diagnosed with a Disability

Deciding When to Advocate as a Parent with a Child Who Has a Disability

Self-Care Tips for Parents Who Have a Child with a Disability

Coping with Uncertainty as a Parent of a Child with a Disability

One Thing at a Time: Being a Working Mom with a Child with a Disability

Advocating in Big and Small Ways For Your Child with a Disability

 

Meet Our Guests

Jennifer Headshot.jpg

Jennifer Neumeister

Jennifer is a mother of an 8-year-old daughter and a 4-year-old son who happens to have nonverbal autism. In her daily life, she empowers her children to be their best selves in their own contexts, opens others’ minds by sharing her experiences as a parent with an autistic child, and finds joy in watching her children experience life unfold in front of them. 

Nisha Gutierrez-Jaime

Nisha is a mother to twin 7-year-old boys who were born premature at 27 weeks, and a 3-year-old daughter who is battling a complex congenital heart disease. She is also a veteran Los Angeles-based journalist and, most recently, published her first children’s book, Rainbows & Storms, in April 2021. Like many in the Covid-era, Nisha is striving hard to find balance between parenting, advocacy, career, and enjoying all the little moments in between.

Full Audio Transcript

[THEME MUSIC UNDER INTRO] 

Dr. Amanda Zelechoski: Can you say... “This is Dr. Amanda Zelechoski.” 

Child 1: Why do we have to? 

Dr. Amanda Zelechoski: Just try it! 

Child 1: I can't. 

Dr. Amanda Zelechoski: Deep breath 

Child 2: [Laughter] This is Dr. Amanda Zelechoski. 

Child 3: [Yelling] Lindsay Malloy! Ah! 

Dr. Lindsay Malloy: Wait, say Doctor Lindsay Malloy. 

Child 3: [Yelling] Dr. Lindsay Malloy! 

Dr. Lindsay Malloy: [Laughing] No, come back! 

Child 4: This is Dr. Lindsay Malloy. 

Child 2: Welcome to the [unintelligible] Parenting Podcast (laugher).  

Dr. Amanda Zelechoski: [Laughter]. 

Dr. Lindsay Malloy: One more time. 

Child 4: And then after that, can I have a candy? 

Dr. Lindsay Malloy: [Laughing] No. 

Child 4: Please, Mommy!  

Dr. Lindsay Malloy: Okay, ready? 

Child 4: The Pandemic Parenting Podcast! 

Dr. Lindsay Malloy: Excellent! 

[MUSIC INTERLUDE] 

Dr. Amanda Zelechoski: Welcome to the Pandemic Parenting Podcast. I'm Dr. Amanda Zelechoski. 

Dr. Lindsay Malloy: And I'm Dr. Lindsay Malloy. We are two psychologists, scholars, and moms, and together we co-founded Pandemic Parenting. 

Dr. Amanda Zelechoski: We're here to share science-based research and help all who care for kids navigate this challenging time together. 

[MUSIC INTERLUDE]  

Dr. Amanda Zelechoski: Please note that the information contained in this podcast and on the Pandemic Parenting website are intended for educational purposes only. Nothing discussed in this podcast or provided on the website are intended to be a substitute for professional psychological advice, diagnosis, or treatment. 

No doctor-patient relationship is formed between the hosts or guests of this podcast and listeners. If you need the qualified advice of a mental health or medical provider, we encourage you to seek one in your area. 

[MUSIC ENDS] 

Dr. Amanda Zelechoski: We all know that parenting comes with joys and challenges. And for parents of children with disabilities, those joys and challenges look different. Whether your child is neurodivergent, has a chronic health condition, or lives with another form of disability, you know that the journey with your child has additional twists and turns than that of other parents or caregivers. 

Many of those discrepancies became even more apparent throughout the COVID-19 pandemic. We've been wanting to do this episode for a long time since we launched pandemic parenting, both our nonprofit organization and this podcast. We've heard the exhaustion and desperation from parents and caregivers of children with varying disabilities and the screams into the abyss about their struggles and needs that have felt unmet or invisible to others before, during, and likely far beyond the pandemic. I'm one of those parents having a child with a long history of medical issues and vulnerabilities. That meant having to be extra careful and recognizing how much people often don't get how hard it was to navigate lockdowns and quarantines when your child is at increased risk for a host of really scary outcomes. But we wanted to do this conversation a bit differently than our other episodes. So this episode is the first in a two-part series examining the intersection between parenting and disability. Typically, we interview guest experts whose research or clinical practice focuses on the topic we're discussing, but today we turn to the critical expertise that is parents lived experiences.

You'll hear our producer, Carmen Vincent, and myself talk with two parents of children with disabilities. 

First, you'll meet Jennifer, a mother of an 8-year-old daughter and a 4-year-old son who, in her words, happens to have nonverbal autism. In the second half of this episode, we talk with Nisha, a mother of twin 7-year-old boys and a 3-year-old daughter who is battling a complex congenital heart disease. 

Later this month, we will release another episode where we speak with multiple parents with disabilities of their own. Before we dive into this discussion, I want to give a special thank you to our producer, Carmen Vincent, for her support in crafting these episodes. As someone who lives with multiple invisible disabilities, Carmen was instrumental in making sure we respectfully and compassionately amplified people's truths and authentic lived experiences. So now, onto the conversation. 

I've known Jennifer and Nisha for over 25 years, which is mathematically impossible since we're all still in our 20s. Just kidding. I'm so grateful, though, that they were each willing to share their honest perspectives as moms who, like all of us parents, are figuring it out as they go. Of course, these are the experiences of two parents with children who have different types of disabilities, and their circumstances and approaches to parenting may look different than yours, but we hope that their stories resonate with you. I know they did with me, and there were parts of each conversation that brought me to tears and made me feel seen and understood in some of the hardest parts of my parenting journey. 

Jennifer Neumeister: It's OK to understand that the life you think your child may have is completely changed. And the best thing that ever happened to me was a girl I was working with, her son was nonverbal autism, so I really kind of leaned on her a lot. She was like feel your feelings; it's OK to be upset, it's OK for your child to be upset. If they're at that age where they can understand that there’s something different, but they don't quite grasp it. But the big thing was, is that your child’s path is just going to look different, that's it. It's just gonna look different. It could be infinitely better than a life that you could have ever dreamed of. And then she sent me a list of famous people, you know, famous scientists, celebrities, whatever celebrities that were all diagnosed with autism. Oh, boy, did that make me feel a million times better because they were people I respected.

