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. I'm so excited for today's conversation with Amanda Griffith-Atkins, who is somebody I've admired for some time and met recently in person at the Global Genes Week in Rare conference. First of all, this conversation was actually recorded in person, so it might sound a little bit different from other episodes.

But that is totally irrelevant because Amanda and I had such a fascinating [00:01:00] conversation exploring what would happen if we were all a bit more honest about what we're going through. Not just the shiny happy stuff, but the really hard stuff too. Amanda has built a huge platform on that very premise.

She's a therapist and mother whose journey into parenting a child with Prader- Willi Syndrome transformed not just her understanding of disability, but her approach to human connection. Amanda and I talked about scrapping toxic positivity, embracing the complexity of being human, and finding hope, not despite our struggles, but through them.

Without further ado, I bring you Amanda Griffith-Atkins. Welcome to the show, Amanda. I'm so excited not only to have you on the show, but that we're here together in person. 

Amanda Griffith-Atkins: It’s amazing. It feels like old fashioned, but also like the technology makes it a little bit more confusing. 

Jessica Fein: It's also so exciting for me to be interviewing you because I followed you for a while and I feel like I'm always reposting your pearls of wisdom and now here I am with you.

So this is amazing. And I should say we're here at the Global Genes Week in Rare conference. I have just been so inspired and meeting so many people. What have you thought of it so far? 

Amanda Griffith-Atkins: Oh, it's been amazing. To be honest, I wasn't completely familiar with Global Genes before this week, and I've honestly just been blown away by like the brilliance and just the people that are really making a difference in the world of rare disease.

It's been so exciting for me to be here. 

Jessica Fein: So let's start off by learning a little bit about Prader-Willi Syndrome. Tell us, what does that look like? 

Amanda Griffith-Atkins: So, it's a small piece of the 15th chromosome that's missing, and basically, like many genetic syndromes, there's so many little parts of the genome. The body that it impacts if you were to Google it, the biggest thing that you would see online is that the part of the brain that registers hunger and thirst doesn't work properly, which leads to an insatiable hunger.

So basically that feeling that you have, like, if you haven't eaten all day, maybe you went out on a long walk and you're just like, you have that starving pit in your stomach. They say that people with PWS [00:03:00] feel that at all times. And so there's this food seeking behavior. I've heard of kids or adults with PWS eating coffee grounds, dog food, medicine.

It's really terrifying because we need food to survive, right? We all have to eat. That's a normal part of life, but people with PWS have to be safe. so highly controlled and restricted or else they could literally eat to the point of stomach rupture. So it's a really complex syndrome, and it also affects the endocrine system, cognitive delays with it, and also physical delays as well.

So it's a really like a multi-systemic diagnosis and really has changed our lives in so many ways. 

Jessica Fein: I can imagine. So just practically, how do you manage that? I mean, how do you keep your kitchen kind of, Do you have to like keep it off limits? Like how does that work?

Amanda Griffith-Atkins: Yeah. A lot of people with PWS, their refrigerators are locked.

I mean, there's this whole line of products that I never knew existed. Kitchen locks, cabinet locks. Actually just recently bought a doorknob lock [00:04:00] thing that if you, it uses fingerprints to open up the door. So I was thinking, okay, this is good because my other kids could have access to the food, but Asher can't.

You know, so you have to think about so many layers of it around food, which is already can be complex as is. And I don't want my other kids to have issues around food where they feel like it's off limits or they have to sneak it. So it really takes so much kind of like mental gymnastics to keep everyone safe and healthy.

And also just like not mess anyone up in the process.

Jessica Fein: Right. Right. I mean, it's, as you say, it's just such a complex issue under absolutely the best of circumstances. How old is Asher?

Amanda Griffith-Atkins: Asher is 15. He'll be 16 in April. He's doing pretty well. Yeah. A big part of it is behavioral issues. And that's honestly, probably the biggest thing that we struggle with things in like the OCD category and like perseveration about ideas that he gets in his head.

