(66) Feeling Other in Motherhood with Emily

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My guest, Emily, and I talk about parenting a special needs child – the real deal of it, not just the saintly “special needs mother” archetype that can only be endlessly patient. Emily shares about her early motherhood journey and how she knew something was different with her daughter, the endless searching for answers, the lifelong theme of “othering” she’s felt, and the elevated expectations, stress, and beauty that parents of special needs kids live with. We also discuss recurrent grief when milestones aren’t being hit, how she broke apart while trying to hold it all together, and she explains what “heterospect” is.   

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Brandy:  Hello Adult Conversation Podcast listeners! In this episode, my guest and I talk about parenting a special needs child, the real deal of it – not the saintly special needs mother archetype that can only be endlessly patient. My guest shares about her early motherhood journey and how she knew something was different with her daughter, along with the endless searching for answers, how her priorities shifted as a mom, the lifelong theme of “othering” she’s felt, and the elevated expectations, stress and also beauty that parents of special needs kids live with. We also discuss recurrent grief when milestones aren’t being hit, how she broke apart while trying to hold it all together, how neurotypical families can be allies to families with disabilities, and my guest also explains what “heterospect” means. On to the show.

Brandy:  Today on the podcast, I’m so excited to talk to my guest who is a fellow writer and also a mother to her special needs daughter. She and I have had some pretty deep conversations about what her day to day life is like and the misconceptions, high expectations, and struggles that are unique to her and other parents of special needs kids. She has also gone through some shit and like many midlife-ish women is finding her agency, her voice, and is living a life that feels more authentic than ever, which we are going to talk all about. So welcome to the podcast, Emily! 

Emily:  Thank you so much for having me, Brandy! This is so exciting. 

Brandy:  Of course. Your voice sounds all prim and proper but we were just talking about how we feel like we’re the women from the Schweddy Balls skit from SNL {Laughs}. Just being in front of a microphone. 

Emily:  {Laughs} Hello Brandy. 

Brandy:  {whisper} Hello, Emily, how are you today? I first want to say to you and to all my listeners that I’m sorry that it has taken this long for me to cover this topic, including special needs kids and parents. Maybe I was waiting for you, Emily, and I didn’t even know it. Because when I think about who’s talking about the real, real about this, it’s you. So maybe I’m glad I waited. But I just want to put that out there because I feel like this is obviously an underserved group that needs a voice. So I apologize that I haven’t really given a voice to that specifically until now. I just felt like that needed to be said,

Emily:  Thank you so much. I really appreciate you saying that. It is a lonely journey sometimes, and we’ll talk about that more, but I really appreciate you putting this out there now. More and more voices are coming out of mothers who have children with special needs and I’m glad that that’s happening.

Brandy:  Yeah, I see it a lot on my Facebook groups too, some of the groups that I’m in. I’m just happy to be able to have the conversation with you. We have a lot to talk about. But before we do, what is one of the many (so fucking interesting) things about you that you think the listeners need to know?

Emily:  Well, in the last five years, I have gotten divorced, gotten remarried and gotten divorced again, and have been on this sort of circuitous journey of figuring out who I am, who I always was but didn’t really realize, and embracing my inner weirdo and rebel, and in the context of having a child with special needs. We do that together. So, yeah.

Brandy:  It’s actually a beautiful part of your story. Okay, so will you tell us how motherhood went for you in the beginning? What you thought it would be like and what it was actually like as you went to mommy groups and to the park and all those things, and were seeing other babies. I know we’ve talked about this, but I feel like it’s a really important part of the story that moms of children who aren’t special needs, like don’t really understand how hard this part is.

Emily:  Yeah, it’s funny. When I gave birth to her—the pregnancy was completely normal. I gave birth to her at home with a midwife. It was amazing. I have kind of a crunchy streak and a fear—not really fear of hospitals, but just I wanted to be someplace where I felt comfortable. Everything went smoothly. Then within the first couple of days, we started having some breastfeeding problems first off, and then she had colic. So the first sign that things were sort of different was that she was screaming all the time. Like, day and night. I was living in Brooklyn at the time, and I was part of this big group, this big mommy group who all had babies at a similar time. So, I was seeing how the other babies were developing. I went to this bougie baby class, like a baby movement class and I was starting to see—Some cool boutique in Brooklyn—But I was starting to see the other babies weren’t screaming through tummy time, they were starting to roll over. It was just—something was different.

Brandy:  Is that something you say in hindsight, because you know now what is different? Or do you think at the time—did you know this is more than just a colicky baby? Because I would imagine there’s people listening who are like, “I had a super colicky baby, and then they grew out of it.” So did you always have a knowing that this isn’t just colicky baby, this is something different?

Emily:  In the very, very beginning I think I just thought that she was really struggling, but I didn’t know for sure how. So one of the things was that she had torticollis, which, if you don’t know what that is, it’s like a crick in your neck, basically. Like if you sleep weirdly , you kind of wake up and you can’t move your head a certain way. That was one of the problems with the breastfeeding was that she was having a hard time feeding on one side. So in this long string of specialists that we have seen over the course of her lifetime, the first specialist that we saw was—Well, I spoke to a lactation consultant and she was like, “Well, if you have an infant who’s having issues like that, you either do physical therapy (good luck finding someone who will do that with a baby who’s like a complete newborn). Or you can try craniosacral therapy,” which I hadn’t heard of before. She’s like, “It’s very gentle.” I’m like, “Okay, well, I’m kind of crunchy, so I’ll give it a try.” So I took my 10 day old baby to this person who—I don’t know what he did, but it was like a very gentle chiropractor.

Brandy:  I did it with my daughter, too. Yes. 

Emily:  Yeah, and it worked! It didn’t fully fix things, but it made it so that she could feed on one side. So that was the first thing where it’s like, something’s a little weird, you know? That was the beginning of the searching. 

Brandy:  Okay. So it was like that just never stopped. You had that moment and then it was like, as you were going out in the world, you were noticing, “Okay, but this is different, too. Okay, but this is different.” So it wasn’t like you had it where it was like, “Oh, she’s colicky but then no, all these other things seem to be progressing as the other kids are.” It just kept validating for you, there’s something to look for.

Emily:  Exactly. Yeah. At the time, I didn’t know if I was just pathologizing my baby. We also had a bougie pediatrician who was very low intervention. 

