Overcoming the Lead Cloak of Perfectionism and Embracing Support for Special Needs Moms with Kristin Faith Evans

When the weight of perfectionism feels like a lead cloak, it's the raw, honest stories that can lift it off our shoulders. That's exactly what Kristin Faith Evans brings to our table this week, as we navigate the deeply personal terrain of motherhood to children with special needs. Her voice, a blend of vulnerability and strength, breaks through the silence on the mental health crisis among special needs moms, illuminating the tough yet rewarding journey that lies ahead for many.

This episode is a tapestry woven with the threads of shared experiences, where the barriers of seeking help are pulled back, revealing a landscape that many special needs moms traverse in solitude. Together with Kristin, we peel back the layers of guilt that often accompany the pursuit of self-care, underscoring its non-negotiable place in our lives. As we discuss the stigmas within conservative Christian communities and the scarcity of resources, the conversation is an open door for every listener who has felt judged or alone in their struggles.

Kristin's insights serve as a compass, guiding us through the expectations and self-inflicted pressures that can overshadow the joys of parenting. We celebrate the power of positive self-talk and the gentle art of embracing imperfection. Whether you're a mom knee-deep in therapy schedules or a friend standing by in support, this episode is a sanctuary for reflection, growth, and unwavering support—a reminder that no one should walk this path without a hand to hold.

Contact Kristin Faith Evans
Website: https://disabilityparenting.com/
Instagram: @disabilityparenting (https://www.instagram.com/disabilityparenting)
Facebook: Kristin.Evans.5895 (https://www.facebook.com/kristin.evans.5895)
X: AuthorKristinEv (https://twitter.com/AuthorKristinEv)
LinkedIn: Kristin-Evans (https://www.linkedin.com/in/kristin-evans)

Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/

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Transcript

Speaker 1: 1:54

Hi, I'm Cara, life coach, wife and mom to four incredible and unique children. It wasn't all that long ago that my son received a diagnosis that had my world come crashing down. I lacked the ability to see past the circumstances, which felt impossible, and the dreams I once had for my life and family felt destroyed. This forward has many years of surviving and not at all thriving, and you'll see a mom who trusts that she can handle anything that comes her way and has access to the power and confidence that once felt so lacking. I created this special needs mom podcast to create connection and community with moms who find themselves feeling trapped and with no one who really understands. My intention is to spark the flare of possibility in your own life and rekindle your ability to dream. This isn't a podcast about your special needs child. This is a podcast about you. If you are a mom who feels anxious, alone or stuck, then you are in the right place. Welcome, Hello and welcome to the special needs mom podcast.

Speaker 1: 3:07

I am happy to bring to you a guest episode with Kristin Faith Evans. Kristin is an award winning author, speaker, licensed master, social worker and mother of two children living with rare genetic disorders and complex needs. So Kristin has some solid credentials and what particularly led me to want to talk to Kristin was that as a social worker, she had worked with families that were on the other side of you. I feel like this leads to really authentic conversation and she even blew my expectations. I feel like what you can expect in this episode is a really deep level of authenticity and vulnerability. She shares her story very, very openly. It's interesting because I prepare for episodes and kind of dig up, not dirt at all but like dig up, like what I think is interesting about people and she shares.

Speaker 1: 4:06

She couldn't do it all. She was kind of into a mental health crisis but she gave us a real view of what that looked like for her and all those things that helped her get through it. She shares a lot about her journey in self care and what that really looks like. She has some really brilliant insight. She talks about perfectionism and she shares just her story with us. I think anytime we get the privilege of hearing another mom's story that it really, really enriches us and can transform us Before we get into the episode. In just a few days.

Speaker 1: 4:39

So this is coming out on January 24th and just in a few days, on January 27th, we are going to be having the Purge Party. This is where Angela Obrine and I, from a few episodes back, we decided to combine forces and we're hosting this. What we're calling Purge Party. It's a co-workshop. It's a workshop where we're coming together to support you to accomplish a very tangible goal in your home. It can be around a specific organization, project, area of your house, just any particular thing that has been on your list of like oh, I got to do that thing, or there's this pile on the corner, or even if you don't even know what it is, we can help you get there and to kind of bringing this, the ideas that we're going to come together and have fun and bring different energy to it, then just you trying to tackle it on your own.