You know, when my son was first diagnosed by his pediatrician, he said, what's wrong? What are you doing? Because he could tell I wanted to cry, but I just was holding it together, and he goes, if you want to cry, cry. And he said it's okay to mourn the life you thought your child was going to have, but it doesn't necessarily mean it's going to be less of a life. It's just going to be different than you initially planned. And so for him just to validate that it's OK to feel what I feel. And I think just in general, as a parent, a lot of times we don't feel it's OK to feel a certain way because we need to be strong or we present something towards society. I mean, my little man is just the happiest go-lucky. I mean, he just doesn't meet somebody he doesn't like. I mean, it does take a while for him to warm up to somebody, but he doesn't immediately run into stranger danger. He's just like, oh, a new friend, well, let's get to know you, you know, type of a thing. 

And I feel like my husband and I have learned so much just from my son about appreciating the little things because we noticed that he gets so hyper-focused on something, and he's just in it, and he's there, and it's just like I would never have thought that this mop was this magical, but I love that he's so like– I got him up, you know, and then he's just happy as can be. And I feel like he's teaching us patience 'cause that's the one thing, my husband, anytime anybody like, what is your fault, and my husband and I both are like, patience. But I feel like that's why we have more patience, looking at things from a different perspective or a different point of view. Looking at things in ways I never would have. And he's nonverbal. Could you imagine if he was verbal, what we could learn? I mean, just that alone is amazing to me. But with autism, the umbrella is so huge. In the process of all of this and my son's diagnosis, we discovered my husband is autistic. We had no clue. I just thought he was super smart and liked to talk to himself and saw things in patterns. That's it. 

Carmen Vincent: Talking about your daughter, I'm really curious, how has she navigated growing up with her little brother. And how do you talk to her about autism? 

Jennifer Neumeister: We, in the beginning, we weren't sure what to explain to her and what she would be able to grasp. And the biggest thing I found is I listened to my son’s therapist, and they all said the same thing when she starts asking questions, that's the perfect time. Before that, just act like this is normal. It's just, you know, no big deal. She still was young enough at the time. She was, I think, 5 1/2 or six when he was diagnosed. So I mean, she was still very impressionable. She is very much my mini-me. She needs to be the center of attention a lot. So I knew there was going to be a balancing act I needed to do with her and eventually it did get to the point where she ended up having a breakdown. I walked in, and I said, what's going on? And she said you like brother more than me. And I'm like where did you get that?  Well, you spend more time with brother. You do more with brother. So that is when we use that opportunity to open the door and explain to her we have the same expectations for brother as we do for you. The difference though is that your brother needs extra help to achieve those things, and now she can spot my son about to melt down before we do now. She can see it, then shortly after that, she was diagnosed with dyslexia. So I felt like she embraced that, because she was already understanding that her brother didn't see things a little bit differently. And I have heard her numerous times telling school friends things like that, me and my brother are different, and that doesn't make us any less. And if we were all the same, life would just be boring. And I'm like, well, I'm parenting, check for me on that one. If she, you know, yes child, yes, you are correct. So we didn't necessarily change the way we parent. We just have to do it differently depending on the child. 

I needed to learn to get over how other people would perceive him. And that's been my biggest journey through all this. I am very much a– I don't care what other people think of myself – and that took a long time to get to that point because I was the complete opposite growing up. I needed everybody to like me. I needed, you know, I had to have all the friends and everything. But now, with my son, especially since he's getting so much older, his tics and things like that are a lot more noticeable, and the looks you get from other parents, that doesn't bother me. 

Whatever you don't understand, that's fine. That's OK. You don't understand. However, we did have an incident – and it's the only time I have ever had an issue out in public with my child – and we were on a road trip. We were driving to California, and he, like I said, he's very happy, a very outgoing kid, just laughing, giggling all the time, but he started to have a meltdown. And I realized he was having a meltdown because the truck stop we stopped at was so loud inside and I didn't grab his headphones out of the car. So I said, well, let's just check out real quick. Let me, let me check out real quick, and you know I'll get into the car. No big deal. Nobody in the store was even paying attention to him 'cause it was one of those huge, you know, giant truck stops whatever everyone did kind of whatever. No big deal. The lady checking me out was probably in her late 60s, and she said, “oh, is that your son?”. I said yeah. She said, when we were raising our children, we never allowed our children to act like that in public. I froze for a minute, and I was like, do I cause a scene? Because Amanda can attest, I can throw a scene if I need to. And finally, I said to the lady, I was like, I understand that. I understand what you're saying, but you also need to understand that my son is having a meltdown because he has an issue processing loud noises. He has auditory issues. And she said, “well still,” so we paid and left. 

Because the thing was, I felt like I didn't need to explain to her that he was autistic because it's none of her damn business. But at the same time, I felt it was my responsibility that she needed to educate herself instead of making a snap judgment. 'Cause you don't know. I hear a lot from other autistic parents that it's really hard to parent a child with autism outside of your home because, unlike something like Down Syndrome, it's not physically noticeable right off the bat. 

Dr. Amanda Zelechoski: Yeah, I just resonate with so much of what you said. It was reminding me of an incident too that I haven't thought about in years, you know, where similarly, a woman in a restaurant made several comments about how, you know, how loud my son was being. And finally, I just said like he just finished two years of speech therapy to even be able to do that, and so you have no idea what's going on for kids. And that, for me, that's a win that he was saying all those things in public. So, it's just making me wonder for you, and just you know your thoughts for other parents like, how do you choose these times to step up and advocate versus walk away? Like it can be a daily decision-making process of– 

Jennifer Neumeister: Oh, you have no idea. 

Dr. Amanda Zelechoski: Right? Right. And there's so much of this parenting journey, in general, that's just so exhausting. 

Jennifer Neumeister: Exactly. 

Dr. Amanda Zelechoski: But then parenting children with all of these different complexities to the way that we move through the world.

Jennifer Neumeister: So, I hear tons of horror stories about out and about in public, you know, a lot of parents who've chosen to keep their children home all the time, rather than deal with it. And just as long as I've been alive, at least for my life, I want all the experiences in the world. That's just me, and I want that for my children. So he was only 18 months when he was diagnosed, and– which is kind of rare, but also being a boy, they tend to look for it more. I have also been somebody who's been able to read people really well. For the most part, I can usually tell whether I'm wasting my breath. Most people don't say anything. We've been really blessed. You get a lot of side glances and things like that, and then you have people that– my husband always says it's really ballsy, if they're wrong, but a lot of people come up to my son and go, is he autistic? Because my son does display a lot of very typical if you've been around autistic kids, he does display the overexcitement, he yells, makes a lot of you know, “ahh.” They're happy noises, but they're very loud. Or if somebody is talking too loud next when he immediately puts his hands up next to his ears. You know, those kinds of things? 