It's a lot of just like routine. If we go out to dinner, we're not going to be talking about it at noon [00:05:00] or else it will sort of heighten his anxiety. And so it really affects our family functioning. I think that's something that's been really hard is just, like I said, going out to dinner or going to a birthday party or going to a picnic.

Like these are really normal, happy family events. And it feels like a lot of times we just really have to be careful and like manage expectations, especially for my other two kids who are non disabled. I don't want them to feel like they're missing out or to feel resentful towards Asher, but also obviously we need to protect Asher too and make sure that he's okay and safe when it comes to food safety.

So it's really such a balancing act. 

Jessica Fein: What about the fact that he's getting older now? I imagine it's one thing when he was little and kind of in your sight or in your care most of the time, but as he gets older and presumably more independence, how does he deal with that? And how do you deal with that? 

Amanda Griffith-Atkins: I mean, honestly, I think that's the hardest part.

And I feel like probably a lot of parents of disabled children feel that kind of pull of independence. “Independence.” I'm using quotation marks because [00:06:00] like, what does that mean for a high need child? You know, and how do I give him independence that is appropriate for him? Right. In fact, the other day at school, he's in a special ed classroom and he raises his hand and said, I need to go to the bathroom.

So, okay. They let him go to the bathroom on his own. When I heard that, I was like, Ooh, I don't know that I would trust him in a big Chicago public school to, you know, get from point a to point B without finding trouble. Well, as the story progresses, 30 minutes later, they realized, Oh my gosh, where's Asher?

He never came back. He was still in the stall. And so they went to check on him and he ended up locking himself in the bathroom for two hours. I'm not sure what he, if he was just like, I don't want to go back to class. I'm just going to stay here. And then when everyone came and kind of started like, Asher, come on, you have to go, then he kind of shut down.

He was overwhelmed. He felt like he was in trouble. So he just basically felt flooded and like locked himself in the bathroom stall. And I mean, as I'm thinking, all these feelings of course, come up for me as a parent, feelings of anger, feelings of questioning [00:07:00] different decisions that were made, but when it all starts, I'm like, if I was a teacher to a child with PWS, I don't think I would let them go to the bathroom by themselves.

Like that fundamental level of independence. And then I started to think about it and I was actually feeling sad about it. So I'm like, man, like my 15 year old can't even go to the bathroom by himself. Like that's crazy that that level of hyper vigilance is ingrained in my brain. I have a typically developing seven year old and I would absolutely let him go to the bathroom.

Right. So it's like that kind of grief around what independence means for Asher. And like, it looks different than it does for other kids big time. And also, how do I tell the teacher? Hey, I don't think I'd let Asher go to the bathroom by himself if I were you. We want to assume competency, of course. Right.

But also we need to be aware of like a child's limitations and keep them safe too. 

Jessica Fein: Yeah. I mean, and that for the teacher should be paramount. I Totally relate to what you said about the younger sibling. I had that experience as well. When my younger child started to be able to do things. [00:08:00] That his older sister couldn't exactly, that was one of the most painful things for me as the mom. 

Amanda Griffith-Atkins: Yes.

And I think also like for your child to kind of recognize, like I've noticed Asher part of his syndrome includes speech apraxia. And so he'll get the remote and talk into it and say the show that he wants to watch, but the remote won't understand him. So then he'll call his seven year old brother. Hey, Jasper, tell him I want to watch.

Blah, blah, blah. You know, there's two sides to that. One is resourcefulness. I'm like, way to go, Asher. Like you got what you wanted. You knew how to seek help and you got it. On the other hand, I'm like, man, that's so hard that like, you have to ask your seven year old brother to do that for it. Like there's just, there's so much complexity in parenting a disabled child.

I mean, the biggest part of my platform is acknowledging the hard stuff, right? But there's always the other side of it. Like I said, the resourcefulness, like being able to say, yeah, that's right, Asher. Like, just ask someone for help. You'll get what you need. And there's a grief in the fact that he can't do it on his own.

So it's both, right? 

Jessica Fein: Right. It is both, and, and that was a huge learning for me that both of those things were [00:09:00] happening all the time. At the same time. 

Amanda Griffith-Atkins: Yeah, exactly. Yeah. 