Speaker 1: 5:26

We're asking $40 for the whole workshop and you'll get both of us, you'll get community and you'll get two hours of really rich time. So please don't hesitate to sign up, and you can sign up using the link in the show notes. Okay, well, let's get to the conversation with Kristen. Well, kristen, I am very thankful that one of our co-Instagram friends introduced me to you and I'm excited to have you here today to speak to the community. Welcome to the podcast.

Speaker 2: 5:59

Thank you so much, Kara. Thanks for inviting me, yeah definitely.

Speaker 1: 6:02

Well, let's start like I always do and let's give everybody a little bit of a snapshot, a little picture of a day in the life, or really just a picture of you as a mom, as an author, as a social worker, as a wife, as a prolific creator. As I look at all the things that you have done, tell us a little bit about that.

Speaker 2: 6:18

Yeah, so I never know what my day is going to look like. So a typical calm day. I have two children with different rare genetic disorders, totally unrelated. Our 17-year-old son was born in the 14th case in the world with his metabolic disorder, has really fought his whole life and has become very resilient. When he was three I became pregnant with our daughter Bethany Grace. She is now 13. She was born with a sporadic, severe chromosomal deletion on the fifth arm, called Creedy Shaw Syndrome, and basically they told us there was no hope for survival. She did. She has come back from multiple medical crises. She's intellectually disabled, cognitively more like a two-year-old, medically fragile, has a feeding tube For home from the hospital. We're grateful. So my life is on a calm day when everybody's healthy and home. I write and speak and just advocate for other caregivers who have children with disabilities. And I've been married 22 years to my husband, todd.

Speaker 1: 7:28

Congratulations. Thank you.

Speaker 2: 7:29

I'm about to celebrate my 20th.

Speaker 1: 7:31

I'm excited about that, congratulations. I know we're like doing something, we're going on a trip and everything. We're going big. Oh, that's good, that's wonderful, yeah, okay. So I think, having the picture of the complex medical care you have and the intellectual disability and then all the other things that come in between, and trying to kind of fit in the author speaker. Social worker time, do you still actively work as a social worker?

Speaker 2: 7:57

So I do not work outside the home. When COVID first began, with our daughter being very medically fragile, her doctor said no, you have to isolate. So I had to quit. I was actually PR in a crisis counselor going into ERs and homes. Obviously, that was not going to work with COVID. That opened the door for me to finish a book, write another book, begin speaking, and so it has turned into this lovely flexible job that I'm doing.

Speaker 1: 8:26

Isn't that amazing? You could never probably predicted of how that would all go, because I'm sure it wasn't like your first choice at the time. But here you are, three-ish years later. So one of the things you share with me as we were, you know, talking and preparing for the episode is that after your daughter was born so you know, so you had a three-year-old who had complex medical needs and, boom, you had more and you had shared that you had spiraled and you kind of came to this place where you couldn't do it all physically, emotionally, relationally, spiritually. You shared that your marriage crumbled and you were very angry and distant with God.

Speaker 1: 9:02

So I'm particularly interested to talk, if you're willing to kind of go back to this place and just share a little bit more about that season. And the reason I want to talk about this is, I think, a lot of people find themselves at a season like this, and probably not just one, I think, recognizing that typically, you know, if I look at like a graph of kind of the peaks and the valleys of moms like us, we're not going to just see one big peak and one big valley, we're going to see many in between, maybe some bigger peaks in some certain areas, but I think there's going to be a lot of peaks and valleys that kind of bring us to our knees essentially. And so if again you will talk a little bit about the season and what had you declare that, wow, I'm an, actually a mental health crisis. Yeah.

Speaker 2: 9:46

So you know, obviously I can see a different looking back. But at the time, you know, deep down I knew I was in the hospital two months pregnant with Bethany Grace just nightmare pregnancy and traumatic delivery. And I knew at the time I probably needed help while I was in the hospital because I was already suffering from post traumatic stress disorder. But after she was born in the NICU, three months, we're trying to keep life somewhat stable for our other child. There just wasn't time I told myself to take care of myself. I even remember the social worker in the NICU saying you need to go home and take care of yourself. I was still healing physically.

Speaker 2: 10:27

And then, after Bethany Grace came home from the NICU at three months old, that's when it really began to spiral. And you know, having very, very broken couple of hours of sleep does it help the trauma of her going back to the ER back and forth, you know. So I've got this perfect storm of the trauma, the chronic, intense stress, postpartum depression. My husband and I just completely couldn't even figure out how to talk anymore. So I knew I needed help.

