Navigating Neurodiversity and Special Needs in Parenting

Welcome to the unpopular PARENT podcast, where we help parents focus on what matters and let go of the rest. Today, we have a very special guest, Jeannie Ewing, a mother of five and the Substack writer behind I Grow Strong Again. In her work, Jeannie explores the complexities of love, loss, and identity, bringing a heartfelt approach to parenting that combines resilience, compassion, and self-awareness.

In our conversation, Jeannie shares her journey as the mother of a child with Apert syndrome and autism, along with her experiences raising children with other neurodivergencies like ADHD and OCD. She opens up about the challenges of advocacy, balancing the needs of each child—as well as her own—and her unique approach to parenting through empathy and gratitude.

Through her journey, Jeannie has developed a perspective on parenthood that’s both honest and deeply compassionate. Her unique story is a reminder that parenting is a journey, not a destination. I know this conversation will leave you feeling as inspired to be brave in your own parenting journey as it has left me.

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Erin Miller: Thank you so much for being here. You share your journey and the challenges that you faced in such an honest and graceful way, and you seem to always find room for gratitude in each of the experiences, which I just think is so unique. I thought you'd be the perfect person to help other parents feel less alone in their parenting journey, similar to the one that you're on. Because I think it's more common than people realize, but it also is very isolating. 

And I think that, on the flip side, there are a lot of parents who go through their day and don't even have a clue what parents who are in your situation go through. We all love our kids, and we all have kids who have challenges in different ways, but I think it's a way to bring us together.

And I just love your voice and I love the way that you articulate things. So thank you for…

Jeannie Ewing: Oh, wow. I appreciate that. That's a high compliment. Well, I feel the same way about you and everything you share too.  

Erin: Thank you. The other thing I want to say is while I was an inclusion teacher, I know that language changes. And I want to make sure if I ever say anything that doesn't bring dignity to this conversation, you correct me because I'm probably not the only one. So I just want to make sure that that door is open as well. And you probably would already do that, but the whole idea is for us to educate each other. And so I want to make sure that you feel the freedom to do that. 

Jeannie: Well, that's very thoughtful because I think it's actually the people who have the disabilities that really have that voice because some people don't like the word disability; they like different ability or abled or differently abled. And my daughter, Sarah, is at the age now where she has chosen how she wants to identify her diagnosis, and what she wants to tell people, and what she doesn't. So I don't really have a stake in that. I have tried to just be sensitive to the different conversations I've had with people who’ve had different diagnoses and just kind of listen for what they say and how they feel comfortable talking about themselves.

Erin: Would people be offended if you asked how they would prefer to be referred to?

Jeannie: Well you know, my experience is no. I think most people who have a certain sort of disability or diagnosis want people to acknowledge the elephant in the room.

You know, they don't want us to kind of tiptoe and skirt around it. They would rather that we have a genuine sense of curiosity, not something that's targeting their… maybe the way they look or the way they talk or their height or something like that, but something that's like really genuinely coming from the heart.

Like, ‘I really want to understand a little bit more about what your experience is, and I'm not exactly sure... I just feel a little awkward right now.’ I mean, just being honest about it…the way that I've noticed in my interactions with people, especially… I'm specifically talking about in the craniofacial community because my daughter, Sarah, has a craniofacial condition.

So that has kind of generalized, though, those experiences when I'm out in the world, especially with my kids. Cause, you know, kids have no filter. And so, especially when I'm talking about Sarah, who she herself is different, and she knows that now, and she's also autistic. So she tends to ask very blunt questions.

And so, as a mom, it's like navigating those awkward moments or intervals in conversations where  I just have to be honest with the other person and say, ‘Hey, you know, we have these conversations in my house. This is Sarah. She really wants to understand why you're in a wheelchair. You know, is that okay if we talk about that? If it's not okay, that's okay too.’ We can just say, ‘No, you're not comfortable with that.’ And so far, no, one's been like shunning that conversation. Usually, it's the opposite. Usually, it really opens people up and they actually end up kind of breaking the ice because we don't have to pretend like it's not obvious.