Jessica Fein: You have said that Asher's diagnosis actually helped you discover your life's purpose. That’s a biggie. Tell us about that.

Amanda Griffith-Atkins: I always knew that I wanted to be a therapist from a young age.

And I admittedly had never been involved in the world of disability, which now, of course, I can see that and be like, man, that's like such an ableist stance to be like, wow, I was afforded the ability to never understand disability or be interested in it because I was able bodied and non disabled. But having a son with this disability kind of helped me see.

And it's not just with disability. It's with grief related to death, related to divorce, related to anything. Illness, kind of this like veil of toxic positivity that for some reason is just constantly there. You know, it's the cliched response of, well, she's in a better place now, or at least she's not suffering.

Or, you know, you and your husband were designed to be [00:10:00] Asher's parents, you know, or like, well, I think people tell me this all the time that people will say. At least it's not cancer. 

Jessica Fein: Okay. First of all, and I've said this before on the show, but any statement that starts with at least we could just disregard.

I mean, we could just eliminate that. 

Amanda Griffith-Atkins: Exactly. Yeah, exactly. And I noticed this when Asher was young, that all these well meaning, like really wonderful people in my life that I love and trust. I could not allow space for the hard stuff. Like I would just be like, today was a terrible day. We're struggling with this.

Well, keep your head up tomorrow’s another day. And I totally get it because that was me. 

Jessica Fein: Yes. me too.

Amanda Griffith-Atkins: At one point we want to be encouraged. You can do it. Come on. You got this. Instead of being like, you know what? This sucks. And let's just be here in the suck together for a few minutes or what feels better. What feels better? The person that says this sucks. Like here's a glass of wine. I'm so sorry. This sucks. Versus, Hey, tomorrow's going to be a better day. You've got this. Keep your head up. What feels better? 

Jessica Fein: I think that it [00:11:00] might depend on my mood.

Amanda Griffith-Atkins: That's a good point. 

Jessica Fein: Because sometimes I want the acknowledgement.

I remember when Dalia was in the hospital for an extended stay, a friend of mine lived like around the corner and I actually got a break from the hospital and went to my friend's house. And I remember we were sitting on the floor with wine and the pile of clothes. She was showing me clothes that she was selling, whatever she was in that business.

And I remember she said to me. “Your life sucks.” 

Amanda Griffith-Atkins: Yes. 

Jessica Fein: And I was like, thank you. 

Amanda Griffith-Atkins: That feels so good. 

Jessica Fein: So good. Yes. And it never would have occurred to me to say that to somebody else. I'd be like, Oh my God, I'm not going to remind you about that. You know, I want to distract them.

Amanda Griffith-Atkins: I have this really good friend and she doesn't have kids and she came and stayed with us.

And she was like, “that was a lot.” She's like, “I'm so tired.” And I was like, “Thank you.” Sometimes we just need to have space to be like, this is really hard. This is really hard. And I feel like when Asher was younger and I noticed so many people kind of throwing those cliches at me, I was [00:12:00] like, this doesn't feel good.

Plus my training as a therapist, I was like, At the end of the day, we all just want validation. We all just want to be seen and we want someone to acknowledge that, yes, this makes sense that this is hard and you're not alone. I'm going to be here with you through the hard days, through the happy days. And so honestly, that's like what I try to do now.

You know, I try to just let people talk about the hard stuff. Like even meeting you, I was like so excited to hear about Dalia and I wanted to see a picture of her. And it also so unfair that she's not here anymore. But I think along with that, like, for example, it would be so easy for me to come in here and be like, Oh, I don't want to mention Dalia because she died.

And I don't want you to be sad. Right?

Jessica Fein: Right. And you don't want to remind me right. Because maybe I forgot. And so when you came in and said, can I see a picture of Dalia? That makes my day because now, first of all, I get to look at a picture. We get to connect over that. I mean, it makes me feel so good.

And it's such a conversation [00:13:00] opener compared to feeling like there's this elephant in the room. 