Speaker 2: 10:58

But for several reasons I didn't go. One, we didn't have the money. Two, I couldn't leave the house because she could go into crisis at any moment. Three we lived in a small town. My husband was a youth pastor what would people think? Four, which we've worked through this my husband just did not see Then I needed help how serious it was. So I kind of went deep down inside myself somewhere in this dark place and unfortunately I waited 13 months to finally go for help and when I did it was really almost too late and tragic. I actually made a very serious suicide attempt and I was so glad to be alive. Doctors could not explain how I had survived here. I've been given a second chance, but then I come home to the same chronic stress and grief. So I was back in that same situation, trying to figure out how to live and how to want to live.

Speaker 1: 12:00

Wow, I think that's a powerful place to look back to, because you're clearly not at that stage now, and so thank you for sharing so openly about the level of darkness in which you were walking through. So I want to just recap kind of some of the barriers that you had into getting help and I heard money couldn't leave the house, small town as in fear of like whoa like what do we do with all this?

Speaker 1: 12:29

And that your husband didn't support you. Andra wasn't aware, so I don't know whether he didn't support you or he just didn't realize. You kind of said he wasn't aware, but ultimately that comes bent down to like he just didn't support you in the way that you needed it, anything else. I missed there that you would add to the barriers that you had.

Speaker 2: 12:46

I think shame just feeling like something's wrong with me. I'm not able to take care of my daughter and my other child and keep the house going, keep my marriage going. If something's wrong with me, I'm a defective, bad mom for feeling this way, for thinking these thoughts, and I think that can keep moms from the guilt and the shame from really being courageous and stepping out and saying no, I need help.

Speaker 1: 13:16

Yeah, 100%, At the time where you already. You weren't a social worker at this time.

Speaker 2: 13:21

You've got your trans sense, okay? No, my husband and I actually went to grad school for ministry at this time.

Speaker 1: 13:28

Okay, that makes a lot of sense, something that actually didn't click for me till recently and I wanna share because I'm like actually it's really helpful. I've heard often that shame is very common as a trauma response and I'm like, why, like, why are the two connected? And the way I've learned to describe it or to understand it is that something happens to us essentially and we have a trauma response, meaning the experience that we're having in our nervous system creates the experience of trauma and we make it mean something about ourselves Instead of something like this just happened.

Speaker 1: 14:01

we make meaning to it and then usually make it mean, like in your case, like something's wrong with me, and so that, for you, is the manifestation of the shame. Is there anything else you would add to that of what's been helpful for you along the way in understanding the relationship between shame and trauma?

Speaker 2: 14:16

Yeah, so I've actually been through specialized trauma and treatment. That is actually very effective for special needs moms and medical moms. I movement, desensitization, reprocessing, yeah.

Speaker 1: 14:28

EMDR.

Speaker 2: 14:29

for some of you, we've talked about it on our podcast here and basically your brain gets stuck in this loop with the trauma and then you keep reliving it and whatever message you formed about yourself, your thought about the trauma, goes along with it. And a lot of trauma treatment is reframing what you tell yourself and how you see the trauma and closing that loop and resolving the trauma and a healthier and more realistic rational message that we tell ourselves.

Speaker 1: 15:06

Yeah, the visualization I have is it's almost like landing the plane, like the plane swirling around that, trying to make sense of itself and resolving trauma is actually landing it right, cause there's no erasing what happened. It happened. It's just kind of landing it in a way that makes more sense or maybe, better said, it's a more empowering story after you land the trauma plane. Well, thank you so much for sharing that. You've shared some of the stepping stones, but stepping stones to help you move beyond that place, right. So it sounds like probably it was a pretty big wake up call for you to get home after your suicide attempt. What were those stepping stones that you look back to that were the most pivotal for you?

Speaker 2: 15:47

So I started seeing a new therapist and she basically said to me you know, I was just trudging through misery, just trying to reject my reality and just get through the day. And she said well, I see three options. You can keep doing that, you can try to kill yourself again, or you can begin to accept and embrace your life as it is as a complicated special needs mom. And I walked away thinking that's too hard, I cannot, acceptance is just too hard. And we tell her messages about acceptance that if I accept it, then I'm saying that's how it should be and things like that which you know aren't true about acceptance.

Speaker 2: 16:27

I had to come to a choice. I basically had to make a choice that I was going to choose life, and I didn't know how I was gonna do it. I was gonna choose to trust God, even though I couldn't understand how he could be good and allow my children to suffer and us to suffer. So it was a choice to begin to embrace my life and accept and choose joy. And then, obviously, I've worked for years in therapy as well.