Brandy:  {Laughs} Same.

Emily:  I’m not a high intervention person, but this doctor wasn’t really equipped to see markers for things that were out of the ordinary. So I was sort of left to figure it out on my own in a lot of ways. It was interesting, being part of this big mommy group, seeing how other kids were starting to develop. That was when I was like, “Okay, no. Something is definitely different here. I don’t know what it is, but I’m going to find out.”

Brandy:  What were you noticing with your daughter? What were the things—I know you said tummy time and not screaming, but then as she got a little bit older, what were some of the other things that you were noticing were happening?

Emily:  Well, first off, she’s not on the autism spectrum. She didn’t have classic autism things like not making eye contact or things like that. She was always very social, a connected baby. She just wasn’t moving. She just wasn’t moving like the other kids. And she was just a really tortured baby. Taking her to the park was difficult. She wasn’t moving like the other kids were and the gap started to widen. Right around nine months, all of the other babies, they were sitting up, they were pulling to stand. Then once a year came, everyone was starting to crawl. She wasn’t doing any of that. She didn’t start crawling until well after she was one, when all the other babies were walking. 

Brandy:  Got it.

Emily:  So it was apparent pretty early on that she was far behind and of course, what we got from the doctor, from friends and family was, “Well, every baby develops differently and don’t rush her.”

Brandy:  Which is so hard because for some of the people that will be true, and then for other people it won’t be. I so feel for you because to have it be your child and to not know, “Do I keep looking for something? Do I spend any extra energy I have going toward this? Or do I let it work itself out,” and not knowing what the right answer is. That’s a really hard spot.

Emily:  Mm hmm. Yeah. The other thing that was happening was that, she wasn’t a preemie, but she was pretty small. When she was born she was six pounds and she wasn’t growing. I was trying to figure out, “Am I not producing enough milk? Should I be supplementing?” But she was wearing preemie clothes for a couple of months. It wasn’t until later on that we determined that she has Growth Hormone Deficiency, and also low muscle tone, which means that she was having a hard time sucking breast milk. So that was the other thing. She looked younger than she was because she wasn’t growing. It was alarming because babies should be growing at a fast pace at that point. And also, she wasn’t doing the things that the other babies were doing. 

Brandy:  Wow. Just hearing you talk about that makes me feel like, “Wow, I’ve taken for granted with my own kids, that you just hit markers. And the feeling of not hitting a marker, and then what that does to the mom brain, especially an over-thinking mom brain. That, I’m just like, “Oh my gosh.” Just like, pit in my stomach thinking about—And of course, we all have stuff with our kids. Like, my son has some life-threatening food allergies and there was stuff at the beginning with my daughter, and stuff like that. So it’s not to say that there hasn’t been anything, but I think for other moms who haven’t gone through something like this, the hitting of milestones, we don’t know what it’s like to consistently not hit them, and then maybe berate ourselves like, “What am I doing wrong? Am I not making enough milk? What do we do going forward? What specialists do we listen to? Which one do we not?” And all of that. It just sounds like a lot. So I feel for you.

Emily:  I had all of the baby books that everyone has. It’s supposed to be like a follow along sort of thing like, “now is when they do this, and now is when they do that.” The further behind that she fell—I remember one night I was pumping, and I was sitting there reading the Dr. Sears book. 

Brandy:  Don’t get me started. But go ahead. 

Emily:  I was like, “She’s supposed to be doing this and she’s not doing this, and I’ve been pumping for 45 minutes, and I’m not making enough.” I got up from pumping and I threw away the book. I didn’t even give it to another mom, I just threw it in the trash. I was like, “This doesn’t apply, clearly, to our situation and I don’t know what does.” That book, I don’t know if it’s out there now, but it wasn’t then. There was no guidebook for where we were going.

Brandy:  So what was it like inside your head during this time? What kinds of things were you feeling in terms of like, maybe these were things that you didn’t express? Maybe it was confusion? What sorts of things about motherhood—”This isn’t what I was told it would be.” We’ve talked about this. You had an idea of what you thought motherhood would be and then you got in it and you were like, “This is not what I was told it would be like.”

Emily:  I didn’t really know what I expected. But when we got into the thick of it, I don’t know that I had much time then, to really feel anything. I mean, I definitely had postpartum in retrospect. Her issues with the colic, it made it very hard to bond with her because being around a screaming baby every moment of the day, pretty much, it makes it hard to want to be with your baby when that’s happening and when you don’t feel like you can help them. But at the time I was just on a mission. I don’t think that I really took the time to be on crying jags. Just knowing that things were off and being exhausted beyond belief, I was just on the mission of, “What is going on here and how do I help her?” That’s all that I could think about.

Brandy:  What was your marriage like during this time? Was that feeling supportive? Did that add to the problem? 

Emily:  Uh, yeah. No. 

Brandy:  I ask you as if I don’t know. {Laughs}

Emily:  Oh, you know. You so know. Well, let me just first off say, I have heard that the divorce rate among special needs families is higher than neurotypical families. I’ve heard up to 70%. If you don’t have a solid foundation, it’s very hard to succeed. So what happened was, my husband (her father) and I had been together for 10 years at that point, or a little over 10 years. But we’d never really had that kind of pressure applied in our relationship, and once that happened, it became very difficult, and we were both grieving in our own ways. I was grieving a motherhood experience with my baby that I wasn’t getting and there was so much confusion. Nothing was going right. So, we ended up turning on each other a lot. There were a lot of things that weren’t working in our marriage, but that really made things very hard. 

Brandy:  I bet. I’m thinking about moms who are in a similar situation as you, and I’m thinking about, is there any words of wisdom or anything that you would say to them in these early moments of trying to figure all this out? I guess the better question is, is there something you wish somebody had told you back then? Had whispered in your ear? Or is there something that would have made this a little bit easier, or would have given you some clarity or support?

Emily:  It would have been helpful if there were a book out there for mothers whose children whose babies weren’t developing normally to be like, “Okay, so here’s what you do. If something’s not right, you should contact Early Intervention. You should find a developmental pediatrician.” This information is not readily out there. Or at least when you’re in that sort of place of having a newborn where nothing is accessible. That would have been helpful. But more than anything, I wish that someone had just told me, “Trust your instinct. If you think that something’s not right, it’s not right. You know your baby.”