Then I had a coworker who has an almost 6-year-old who's nonverbal autistic. So being able to rely on her or at least her journey. So her journey became more homeopathic. She found that certain diets and stuff kind of alleviated certain symptoms within him, and that became extremely difficult in the beginning of the pandemic when everyone was panic buying. And we experienced that a little bit because my son is a picky eater. They're actually working on it with him at school now to kind of— doing food therapy and stuff. Because his is a texture thing, like certain textures he doesn't like. But if he's, let's say only eating seven things, when the beginning of this pandemic hit, you couldn't get those seven things. You know, you couldn't get some of this stuff, and especially with him, he was on a gluten-free, dairy-free diet, and he couldn't get half that stuff. So he was eating the same meal over and over and over and over because it was the one thing he could get during the pandemic. It was the most frustrating thing to see during this entire pandemic was disability and how they weren't even thought of during this whole thing. Anybody. Kids to adults, it didn't matter. 

Dr. Amanda Zelechoski: Well, and especially when it's probably taken years to sort of figure out that right, perfect diet or strategies or therapies or things that we finally figured out what works. And now we don't have access to it. So I'm wondering what else did you find for you and your family was also a struggle in the pandemic?

Jennifer Neumeister: Well, so my son’s journey specifically was very interesting because he was diagnosed at 18 months. He got in-home therapies for speech therapy and motor skills. Then, at age three, he can start attending early childhood school out here. So he turned three and went to school for a week - then lockdown happened. He only had a week of the organized structure of what to expect in class and then they were expecting, or I should say that the education system, was expecting him to sit in front of a computer and listen to somebody he had only just met for three hours a day. We had to literally put him in a high chair, and lock him in with his favorite snacks to even get him to sit there. And his teacher at the time was a wonderful woman. She kind of got it. She just was like, we will meet at 8:00 o'clock, we'll do story time, and then we'll meet like one time a day. They would do like a science project, and she does it through, but it was always something flashy, and she'd always make it bright and exciting, and then they would have story time at the end of the day 'cause that was the routine at school. So she only required them to be on Zoom for, you know, 15 minutes 3 times a day. And even then, that was kind of pushing it for a little man, 'cause he's very, very active, very active. But she basically had emailed all the parents and said look, if your child regressed, if your child didn't learn anything, whatever, it's OK. My job is to get them back on track. That's my job, so don't you worry about it, don't you stress on it. We will make it happen. 

But I think, especially with the pandemic, when you have any child, I mean even my 8-year-old was like I cannot sit in front of the screen and try and learn right now, and this is it from a child who loves school. So I had left it up to her. I said, you know, when we go back to school, virtual or in person, she said, in person, she's like Mommy, I will wear the mask. I will wash my hands a million times a day if it means I can go in person. OK, that's what we'll do then. So the pandemic has not been easy. Having one child that’s neurotypical and one that's neurodivergent, and especially with him, he's a typical boy in a lot of respects, and it's like, oh, what's that? I'm going to put it in my mouth. I don't care that I just picked it up off the floor, you know, it's that kind of thing. Things that I didn't necessarily worry about other than oh, that's gross, dude, don't do that to oh my God, don't do that, you know. It was that drastic change within us, as parents having to learn how to deal with it, you know, but also trying not to freak out the kids 'cause we're like, hey don’t do that. So you know, it's kind of like, I can't, I can't. 

Carmen Vincent: Yeah, and I feel like one thing I've learned being part of the Pandemic Parenting team is, gosh, how much pressure there is on parents to make the exact right decision every time. All the time. 

Dr. Amanda Zelechoski: Every hour, every day, with zero guidance. Which is parenting anyway. 

And now in a pandemic, right? 

Jennifer Neumeister: Exactly. Yeah. 100%. 

Carmen Vincent: I wonder if having a child with a disability puts an extra critical eye on you. Yeah, could you talk about that?

Jennifer Neumeister: Yes, even not in a pandemic. In everyday society, you deal with, like I said, you've dealt with people who do the side eye glances but don't say anything. You have the people that say things under their breath. You have the people who say something and I had to reach a point where I needed to tell myself, they're just ignorant. And some people you can tell are ignorant by choice, and some just genuinely don't know. And those are the people that I tend to at least try to educate a little bit. I don't want to make them feel bad because I feel like the minute you make somebody feel bad for reacting a certain way or expressing something, they're not going to listen to your feedback. If you make them feel bad, so it's been frustrating. 

Carmen Vincent: Absolutely. And there's such a difficult dynamic of balance because there's this pushback in the disability community and in other communities that it's not our job to educate people on what it's like.

Jennifer Neumeister: That's true, and there are– 

Carmen Vincent: And yeah. 

Jennifer Neumeister: –there are a lot of parents in the disabled community that don't feel it is their job to educate people and I 100% respect it. It's not somebody else's job to educate you. But if you feel called like I do, sometimes I feel called, it's just casually, hey, you know? Again, don't come at it from a place of anger or hate, or offense. But calmness and just be like, hey, just so you know, just want to let you know, well, here's a heads up. But it's not my job 100% and I totally understand anybody that feels that way. That it is not their job to educate, but I also feel like, and again, me personally, I feel like there's so much misconception around disability. So much misinformation, so I feel like that's where my call-to-sometimes-educate-individuals comes from, so it– I think it's an individual choice. 

Dr. Amanda Zelechoski: Right. And I think it's also like you said, it's not people's responsibility. And even if and when you feel called to step into that role at times, I do think it's really important just as a general sort of self-care reminder for parents of the idea that, you know Doctor Christina Grange taught us a bit about in a previous episode around weathering and feeling weathered, and that it is OK on certain days to say yes I feel it's important for me to do this, but not today, I am exhausted. Or I have been fighting a battle with my child today. And you know what, not today. And that it is OK to intentionally step out of it. And it's– at times to take care of yourself. 

Jennifer Neumeister: It's– exactly. And it's so funny because when I became a parent, the first thing my mom said was you're going to learn this phrase very, very well. It's called “pick and choose your battles.” And we just had this issue the other day. My son is in a phase where he must pull everything out of everywhere, and then he’s going to make piles and organize them himself–, but it's throughout the entire kitchen wrapping through, you know, the living room and the dining room, and I just kind of went you're happy, I don't care. Like it just was like you're happy, this is fine, you’re content, and you're loving life. We can't step on the floor anywhere, but you are happy, you know what? I just, I don't care. Choose the battle. 