Amanda Griffith-Atkins: We all know what happened, but God forbid we mentioned it. This poor mom, she's grieving. I don't want to say that. It's like, you want to talk about her, like whether it's the good or the bad, you, you know, Those are memories that you're never going to forget.

That's a part of you now. And so I think that whole thing of like, well, I'm not going to bring it up because I don't want to upset her. 

Jessica Fein: It's like, well, it's on my mind. 24 seven, you know, like you’re not going to upset me any more than I already am. 

Amanda Griffith-Atkins: So yeah. Sometimes just naming the hard stuff is so important. So refreshing.

And you just suddenly feel like, Oh my gosh, I feel seen. Like I feel safe with this person. Like I can put my guard down, say the hard things. And ironically through that, through like saying the hard stuff, I think it actually makes us like way more joyful people. Like it opens up our capacity for the good stuff too, because we're kind of like giving the hard stuff airtime.

It's, it's not taking up our subconscious because we've spoken about it. 

Jessica Fein: Well, and the other thing is this presumption that speaking about our children [00:14:00] is the hard stuff. Instead of, I want to be able to speak about my glorious daughter and not have it be negative all the time. Like for me, yes, it hurts because she's not here, but I want to talk about her.

And it's been really interesting in this environment at this conference with so many people who get it. Because if you mention a child, whether it's a child with a rare disease, a child who had a rare disease and died, what I find more often than not is that somebody will say, what's your child's name?

Show me a picture rather than I'm so sorry. Yes. Because I'm so sorry shuts down the conversation. 

Amanda Griffith-Atkins: Yeah. Yeah. But there's like an element of celebration. Like I want to see your picture. Like, what does she look like? I want to see her brown skin and her beautiful hair and. Then you feel like, yes, her life mattered.

Like people remember her and her essence is still here, but to shut it out. I'm so sorry. Oh, how did she die? I'm so sorry. Right. Well, at least for this many years or whatever. Right. Yeah. The complexity of it all. It's not all bad, but it's not all good [00:15:00] either. And I think like as humans, if we can accept that complexity, like that's the essence of life.

Jessica Fein: Exactly. And it's with everything. It's not just with these kids. I can say there's a lot of hard stuff. Obviously in a different class, but with my other kids. Absolutely. 

Amanda Griffith-Atkins: Yeah, absolutely. And I think like the, the more kind of, we can integrate the complexity, the hard stuff, the good stuff, the more we're able to kind of live life in this really rich and full and like kind of vibrant way.

Jessica Fein: Yes. I could not agree more. So what about this whole pressure to be a special needs warrior? 

Amanda Griffith-Atkins: Yes. I mean, I felt that early on, I felt like number one, I'm not ready to be around other families that have a child with PWS. I just felt so scared to enter into that space. I don't fully understand it even still.

I don't feel it anymore. But I remember when he was little, I felt like I'm too afraid to see what it could be like. I'm just not ready yet. It's like, I want to enjoy my six month old baby. As this [00:16:00] precious little baby, I don't want to be afraid of the future, you know? And so there was like a PWS walk and, and I was like, I don't know if I can go.

I guess maybe it was denial or something. I just wasn't totally ready to be the special needs warrior. Like now that's my identity. I just felt like it's a part of my identity. It is advocating for people with disabilities, like advocating for my son, fighting for justice in that sense. But there's also more to my personality.

You know, I love horror films. I love animals. You know, I never wanted to lose sight of what made me unique as a person and have it be totally consumed by being a parent. Not only a parent to a child with a disability, but my other kids too. I mean that. I hope that doesn't come across the wrong way because I think there's some people where it's like, Their identity is being a mother and that feels completely filling to them.

And that's wonderful. Like I, in fact, I think my own mom that her identity would be like, she was a mom. She did not work outside of the home. She was in the home [00:17:00] and like kicked ass as a mom, you know, but I always felt like for me, that doesn't totally feel like that's the full me. And so when I had a son with a disability, it felt like even more pressure to suddenly become like mom of the year and be like, okay, now not only are you a mom, but you're a mom to a child with a disability.