Speaker 1: 17:00

One of the things I hear here is it was not a one step process.

Speaker 1: 17:05

It was sounds like many small choices of choosing life in many therapy sessions and probably still many moments of darkness. Right, it didn't change overnight, but I think it's pretty clear that you're in a very different place now than you were then. So it looks like it works and that's good news. So we talked a little bit about what your barriers were to getting help and, because you worked in social work, you were kind of on the other side of being available to help. But then actually witnessing because I see this all the time I witness moms have conversations desperate for help and, for whatever reason, they don't actually end up getting it. And I know some of the reasons. But I'm curious if you would add any more to the list that we already came up with, because you even you said early on you're like, yeah, I probably already needed help when I was in the hospital prenatally and you very clearly distinguished that you said I told myself, indicating to me that, like you knew that wasn't true, but you did tell yourself that story.

Speaker 1: 18:10

So I wanted to hear any other thoughts you have about like what stops moms like us from actually getting help.

Speaker 2: 18:15

Yeah, so a large portion of special needs moms do not seek treatment, and even more so those who have conservative faith. It's even fewer. Oh tell me about this. Yes, I'm a research jury.

Speaker 1: 18:30

Okay.

Speaker 2: 18:31

I gotta hear about this.

Speaker 1: 18:31

Working on my next book.

Speaker 2: 18:33

This is a big one In general. There are so many barriers for special needs moms in general, but specifically Christians in general. But then the more evangelical that the church they attend or they're conservative, their faith is even fewer. Down to a small percentage of these moms seek treatment. And fear is a big one for both special needs moms who don't practice faith and Christian moms. Fear of what will people in my church think I have weak faith. It's because of my sin. If I would just pray harder, if God doesn't heal me, then he's punishing me. I've done something wrong. I just need to have stronger faith.

Speaker 2: 19:17

The stigma in not every church I don't wanna make it sound like that and mental health is becoming more of a topic for sure in churches, but if you go to a pastoral counselor in a very conservative church, it's only a faith issue, and I find this in some books as well. And that mental health, that professional mental health piece is never addressed, which is biological, chemical, a medical disorder. We have chronic stress hormones that change our chemical makeup, our brain wiring and stress hormones that is all sorts of things to us In balance, and brain chemicals. So it's when that piece is not addressed then you don't learn the coping skills, you don't reframe your messages and you cannot truly break free and live a full emotional, mental and spiritual life.

Speaker 1: 20:16

So yeah, I'm very passionate about this subject I get, so you can tell like I'm fired up over here. I got chills of fury many times as you were just speaking. I think you've done such a good job, like you've obviously done more research than I have. I've just kind of seen it from different angles. It infuriates me because faith is very important. I've been very. You know I'm Christian as well and to see this I mean the word that I use for this is actual spirit abuse. It's like using God against somebody. This does not work for me.

Speaker 1: 20:46

I also see this in the messaging about self care right, because whether we like to whether we'd like to admit it or not, many of us women still struggle with caring for ourselves, Even if we say, hey, it's important. There's a lot of lip service right now about mental health. I'll use our hospital as an example. Everyone's like mental health is health, right, and yet my hospital for my son has zero, zero access to mental health for him.

Speaker 1: 21:15

Okay so that's kind of where we're at in the world, I think. And so, coming to this, I think a lot of us are, as you said, like we're starting to talk about it. We're starting to kind of break through. We're noticing that we have this internal messaging that's like it's hard to break. So then we add in some messaging from the church, and so, actually, one of my friends is also an author with your publisher, and so she has an Instagram following and the conversations about self care and the typical messaging from conservative church background is that it's selfish. They still believe that you should suffer the guilt, and I'm like, I'm sorry, how was that helping anybody? I don't understand, it doesn't make sense to me and it breaks my heart because I think it is just so ingrained in a spiritual culture versus, actually, I think, what God wants for us. Okay, I could talk about this all day long, cause, again, it really does. It breaks my heart. It also makes me quite upset. Anything else that you would add, as we kind of move on to a different topic.

Speaker 2: 22:16

Yeah, I think that shame, which is actually ironic, because the more we care for ourselves as moms, the better our children's outcomes are.

Speaker 1: 22:26

And self-wise and developmentally.