Dr. Amanda Zelechoski: That's right. Which is the lesson I, too, take away from this pandemic, that they're just, every given day in a particular hour it was– right? What is the next right thing for me to do right now? And these other things can wait. 

[MUSIC INTERLUDE]

Jennifer Neumeister: The second half of the pandemic to me has really been more about OK, now how do we take care of your mental health? Because if you aren't healthy, then you can't help your children. So it became that balancing act at that point. So my husband and I started doing this thing where every three months, one of us would have a night at a hotel room away from kids and the other one had the kids for the night. Just to do whatever it was, my husband binge-watched Netflix and liked true crime documentaries and just laid in the hotel room just like ah, vegging out. 

Dr. Amanda Zelechoski: Yeah. Can you talk about that? Like the importance of respite, especially for parents of kids with disabilities? Because we talked so much in many of our Pandemic Parenting conversations about just parent guilt, mom guilt, and all of those things that exist anyway in parenting. But, now layer on top for a parent of a child with a disability, talk about the importance of respite. 

Jennifer Neumeister: So especially when you're newly diagnosed, you really, at least for me and my husband, we really went into survival mode. I went through the bad place because I'm the type of person –that is just the way I am wired– I always go to the worst possible scenario first and work my way back. And I find working my way back calms me down, gives me a better perspective, and it's helped me process things. But, you know, you constantly hear people say super mom, boss mom, you know, all these catchy Instagram hashtags, you know, and– 

Dr. Amanda Zelechoski: The “I don't know how you do it all,” right? 

Jennifer Neumeister: Yes, yeah, that's my favorite. I get that a lot from my single girlfriends. Those are the fun ones. But the thing is, is that– especially when we look at social media, when people are basing it on how successful you are as a parent, on social media. Yeah, that's when I get a lot of those, especially during the pandemic. I don't know how many girlfriends of mine were like, “I don't know how you're doing this with kids.” And my response was, “I don't have a choice.” You just make it work, however, that is, and it's going to look different for everyone. But the big thing I was learning was I was not happy, especially during the pandemic, because I felt like I was failing as a parent. I don't know what else I could have done, but I just felt like it because Joe Schmoe, my friend over here on Facebook, just made breakfast, lunch, and dinner in the shapes of caterpillars and dogs and hearts, and they also did their own science project and the craft project and did school and their child is getting straight A's, and they're doing this, and there's this. And you're like, I kept him alive like, that was the running joke during the pandemic with a bunch of my parent friends. We all were like, were they alive today? Cool. Did they get in a shower? Double bonus, you get an extra cookie today. 

I think we all had to, as parents, redefine what was considered successful, especially during a pandemic. So it became not only just me and my husband doing our little hotel room just for a night, but like my husband will listen to a podcast now when the kids go to bed, he for about 1/2 hour listens to a podcast and goes to bed. I'm a little different because it takes me a long time to unwind. And during the day, I get worked up by all these different little things stacking up. And even though they're not bothering me, I know I'm going to sit for at least an hour after the kids go to bed thinking about all of these things 'cause that's just how I'm wired. So, how do I turn that into self-care? Well, I just started taking baths. Literally, I'm like, well, at least I'm relaxing thinking about all these things. I'm in a nice bath, and I started thinking about those things less. I stopped overanalyzing. I would acknowledge what happened for the day, but like man, I probably could have handled that better. Cool, now move on. And then it became OK, now I'm reading, and now I'm doing this. And I think the biggest thing is not just making sure a lot of us are taking the time out for ourselves, but we also need to readily accept and understand that we need to give ourselves grace and permission to mess up and not get it right. And we need to understand that all of our journeys are going to be different and so being kind to ourselves is a huge self-care act that a lot of people don't view as self-care. We’re taking on buckets of water and trying to stop the sinking ship and not understanding that myself and my husband also need to take care of ourselves. We felt selfish, thinking, well, “you're the adults. You understand what's going on around you. Why do you need a break?” Your children don't understand this. They're having a hard time wrapping their mind around it. They don't need a break. I think the best way to describe it is, during the pandemic, I really needed to accept that I had emotions. My emotions were valid. The way I handled things may not have been best in certain scenarios, but you didn't know until you did it. You know what I mean? It was kind of that trial and error, but I was beating myself up over the error part. Thinking in my mind, I had to be the perfect pandemic mother. I had to be a perfect mother, period. And I even had reservations about doing this podcast because I'm afraid of saying something that isn't right, which you've noticed through this whole thing, I've said for me. And I had a long conversation with my husband about it, saying should we do this. And he's like, I think because you are not a psychologist, you are not a professor, you are not a doctor, you are not a therapist, you are just a mom. You need to do this. Again, I'm still sitting here in the back of my mind. There have been five or six sentences that I've said that I'm like, I can see where an autism mom might have a problem with what I just said, especially the grieving the the life part. He thought that is a very taboo thought. Some parents of children with disabilities get that concept. It's been very therapeutic, it's helped them get through it by accepting it and embracing it. And other parents are like, you shouldn't feel that way. They're not any less. We're not saying our children are less in any way, shape or form. No way, no. No parent of a disabled child is going to tell you that they think their child is less than anybody else. So the path is just different. It's OK. The best description I got for it, was what happens when you're a football player and you've played football your entire life? You get drafted, the NFL, your first game. You break your leg, and it's a career-ending injury. You are allowed to be upset and mourn the life you thought you were going to have in the NFL. It doesn't mean it's going to be any less. You're just now going to take a different path. And for me, that was the biggest piece of advice I got that helped me, I think, the most out of anything because I did feel guilty that I was upset that my son was autistic. And then I thought, oh God, I'm a horrible human being. I didn't love him any less. I didn't. There wasn't– there was no physical or emotional change other than I was upset because I don't know what this journey entails. Now I can't imagine it any different. I cannot imagine it any different. My child is hyper. He is crazy, insane. He's exhausting, but he loves life. And for somebody who wants to experience everything as much in her lifetime as possible, seeing it from a different perspective in such a small child is just the most amazing thing to witness. Did the playbook– there is no playbook. There really isn't, because everybody's journey is so different. We had to make a playbook for ourselves and not compare our playbook to other people's playbooks. 