Brandy:  Did anybody ever tell you that along the way, or was it way later? Or did you have to just find that out for yourself?

Emily:  I kind of found it out myself. I think, later on, as I learned how to get more support for myself, I had more people in my life who said that to me, or who understood better, but I think at that time, I just had to figure it out. I’m a very sturdy person in some ways and so when I’m on a mission, and when I know something should be different, I’m just going to keep going on that path. There was a point when we did start supplementing, and that caused its own problems, because we learned that she was sensitive to dairy and sensitive to soy. I had to learn this the hard way and get hypoallergenic formula, which of course, costs more money and all of those things. I thought that she was experiencing silent reflux. She wasn’t spitting up everywhere, but she was clearly in pain. I remember going to the pediatrician’s office and being like, “What are we supposed to do? We’re giving her special formula. I don’t know, but she’s suffering. Is there medication? I don’t really want to do that, but is there anything?” 

Brandy:  Yeah, but you’re desperate. 

Emily:  The doctor was like, “Well, we don’t really do medicine.” And I broke down into tears in the pediatricians office. I was like, “You have to help me. This isn’t right. The fact that I had to break down was really upsetting. At the time my husband was—I think he didn’t know how to handle any of it and I didn’t really get the support in that moment that I think I should have. So it was a very lonely moment of like, “Something’s not right, we have to find something to give my daughter relief.”

Brandy:  What did the doctor say? Was there anything that they offered then?

Emily:  Eventually, she did write a prescription and it did help some, but I had to fight for it.

Brandy:  Ugh! And having to lose your mind in front of this person and then it’s like—

Emily:  This was definitely lesson number one, that was the first of many similar experiences in this journey.

Brandy:  Like, they won’t take you seriously until you’re bawling on the ground. 

Emily:  Mm hmm. 

Brandy:  That’s healthy and fun for everyone. Ugh. It’s just maddening. It’s maddening. Feeling “other” is a word that’s come up in our conversations around your experience as a special needs mom. Will you tell us more about that?

Emily:  Yeah. So I feel like it’s important, actually, to talk a little bit more about my daughter’s diagnoses.

Brandy:  Yeah, please do.

Emily:  She has intellectual disability, meaning she has lower IQ. Her mental age is lower than her biological age. She’s not an easy child to test, so we’ve heard different things about her mental age. It’s weird, because in some ways she’s younger, and in some ways she has qualities of her biological age. So she has that. She has a speech disability, it’s called Apraxia. It’s an oral motor issue. Then she has this whole satellite of different other diagnoses, and they’re all stemming from chromosomal abnormality. For a long time, I really thought that I had done something wrong during pregnancy. You know, there were all of these things where it was like, “What did I do to make my child this way?” At one point, when she was an infant, we went through genetic testing and found that she has a chromosomal abnormality which caused her brain to not form the way it should have during conception, resulting in these disabilities. So going back to your original question with “othering,” it’s very obvious, especially as she gets older, when we’re out that she is not like other kids her age. She’s 10 years old. She still loves to push around her baby doll in a stroller. It’s things that maybe some 10 year olds (kind of) are into, but it’s pretty obvious, I think. It’s hard to know. It’s hard to know how she’s perceived. It’s hard to know how any of us are perceived. 

Brandy:  Right, true.

Emily:  But I think it’s pretty obvious based on reactions that I have observed, that people see that she is different. Also, let me just say, she’s an extremely exuberant child, she lives out loud, she loves the wind in her hair, she loves being on the swings, and being her scooter, and she’ll squeal with delight. I feel like a lot of kids as they get older, they lose that magic. When we’re out, we’re out in the world in a big way. She’s out in the world in a big way. And I don’t consider myself a very typical mother in a lot of ways.

Brandy:  What do you mean by that?

Emily:  Well, first off being divorced is a whole thing. I have tattoos, I’m kind of into writing and more of an art person. I feel like I move differently in the world. I’m really passionate about things. When she and I are out together. I feel like, in some ways, we stand out. It’s taken me a long time to not only come to terms with that, but to embrace it. You know, she’s really taught me how to embrace being different and to be loud and proud about it.

Brandy:  Because you grew up feeling “other” as well, isn’t that right?

Emily:  Yeah. So growing up, my parents got divorced and I was mostly raised by my father. Being a single father in the late 80’s and early 90’s was sort of still uncommon. My father was in the military and we moved around a lot. It was me and my brother and my dad, and I was constantly the “new kid.” I had lived overseas for a few years, my mom wasn’t really in the picture for a while, and so there was always that feeling of being a little bit different. 

Brandy:  You said something before, when you said, “It’s hard to know how people are perceiving us when we’re out.” You and I have had this conversation of like, “Do other people feel this way? Is this something that’s unique to you?” Then you showed me that picture of the ballet class you were in and it was all these girls with pale pink outfits and then you have this spicy, red number on and you’re the only one with dark hair and all of that kind of stuff. So even when we start to question, we’re like, “Maybe everybody feels ‘other.”’ And then you’re looking at this picture like, “No shit! I was sort of different.” 

Emily:  {Laughs} Totally.

Brandy:  I just think that’s an interesting question about, “Are we really different? Is that just the way that we think we’re perceived, or are we?” I mean, I don’t know the right answer to that, but I just think it’s fascinating that you had that growing up as a kid, and then you’ve had it as an adult, too. But then your daughter is a layer that then adds to that. So at some point, it’s like, “Well, life, I guess you’re trying to tell me I need to get fucking comfortable with feeling ‘other.’ It’s become apparent this is a thing.” Right?

Emily:  Yeah, absolutely. And like I said in the beginning,  I’ve been on this journey in the last several years of embracing that and kind of figuring out, “Who am I? Who have I been? Who do I want to be?” Being “other” has been really integral in that journey and being like, “Okay, so maybe I’m not that different, but I sure feel that way.” That photo is so funny. That was when we lived in England when I was a kid. I was in a ballet class and for your listeners, I’m half Puerto Rican, so I have really dark features. It’s in this class with little blonde Susie’s and Louise’s, and here I am with my dark hair and red dress. That is definitely indicative of how I feel in the world. And with Agnes being so exuberant, it’s not like I can try to mask my differences, or hers.