Does that make sense? 

Erin: Yes, it really does to me. I have a birthmark under my eye, and it looks different on different days, but it can look like a black eye sometimes. And when I go out and somebody will say something, it's either out of genuine curiosity and I always feel connected and want to have a conversation, or, they say something rude. And it's always so interesting to navigate other people and their abilities and capacity to have those kinds of conversations.

Does Sarah ever feel like, or do you ever feel like, you're having to manage other people more so than you are your own experiences and feelings in that moment? 

Jeannie: Certainly, but I would say that's more with kids than adults. We have had some encounters with adults where I just feel like, Really? They should know better than to stare and whisper or gawk.

I mean, that's kind of that experience you're talking about that's very different than sensing that someone wants an authentic connection with that person. It's more like an obvious ‘othering,’ like I'm separating myself from you, and you disgust me, and I'm repulsed by you. And to me, as a mom, that really, really hurts because now that Sarah is of an age where she's consciously aware of her physical differences, it deeply hurts her. And I have to navigate the fallout from those kinds of experiences and have those really hard conversations with her. 

But you know, when it's a kid…we've had experiences at parks and splash pads where kids of different ages will come up, and they'll start laughing at Sarah, or they'll point, or they'll say you look like a witch or something. And so if there are no adults around, which sometimes there are not, I will, I'll just intervene. And, I'll gently say, ‘Do you think that's kind to call someone a witch? I mean, I know that Sarah looks different, but everybody's different in different ways, and differences are good.’ Sometimes they get it, and sometimes they don't. But I think I have a little bit more leeway to give a child grace depending upon their age than an adult. 

So, there was one incident I could tell you where Sarah went with me to the grocery store, and there was an elderly gentleman who was standing behind us and I wasn't aware he was there because he didn't motion or clear his throat or say excuse me. He's just standing there. And so I was pouring over the different salad dressings and really intensely focusing. And when I found what I needed and turned around, I almost ran into him. I said, ‘Oh, excuse me. I'm so sorry.’ And he glared at us. And Sarah smiled and said, ‘Hi, my name is Sarah. How are you?’ And he just like went [grunt/groan] like that. And we just said, excuse me, went on our way. And then Sarah says, ‘Mom, why was he so grumpy to me?’ And I said really loudly on purpose, ‘Sarah, it's not your fault that he was in a bad mood. Sometimes people are just grumpy, and that's just how they are.’ You know, something like that. And so sometimes things just come out. It's that mama bear thing. That innate fierceness, that maternal fierceness, I guess. 

Erin: And does Sarah appreciate that type of response from you? Can you tell whether that helps her or is she more quiet after those kinds of experiences? 

Jeannie: From what I've understood. She appreciates it. She tells me, ‘Thank you, mom.’ She gives me hugs, and we often debrief in private. So because her diagnosis is so complex, I never really know how to anticipate the depth of her processing or when it's going to click. So most of the time when we have these kinds of encounters, it takes her some time, and then there'll be something else that activates that feeling in her…where I seem to think automatically like this is unrelated. Why is she upset about what happened at the grocery store a week ago when right now she's feeling jealous because her other two sisters are playing without her or something? You know, I'm trying to make this connection, and then as I ask the questions and probe a little bit, I find out that she's been mulling it over on her own or with her counselor. She has a phenomenal counselor who only deals with kids with developmental disabilities. So that's a weekly standing appointment where they can process together what it's like for her, her self-esteem, her social skills, all of those things. 

And we just kind of bring it home. You know, as a mom, I just bring all of that stuff home that she's going out in the world and experiencing, and Sarah is very honest with me. She tells me when something upsets her or if I didn't really meet her needs in her own way. [laughter] She says it in her own way. 

Erin: So you have four other children besides Sarah, so five total, and each of your kids is different, just like any other family. Will you tell us a little bit more about your kids and how you balance their differing needs? 