Dr. Amanda Zelechoski: So much real-world insight and really vivid descriptions of day-to-day challenges, but also the beautiful moments that come with parenting a neurodivergent child in that conversation with Jennifer. Now we're going to hear from Nisha, a Los Angeles-based journalist who shares her perspective as a mother of a child with a high-risk medical condition. 

Nisha Gutierrez-Jaime: Hi, I'm Nisha, and I'm a Los Angeles-based journalist. I'm a mother of three kids. I have 7-year-old twin boys, and my daughter Nyla was born in 2017 with a congenital heart disease called Tetralogy of Fallot. And ever since then, everything has really been completely different than what, you know, life was before that. As an overview, you know, she's three now, and she's had three open heart surgeries, probably 10 to 15 other heart-related procedures. Her first surgery was when she was six days old, so it kind of changed my whole perspective and the way I parent overall. I have boys as Amanda, you know, they're super rambunctious – I'm sure like yours are. And there's never a dull moment, you know, one can be just sitting there still and then the other one will come and like counts them on the head and then all craziness breaks loose, you know? 

But I've had to teach them from a very young age that they have a sister. The words that I use with them are like fragile and tender because I feel like, you know, they're only seven, and so I choose my words very carefully with how I explain them to her for different reasons, like one, I don't want them to feel afraid of her, afraid to like, touch her, you know, things like that. So I've tried to kind of, for lack of a better word, like dumb it down for them and just explain it to them in simple or easy terms, because her having a disability because of her heart it limits us like as a family even you know as a whole of what we can do, what they can do, what she can do. So it's just really changed the whole trajectory of who we are as a family and who they are also as kids, just growing up. Sometimes with her, like if she runs around a lot, she immediately starts sweating because her heart is constantly like in overdrive. Sometimes her palms and her ankles will turn like a dusty blue, and so I've already trained them to know like if you notice sister has a bruise, come and tell mom, you know. A lot of things do to her heart, she has a hard time like chewing food and swallowing food like properly so when she's feeding or when she's eating you know or at the table, and I'm just like laser-focused on her 'cause I have to be prepared if she chokes, you know, go into that, not panic mode. But I have to know exactly what to do. And so I've had to tell them, if you're not getting like the attention that you want from me, you know boys, “Mom, I need this. Well, I need that,” you know? So they have to kind of grow up a little bit faster too because my parenting has shifted with them. I was– it was two of them, but it was just them and me. And so I was like, uh, I had a strict routine like we sat down, we ate, we cleaned, we had a bath. Everything was very like in tandem of like how you know every day was the same. But with Nyla, it really changes everything. And sometimes it's sad because we could have plans, right? Like I'm going to take you to Disneyland, you know, well if Nyla wakes up and she's not feeling well or if I'm noticing that her arms are dusty or if I'm noticing that she's breathing too hard, then I have to say like “hey boys like I'm so sorry you know we were going to do this today but sisters not feeling well.” And even just the way like you framed those statements to them because there are two also children, and sometimes they feel like, well we had plans, you know, why are you not here today or why is this getting canceled, you know, and so I just try to really pick how I explain things to them. 

I'm almost overly compassionate towards them, and I feel like some people have tended to hold that against me, you know? They feel like, oh well, you baby your boys a lot, you know? And it's really because I have almost lost my daughter several times. And so when I see that I'm making my boys feel sad because of, you know, I'm not being there or we have to cancel something or they can't go somewhere, of course, I want to make that up to them. You know, as their mom. And so I feel like my parenting with twins, it was kind of like survival of the fittest just trying to make it through every single day and make sure I checked all the boxes like we did this, we did that, but then I have this beautiful baby that has, you know, a life-threatening condition. And so now I have shifted my parenting to like obviously cherish every single day, but also try and make sure that all my kids are getting exactly like what they need from me, even as hard as that is, you know? 

Carmen Vincent: Absolutely, and it sounds like you've done such a great job. And maybe it's a bit of trial and error, but figuring out what works with your children. I mean, can you talk a little bit about how you've built a support system around yourself and what resources you use to help figure those kinds of things out? 

Nisha Gutierrez-Jaime: Aside from my parents and my, you know, I have a sister and a brother also who I'm super close with and they've all just really rallied around Nyla and aside from that, I, from the beginning, I knew that I needed like a community of other moms, parents, even grandmas, you know that have kids with congenital heart disease like Nyla does and so like in Los Angeles we have like an LA-based moms group for kids like mine and the thing with congenital heart disease is like it's different. It's so different from one kid to the next. Like nobody has the same, uh, disease if you will, but we all still share stories, whether that be like on Facebook or, you know, other social platforms. Even there's a few that I even connect with via text message before the pandemic, you know, we had like, congenital heart awareness walks, stuff like that, that I've connected with other moms with, and that's really like my village that I have. Because if I haven't gone through it yet with Nyla, you know they've kind of been through something like that or something similar, and then I have in turn learned that I should do that for them, and so I'm kind of playing both roles like, I'm meeting that support, and then I'm also a supporter of others because I know how much it has helped us in our journey with her. 

Dr. Amanda Zelechoski: I'm just– I'm hearing so many parts of what you're describing, right? Like through the journey of this, you know the hyper-vigilance and constant worry which comes with parenting anyway. But multiplied times 1000, you know, in your context and then the needing to like navigate everything between the siblings to make sure each of your kids needs are met, you know, there's just, there's a lot there, and so in addition to your village, I'm just sort of wondering, like how do you take care of yourself through this, because that is often as we know what gets lost in you doing all of the things for everybody in a situation that is changing sometimes every day. 

Nisha Gutierrez-Jaime: Yeah, and if I'm being completely honest, like, I have not done a good job with self-care or taking care of myself at all. I suffer from really bad migraines. I have migraines, oh, so many times during the month, probably like 10 to 14 days. And so I know a lot of that is like the anxiety and the worry that you know I do carry. I did do one-on-one personal therapy. 