Brandy:  Yeah, that’s where I think life was like, “If you were even going to try to mask anything, we’re just gonna have you live out loud. This is just what’s happening, so you either get on board with that, or you don’t.” Which is not not an easy lesson, and not an easy thing to just accept, especially if you’ve dealt with it your whole life. 

Emily:  Right, yeah. The other thing too, is, being on this journey of having a kid who is different and having medical issues and evaluations and the therapies and all of these things that this entails, it’s changed what my priorities are as a mother, I think, and perhaps in comparison to other mothers. Things that people fret about, I don’t fret about.

Brandy:  Yeah, like what? I know you’ve talked about this before and I always think it’s so interesting. It just really gives a perspective. I know that you talk about you hear other people worried about colleges for their kids or things like that and you’re like, “Yeah, that’s not even on my radar.”

Emily:  That’s the thing. I believe that Agnes will have—because I’ve worked really hard to to try to facilitate this for her, as has her father, she will have the best life that she can lead. But she will not be—I hope that she will go to some kind of college, but I don’t know what her future holds. She is not going to—we’re not gunning for the Ivy League’s or anything and that’s A-OK with me. I don’t think that saying that is limiting to her, I just think for me, for us as a family, being realistic about what her future might look like, is really important. So I’m not fretting about, “Is she getting in the gifted and talented program? Is she going to go to such and such school? Is she getting enough extracurricular activities? The things that I think a lot of families do fret about, because no one wants their kid to fall behind in this world. Everyone wants to see their kids succeed. 

Brandy:  Right.

Emily:  So things like that. Another thing that I really stopped—I don’t want to say stopped, but not as much give a shit about, is cursing. I really like “fuck.” That’s my word. And it’s said in all types of situations in my life, and recently, my daughter has picked up on it and so she’ll say it sometimes in context, which makes me really proud. 

Brandy:  Right, right. {Laughs}

Emily:  To me, it’s like, you know, she has a speech disability. There was a period of time where I didn’t even know if she would ever be able to say “Mama.” So if she’s saying “fuck you” when she’s mad at me, I’m kind of A-OK with that. {Laughs}

Brandy:  Yeah, you’re like, “Hell yeah, this is awesome.” {Laughs}

Emily:  Just hand me that Mother of the Year award. It just doesn’t faze me as much.

Brandy:  You know, sort of with feeling “other,” I know that you had said something like you feel like other people treat you like your problems are contagious. Like divorce, and special needs, and mental illness, and all sorts of different things. How does that feel? And how do you see that happening?

Emily:  I actually was recently kind of starting to work on an essay about this. What I try to do in my day to day life with people is to kind of drop in things in my life that are different. So a lot of the travels that I circle in—Or a lot of the circles that I travel in, sorry. I do know single moms. Coincidentally, I know single moms who have children with special needs as well, which is really comforting, actually. But a lot of the people that I know are married and have two kids or have a much more typical life. I have a custody schedule, I’m dating, I have a daughter with special needs who doesn’t go to soccer practice, she goes to speech therapy. I try to sort of drop these things in conversations, because I want people to know my reality. Not only do I want them to know, but I want them to grow comfortable with that language.

Brandy:  Do you notice when you say some of those things, do people—Do you have a method where you’re like, “Oh, that person bailed, they can’t hang with this part.” And then there’s the people who stick it out and then you’re like, “Okay, I’m gonna give them the final blow.” I don’t know what that would be. Like, you have your hierarchy of, “First I open the door with divorce, and then we go into—and then you’re like, “Okay, today’s the final level! Are they going to beat the boss level?” I don’t know. {Laughs}

Emily:  {Laughs} It actually is kind of like that. Oh my gosh, if my friends and family are listening, I hope they’re laughing because, yeah, it is kind of like that. I’ve been through too much and my daughter has been through too much for us to have people in our lives that aren’t really here for the whole package. 

Brandy:  Yeah. 

Emily:  So I try to be pretty forthright about these things.

Brandy:  No, I think that’s great! Weed people out quickly, so that you can, you know, not waste your energy on somebody who’s going to bail on you. I would be doing the same. One of the things that we’ve talked about that I’m always so appreciative that you are real about (and we’ve talked about how I don’t feel like a lot of people in your position are) is the elevated expectations that moms of special needs kids have. Can you talk about what those are? What it feels like? You basically aren’t allowed to outwardly show that you feel burdened in any way by your child, right? 

Emily:  Mm Hmm. Yeah.

Brandy:  Specifically because they’re special needs.

Emily:  Yeah, I’m supposed to be this beatific mother who takes everything with grace and makes everything look easy, and smile through it all, and only talks about the wonderful things about my child.

Brandy:  Like grateful almost, right? The “God picks special parents for special kids!” Right? That whole sentiment?

Emily:  Yeah. Which makes me so enraged. I just think it’s so invalidating. There’s a very popular—I guess it’s a poem—that’s out there in the special needs moms circuit. It’s called “Welcome to Holland.” The whole thing is you were planning a trip to Italy, and you were super excited to go to Italy, but then the plane landed in Holland and now you’re in Holland and now you just have to embrace that you’re in Holland and enjoy it for what it is. I just think these things do such a disservice to parents because (for mothers in particular) it makes you feel like if you’re struggling then you’re doing it wrong, and if you’re struggling then you don’t love your child for who they are. 

Brandy:  Right, and that exists for parents of kids who aren’t special needs, but then there is—When you said this to me, I was like, “You’re so right!” It does have a different—if somebody has a special needs kid—I’m probably different because I would be like, “Yes you have every right to vent, whatever.” Anybody. But it is right, people would look at that mom and be like, “Oh my god, you’re a monster! Your poor kid. They can’t help it.” But that doesn’t mean that the parent’s experience of it doesn’t have different layers, and that that parent doesn’t need to vent, or really, work through grief. I just feel like we don’t allow that part to happen. I would imagine it’s why special needs parents are probably so grateful to have each other because they can be real with each other. I would hope. But do you find that special needs parents are still not real with each other? Or do you find that they mostly are?