Jeannie: So we have three girls in a row. Felicity is almost 14. She has been diagnosed with ADD and OCD, so those are neurodiversities. And then Sarah is 11, and she has a primary diagnosis of Apert syndrome, but she also is on the autism spectrum, and she has ADHD and many other things. And then Veronica is 7. And she has ADHD. And then I have two boys-Joey is six and Augie is almost five. So, they don't have any specific diagnoses, but I guess I feel like now that we have these labels, I can kind of better sense if there's something that needs to be formally addressed or medically taken care of. And I don't really see that with my boys just yet, or maybe at all. So that's what I'm dealing with at home.

Erin: So how do you approach the different needs that each of them has?

Jeannie: Well, I think that's kind of one of the hardest things about being a parent in my experience. Because when I was preparing for the birth of my first child…I like to plan. I like to prepare...and so I read all the different primers that existed back then, like What to Expect When You're Expecting, What to Expect the First Year, Breastfeeding Made Simple, Healthy Sleep Habits, Happy Child…I felt like I had this great foundation of early childhood development. I had a knowledge base from being a student of psychology and counseling. And then I also had all this additional meaty research that I was getting from these books. So I felt overly confident. 

And what I found was once I had Felicity, and she right away had some gross motor delays, she needed physical therapy just to help her crawl and walk and meet those milestones, and then she had occupational therapy for quite a while for some sensory issues…and that quickly jolted me out of this facade that parenting could fit in these tidy containers, and my perceptions and expectations about being a mother were totally annihilated. I had to really start back at the basics of What does my child need in this moment from me? And I really had to dig deep within myself and reevaluate some of my own unresolved childhood wounds that kind of were projecting into this dynamic between my daughter and me. And I noticed how those were playing out on a daily basis. And so I was trying to actively work on myself and healing some of those aspects of my life and my past.

And in so doing, I had to acknowledge a couple of things. One is that I had to believe and still do that my child is meant for me, and I am meant for my child. There's nobody else… there's a reason why I was given this child, and she was given me as her mother. And so that helped me understand that the advice I was receiving, or kind of these generalizations from books, could be a little bit helpful, but sometimes they weren't. And I was okay with just kind of gracefully saying, ‘Thank you, but this is our family, and every family looks different.’ I had to also, number two, accept that I would have to just respond to the moment I found myself in. So there really wasn't a great way for me to prepare for some of the hard conversations or some of the unexpected things that you can't really anticipate…like I'm talking about Felicity right now, but I'm going to switch to my son, Joey, who licked a toilet seat at school. I mean…[laughter] never in my wildest dreams would that have ever crossed my mind. So, [laughter] just going back to this place in my psyche, where I can say, ‘Okay. I'm finding myself in this situation. What's the best way for me to respond?’ And I always wanted to go back to what's the most loving response.

And that doesn't mean I always do that when I'm dysregulated, when I'm super stressed and overwhelmed, which is pretty often. But you know, that's another thing I've had to learn is this whole concept of repair and reconnect. And that's not something that was modeled to me growing up. So it's kind of like building this new neurological part of my brain, this new wiring of myself. So to understand that when I blow up, when I explode, when I say something I shouldn't,  or I am inconsistently meeting my child's needs, I can go back when I'm calmer and clear-headed, and I can say, ‘I'm really sorry, that was not your fault.’, and listen to whatever my child needed me to hear. 

And sometimes that's really hard because I have a teenager who likes to tell me all the things I've done wrong and all the ways I've basically ruined her life. And you know, the knee-jerk reaction for me is to defend myself because she doesn't have all the information, and it's not possible for her to have the information. And at the same time, I'm remembering when my experience was invalidated from my parents when I was a teenager. And so I try to respond first and foremost with affirming and validating how they feel and listening to whatever they need from me, and accepting the responsibility when I mess up. 

Erin: Yeah, that's beautiful.