So you better be out there fighting. And I didn't want my identity to be consumed by that. And again, I want to be careful here because I do think there's some parents that they feel like that is their identity. And I'm thankful for those people because those people have paved the way for people like me.

And those people are the people. You know, that are here like researching and making differences in our kids day to day life. So I'm so grateful for those people. And I think there's a sacrifice involved in that, you know? And so it just was something where I didn't want my identity to be Asher's mom only felt like that wasn't my calling in life.

Jessica Fein: A hundred percent. 

Does that make sense? 

Jessica Fein: It totally makes sense. And actually, I personally agree with you. And I have [00:18:00] models in my own mother and in my mother in law of the two different kinds of mothers that you mentioned. One where that was Absolutely. What she wanted to be, I want to be a mother and everything else was going to fall in line behind that.

My own mother always worked outside the home and very much was many, many, many things and a mother being among them. And of course, one of the most important, but yeah. And I followed that lead. So how do you, when Asher's needs take so much of your energy? How do you protect the other parts of your identity?

Amanda Griffith-Atkins: That is something that has taken time for me to figure out. And a lot of it has hinged on my marriage and partnering with my husband to be like, we are co parents. We are on the same level. You have all the doctor's phone numbers. You take our son to appointments, you know, like we are equal partners in carrying the mental load of parenting.

And that's taken a long time for us to figure out. We've really had to challenge gender roles and [00:19:00] equity and marriage early on. I took on all those sort of traditional, like I'm making the doctor's appointments. I'm in charge of dinner every night, like these sort of more like traditional mom roles. But as our relationship has evolved, he's stepped into some of these more domestic roles for our family.

And honestly, a lot of it is because he's better at it than I am. He's a great cook. Like I'm not a good cook.

Jessica Fein: Okay. I will just say that I have not cooked our family dinner in, I don't know, maybe a decade. Nobody wants me to be the one cooking dinner, right? It's terrible. And for us, my husband was a better hands on medical caregiver.

He just was. And I don't diss myself in that it's that he really just was exceptional. And people were so surprised by that. The doctors, the nurses, the therapists, they would always say, Oh, you know, they would like log this praise on him because they hadn't seen it.

Amanda Griffith-Atkins: Yes. Same with us. Asher recently had spinal fusion surgery.

It's a huge surgery. And just simply because [00:20:00] of our personalities and my strengths and his strengths, he stayed at the hospital overnight. I am like anxious around medical stuff. So, you know, there's father of the year. Well, staying in the, in the hospital overnight, I'm coming in at eight in the morning, bringing this coffee.

And I could tell the nurses were like, Oh, wow, dad, dad, you know, and I'm just like, yeah, dad, and honestly, that has really helped me and helped us to be able to be like, we're equal. Like if he wants to go to a guy's weekend for the weekend, go, I'll figure it out. And exactly at the equals, if I want to be gone for the weekend, I'll leave and he's got the kids.

So I think kind of forging this partnership that helps us to both be able to carry the mental load of the family has been a huge part of me being like. I have an identity apart from being a mom, 

Jessica Fein: Which in fact is as a marriage and family therapist. So how, how did this kind of rejiggering of roles and figuring it out with you and your husband inform your [00:21:00] work as marriage and family therapist?

Amanda Griffith-Atkins: Yeah. Well, the crazy part of the story is that when Asher was born, I ended up quitting my job for three years to stay home with him as a baby. And I really thought I will never have a career. Like I had my master's degree from Northwestern university, like accumulated all this debt. His career was doing great.

You know, he's an accountant. He was working at PricewaterhouseCoopers like just totally kicking butt. And I'm like, yeah, I'm, I'm the stay at home mom. Like this is the lot we've been given. This is what's happening. And then we had my second son and I was like, you know what? I want to go back to work. And so I joined a small group practice, kind of like started getting my feet underneath as a therapist.

And then after a few years, I was like, I'm ready to start my own practice. And so I started my own practice. And now almost 10 years later, I have 30 employees at my practice. They're all therapists. And it's been the most rewarding experience to be able to find myself As a therapist, and I don't specialize in parents of kids with [00:22:00] disabilities.