Emily:  It depends. I have some friends where we’re pretty real with each other. Truthfully, I don’t have a ton of friends who have children with special needs. Recently, my daughter started at a new school last year and I forged a nice relationship with a couple of her classmates’ mothers. That’s been hugely helpful and sweet. I think we’ve sort of built this rapport where we’re supporting each other and exchanging resources, and all of these things. But I’ve definitely come across mothers who don’t get real about it. And then that makes me feel terrible. It’s like, “Oh, she’s doing fine. Why am I struggling?” I think the other thing too, is when you see the subject of people with disabilities in the media or in the world, there’s a lot of fetishizing of the “overcoming.” Like, “You’ve overcome so much. You’ve overcome this limitation.” But when you actually get into the nitty gritty of what has been overcome, what the struggles are, and the day to day, I think that it’s uncomfortable for people. I think that it’s hard for people to wrap their heads around. It’s a whole other language that we speak.

Brandy:  What do you wish moms of neurotypical kids knew about your experience? What do we not know? How do we seem ignorant to what your life is like? Just an example, I remember you telling me about somebody who was maybe gonna have a playdate with your daughter, and then just completely bailed on you.

Emily:  Right.Well, if you have a child with behavioral issues, which my daughter has some, it’s very alienating in that, it’s hard for people to know, “Is this a result of you being a lousy parent? Or is it a result of legitimate medical, emotional, whatever, self-regulating, executive functioning issues? I see everything in a different light. For example, if someone’s like, “Oh, my kid really loves to be on the swing, and I can never get her off.” When I hear that, I hear, “Oh, she really loves vestibular activities. That’s a sensory thing.” Because this is the world that I’m in where everything has this name to it that I don’t know neurotypical parents really think about much. 

Brandy:  Yeah.

Emily:  But when you have a dysfunction of those issues, sensory issues, for example, then you do learn about these things. 

Brandy:  Yeah, right. 

Emily:  There are a lot of universal aspects of our experience. My experience as a mother and my daughter’s experience as a child. But it’s extra, you know? Everything is just extra. Your kid gets upset because you won’t give her candy. My kid has a violent tantrum that results in an hour long meltdown. You decided you and your kid are not able to do a playdate, or had decided not to do a playdate. My kid freaks the fuck out. It’s that degree of challenge that people don’t fully grasp.

Brandy:  Probably too, all the years that you’ve been trying to search for what was going on and all of that, I would imagine there’s a level of weariness that we all have as moms and not sleeping. I talk about this all the time, about how overwhelmed we all are. But then there’s a different level, a different layer that you would have, which is like, “Yeah, and also I’ve been trying to research what the fuck has been going on and how the fuck to fix it, and I’ve had to break down at doctors offices.” Moms of kids who are neurotypical are not usually having to do that.

Emily:  Right. Well, recently, I came across a research paper, because this is what I do with my free time, is I read research papers.

Brandy:  {Laughs} You do more than that, come on.

Emily:  Well, I do. I do more than that. But I mean, just in terms of trying to understand my experience and trying to understand my daughter’s experience. It’s an ongoing thing. How do we help her? What is happening with her now? But I came across this research paper recently called The Recurrent Grief. I think it was called The Recurrent Grief of Mothers of Children with Intellectual Disabilities. That term, “recurrent grief” was something that I didn’t really know before. What it talked about is, with every milestone that you know your child’s—because children keep hitting milestones as they get older. They learn to read paragraphs, or they can fully color in the lines, or all of these things with every point in their lives, that you see that it’s not going to be that story. It just opens up that wound again. So you’re grieving the next stage in life that’s not going the way you thought it would.

Brandy:  I feel like that is such an important part. And such an important part for us to all understand about parents in this position. I’m exhausted just thinking about the amount of grief that that really truly is.

Emily:  Yeah. And there’s also—she’s always going to need support through adulthood. I don’t know what that means. I don’t know if it means that she’s going to be living with me or her father, or in a group home? I don’t know. I think she’ll have a job. I don’t know what exactly that means. I just know that I will be actively parenting in a way that I hadn’t expected to for the rest of my life. So there’s just these layers of grief that you carry with you on a daily basis.

Brandy:  Yes! Absolutely. And so how do you cope with the stress and overwhelm of it all?

Emily:  Mm hmm. First off, let me just say that her father is a great father. He is really active, she adores him. Our co-parenting relationship became much more equitable after we got divorced, which I know you’ve talked about before. 

Brandy:  Yeah. 

Emily:  So that said, we split custody 50/50. So I am kid free—I mean, we’re always mothering, right? Even when we’re not with our kids, there’s always some level of mothering. But I have time without her here, to catch up on work and to do things that help me reconnect with myself. I exercise, I read, I watch movies, I write. A couple of times a year, I’ll try to go rent a fancy Airbnb with a hot tub, and just listen to music and be alone. Just alone in the woods. I talk a lot to my best friend, and not just about parenting, but about everything. Like I said before, I’m dating, I’m building a career, doing all of these things that are not kid related. I think it’s really important for all mothers to do that. It’s particularly important, I think, for mothers with special needs children, and I don’t think that most mothers get that opportunity.

Brandy:  Yeah, and they’re probably—if they don’t have a support system, that can care-take their kids, depending on the level of care that they need, it’s nearly impossible. One of my cousins growing up was high needs, special needs and in a wheelchair, and my aunt just never, I mean, never got time to just do her own thing, ever. You guys probably need it the most.

Emily:  Yeah. Truthfully, especially since COVID hit, but I’ve been kind of mildly agoraphobic some days. I think leaving the house can be—For example, my daughter the other day, she was at the playground with her babysitter—and she has selective mutism, which is an anxiety disorder. It’s like having a panic attack but instead of it being outward, she just shuts down and goes blank and is unreachable. This happened at the playground and it ended up being this 45 minute thing where she had her head buried in my lap in the middle of the playground. We finally got her home. We walked home from the park. There’s a lot of times when just the possibility of her having that experience and struggling to get her back home, it sometimes makes me not want to go places. 

Brandy:  Yes. 

Emily:  She had a meltdown at the grocery store a couple weeks ago. It just was too much for her and it was triggered by me not getting her the ice cream that she wanted and then it ended up being screaming and kicking on the floor in the frozen food aisle for like 20 minutes. So, this goes back to what is different about it and why it’s extra. It’s like, “Okay, your kid gets pissed off that you didn’t buy them the ice cream they like, but did they get face down on the frozen food aisle floor for a half an hour screaming and kicking?” A 10 year old, large child.

Brandy:  Right. I would imagine that you kind of get trained in your brain to do all of those sorts of things when you don’t have her. Because you don’t want to have to bring her along with it. 