I’ve been talking a lot with my own girls about validating the feelings and dealing with the behavior separately. And there's kind of that sweet spot of doing both of those things so that you move forward in the situation and nobody feels stuck because the need wasn't met at the time. You summed that up beautifully. 

So how did you practice self-care? I mean, five children, that's a very busy life. [laughter]

Jeannie: It's a tornado, Erin, honestly. It feels like a storm because when you've got kids whose brains are wired differently, uh, the rhythm of your home is not necessarily calm and orderly, which is how I like things to be.

I'm more innately an orderly kind of a person. So there are little things I have to learn to do. To take care of myself. I mean, there are also the big things, but, practically speaking, for parents who just don't have a lot of time, which I think is most of us, you have to just be aware of the ways that small things can really make a big impact. 

So whenever I'm feeling like a migraine’s coming on, or I feel really sluggish and tired, or maybe I'm bored, I almost always take a sip of water or drink a glass of water. Probably sounds really inane, but a lot of times, over half the time, it helps. It really does help me. It gives me that pause to allow myself to reset and to reevaluate; Okay, what do I need to do in this moment? I'm feeling activated, or I'm feeling really flooded and overwhelmed. And what can I do about that? So just taking a sip of water sometimes is helpful.

Another thing that's super helpful for me is to step away and go outside because nature is very grounding for me. And so just like taking a few deep breaths of fresh air, which isn't always possible when it's like sub-zero weather, but doing that and just observing what's around me, noticing the little robin or noticing the squirrel with the acorn or the changing colors of the leaves… really, again, it probably sounds cheesy or trite, but for me, those are things that help me get enough of a grasp on how I can become centered again within myself, and then resume to the chaos or the tornado or the conflict or whatever needs to be addressed in the moment. 

Erin: Yeah. You're activating all five senses in those activities...brings down that anxiety level.

So, what has your experience been like advocating for your children’s medical, educational, and emotional needs?

Jeannie: That’s a big, big question. I am very much at an advantage because I have a master's degree in school counseling. So I learned how to be a liaison. I learned how to connect parents and children who have whatever kinds of issues, whether they're gifted, or they have an IEP, or they have some sort of medical diagnosis, to connect them with the resources that exist in the community and within the school system.

So I know how to do that. And even though I don't practice as a school counselor anymore, I definitely use those skills. And I think for those in your audience who are listening, who don't have that background, which is probably most of them, I would say that it's just really important to gather as much information as you can about whatever you're dealing with in the moment. Whether it's maybe a newly diagnosed learning disability, or maybe it's a new diagnosis of some sort of neurodiversity, since we're focusing on that today, or maybe your child has a…they had some sort of an accident. They broke a bone or something, and they're going to be out of school for a while. You have to really just gather a lot of information about what you're facing. What is this specific diagnosis? And what's the long-term lens that I'm looking at? Like is recovery going to be three to six months? Is this a lifelong thing? And then you have to be able to use that information to communicate with the people in your child's life. So, communicating and making sure there's coordination of care between or among educators, medical staff, mental health practitioners. 

I also think it's very important to be proactive. So try to have some foresight in saying what might happen or could happen or is possible. Not in an anxious sense, not like you're expecting the worst. But that you're recognizing that there's a possibility, or even a likelihood, that something might develop from this because…maybe 95 percent of other people who have this, this is usually what happened. And so having some foresight to just keep it in the back of your mind that this might be something you're going to have to face…helps kind of lessen the blow if and when it does actually become a reality. 

I think that a lot of what it means to be an advocate is just really being informed and educated and also being able to communicate clearly and consistently with all of the people who are involved in your child's care.

Erin: Have you ever hit walls where the players involved were not helpful or didn't see the bigger picture that you were trying to get them to see?

Jeannie: Absolutely. So that's where the gritty part of my nature comes into play, and I realized that some people have more of a non-confrontational temperament than I do. And I'm not saying I like confrontation. I'm just saying if someone is offering bad advice, which has happened, I'm not afraid to say, ‘I'm not sure that that makes sense for our situation,’ o, “Actually, I've consulted some other families who have kids with Apert syndrome, and it sounds like this might be an option that's really good. Could we talk about that?’