Speaker 2: 22:28

That is the catch and I think the way we define self care. You see posts on Instagram of the hot topic of self care and it can feel like a slap in the face when someone says to a special needs mom well, you just need to take a respite break. Well, I don't have a caregiver so I can take her, you know, a respite break. But I think the way we're defining self care is we're making it more complicated than it is Brilliant. The National Institute of Mental Health defines self care as basically doing things to improve your physical, mental, spiritual, emotional health. That can be as simple as choosing an apple over potato chips. It can be as simple as doing a three minute deep breathing exercise. These things can make a tremendous difference. It's not going for a spa day. It's amazing if you can go for a massage, if someone would give you that gift. That is something that really helps lower stress. But I think we're just making it too complicated.

Speaker 1: 23:31

That's so well articulated. I appreciate you saying that because, yes, it's so true. We are over complicating it and also I continue talking about it, even though I now always tell my audience okay, stop, don't run away, don't roll your eyes After you're done rolling your eyes because I know that's kind of how you feel about it at this point stick with me, because we can't stay there Like we just can't.

Speaker 1: 23:54

It's not going to work for us. I also talk about how, if you create what you need as a mom for yourself, like, you're going to be able to give your child a million percent more than if you don't. And we all want the best Like. The whole idea is we want the best for our children and that's what we're all striving after. So why wouldn't you do like the one thing, that like helps everybody the most, and there's reasons why.

Speaker 1: 24:15

So let's go back to the question I asked you what else do you see that stops moms from getting more help, more mental help specifically?

Speaker 2: 24:23

Yeah, I think you really touched on. There's this I feel like this mentality of we have to do everything and sacrifice everything to take our children to every single OT appointment, every single doctor's appointment, do every single behavioral intervention at home, and when there's a gap in the schedule then I'll go to counseling. That gap never happens for us, and so there's that feeling like I need to be spending every single minute helping my daughter and then I think it just gets put down the list. Put down the list. And there are so many barriers. I don't wanna make it sound like it's easy for people to go.

Speaker 2: 25:03

And there's online therapists too that are reputable. I don't recommend any online therapy group, but there are clinical therapists who meet clients in person, but they also, since COVID, that has opened the door for telehealth, and so I don't wanna say we make excuses. I know I did, yes, I had all these huge barriers, but at some point we just have to make the decision to find a way to make it happen. Yeah, I don't wanna be harsh, but at the same time, our children's lives our lives and our children's lives literally depend on us taking care of ourselves.

Speaker 1: 25:43

Yeah, I totally get that. It's like this is not intended to add in any more guilt or shame of like you're not doing enough right, like we very much don't need any of that.

Speaker 1: 25:52

So here's the thing I would say to mom's listening If you notice that this conversation is landing in a way that you're feeling more guilt or more shame, the invitation is to get curious with yourself, to bring some kindness and just to notice, wow, I just feel so distinctly not enough, and so the lens that we are hearing everything is going through that, and what Kristen and I want you to know is that there are some of their options, and sometimes getting outside of your own brain can be the thing that really, really helps. So obviously we use different modalities. I use coaching to support moms, use writing and different modalities, but I guess the idea here is we want to hold in complete compassion where you're actually at and call you forth.

Speaker 1: 26:45

So there's this like duality, right, like I don't like the term tough love, but I guess that's one way of saying it. What are your thoughts on? I hear a lot of this and I push back against it to some degree is that there's a concept of if a therapist doesn't understand, as in has not walked these shoes, they can't help me? What are your thoughts on that Cause I know that you have supported families that have children in our category, if you will, and I'm sure you've supported many others.

Speaker 1: 27:13

So what are your thoughts on this? And what would you say to a mom that's like, oh, I can't find somebody who is the right fit through my insurance and that I can make an appointment with, and has a child with disability or medical complexity or whatever the thing is?

Speaker 2: 27:29

Yeah, so I have both personal and professional experience. It really is a personal topic because I've learned that one. We don't have to have experienced the same hard story and experiences Anybody who has experienced loss or pain. We can still empathize with others, even if we haven't been through exactly what they have been through. There is a shortage of therapists who are trained in working with parents, families and couples who have children with disabilities and I will say, unless they have known somebody been through it or been trained, there's a lot of differences in therapy sessions with these parents than with typical parents.