Emily:  Yeah. 

Brandy:  Also, that you have to become okay with this kind of stuff, because you can’t control it. So like, how has that been—I don’t want to say “making peace with it” because I don’t know that it would feel like making peace with it, but like, accepting? I guess motherhood does this to everybody, in a certain way. We all have to deal with feeling uncomfortable in public with things our kids say or do or whatever. But I don’t know. When that happens—I can feel in myself, that happening, and I don’t know that I could just be chill. Have you been worn down over the years that now it feels like you’re almost desensitized to it? Or does it still bring, for you, panicky feelings? How are you in those moments?

Emily:  Oh, man, it really depends. It depends on how much sleep I’ve gotten. I don’t know, it depends on which way the wind is blowing. With the playground shut down the other day, I just wanted to be—I knew she was overwhelmed and I just wanted to be supportive to her. Part of that “othering” is this feeling of judgment, like “Why am I letting my grown child lay on the dirty ground?” You know, like that. I have to kind of mentally push past that and be like, “Well, this is what it is and she just needs me to be here and to just be reassuring to her.” But with the grocery store meltdown, there was a woman that came over who—Everyone else was kind of walking by and ignoring us and was like, “What’s the deal with that fussy kid?” I don’t know what people were thinking. But a woman came over and was like, “I work with children with special needs, what do you need?” And I totally broke down into tears.

Brandy:  Oh, my God! Totally. 

Emily:  It was me crying and trying not to panic in the middle of a grocery store with my kid crying and kicking and screaming, and trying to keep her from knocking over a grocery store display, and this woman trying to be helpful. So it really depends. At that moment I wasn’t my calmest, but in other moments I can be more steady for her. I always aspire to be steady for her, but I have my own mental health issues. I have my own depression and anxiety and things that I’ve dealt with over the years, so to manage my stuff and hers, it’s not always easy.

Brandy:  No, that’s one of the things with the chronic illness stuff that I have, that felt overwhelming for me was trying to keep a kid, and then keep two kids alive. But then also be doing all the detective work on my own body and trying to figure out what was working and what wasn’t, and meds and all these different things. That to have yourself have needs that are more than just basic needs and then your kid to have—I can’t imagine putting those two things together. I feel lucky, in a way or I feel like my experience could have been a lot harder because my kids were pretty straightforward.

Emily:  Yeah, a lot of days I feel bruised, drained, frustrated, sad for myself, sad for her. But then, interspersed with that is this pop of gorgeousness, this moment that’s so special and beautiful with her that—I think everyone has special moments with their kids, but it feels like an extra special moment when things are good with her and when we connect. There’s this term that I came across at one point, when she wasn’t reaching her milestones, called “inch stones,” where just the simple act—Actually, as I was preparing to come on here, I was watching the video of when she first walked. She was two, almost two and a half years old when she started walking. She had the assistance of a physical therapist who had been working with her for a year, I guess. Twice a week, intense sessions of trying to get her to create that muscle memory. When she finally stands up and takes the steps in the video, we’re all just celebrating.

Brandy:  Oh, I bet. Aw.

Emily:  It wasn’t like, “Oh yay! She’s walking, this is great!” It was like, “Oh my fucking god, she’s walking! This is amazing!” 

Brandy:  Because you didn’t know if it would happen at all right? 

Emily:  Yeah. So things are hard a lot, but when they’re good, they’re amazing. And she’s amazing. She’s a very funny, clever kid. She is very, very perceptive.

Brandy:  She’s like a shaman, right?

Emily:  She is like a shaman. I have been told this by more than one person. That she’s on some other level of understanding of the world somehow, it seems like. She picks up—she watches everything. Yeah.

Brandy:  Okay, I’m going to ask you this question and you can decide whether you want to go here or not. Can you tell us a little about how you broke? When you kept all of your emotions in about motherhood and your marriage and trying to be this idyllic wife and mother?

Emily:  Yeah. As time went on, her father and I kind of, I think we stopped running on adrenaline. I think neither of us could really figure out how to cope and to support each other, so a chasm grew between us. I started to realize that I wasn’t really, I guess I wasn’t really living my truth. A series of events happened that resulted in me having a mental breakdown. Basically, my life changed very quickly, and we got divorced. I was on my own, I hadn’t worked in six years, basically. I’d had a part time job in there, but I had given up my first career to be home with her, because I worked in the film and television industry and I realized quickly that I wouldn’t be going back to that, because she needed me to be home to take care of her. So, I was very suddenly on my own and coming to terms with everything. My own mental health issues, my daughter—Let me just say, too, it wasn’t like one day, we just knew. Like, “Here’s her diagnoses.” This was something that was excavated over time. Even though we knew when she was an infant, we had done a brain MRI, and we knew that there was a brain abnormality, it wasn’t clear until many years later, kind of recently actually, “Oh, she has intellectual disability.” It’s going to be very hard for her to learn certain things. This changes her future, in a very dramatic way. All of these things, they weren’t all at once that we figured them out. It was this whole thing. It’s ongoing. So I think once we started to realize the depth of this, I just realized I couldn’t go back to my career. I was lost. I just felt lost.

Brandy:   Yeah. Right. What you were talking about before, when I asked, “How did you feel during those early years of digging and playing detective?” And when you said, “It wasn’t about me, I was really just trying to figure out how to make things better for her.” I don’t think we realize the toll that that takes on us to constantly have somebody—to not be tending to our own needs and to not be processing. But also, how do you have the energy and the wherewithal to process that while you’re going through it? Motherhood throws so much at you, and then you take special needs motherhood, and there’s so much more in a different way, that I feel like what you’re talking about really speaks to—and I don’t know a different way to do it, really—But it really speaks to having all of that going on inside of you and then looking at a marriage that you’re like, “Wait, I don’t know that this feels supportive to me,” or, whatever was happening. It’s like, all of that stuff has to be tended to in some way, and it seems like if it doesn’t, it’s gonna erupt like a volcano, which seems like what happened with you.

Emily:  Mm hmm. Yeah, that’s definitely true. But I spent a long time not really seeing how anything could change and so, it happening in that sort of dramatic way, was somewhat of a blessing in retrospect. It didn’t feel like it at the time. It was a really difficult time, but there was a very definitive, “Okay, now you’re starting over. Now you’re starting your new chapter and you get to write that. Some of the characters, some of the things are not things that are changeable, but you can decide how you want to move forward with this circumstance.” 