There's a way to say something to gently push back without being disrespectful or combative. And so I've just had to artfully learn how to do that. And there have been times where, you know, we just walk away from a provider who is not willing to listen or work with Sarah. Or maybe we've done this tug-and-pull where I compromise a little, and they compromise a little, and it's just not working. 

And I think that's another part of all of this as a parent is we have to just recognize when something isn't working, and we have to be okay with it. Whatever the consequence or result might be of that hard conversation. But if it means that you're really providing, or making sure that your child is provided with the best possible quality of life, if that's my motivation, I feel okay with having to deal with a medical practitioner who is arrogant or narcissistic, and they think that they know everything and they don't want to admit that they're wrong. I'm okay with that, because I also feel very much at peace in knowing that I communicated in a way that was respectful. I listened to what their opinion was. I accepted it. I thanked them for it. And yet, at the end of the conversation, it just wasn't a good fit. 

Erin: And do you feel like that confidence that you have really goes back to coming to the realization early on that you were meant for your kids, and your kids were meant for you? I mean, your purpose is so clear, unapologetically, brilliantly, and beautifully.

Jeannie: You're such an encourager, Erin. I really appreciate that. It's…I don't think about myself as a mom in that way. I'll just be honest. Whenever I have to make a decision about my children, I always end up feeling like…second guessing myself, doubting, questioning, Did I really do the best I could? I often feel like a failure as a mother. It's interesting for me to hear the observations of people outside of my head because dealing with my own insecurities about what it means to be a mom, a good enough mom, a good mom, I don't know, is, it's really tough. 

So I think it does go back to believing that…having that core faith that my child is meant for me and I for him or her. And also just allowing myself the breathing room not to get it right or to do it imperfectly or maybe do it partially because I have to accept my humanity too. And so often, the times when I've struggled the most, and I've had the most resistance or the most anxiety in my life about being a mother, is related directly to the fact that I have these impossible standards and expectations of being this perfect mom, which doesn't exist.

And so, again, going back to like those little things...taking a breather, going outside…sometimes I just need some room to think. And being able to be aware of what's going on in my body. What are my thoughts? What are my feelings? And going back to this understanding that, okay, I can give myself a pep talk. I can remind myself that it's okay that I'm not really sure what to do. I'm doing the best with what I have. If I mess up, I can still go back and say I'm sorry…I can try to fix what I can. But at the end of the day, I have to be able to let it go, to kind of surrender the what-ifs or the unresolved parts of being a mom. Because there's just so much that's weighed upon us. I think that causes this immense amount of guilt and shame. 

Erin: Well, and the expectation that we know what we're doing, your children have never been the age that they are today. Why would you know exactly how to approach it? This idea that we are supposed to know everything, always, is just…I don't know where that comes from. But it's such a burden, I think, for parents…

Jeannie: I think it comes from, partially society…at least the Western culture that we live in. There's a lot of pressure on mothers, specifically on women.

So this, to me, is kind of that whole conversation, which could be a whole separate segment, right? About the pressures that we face as mothers because of societal expectations. So it's a systemic issue. That's part of it. Another part of it, I think, comes from the generation we find ourselves in.

So I can tell you that the influence upon my expectations as a mom comes from the way my parents raised me and their expectations. So knowing that my parents had this certain standard that was expected of them. They then passed that same level of expectation on to me. And so that's just kind of part of that deconstruction or unraveling and trying to rebuild a healthier, more balanced perspective.

Erin: You do a beautiful job in your writing about that. 

Jeannie: Thank you.

Erin: So, what advice would you give to other parents who are just starting their journey of advocating for their kids? Is there anything specific? Certain strategies or resources that are your go-to's that you think would be universally helpful or even just attitudinal? 