Speaker 2: 28:18

One of my therapists, who I have not seen for years, I said in the very beginning. I said, and this was in Bethany, grace was like three in and out of the hospital all the time. I said, you know I might have the session scheduled and then she's in an ambulance an hour before I'm supposed to be there. That's just my life. Are you going to be able to work with that? And she said no, that would be treatment interfering and I'm still going to charge you the $225 fee and that right there. You know I was like okay, she just doesn't get it, I guess.

Speaker 2: 28:53

And there's therapists who really just don't get it. And I'd say, if you meet with that therapist, then yeah, it's probably not going to be a good fit. You need a very empathic therapist, whether or not they know what you're going through or not, because a good therapist is there to be that support, that empathy, that guide to help you work through your pain and grief and emotions, and so it doesn't have to be a therapist who has that experience. It helps. It definitely helps because they get it. But it's going to be very challenging to find a therapist with all that criteria. There's no perfect therapist.

Speaker 1: 29:36

And I want to actually share a little bit of my personal experience because it similarly matches yours and also I want to say it's not black and white right. So a therapist that I had seen a couple of years ago was really great to have a therapist on board at that time in my life because Levi had just got re-diagnosed with a recurrent brain tumor.

Speaker 2: 29:57

So that sucked.

Speaker 1: 29:59

And I was great to have a therapist already on board that was going to journey through that with me and very helpful, right. So there was a lot of good that came from it and ultimately I moved on from her as my therapist because of something very similar to that. It's interesting because it's the principle of it. It's not the money, because I reimbursed my insurance for money, so I paid $10 out of my pocket for my therapist, which is amazing, right. But there was a time where I woke up and she had no, I mean, we had worked together for long enough that she saw what we're dealing with and I asked to cancel the session day of and she said, okay, that's fine, just so you know, I'll still charge you. And I'm like, yeah, that doesn't work for me. And again, it was more principle. It wasn't the money Like this was not going to be coming out of my pocket, like the $10, right.

Speaker 1: 30:53

And for me, though it just told me you don't get me and I no longer feel safe with you, because it really bothered me.

Speaker 2: 30:59

It took me a second to work through that.

Speaker 1: 31:01

So I wanted to share that story because there can be both. This person could not be the right fit for us at a certain time and they can also help. I guess what I want to encourage us all to do, myself included, is to kind of hold this open-handedness of like okay, well, what is available, Like. So maybe this person isn't the thing, and this is with friendships too. Maybe this isn't the person that can understand this part of my life, but, gosh, they're good at this other part over here. I think it's just helpful for us to maybe just have that flexibility with people and relationships and to kind of be unstoppable when it comes to getting help for ourselves.

Speaker 1: 31:37

A lot of thoughts there we have. It looks like combined experiences. I think yours is just a little bit. I think we both know that being and working in this space, there is a lot of expectation or pressure or even like these societal norms in this subgroup that I'm starting to notice and I'm just kind of watching it. I don't necessarily have any conclusions at this point, but I'm finding it interesting. I wanted to see what you see as like these expectations and pressures from society, from friends, families and even from our own special needs mom or parent community.

Speaker 2: 32:12

Yeah, that is very complex to tease apart. I think in general, moms especially fill the pressure from society to do it all and then to do it all perfectly. Some of us are perfectionists, which makes our risk for anxiety and depression even higher. So you've got this standard that moms do it all and do it all well, and then keep being okay, and then I think especially needs for moms.

Speaker 1: 32:41

I love that saying we do it all well, we do it all, we do it all well and then we keep being okay. That last part, that was brilliant. I love that.

Speaker 2: 32:50

Yeah, and I think there's so many moms who don't have children with additional needs, who are struggling. They're struggling to do it all and a lot of moms are not okay.

Speaker 2: 33:01

And then as special needs moms I know for years I put that same standard on myself, that same societal expectation on myself and then from moms who don't have additional needs and then from the moms who are doing really well, who have four children with special needs or seem to be doing really well, which I think a lot of us act like we're doing really well, may even be thinking ourselves we are and we're really not. So what I say to parents there's no perfect parent. There's a good enough parent. There's definitely no perfect special needs parent. And once we realize we can't do everything perfectly, we cannot do every single therapy, doctor's appointment, treatment that is possible to do for our children. We can't do it and we can't do it all perfectly, that's free.

Speaker 2: 33:53

And to be able to say you know what, I'm struggling to do it all and not isolating in that shame, there is a definite expectation and then from this one really gets me. We're blessed to have parents who are very supportive my parents and Todd's dad. But I know so many disability parents have lost the support of their parents and their family and some friends because of the expectation, well, your child should behave in a certain way. You know it's just you need to parent better or they don't have a diagnosis and so you've got that expectation as well from family that you're not parenting well enough. So it's coming at us from all sides, those messages that then we internalize and take on ourselves and tell ourselves.