Probably about a year and a half ago, right before Nyla was two. She went in for her pulmonary valve replacement, and I just like shattered into a million pieces because I know, you know, and I apologize if I'm going to get emotional, but that's why I'm talking about her all the time. And during that time, I remember telling my mom, like I don't think I can like do it anymore, you know? Because I pride myself on being like super strong and like don't worry mom like I got it, you know, that's how my parents raised me. I mean, they raised me with plenty of love, but they also raised me with the mentality that don't worry, whatever happens, we're going to get through it, you know, it can break us down to a zillion pieces, but you will get through it, and we're all here for you. So the therapy that I did for probably about three to six months, you know, and it was so hard to carve out that time. Like I lived in Orange County at the time. This was before the pandemic, and I remember just even feeling guilty like driving 30 minutes up to where I was driving to, but in that time, when I would speak with my counselor, I felt, like, you know, I could be wrong, and I can be real, and I can let it out, and then I can get great advice, you know? And it made me feel better it– I feel like it made me a lot more patient with my boys because patience is also something that I struggle with a lot because I don't have time for that self-care, you know, that you say. And so I mean, I think, during the pandemic, you know, therapy hasn't really been that easy to come across. Even online, you know, I mean you had, you were stuck at home with kids. So how do you carve out that 30 minutes on a computer? But I have been doing better, even just little things. Amanda, like, I'm sure you can really like– I get in the car, and I'll tell my husband or my parents whoever is helping me that day like give me 30 minutes to drive through like Coffee Bean. I can turn on a podcast, and I will be back in 30 minutes, and I'm a new woman after that. I mean, it's nothing. 

Dr. Amanda Zelechoski: It is amazing. It can be it– right? Like just five minutes. I think that's why it's so hard 'cause I definitely get that it's, like I'm even bad at self-care, right? Like it's one more thing to fit in but it's that recognition that you know, right? It can be 5 minutes, 10 minutes of just– I just need a minute like I just yeah I have nothing left to give to everybody else right now in this moment. And so I just need a second. But it's like learning to acknowledge and recognize that. And lean on your village and fight those feelings of feeling guilty or selfish, like you said for doing that, 'cause it is the only way to sustain ourselves. 

Nisha Gutierrez-Jaime: Yeah, and sometimes even I– I learned to do like in the hospital, you know, before this last time she was in the hospital I think for 14 days, and because I'm like a veteran hospital mom now like I knew what to pack to make me feel good. And it was like a form of self-care. You know, the first time in the hospital I didn't have nothing. I was miserable. The third time around, you know, I had my favorite fuzzy socks. I had, you know, my favorite snacks. I had travel-size, like facial stuff like you know it was this different and even those little things, will make all the difference when you feel like– you're just thankful. 

Dr. Amanda Zelechoski: I love that as an example, right? Like nobody ever thinks of that. It's all about what do I need to pack for my child versus like, no, I need to be a warrior on this journey with her, and so what do I need to sustain me during those days too? I love those examples. 

[MUSIC INTERLUDE] 

Nisha Gutierrez-Jaime: I didn't feel pressure to be like an advocate. I feel like I'm really in the infancy stages of being an advocate for my daughter and for her community. We call it the heart community. 

Her heart sisters. That's kind of how we talk about the other little girls or heart brothers that, you know, that are like her. I kind of just felt like– also, you know, I'm a journalist, and writing is kind of who I am, not just what I do. And so I've always like journaled. I've always been like a parenting blogger since I think my boys were born premature. That's kind of when I started blogging for different sites, and so I kind of just like channeled all my feelings that way. And then that just kind of led to people saying like, oh hey, like I saw this blog that you wrote like would you be willing to share, you know, a little bit about Nyla’s story with us. And so, most recently, Nyla was selected as like a patient honoree for the Children’s Hospital that she gets care out here, and they asked me like will you speak on her behalf and so that was the first time I really, said OK and did it. And it was so stressful but for me I just thought about it, and you know a big thing in our CHD (Congenital Heart Disease) community is that a lot of moms they don't know that their baby has a heart disease until the baby is born and is completely blue and it's all hands on deck trying to save the baby, you know, right after the baby is born. Thank God for us that I was able to find out, because I was of advanced maternal age and there was like a special program, you know, for older moms like me, you know? So part of me speaking on her behalf was so that the hospital and, you know, all the supporters understand that it's important that even younger women have access to that kind of a test because it could save so many babies, you know? Like it just blows my mind that that's not something that's offered or even mentioned to younger women, because congenital heart diseases are so common and so many babies have them. So, advocacy in that respect is really important to me. 

Dr. Amanda Zelechoski: I appreciate you saying, you know, I'm just at the beginning of this journey because I also think that the advocacy takes a different shape as, you know, your kids get older, and it just it looks different. Like sometimes there's, you know, advocacy with a capital A like you're talking about, you know, really advocating for systems change or policy change, but there's sometimes, you know, little A advocacy we do too. And you know, I, I think about for my child that has had some medical issues, and you know, when it came time for him to start school needing to advocate on his behalf and help teachers understand you know this is why some of the behaviors are there. This is a part of his history, and it's important that you understand that. Instead of sometimes what can happen, you know, jumping to a label like well, this is a, you know, disruptive kid or whatever the case might be. I think you don't stop advocating for your child, and you just may not even realize the times that you need to, because sometimes we want to be so careful to not overstep or helicopter, but there are real times our kids need to help others understand these parts of their journey. And so I just think that the advocacy looks different at different stages of your child’s life, and you know your journey as a parent too. 

Nisha Gutierrez-Jaime: Yeah, and even as my boys have siblings, you know, I mentioned that they had just gone back to school, you know, they're in a public school, and I really had to advocate for my family as a whole because they wanted them in separate classrooms, you know, it's the whole thing, like don't know twins have to be separated, you know, they can't be together, and it was a whole summer of me literally having to like get medical records and explain like I want them to go back in school, but I can't have them mixing with like 50 different children because I have another little baby at home, you know, and it was just the hoops I had to go through was really like, disheartening. It also broke my heart that I had requested for them to have plexiglass around. I mean, it's no longer a mandate in our classrooms here, but you know, you can request them. So I did, you know? I mean, my kids are in second grade, they're boys, they're germy, and they're gross sometimes. So I said like can we have that plexiglass you know around it? And then I felt so bad yesterday because they came home, and they're like, mom, we are the only two people with plexiglass on our desk. Do you know how many questions we had to answer? Like they asked, are you guys sick? Like why do you have that? And so, you know, and I told my husband, did I do the wrong thing like, did the wrong thing by asking for plexiglass? He's like they'll get over it, you know, don't worry, it's fine. So they went. Hopefully, they didn't get too many questions. 