I am a couples therapist and specialize in all sorts of grief and loss. Mostly I specialize in grief and loss around partner, parent or child loss is sort of my passion. That's why your book speaks to me so much. I'm like, Oh, we have a lot to talk about. That's the funny part is right. That like grief is interwoven in parenting a child with disability too.

It's not the grief of death always. Sometimes it is, but it's other forms of grief too. And so I think that time in my life where I saw all of my cohort get licensed and start practices and develop specialties, and I was still unlicensed and a stay at home mom. And what I always tell the new therapist on my staff is that I love hiring people whose trajectories are different.

Like it took me seven years to get my license. I didn't start a practice until I had been out of grad school for a really long time. But that trajectory has made me into a better therapist because I got life experience, which is something you can never learn in a classroom, right? To meet with people, to talk with people who have experienced, whether it's a child with a disability or just such resilience in our [00:23:00] stories and being able to not only see that in my clients, but also experience it firsthand.

That's been the most transformative teaching experience that I could ever have is living this life and then being able to. Just keep putting one foot in front of the other and eventually be like, I have the career that I've always wanted and I worked really hard for this. And so it feels like very affirming to not only have the career, but also just have it inform every part of my client work.

It's just been amazing. 

Jessica Fein: Well, I think your clients are so lucky because I feel like I would so much rather have a therapist who has experienced life in its entirety. Exactly. 

Amanda Griffith-Atkins: Exactly. Cause that's the stuff you can't teach. Right. It's like the life experience. 

Jessica Fein: Yes. With that, you have built outside of the practice also this community, a really important community of parents who face these kinds of struggles.

What kinds of support are these parents most often missing? 

Amanda Griffith-Atkins: I mean, I am daily blown away by my [00:24:00] Instagram community. It's just been so transformative to me to just connect with real people that are all over the country that I'm like, We get each other in this like deep, deep way. Like I always joke, I post something.

I'm like, here's the one that's going to get me canceled. Like, this is the one everyone's going to know. I'm a bad parent. Everyone's going to judge me. And then it's like comment after comment, that's like, Oh my gosh, yes, this is me. Yes. I feel this. And I'm just like, this is me. Oh my gosh. Like they think I'm helping them, but I'm like, no, you guys don't get it.

Like your affirmation reminds me that I'm not alone in this. I just think the number one thing that is missing is truly just validation and being like, you're allowed to feel this way. It doesn't make you a bad mom that you have days where you wake up and you're like, I can't do this today. Or you have days where you wish, man, I wish my child didn't have this diagnosis that doesn't make you a bad mom.

It makes you human. And if we can connect. Whether it's as women or as men or just humans, you know, if we can connect on this, it just gets us through the hard [00:25:00] times and helps us become more joyful people and helps us become better parents, better advocates, better partners, you know? And so I really think just creating a space where people are able to talk about the hard stuff.

It's amazing how It's so simple. It's such a simple idea. And the things that I post, it's not rocket science, right? It's like people say, I could have written this and I'm like, yeah, you could have written this. You didn't.

Jessica Fein: Right. That's like when you're in the museum and it's like, I could have painted that and it's like, well, you should have.

So what do you say or what do you do when you have those mornings where you wake up and you're like, I cannot do it today. What do you do?

Amanda Griffith-Atkins: Yeah, I mean, and I have those, those moments a lot. I really do. My favorite thing to do is just like text one of my friends and just be like, yeah, like today's kicking my ass or like I, you know, I'm really struggling today or it's been a really hard day.

You know, I wish my son didn't have this disability, like really just saying the thing that it feels like I'm not allowed to say. And then I talk through it and I'm like, you're right. He's so cute. You know, we're like, oh, you're right. I love you so much. I hope he's having a good day. I just want to hug him when he gets [00:26:00] home, you know, like just naming it, you know, psychiatrist Daniel Siegel says, name it to tame it.

I think about that all the time. Name it to tame it. It's like, If I wake up and maybe it's just I'm PMSing, I'll just wake up and be like, Ooh, not a good day. I'm struggling today. I'm angry. I'll literally tell my husband, like I'm PMSing. I'm crabby today. I just, it's not you. It's me. You know, and just really just put it out there.