Speaker 1: 34:45

Just this formula that, as I was kind of thinking about our conversation, about this idea of expectation and its role in our life, and you might have heard it before, but it says happiness equals expectation minus reality. So if, like, we have these expectations that are just so high and then, like reality is like so different, our happiness is going to be quite low or rated low, and then you know vice versa.

Speaker 1: 35:12

It seems like it's pretty critical that we really examine the expectations we have of ourselves and of others. Any thoughts you have on like what can be really useful or helpful to shift those expectations that we find ourselves having.

Speaker 2: 35:30

One of the first things that helped me was to learn that perfection is a fallacy. It's not possible. As part of being humans, we're going to make mistakes, we're not going to do everything perfectly. And once I realized that, that freed me to be able to tell myself I'm good enough, I'm being a good enough mom, and then I think, just doing our best, we're doing the best we can, doing our best, prioritizing and knowing that that's enough, that we are loving our child, we're caring for them the best way we can, and that's enough. We are enough, we are good parents.

Speaker 2: 36:11

And I think, just sifting through those messages, the expectations that are put on us, looking at the reality of our lives, lives validating our circumstances, our heart, it makes sense I'm struggling and can't do it all. And just having self compassion, being compassionate towards ourselves, like we would a friend who's struggling. We wouldn't tell a friend, well, you should be able to do it all. What's wrong with you? We wouldn't tell a friend that. So why do we tell ourselves that? And just reframing those messages that we tell ourselves and it's an and you've been alluding to, it's not black or white, it's a dialect there's always more I could do for my child and I'm doing the best that I can and all I can. And when we one clue to self criticism to pick up on is the words should and shouldn't. So when we tell ourselves I should be doing more, that is shaming ourselves. When we use and and we say I could be doing more and I'm doing all I can, that self compassion.

Speaker 1: 37:24

I love those two distinctions so clear and succinctly said. I want to mention this definition of perfection because it really hit the nail on the head for me, because I've always resisted the label of perfectionist Because I didn't fully identify with I want not, I'm not going for perfect, like I don't need it to be perfect. And actually I was on a podcast, the Lisa show, and then one of the fellow guests, lauren Lowry, think she has a podcast of her own as well. She's a special needs mom and she described the definition of perfectionism as I might get this not 100% right, but the idea was it's like the fear of not being enough or the fear of never being enough. And I was like, oh, she nailed it, that's exactly the difference, because it's not perfect, I want to be, but it's I never don't want to be enough.

Speaker 1: 38:15

And that I was like, oh, that's a good one. And so for any of you that you're like, well, I don't need to be perfect, but then the idea of not being enough or sufficient, or to have what you are supposed to have, if that is just for being a part, that's your clue, that we call that perfectionism, even though it's not perfect as you're talking, I'm thinking about so you know this idea of expectation and their social norms that we, you know, fall within, like or want to fall within, or try to fall within its human nature to do that.

Speaker 1: 38:44

And I shared it last week on the podcast which, at this, at the time this comes out, it'll be it'll have been in early December but that I chose to not give any of the teachers at our school Christmas gifts. Oh, I know right. And at the time I made a decision I felt like, well, this feels really good, like this feels like I'm honoring what I have to give right now in terms of my energy and capacity. And then, when I shared it on the podcast, I was like Whoa, I didn't expect like a little bit of like embarrassment to come up or like shame of like oh my gosh, what are they going to think about me? That I'm not doing this thing that everybody else does, and etc. Etc.

Speaker 1: 39:30

And I just thought it was really interesting to even and I kind of just wanted like model, like oh, this is what happens, like we make a decision that actually is a very empowered decision for us, where we're listening to ourselves and honoring ourselves, and then we go out and socialize it and we recognize, oh crap, I'm doing it different than other people around me and different can look like rejection or feel like rejection, and sometimes we have to just notice that and allow that level of discomfort. So I don't know if you have any comment on that, but I just thought it was funny how I really noticed that when I was sharing it on. I didn't expect it to come up. I feel like I was kind of proud of it and then I was like sharing it, I was like, oh my gosh, what are they going to think of me?

Speaker 2: 40:11

That really hits home because that's been on my mind. Bethany Grace's last half day is Friday.