[MUSIC INTERLUDE] 

Nisha Gutierrez-Jaime: I don't know what can happen tomorrow. I mean, none of us do right like we can all get in our car, and God forbid something happened to us. But I think, just because she's a tiny little baby that I've known since before she even was born, that she has this huge battle. That it's hard to say with every day, like I'm not going to tell you that I have this, like positive outlook and, that I'm always like happy and like I know we can do this like it's really a rollercoaster, right? Like some days I look at her, and I'm like man, she's gonna like conquer the world, you know, she'll be the next olympian. And other days, I look at her, and I just really like I'll lay in bed with her, and I’ll just watch her breathe all day long, you know. And so some other things that I do is like I have, you know, favorite songs that I listen to in the car. Sometimes those songs will make me cry my eyes out, and you know what? Good, you know? After that 8 minutes of just letting it out, I feel better. You know, I feel like, OK, I let myself be in those like really dark dark places, but then I always make sure that I bring myself out of them because I just feel like, for me, that's what works like I don't want to push things down. I don't want to be like poor me, like the sadness that I carry, you know, I channeled that into like prayer or like a positive vibe, you know, like in my– you know, and I speak it out loud like, gosh, whoever like needs this prayer right now. Whoever needs to feel like a virtual hug right now, or like whoever needs to like a piece of wind, go by their face right now and just know that everything is going to be OK. Like, send this to them, you know, and so that's just something that I've done. I think I really started doing it during the pandemic because I just felt so much anxiety, and I'm like, how can I just like let this go? Like what could this transform into? And so that's kind of what I've transformed it into. And then it really does help me. And I hope whatever vibe it's going to, I hope the vibe is going to someone that really needs it and I hope it's not just me, you know, spewing stuff into the air. 

Dr. Amanda Zelechoski: I think that is so important too that you're acknowledging like it's OK to be in the dark place for a bit, and when we go right to, you know, it's OK, I pull myself up. I'm so, you know, I have to just be grateful. It's like we also have to let ourselves, you know, grieve whatever it is we need to grieve. Feel all of the different things and work through them as you said, even if it takes you time, and to figure out, you know, what is the way I'm going to channel this. As long as I find my way out of it, it is important to actually honor and experience those things and let yourself, you know, be real about it. So I really appreciate you talking about that. Can you just add 'cause you mentioned it to like– add on to this the layer of being a working parent also, right? So there's like there are all of these challenges you've talked about and this visceral desire to just wrap your arms around your child and keep her safe and not let the world in so that she is safe, and yet the realities of our lives are we have to work, we have to do all of these things, so can you talk a little bit about that, you know, just what it's like being a working parent too? 

Nisha Gutierrez-Jaime: Yeah, with her specifically. So when the twins were born, I stayed home for, I think, two years until I felt like they were easy enough or not easy but more manageable for my parents. I mean, I wasn't didn't fall faster, it was like–

Dr. Amanda Zelechoski: Do twins ever get easy 'cause this I'd like to hear. 

Nisha Gutierrez-Jaime: And then so– and then Nyla came, you know, and I, you know, it was hard for me because I had just gotten back to work, yeah, I wasn't really planning on, you know, another baby, let alone a baby with a disability or a medical condition. And so I was at a crossroads. I'm like what do I do? Do I have to give up my career? You know? I went to school. I lived in different states trying to become a journalist and, you know, follow my dream. And then I felt like I was getting it back a little, and then here I am with this big thing, you know, in my lap. And so finding a job that was really flexible for me was really important because I had tons of doctor appointments and then I knew with her, you know it has to be somewhere that or I can call and say, like, hey, I can't be on the schedule like for six months like you know, I'll see you in six months and so lucky for me that I found you know, a place, a job that has been really accommodating and supportive of Nyla. But you know, even you could have the most supportive workplace or an employer ever, and at some point, they're gonna get tired of it. And maybe not get tired, you know, there's a more proper word for that, but they're a company they have needs. Also, they have to, you know, they have certain hours of insurance shifts that they need to, you know, to do. I'm in the news business, so we're like a 24-hour operation. You know everywhere that I work. It's like a 24-hour operation breaking news, and while it's sad that my daughter is sick, there's also a job that needs to get done and so it was really hard. Like I felt guilty, you know when I would email my boss, I would read over the email a million times asking myself does it sound right? Could I say something else? Like are they going to fire me? Are they going to let me go, or are they gonna lay me off? It was just like constant stress. 

Another thing and I was like holding onto it so tight, you know, I felt like, I don't know. I don't know if it was like a part of my identity that I didn't want to let go. I didn't want to just be a mom, you know, because I felt like I had invested so much in myself. And I really enjoyed working, and I would go to my parents all the time and be like I love to go to work and like enjoy my coffee and use the restroom in peace and have lunch like is that bad? Does it make me a terrible mother? Because I want that, you know? And then the pandemic made it really hard. Like I, I mean to this day, I'm still, you know, looking at other options. I always keep my opportunities like I try to keep them open because for me, I have to, like my family, is always gonna come first. You know my daughter and her, her health, my boys also and it's just this big balancing juggling act that I do every single day. 

I'm trying to be a good mom and be a good wife and help contribute to my family, hang on to my career, make my bosses happy, you know? There's so many elements to being a working mom. And I do feel like there's such a focus on like moms and what we're doing and what we can do, you know, even just last week we had a big you know meeting at work about returning to the workplace and, you know, I was hoping another mom would hop on and be like, hey, you know I know we're supposed to come back on this day, but can we get a little more time and no mom did. And it took everything in me to just let that fear go and, you know, turn on my camera, and I was like, “hi, this is Nisha. I'm a working mom here, and I'm still not comfortable coming back yet to our newsroom” and what can we do, you know, for fear that they're going to say like, Oh well, you know she's a mom let's let her go. There are these 200 people here that aren't moms. They're not worried about coming back, you know? They'll come back whenever we tell them to. So it's so many things that you feel like you can't say how you really feel and for me I've just kind of learned what's going to happen is going to happen, you know? Like I can't rack my brain and add to my already anxiety and stress by trying to like line up all the ducks and like see what's going to happen tomorrow at work or even with my daughter's condition. I kind of just have made like a really mental note and said, let's focus on what you can control and what you can't control like you have to let it go and it's not easy at all, by all means. I don't think anybody will say that's easy, so I have to remind myself every single day, especially when I feel like my patience is running out with the kids. Like the stress, like you know, the extra tears on that day. I just say Nisha like one thing at a time. Whatever you can do, you do, you know, and so for work, Amanda I'm doing my best. I'm trying my best to balance it all out, and hopefully, I can do a good job. But, well, you know it's hard being a mom and working. There are no right answers. There's no formula, right? You kind of just have to go for it and see what happens. 

Dr. Amanda Zelechoski: Yeah, it well, and so like with that I resonate with so much of what you said like in my bones. And I mean, I'm wondering too. Like what do you wish other people understood about what it is like to be a parent of a child with a disability? 