Text a couple of my friends rough day to day, you know, Oh my gosh, I'm so sorry. Like, you know, text me tonight. Let me know how you're feeling. You know, just like simply naming it sometimes goes shockingly far. And then once you name it, you can think, what do I need? Like, what do I need today? You know, do I need to go for a run?

Maybe I need a little more low key day. Like maybe I need to just, you know, try and grab coffee with a friend this week or next week, you know? So once we can name what it is we're feeling. And that's surprisingly hard to do because we're wired to push this away. Again, that goes back to the toxic positivity, right?

We're wired to just be like. Okay, I got a busy day at work. Just keep going. I don't have time to think about that. That's just going to bring [00:27:00] me down if I think about how bad I'm feeling. But whether you're consciously thinking about it or subconsciously thinking about it, it's there. Like the feeling is there.

Right? So you might as well give it some air time. Give yourself a little self compassion like, yeah, today's a hard day, man. We really started out rough. I shouldn't have yelled at Asher like that. I feel so guilty about it. Right. Naming the emotion. I feel embarrassed that I have this Instagram platform and then here I am yelling at my kid behind the scenes.

If only they knew they would never want, you know, let yourself go there a little bit and then just. Stop and access your inner therapist or your inner best friend that can say like, Oh my gosh, of course you're having a rough day. His behavior was off the chain. Like, you know, that was unhinged. Like, it makes sense that you feel upset.

What do you need? What do you need today to kind of recover from that? Right. And then maybe I do need to go for a walk or maybe I do need to like, just grab a coffee and sit down for a second and chill out. You know, Be your own ally, be your own best friend, you know, right?

Jessica Fein: Like we [00:28:00] know what to say to our best friend when they call us with this.

And then when it's ourselves, we do such a number. We feel guilty for feeling the feelings. We don't know what's going on instead of saying, okay, what would I tell my best friend? 

Amanda Griffith-Atkins: That's right. What would you tell your kid? Right? Like parent yourself, right? Like you want to sit down and watch your favorite show, watch your favorite show for a minute.

Take a minute. Most of the time, the world can wait. Truly, most of the time, you know?

Jessica Fein: Is it the feedback that you got from your Instagram platform that made you decide, okay, there's a book here? How did you get from all the many, many, many things you're doing to I'm going to put this in a book? 

Amanda Griffith-Atkins: The biggest thing, honestly, was that, yeah, I just felt like my Instagram community, it just felt like it was resonating with so many people.

And I was like, I want people to have like a handbook on how to care for themselves. And I'm not perfect. I don't always know how to care for myself, but I feel like between my training as a therapist and my lived experience, I had wisdom to offer people on like, at least just checking in with [00:29:00] themselves and getting to know themselves better.

That process that I explained of like naming your emotion and then caring for yourself. It felt like I have wisdom to offer here and it's not earth shattering. It's not anything that's rocket science. But it's a really just simple approach to be like, how can I integrate the joy and the sadness of a parent to a child that caring for this child has totally flipped my world upside down and all the guilt that even just saying that, right?

Like, yeah, no, as, as parents of kids with disabilities, we need to be out there. We need to be wearing the ribbon. We need to be like, this isn't hard. This is my passion. Right. But it's like, no, this is hard. This is really hard. And you're allowed to say it. And so. I think just the, the way that it was received by my community made me think I want to offer this to more people in a really accessible way that truly has the potential to change people's lives and just give them self compassion and they can turn to the chapter on health anxiety and be like having a child with it high needs and maybe in and out of the hospital a lot has perhaps like ruined [00:30:00] someone's barometer of emergency. How do I deal with that? How do I even begin to take the steps to deal with that and rewire my brain? Well, let's talk about trauma. Let's talk about how your brain is wired. Let's interview some experts on this and give you some information that's very accessible.