Brandy:  Yes. Can we talk about “heterospect” here? {Laughs}

Emily:  {Laughs} Yeah. So one of the things that I’ve realized over the course of this journey of this “Midlife Renaissance,” as we’ve we’ve called it, is that I never realized previously that I am bisexual. That was something that I realized after my divorce, and have been kind of figuring out what does that mean, exactly? And how does that fit into who I am?But it’s funny, there’s a group that I follow that talks about figuring out in midlife that you’re bisexual or lesbian. There’s a term I came across called “in heterospect,” where you look back on certain things in your life, like, “Oh, I used to check out women, and I just thought that I admired them a lot, or wanted to be them, or just thought they’re really cool.” It was so far off my radar that it was like, “No, you’re attracted to her.” So, I was having this conversation with a friend, it’s really a representation issue. When we were growing up in the 90’s, we had Ellen, when she came out of the closet, and that was such a big deal in the media

Brandy:  Right. 

Emily:  That was queer representation for women. It just felt so out of the realm of possibility. I’d been on this very heteronormative track of like, meet a nice guy, get married, have a baby, buy a house. I think a lot of people are on that path, and sometimes don’t think too hard about it. I don’t think I thought too hard about it. That was the Disney Princess like, this is what you do. This is what “normal” is. 

Brandy:  Yeah, that’s what my other guests have said too, who’ve been in the same situation. “I just thought this was what I do.”

Emily:  Right. So yeah, in heterospect, there were some very interesting things. It’s so obvious now, and it’s very freeing to be able to embrace that now and to explore that. I don’t know. It goes back to the “othering” thing. Now in my “how are you a little bit different” scorecard, “Check! Queer!” {Laughs}

Brandy:  {Laughs} I’m laughing because one of my questions was, “How do you feel about heterosexual marriage?” Because we’ve talked about—We’ve had this idea for a movie or something. We just have this scene in our heads of you with this beater car with a leopard jacket, and a cigarette, and high heels, and big hair, and you just roll up to women’s houses who are in unhappy marriages, and you’re like,  “Get in, bitch, you’re getting divorced.” {Laughs}

Emily:  {Laughs}

Brandy:  I know, on some of the online groups that we’re in together, too—especially that one that’s—What’s that one that’s like, Tell Me I Need to Leave My Man, or something?What’s that one?

Emily:  Oh, yes. A Group Where We All Tell You to Leave Him, I think? 

Brandy:  Yeah, and I just laugh because I know that you’re like, “There’s so much more out there!” So how is dating women different? You were talking to me about how lesbian dating apps are just a dream, or bisexual dating apps? 

Emily:  {Laughs}

Brandy:  What is it like going from being with a man to women? Tell me more.

Emily:  Well, let me just back up and say, there seems to be a serious epidemic of women in unhappy marriages. I will also say, I didn’t always conduct myself well in my marriage, and there are definitely things that I would have done differently. But I think that there’s a universal experience that is happening, where women feel like they’re just not seen. And they’re not—They’re holding so much inside of them. 

Brandy:  Yeah. 

Emily:  We’re in this cultural moment where we’re labeling male privilege and all of these things. So I think that we’re seeing all of these posts on the internet and think pieces and all of these things where women are saying like, “Fuck this, this is not how I want to live. I don’t want to raise children like this. I’m not living my truth. I need to have space and support and to be understood. In terms of dating women, it’s really sweet. I mean, I don’t know. I won’t say that—It’s a little hard to talk about it in generalizations like that, because maybe it’s not always really sweet. Maybe it’s just me, I don’t know. But the experience that I’m having so far is it just cuts to a deeper level, I think, in some ways. It’s more rooted in the fuzzier parts of ourselves, and less so in the logical parts. I don’t know, it’s a little bit hard for me to articulate.

Brandy:  In a sense, are you talking about masculine and feminine? 

Emily:  I think it just is that, yeah. It’s just when you don’t have that power dynamic.

Brandy:  I was gonna say, need for power, need to kill, and hunt, and win? Like that? {Laughs}

Emily:  {Laughs} It feels like, yeah, the power dynamic feels very even. And that’s a really cool feeling. I mean, women can be shitty to each other, too, in the dating world. I’ve been ghosted, and stuff, which actually hurts more than being ghosted by a man. It’s like, “What’s up, I thought we connected!” But whatever, that’s how it is. But it does feel really nice. The other thing too, for me, is that I don’t see myself living with someone else, again. I guess, never say never. But I want to retain that sort of magical feeling of being with someone without the chores and shit. It’s nice to have a partner, but for me, personally, it’s nicer to have my own space and to not have that layer added on to a relationship.

Brandy:  Yeah, I understand that. That makes sense. Well, I’m happy for you that that has been a softer, sweeter experience, and that you feel like you are living this life that you’re supposed to live. One of the things that you had said to me is, “A lot of my transformation in life is about parenting Agnes. Having a kid who is different is also about me embracing my differences and ‘otherness.'” As hard as it is, because I know you’ve been through some hard times to get to where you’re at, but it seems like you really are at a place where you are able to be free in a way that you hadn’t been before.

Emily:  Yeah, I think people can kind of understand this in the age of COVID, where, when you’re faced with something that kind of alters your world (the world and your world) it changes your priorities and it makes you realize, “I don’t want to live the way that I was living before.”

Brandy:  Yeah. So how can those of us with kids that are not special needs—How can we be better allies to parents of kids with special needs?

Emily:  There’s a few things. One of the things that we haven’t talked about is school. When you have a child with special needs, your child will either have a 504 plan, or they’ll have an IEP, which is an Individualized Education Plan. If you know anyone who has a child with an IEP, you will know that it’s a really difficult process. Basically, you just have to fight for resources for your kid in school.

Brandy:  Okay.

Emily:  To get them placed in the right setting to for them to thrive. During the course of our journey, we weren’t feeling that she was getting what she needed from her school, and so I kind of got involved in education activism for a while in terms of fighting for better special education. I think one of the things that was hard is that we’re all fighting for better education for our kids, but the difference is, for kids who have disabilities, it isn’t just about are they going to be successful? It’s so much more basic than that. Are they going to speak? Are they going to be able to write their name? Are they going to be able to do basic math? Any of these things. So I think being a good ally—being supportive when it comes to that kind of activism is really helpful. On an individual level, I think just consistently checking in like, “Hey, Mama, how are you doing?” You know? 