Nisha Gutierrez-Jaime: I just wish they understood the juggling act that you have to do. Like, there's all these balls in the air, and I'm trying to keep them all up. Well, what people don't understand is like, that they see my daughter, and they think that she's just a healthy, healthy, and normal 3-year-old child. She's running around. She looks great, she talks normal, you know, she's normal for what people think, but they don't see that, you know, she has trouble swallowing food, you know? I had to do a swallow study for her. It took so long to even get on the phone with the hospital, and then you have to deal with insurance companies, you know, and they're not going to cover this test, and they're not going to cover this blood sample. And it's there's so many behind the scene things and I feel like because I am a parent who's, I don't want to say like overly active on social media, I mean, I pick and choose what I share of her, but I think that because I am open, people think that they know everything that's happening and they don't, you know? And I appreciate that so many people like to follow her journey and feel like they know her like that really, right? That makes me feel good, but there are still so many things like that for people that have children with disabilities that they don't disclose. So don't assume that, just because we're disclosing one part of what you see, you know there's not ten other big factors that are in the background that we're not highlighting because it's not pretty and fun, and we don't want your comments on it, you know, if that makes sense at all. It's just there's so many, there's so many things, so many layers. 

[MUSIC INTERLUDE] 

Nisha Gutierrez-Jaime: She really has taught me so much. I feel like my personality has really evolved because of her. I feel things a lot deeper because of her and not just sadness like happiness too. Mostly happiness and joy, you know, she has taught me that it's OK for things not to be perfect, because prior to her, I mean, I was very I prided myself really on like having a very clean house, very sharp looking little boys, you know, down to like my purse being organized. It's like dumb everyday things that I shouldn't be spending time on, and now she has taught me that it's OK to just like break out in a dance party like in the middle of the day. Or it's OK that when I'm putting on my makeup, you know, getting ready for work, it's OK for me to just put makeup on her, or, you know, give her the lip gloss and let it be all over. The other day she had crazy blue like– and I was like, Nyla, you look incredible. And so she really has taught me to kind of, I think, embrace like the inner child that I still have, because being a mom of a sick baby has made me like parts of me very hard and tough, right? Because I had to be that way, I don't like people to see me as vulnerable, and she has shown me also that it's OK to be vulnerable, you know? It's OK to kind of go from one extreme to the other, and that's what she does. Sometimes she's super excited, sometimes she's in a full-on tantrum, and that's OK because that's how I feel as a mom. I felt the same way, you know? So she's definitely taught me that. And she also has taught me that it's OK for me to look into the future. Like, you know, her appointments are every three months. Now they're every six months, and I'm hoping that you know at some point– there are CHD patients there–  whether every year or every five years, and so I hope that at some point we can get to that, but we're not there yet, but she has also shown me just by being so strong, I mean every single surgery that she's had, it's amazing, her recovery. And I've said this like on social media before, but the nurses always say, like Nyla is the happiest baby, like she's so happy. She's so chatty. She's super sassy. I don't know where she gets that from. But she has this really big personality, and so she's taught me that even though yes, it's not a secret that she's fighting a very big ugly, you know, disease within her heart. But it's not going to stop her, you know, and that's what she showed me, she showed me like mom like even though she can't verbalize this, she has shown me in her actions and how she wakes up every single day so happy and so strong that she's going to be fine. And it's OK for me to look into the future because that's what I was afraid of before, you know, like, I– like I said, I will hug her some days and just watch her sleep and watch her breathe. And so from seeing how resilient she's been and how strong she's been, I've learned from her that it's OK for me to plan next year with my boys, like plan a vacation for them, plan– even though you know what she's going to be when she grows up like that, was someplace that I never let my mind go to before. I didn't want to think about her 16th birthday or, you know, her wedding day, even her first day of kindergarten like I wouldn't think about that before. I would just totally block it out. And just seeing how much she's grown, how much better she's doing. Like I've learned from her that it's OK for me to want that future for her and to look into the future for her, and even for her, you know, she's at this stage, or she's very verbal, and now she's like mom, I'm going to do, you know this, this, and this. And so it's just beautiful that she has kind of given me that perspective and that hope back in my heart because it was really taken away for a long time like I was afraid, really afraid. So she's made me a lot stronger. 

[MUSIC INTERLUDE]

Dr. Amanda Zelechoski: Listening to these parents' ability to balance hope and honesty was so refreshing. Jennifer is right that there is no playbook which can be scary but also empowering. We get to make our own. And I really appreciated Nisha’s ability to acknowledge the importance of grief and growth. Giving yourself permission to be in the dark, but then letting others in to help us find our way out of it. My deepest thanks to both of them for sharing their stories with us today. I hope this episode was the positive vibe, the virtual hug, the random gust of wind Nisha described that helps you know you're not alone, and there is a community of parents and caregivers out there who get it and who are fighting right alongside you to ensure that all of our kids are safe, healthy, and thriving. 

[MUSIC INTERLUDE]

Dr. Lindsay Malloy: Thank you for joining us for this episode of the Pandemic Parenting Podcast. 

Make sure to hit, follow or subscribe on Apple Podcasts, Spotify, or whichever platform you're listening on to be notified of future episodes. We'd also love to connect with you on social media. Look for our blue and yellow logo when you search Pandemic Parenting on Twitter, Facebook, Instagram, LinkedIn, or YouTube, and you'll find us or follow the links in the show notes. 

Dr. Amanda Zelechoski: Let us know what you think of this episode by leaving a review on Apple Podcasts. Your five-star review helps us move up the charts to reach even more parents and caregivers. 

If you have a specific question or topic you'd like us to address in a future episode, let us know. You can email info@pandemic-parent.org and mention “podcasts” in the subject line. 

Dr. Lindsay Malloy: And this podcast isn't all we do, by the way. Pandemic Parenting is a 501(c)3 nonprofit providing free science-based resources for parents and all who care for children while navigating the COVID-19 pandemic. 

To learn more about our organization and access our extensive library of webinars, videos, blogs, and more. Visit www.pandemic-parent.org. 

Dr. Amanda Zelechoski: Lastly, this show wouldn't be possible without supporters like you. Lindsay and I donate our time to this podcast, but we do have an incredible team working behind the scenes to make this all happen. If you'd like to support the show beyond leaving your five-star review, visit www.pandemic-parent.org/support and donate today. 

Dr. Lindsay Malloy: Thanks for listening, and we hope you can join us next time. 

[MUSIC ENDS]

Pandemic Parenting
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