It's easy to read. It's not a long book. I want this to be something that's helpful to people. And then my publisher workman is the same publisher as what to expect when you're expecting right that we all got out of the baby shower. And my hope is that this book, if you get a kid with a diagnosis, this is the book that your best friend sends you and that you're like, Oh, this is what I need.

This is like balm for my soul. And I'm reading this and I feel like I'm getting coffee with a good friend. I don't care how many copies sell. I don't care if I ever make a cent from this book. I really just want parents to read it and be like, Whew. Like, take a deep breath.

Jessica Fein: My only problem with everything you're saying is I just wish, wish I had had this book like 10 years ago.

Amanda Griffith-Atkins: Oh, I feel the same way. And actually, as I read your book, I felt that too, because I was like, I feel seen by reading your story. And that's what it is, right? As moms and as caregivers, [00:31:00] by reading somebody's story, and I'm reading about, you know, your anxiety in the hospital as Dalia was in the ICU, and I'm just like, man, I know that feeling.

I know that rollercoaster. I know that feeling of being like, why did I have to call on a friend? For me to get this attention, like, what's wrong with the system? You know, I know that feeling. And I think there's such healing in simply sharing your story and finding that connection and there's healing in that.

Jessica Fein: So we're at this conference and the theme is that “there's no place like hope.” How do you remain hopeful? 

Amanda Griffith-Atkins: I think, honestly, I feel the most hope when I connect to other parents. I mean, even you, like, you know, your child isn't here with us anymore, but it's become your mission to share these stories. We have to find our resilience, no matter what we've been through.

You know, we have to keep putting one foot in front of the other, and we have to do that in a way that connects us to our community. That is honestly how I find hope. And by like seeing Dalia's little face in that picture and meeting people's kids and, you know, just seeing [00:32:00] beauty in disability and seeing just the humanity and all of it to me, just like gives me hope to keep going and gives me hope to find beauty every day.

Even on the hardest day to be like, I mean, we're here, we're still here. We're in this room here talking about some really hard things, but like, it also feels so connecting. There's such beauty in vulnerability and all of this. And truly when I meet someone in their vulnerability, I see hope because to me, there's something so human about that.

There's something so raw and so human to be like, we are brave enough to talk about the hard stuff. And truly that's life. Like that just feels like what's more human than struggling and hardship. It's not all sunshine and beautiful days. A lot of life is struggling, whether you're in the disability community or outside of it.

A lot of life is just learning to keep going when things are hard and trying to do it in a way that preserves your dignity, you know, and I feel like that's the essence of all parenting. That's the essence of life in my opinion. And so just to do that with other caretakers. [00:33:00] Who get it to me is just such an honor and honestly gives me hope.

Jessica Fein: Well, talking to you gives me hope and it has been such an honor for us to have you on the show. So thank you. 

Amanda Griffith-Atkins: And now I get to go back to my hotel room and finish your book. 

Jessica Fein: Yeah. So we better wrap this up so you could go do that. Thank you. 

Here are my takeaways from the conversation with Amanda. Number one, stop starting sentences with “at least.” When someone shares their struggles, they do not need comparisons or silver linings. They need acknowledgement that what they're going through is hard. 

Number two, name it to tame it. Instead of pushing difficult feelings aside, try explicitly naming them. Today's kicking my ass, or I'm really struggling right now.

Number three, treat yourself the way you'd support your best friend. When you're having a rough day, ask yourself, what would I tell my friend in this situation? Then give yourself that same grace. 

Number four, challenge the pressure to be a warrior parent. Your identity does not have to be consumed [00:34:00] by a single role.

It is okay and healthy to maintain other parts of who you are. 

Number five, create partnerships in caregiving. Whether it's with your spouse, another family member, a friend. Look for ways to share the mental and physical load of caregiving. Challenge traditional roles if they're not serving your family's needs.

And number six, when somebody shares their grief or struggles with you, resist the urge to fix it. Instead, try sitting with them in that hard place and simply saying, This really sucks. I'm here with you. 

Thanks so much for listening to today's show. If you could take one minute and rate the show, Review it, subscribe, any of the above, or all of the above.

That's the best way to help other people find out about the show. Have a great day. Talk to you next time. 

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