Brandy:  Yeah.

Emily:  A lot of the difficulty of this journey is feeling like you’re not seen. That you’re struggling behind closed doors, that you’re shuttling your kid to therapies, or you’re dealing with IEP meetings where they’re treating you badly, or all of these things that it entails. It just feels like a very lonely road. So I think consistently checking in. Inviting us to playdates, or barbecues, and stuff. {Laughs} That’s really helpful. Even simple things like, I don’t know, send a meal train or something, sometimes. Even just getting dinner on the table  can be really hard, especially if your kid has behavior issues, and it’s back to back meltdowns, and you’re exhausted from the whole thing, just simple stuff like that is really helpful. And then if you see people struggling in public, ask, “Is there something I can do to be helpful right now?” That grocery store meltdown, when it happened, it was so fast that the grocery cart was still in the middle of the aisle, and I couldn’t step away enough to move it out of the way of other people because I was worried that she would knock over something, or whatever. Even something simple like that.

Brandy:  Yeah. 

Emily:  “Can you move my cart, please?” {Laughs}

Brandy:  Right. And how do you personally feel about, if our kids are at the park, you’re there with Agnes, and someone else is there with their kids, and their kid comes up and says, “She’s different.” Or points something out. “Why can’t she talk?” Something like that? How do you prefer that parents handle that?

Emily:  Well, I think that just saying, “Yeah, she is different. And that’s okay.” Maybe she communicates on a different level. What are some other ways—My daughter, you can’t really have a conversation (a fluid conversation) with her, but she loves to run around. She loves to talk about her baby doll, and to show it to you. She loves to swing, she loves to be silly, she loves when little boys do slapstick tricks, and just being really silly. There’s all sorts of ways to connect with her. Really what it is, is that people need to teach their kids to slow down, and to tap into a different way of existing. We all rush around, and everything can be so frenetic. I think that for kids with special needs, depending—Let me just say too, this is a very broad spectrum. 

Brandy:  Yeah, yes. 

Emily:  There’s a lot of different types of experiences, but for us, just slowing down and just being present, even just sitting next to each other. Maybe not every kid wants to do that, but—

Brandy:  Well, no. I think that that’s a good point is, having those conversations when they come up. I think probably what happens is the parent of the kid who says, “She’s different” or, “Why isn’t she talking?” is mortified, and so then they’re doing a bunch of backpedaling or, like, “We have to get going,” instead of maybe sitting in that like, “Wow, my kid just said this thing, let’s take a minute to learn or to connect here,” rather than have our uncomfortability of like, “Oh my god, I can’t believe my kid just said that. I’m embarrassed.” But actually, what would feel worse to this parent is if I just was so uncomfortable that I just left and didn’t connect further. Does that feel right to you? That even if somebody’s kid says something that maybe feels uncomfortable or embarrassing like that, it sounds like you’d rather have them stay—unless they’re total assholes—stay, and try to connect and learn about your daughter, rather than have somebody just pick everything up and leave because that was super uncomfortable.

Emily:  Yeah, definitely. I think if you could relate back to your own kids’ quirks, it’s really helpful. We’re really lucky that we’re living in a time when neurodiversity is a thing that people are recognizing and better appreciating. For me, like I said before, I see certain things in neurotypical kids and to me, I’m like, “Yeah, you’re kind of a little neurodiverse there.” 

Brandy:  Yeah. 

Emily:  We all have our quirks and so I think putting it into that context, like, “Hey, you know how you really hate it when your socks are bunched up?” I don’t know, something like that can be helpful.

Brandy:  Yeah, definitely. Emily, where can people find your writing online if they want to read some of your stuff? Do you have something like this setup?

Emily:  I’m just getting started on my writing journey. My father is a writer, it’s in my blood to be a writer, I’ve always done a lot of communicating that way, but it’s only been in recent years that I’ve started to actually write for myself. I’m currently working on a memoir. As you can imagine, it’s a difficult process under any circumstance, and particularly so being a single mom to a child with disabilities. So it’s slow going, but it’s coming along. I’m working on that, I’m starting to craft some essays that I’m kind of getting out there more, I have a page on media, but right now I have nothing official.

Brandy:  Okay. So, to be continued.

Emily:  To be continued. I’m getting there.Yes. 

Brandy:  Emily, thank you so much for sharing your story so openly with us, and for being vulnerable for the sake of helping other people who needed to hear this conversation. I always walk away from our time together having learned something new, and just so appreciating your point of view and your heart. You are just one of my favorites. So, thank you so much.

Emily:  Thank you so much for having me and for putting this topic out there. I really hope that other mothers who have children with special needs feel more seen. We gotta support each other, all of us.

Brandy:  Yeah, absolutely. I think conversations like this help everybody see what other people are going through so that next time somebody is at a park, and sees a kid that may have special needs, that they’re just a little bit more informed about it to maybe be a little bit more compassionate, whether that’s to the child or to the parent. Thank you for being a part of that conversation. 

Emily:  Thank you. Thank you for the opportunity. I appreciate it, Brandy.

Brandy:  A quick plug for my book, which as an indie author I got to do. If you’re enjoying this podcast, you will likely enjoy my book, Adult Conversation: A Novel. It’s a darkly comedic story about a frazzled modern mother and her therapist who go on a Thelma and Louise style road trip to Vegas, looking for pieces of themselves that motherhood and marriage swallowed up while they are also tested and tempted to make life-altering choices. Yes, there are strippers, there’s weed. It’s Vegas. One reviewer said, “Super fun, gritty depiction of, as the narrator puts it, ‘getting lost in motherhood.’ Brandy spins tales of finding the balance of helping yourself amidst mothering young ones in no bullshit language. The last quarter of the book is an empowering rush of, ‘Eek! What’s going to happen?’ I hate to see it end and loved a brief time to live vicariously through April’s busting out adventure.” And it’s also an audio book narrated by…me!

Brandy:  As always, thanks for listening. 

** As always, thank you to Scott Weigel and his band, Seahorse Moon, for providing me with that jaunty intro and outro music. You guy are awesome. Check ’em out on iTunes.