Speaker 1: 40:16

And.

Speaker 2: 40:18

I have always, always back when she had tons of private therapists. I mean just, we used to bake before COVID.

Speaker 1: 40:25

Yeah.

Speaker 2: 40:26

And and now it's like we give a gift card, but the pressure because a lot of families don't have the money to give gifts. So here you are, feeling guilty because these are the people who were pouring into your child and they're the ones going to be, you know, working with them. I don't want them to resent me. You know that's not the motivation, but in the back of our minds. So I've been thinking, oh, I've got to get teacher gifts together the past three days and it's stressful. It's just one more added stress. And so I that's beautiful. You made that choice to do that. I appreciate you affirming that. That is beautiful because it's one. It's brave because it is going against the grain. Oh, what would other special needs moms think, you know? And but it's also making a choice for your family that if you're not stressed out about it, you're healthier and you can make choices to spend your time and money other ways. That was very empowering for you to say that. And so now I'm like, yeah, am I going to?

Speaker 1: 41:28

get a teacher. Yeah, good timing. And you know, at the time this episode comes out, this will be like not as applicable, but I want to say it anyways because, guess what, you know, this won't hopefully be the last Christmas. We all, we all do this.

Speaker 1: 41:41

One of my clients and actually she is Jewish and so like she doesn't even celebrate Christmas, but clearly she wanted to acknowledge like that season of the year for the teachers and she, she's one of those people that just like over the top and amazing and like gives these beautiful gifts. And one year, when we were working together, she decided that she was going to write a letter, a heartfelt letter letter, and give that to everybody. And I loved that idea because I also guarantee that that letter meant more to all those people than a Starbucks gift card, because they got to really hear the impact of their work with her daughter and her, you know, like on what they really do, like the huge impact that they have. So, anyhow, I thought that was a brilliant idea. So I know that this is now January, so people would be like that would have been great to know a month ago, kara.

Speaker 2: 42:26

But well, there's end of the year. School gifts there you go, there you go. There's always the end of the year teacher appreciation. You know it always comes up.

Speaker 1: 42:34

Yes, yes, exactly so tuck it away, make a mental note, put it in your calendar to write the note for end of year instead of get a gift, like. Put it in like May 15, put it there. That's what I do sometimes If I want to remember something. It's like I go put it in my calendar for when it'll be appropriate and sometimes it helps. Okay, so we got to land this plan ourselves. We've got a lot of different places and I guess I want to just check in with you, like from everything we talked about, knowing, you know, our mutual love for this community and just pure desire to give out of our pain, you know, to give purpose to our pain Is there anything that we didn't talk about that feels really important for you to talk about today?

Speaker 2: 43:14

You know, I just want to say to the mom's listening.

Speaker 2: 43:16

You know, someone said to me about caring for Bethany Grace and in the hospital and talking to doctors and advocating listen to your mom's heart, you know, listen to your gut, which, since she said that to me, it has never been wrong with either of my children.

Speaker 2: 43:34

And I think if I had listened to my gut about myself and my own health back when I was pregnant and Bethany Grace came home, I would have not gotten as sick with my mental health and we wouldn't have gone through all that. And I think a lot of times we just put that voice about ourselves aside. And to listen to our voice about our children, our mother's heart about our children. And I just want to say to moms validate your emotions, allow yourself to acknowledge your emotions and give them a voice and if you're having that gut feeling or message, listen to it if it's about yourself, for what you need in order to be healthy for your child, and also just give yourself permission to fill those emotions and those thoughts and just be kind to yourself, like we talked about self-compassion, Care for yourself and be gentle, like you would to a good friend.

Speaker 1: 44:41

And I want to loop back to what you said earlier, to apply it to that, and it was about self-care and we make it too complicated, and what I want to add to what you said is that you have to care for yourself and be kind to yourself, and even 1% more kindness matters. So this doesn't have to look like this, like complete pivot. This can look like just a little different way of showing up for yourself, of talking to yourself, that inner talk, and, like you said again, it doesn't have to feel that complicated and if it feels hard, maybe turn towards where it feels easy. Sometimes we forget that there's like an easy path out there and we just sometimes have to follow that. Well, thank you so much for sharing your story with us, your brilliance, your mother's heart and your clear love and care for this community. So thank you very much.

Speaker 2: 45:33

Thank you Cara.

Speaker 1: 45:34

All right, but we'll see you all on the next episode.