Jeannie: Yeah, I think you need to find a really strong support network. So if you found out your child was diagnosed with autism, try to find a local support group of other parents. Make sure that the information you receive about the diagnosis, you kind of explore it, find out what part of this applies to my child and what doesn't. And sometimes, there are more glaring issues, and sometimes there are non issues. And so you don't have to overwhelm yourself by addressing everything. Just make sure that you're dealing with one segment of the diagnosis at a time. And like I said earlier, make sure that you are collecting the information you can about that.

Educate yourself, talk to people, ask a lot of questions. I think that this is where curiosity is really, really important to just give yourself permission to freely ask as many questions as you need and don't feel like anything is off limits or stupid. Make sure that you're communicating with the mental health, medical, educational staff that your child is involved with or dealing with.

And then you have to make sure that, above all else, you are advocating for your own needs. So you're going to have to set boundaries with the people in your life. You're going to need to let go of a lot of expectations or maybe activities you're involved with. You're going to need to say no more often. You're going to need to rest and really address the needs that your mind, body, and soul need. 

Erin: Can you give us a practical example of what that looks like in your daily life? I think people can feel overwhelmed, especially at the beginning of an unexpected challenge and just having one example gives them a jumping-off point.

Jeannie: Sure, that's true. When Sarah was first diagnosed, I felt overwhelmed with everything. So where I am now is very different than where I was back then. This isn't going to apply to everybody, but for me, it was honestly journaling. Honestly, so the fact that I could sit down to a blank page and there wasn't necessarily a set time or a designated duration of time because of the chaos and unpredictability that I was thrust into.

But if I had that notebook, and I could sit down and I could write whatever I wanted, uncensored, just let it all come out on the page...there was something very liberating and cathartic and empowering about that for me. And I realize that not everybody's a writer, but I don't think you have to be or find yourself or see yourself as a writer specifically for this to be a helpful exercise because what you're doing is you're kind of allowing the blank page to be this source of unconditional support. You can say whatever you have to say or need to say, and you don't have to worry about judgment or criticism or bypassing or dismissiveness or minimizing. 

You can be who you are. And a lot of times, that will lend itself to a sense of strength, like renewed strength and vigor. So I would say just like doodling, drawing, writing a poem, writing a letter to yourself, jotting down notes, bulleting bullet points or something. But being able to do that even for a few minutes a day. It was very, very helpful for me.  

Erin: Yeah, moving those thoughts and feelings outside of your body onto something else probably solidifies what is important and what isn't. Or what do I need to respond to and what can I let go? 

Jeannie: That's right.

Erin: Well, I know we're close to being out of time, and I'm just so grateful.

Jeannie: Likewise.

Erin: I feel like we're going to have to come back and do a part two or part three.

Jeannie:  I would be happy.

Erin: I know you've been working on a book. Will you tell us a little bit about that and how your personal experience with your children has been woven into that?

Jeannie: So I've written my manuscript. It's not published yet, but it's called I Grow Strong Again. It's a memoir about how motherhood has shaped my identity, and I talk about a lot of different topics. I talk about not wanting to be a mom, never using contraception, how that led to five kids, thinking that I was going to have this certain sort of family, and then I have a family of very unique kids with different diagnoses.

I talk about postpartum depression and how that really led me to understand that I was neglecting myself and how I reassembled my life and reconstructed my identity. So that's, in a nutshell, what that's about. 

Erin: And where can people find you?

Jeannie: Yeah, so I'm very active on Substack.

That's where I would point people to because I post weekly. I'm usually on notes every day. It's under my name, Jeannie Ewing. Or you can find me under I Grow Strong Again. 

Erin: Well, thank you so much for your time and for the work that you're doing. I feel like your work is very specific to your story, but there's something in it for everybody…as a human, as a mom, as a daughter, as a parent. I just feel like there are so many connections for people. 

Jeannie: I like hearing that, Erin. That's great. I really want people to feel heard and validated and understood through the work that I put out. It was great connecting with you again. I can't say it enough. It was a delight. So thank you.